Chapter 5 Managing Pain

1.      What is pain? 

Sylvia:  When I was in hospital this last time, it was because I could not get past the pain.  I became debilitated with it to the point that I could not even function and take care of myself in my own home.  At the time I was hospitalized I was depressed because the amount of pain had worn me down.

Pain is an enigma, a paradox, a puzzle unsolved.  Scientists have been able to locate the source of pain in our brain, and establish a way to measure an individual’s pain by the amount of Substance P we are producing in our spinal cord to try and alleviate pain.  It is possible to say the most people with Fibromyalgia have three times as much Substance P as a normal person.  But we have no way of comparing one person’s pain to another’s.  The term pain threshold is batted about to anyone suffering it, a doctor can only guess if your pain is extreme or minimal, depending on if your pain threshold is high or low.  It is common for us to compare our suffering to what we imagine is someone else’s.  But how can we know that our hours and hours of what we consider excruciating pain are actually less painful than our friend’s pain during a single migraine attack?  Is my pain threshold lower than hers, so that less pain affects me much more?  Is the amount of pain she experiences actually less than mine by some standard measure science hasn’t found?  Does the location of pain make a difference?  Surely the existing condition of the person in pain has to be factored in?  We can only come from our personal experience of pain, and that causes a lot of complications in the lives of those around us.

Maxine:  My family knows that I keep most of my pain to myself.  The best way for me to deal with it is through denial that it exists.  If they ask me about it they are asking me to focus on it.  As most of them deal with pain the same way, this works for us.

The need to move past pain and get on with life is common among the people I interviewed. Many of their family members and friends witnessed how bravely they face the day without complaint, even though they are in pain.  But this leaves a lot of room for miscommunication.

2.      How do you talk about your pain?

Veteran sufferers don’t talk about their pain.  Depending on the person, this can be for a number of reasons, or a combination of several.  A great many expressed concern that they would be given pity or be perceived as whiners.  Some don’t talk in the hopes of protecting their loved ones from emotional pain.  Some are deep into the martyr role.  And some think there is little point.  “Talking about it doesn’t make it go away,” she’ll say.  This commendable choice to put the best face on things often has a backlash.  In refusing to acknowledge we are in pain we cause those we are trying to protect frustration and a feeling of being left out of our lives.

Realizing, then, that reticence is a roadblock to understanding on the part of your support team, it is in everyone’s best interest for you to develop a communication system for pain.  Those around you love you but they’re not mind readers.  You have probably been giving them mixed signals for a long time.  One day you snap at them if they ask how you feel, the next you complain that they’re insensitive and not taking your “horrific pain” into account when they ask you to do something with them.  Or they might ask and you bravely respond “I’m okay” when they can clearly see you’re not.  Does any of this sound like you?  I know I’ve played all these games and taken my poor spouse, children, parent and siblings through a roller coaster of uncertainty.  I think I am typical of a chronic pain sufferer.  But while we’re acting like a weathervane in a hurricane we are modeling poorly for the people in our lives, and teaching them the same dishonest responses for their future handling of pain.  Let’s all grow up and model commonsense roles to each other.

“There is not a day I don’t have pain. If I didn’t have pain that wouldn’t be normal.”  Carrie

 a)     Tell them when you are in pain

 It is important for you to know that caring and support are available when you are in pain.  It becomes your responsibility to keep those who have expressed concern and a desire to help informed at the level that allows both of you peace of mind.  However, I am not telling you to do a ten-minute monologue on “what hurts today”.  I am telling you to keep them informed.

Phillipa:  It is only in the last years that I’ve been able to communicate to them, “ this is what to look for.  This is what you need to know.”

Maxine:  I talk about how I feel with close friends and family who ask because they want to know.  I measure this carefully.  If they are already loaded with their own problems or just asking to be polite, I usually segue to another subject without telling them I’m bad.

“Everybody in our family tends to cope like a duck.

You can’t see that under water we’re treading like hell.”  Jeanette

 b)     Tell them when you’re not in pain

You can alleviate some pressure on those who care if you volunteer information when you are having a good day or are pain free. Usually its such a surprise to me I don’t catch on at first.  But when I realize what’s different – that there is no pain right now, I share my jubilation with everyone.  It immediately brightens their day, too.

This helps everyone who matters feel better because it lessens their worry.  Sometimes a pain free day results in your ability to do a little extra physically.  This is a great day to plan a surprise treat for the family.  Maybe you can say “Let’s all go out to dinner while I’m feeling up to it,” or “Let’s have our friends over for coffee, and dessert, I felt good enough to make pies.”  Your joy in being pain free can spark new joy in them.

c)      Give them a status report

So ideally then, you want to let everyone on your team know how you are that day. The simplest method is to make an announcement first thing in the morning.  Members on your team will then automatically pass this information on to others who care or need to know.  An announcement should be brief and to the point.  Eliminate emotion-grabbing descriptions of your pain and stick to the facts.  If you tell your husband and children “The pain is horrific, I feel like dogs are chewing off my leg”, you are going to leave them feeling like you’re just “ripped their guts out”.  Rather give them a status report and a comparison. “My pain is severe, but slightly less than yesterday” will allow them to factor in how you behaved yesterday, what you needed done for you.  It encourages them.  If you want to model good pain management you can add a positive comment like “but I know I can handle it today” or “we did a good job yesterday so it’s slightly better today.  Yea team!”

You also have to deal with many other people in your life who may not even know you are ill.  Consider the grocery clerk who keeps you standing in line while she chats endlessly to her customers.   As your experience increases, many of you will prioritize protecting your health over worrying about some one else’s feelings.  No, I’m not telling you to be rude, there is always a diplomatic way to state your case.  However, I am telling you that you must learn to take care of your needs rather than stay quiet out of the misguided desire not to embarrass someone.  Remember the clerk and the people in line don’t know there is something wrong with you.  You’re suffering an invisible disease.  So state your needs – tell them to their face “pardon me, I am in considerable pain and wonder if you could have your chat later.”  This brings them to an awareness of the situation around them.  Most people will respond quickly to a nicely spoken need in another.  Telling them to their face includes requesting a chair in a waiting room, a seat on the bus.  It means explaining to great aunt Tillie that you must sit down while she tells you in detail about her gall bladder surgery.  It means explaining to your grandson that you can’t pick him up and swing him like you used to.  It’s simple.  It means being honest with others.

d)     Use a set of signals

You may feel that making an announcement every morning is drawing the spotlight onto your self and making a bigger deal of your pain than necessary.  Some families, especially where children are involved, come up with a set of signals.  This can become a game in which everyone takes part.  You may have a whiteboard with a scale from one to ten and throughout the day you register your pain level on it.  Most probably it will be lower in the morning when the family members leave the house.  But science has proven that pain levels go up in the late afternoon, as chemical changes occur in our body.  Therefore, when the kids come in the door after school you are probably feeling much worse.  It is important for them to be able to make this distinction.  You might have a series of signs for the back door – ranging from “happy woman with fresh baked cookies inside”, to “witch demanding silence has taken over the house, enter at your own risk”.   Make your Pain Register a family project and let your imaginations go wild.

A set of secret signals should also be developed between you and your partner and children and other adults who are actively involved in your life.  You will want signals for social occasions.  Waving a white flag or tissue might convey to your husband “get me out of here before I scream”.  Shifting a book from one side of your bed to another might be your signal that the visitor has stayed too long and a child or adult should invite them into another part of the house.  You might signal “I don’t wish to discuss my health”, “no, please refuse the invitation I don’t feel well enough”.  Again, a signal is not a method by which you dump the hard jobs on other people.  You are perfectly capable of stating “thank you for inviting me, but I don’t feel well enough to attend.”  The signals are for times when the person with you needs to know your response so they won’t inadvertently catch you in a situation that causes you more pain.

e)     Don’t play the martyr

Several women I know have made this role their life’s work and honed it to perfection.  The martyr is about being dishonest – with yourself and with others.  More seriously, it is about manipulation – my particular hot spot.  It almost always adds to the dis-ease of the situation and your physical condition.  Why?  Because in order to play the martyr effectively you have to work yourself into the self-pitying, hard done by, willing to sacrifice it all role that means you are sending many negative messages from brain to body.  Martyrs play word games “that’s okay honey you go ahead and watch TV, I’ll get the dishes done, even if it does take me all night.”  A preferable response is something my mother-in-law always says.  “It doesn’t take long when there is two of us.”  So share the chore with someone, then you can both enjoy what comes next.  Above all, sink your pride, stubbornness or whatever else is getting the way of asking for help when you truly need it.

2.      How can my support team help me deal with my pain?

a)     Help them recognize the signs of pain

Phillipa:  There is a part of me that feels that my husband and daughters should be able to tell when I’m in pain.  When I start shrinking into myself and getting more and more non communicative it is because I’m getting sicker.  Maybe over time they have come to be able to see that and understand it, but it has only been the last few years.

Those closest to you often know you well enough to recognize the physical changes that indicate you’re in pain or pick up on the signals you send out when you are in pain.  Dealing with chronic pain tends to happen in stages, and those around have to follow through the stages or they get lost in the process and never clearly understand what to look for.  The first stage is easy to tell.  You are in pain without doubt.  you express this freely.  You might be experiencing this much pain for the first time so you are frightened and anxious.  As you experience long term pain you begin to adjust to it. There is less fear and anxiety, so you are less tense and more competent at coping, so you exhibit fewer physical signs.   Those around you will learn to read less noticeable signals to know you are in pain.  Finally, you become so used to the pain that those small signs also become less noticeable.  You may be using distraction and other methods to cope, so you are not focused on the pain any longer.  The veterans dealing with pain have a new set of signals.  It might be that they become quieter (instead of moaning) or pull back (instead of participating).  Most often those in severe chronic pain say little about it and put on a cheerful mien.  But the physical signs are there.  Your skin will seem stretched more tightly on your face, be more transparent and take on a grayish pallor.  You hold yourself more carefully, you move more slowly and a lot less.  If the players on your support team are astute and have lived through the process with you, they will recognize these signals as well.

b)     Draw a line in the sand

The line sets your physical limits.  Beyond this line you do not go. It is for your benefit as much as anyone’s.  If you’re typical of someone with chronic dis-ease, you tend to push yourself past your point of no return.  Now you have to learn where your limit is and make wise choices around it.

Rose:  Sometimes you are hurting, your whole body aches and you just want to curl up and stay there all day; but you get upset with yourself because you haven’t accomplished something that day.  This causes depression or mental harm to you.  But if you put pressure on yourself to get up and perform you over do it physically and harm you body.

Far too often we let others decide what is best for us instead of listening to our inner voice. We can do a lot of damage before we wise up.  Once we do start making good choices, we must ask our support team to respect them rather than undermine them.

Lily:  People think they’re doing a good thing when they encourage you not to quit.  Often it has harmful effects instead.  They need to realize you’re an adult and making the best choice for you.  I skipped a curling team for years.  At a certain point I knew I could no longer do a good job of it and I said I was stepping down.  But so many in the community refused to accept that answer.  They coaxed me into doing it again.  Of course I was right.  My body wasn’t capable of delivering the rock with the speed and accuracy of before.  By allowing them to influence my decision I had to face my limitations.  If I had just quit, as I planned, I would have been left with the hope that I could still do it on my good days.

I had always been an over-achiever, Type A personality and blamed my need to constantly achieve on the influence of my Type A sisters and parents.  Even my husband expected me to produce the best, the most the fastest.  I forced myself to do this for many years, hating every minute of it, but unable to see that it was me, not my sisters, not my parents or husband making the choice. Around the time I turned 45 I started listening to my body’s demand for quiet time and solitude. A wise friend helped me to see that they are a NEED, like air to breathe, rather than a WANT, the indulgence of a lazy person.  While I forced myself to constantly “Go” and “Do” I did irreparable harm to my body.  But that mistake taught me an important lesson.  Now I “stay” and “be”, existing in the moment and listening to the needs of my body, mind and spirit.

It takes a strong person to understand and set limits for herself/himself.  If you’re suffering dis-ease you have a head start.  You are already in the process of being “refined to gold” and have discovered strength in yourself you couldn’t imagine having before your diagnosis.  Use your strength to protect yourself.  Set limits around how much you can do for your community, family and at work.  Negotiate time for yourself to rest and exercise.  Make wise choices around when, where and how to socialize.  Learn to say no to people you respect at work and people you love at home.  It is hard, but it is imperative if you want to safeguard your health and return to wholeness.

Carrie:  I ask my friends to phone ahead and tell them I am not into drop-in visits.

Sylvia:  I protect myself now.  For instance I used to go to my husband’s Christmas party at work because I knew it made him feel good.  But there were so many smokers it really affected my lungs and I’d be in pain for days after, so now I say “No”.  If we’re supposed to go on a holiday and I know it’s not going to work for me I will stay home at the last minute and my husband and son will go without me. I no longer feel I am letting them down, because if I push myself to go, I know the damage I do to me is just as upsetting to them as not having my company will be.

c)      Ask them to distract you

People who suffer chronic pain learn over time many ways to cope with it.  One of the easiest and earliest learned techniques is distraction.  Ask others to talk to you to take your mind off your pain.  You may want to hide in television, videos, music, games or food.  Others can help by providing you with CD’s, tapes, and videos, playing games with you or sharing a TV show and your couch. Any thing that takes your mind off of pain for even a millisecond becomes as valuable as a magician’s newest trick.

Humor is probably cited as the best distraction of all.  There is no situation I can think of that isn’t improved by adding humor to it.  In a speech she presented, Susan Hall, whose business card describes her as a professional volunteer, ends with this:  “I choose to laugh and be grateful for everything I have … including my disease.  It’s my life and I’ll laugh if I want to.”  I think she describes what the majority of you feel.  Anyone who cares for you becomes your accomplice in the search for giggles, guffaws, belly roars and back slapping, stomach hugging, rolling around of the ground hysterical appreciation of “funny”.   Ask them to drive you to the library for a fresh supply, or bring in the paper so you can read the comics.  They will be delighted to help you bring more laughter into your life.

Carrie:  About five years ago I had MS regression and lost the ability to walk for a time.  My husband was carrying me down the hall to the bathtub.  I got a fit of the giggles and it spread to him.  Soon we were laughing so hard he was weak.  He couldn’t stand up and leaned against the wall, holding me and laughing.  He sort of slowly slid down the wall, laughing all the time and saying, “I’m sorry, I’m sorry”.  We didn’t even know what we were laughing about.  There he sat on the floor with me in his lap and we were both shaking with hilarity.  Laughter is a release valve for what we are going through.

d)     Ask them to touch you

Touch is what I call the saving grace.  When you are lost in the pain, weakened to the point of certainty that this time it is going to win, a touch reminds you you’re not alone.  When tears ride the surface of each breath touch calms you.  When thoughts of death tiptoe forth from the shadowed corners of your mind to tempt you, touch brings you the clarity of light.  Touch is a savior to those in pain.

“This pain will never kill me it will just leave me to suffer.”  Sylvia

One of my favorite things someone could do for me when I was in hospital or convalescing at home was to rub my feet.  In honesty, I’ll take a foot rub over sex most days.  One of the best laughs I ever had when I was ill, was when my little six-year-old daughter asked what she could do to make me feel better.  I was home after a five month stint in the hospital, and faced weeks more in my bed.  So I thought I’d give it a chance, and said, “Honey, I’d love it if you’d rub my feet.”  She thought this pretty peculiar – not being interested in anything but tickles herself, but earnestly she found the lotion and squeezed it into her tiny hand, while her teeth almost bisected her tongue.  Then she climbed onto the bed and lay on her stomach looking at the bottom of my feet.  She was small and almost disappeared behind my ‘pointing to the ceiling’ toes, and the pillows that elevated my legs.  Suddenly, a slippery little finger poked out from between two of my toes, coming toward me fast.  It looked so ludicrous, felt so wet and out of place that it started me laughing.  My daughter forgot about the foot rub in her eagerness to launch herself on Mommy and join in the fun.  We laughed ourselves into limp fishlike forms, then laughed some more.  What therapy!

But I truly learned the value of touch and foot rubs when a neighbor of mine visited me in hospital.  I could tell my depleted shriveled body and all the tubes where causing her empathetic pain.  She wanted so badly to do something to help me.  She asked, hesitatingly, “would it bother you if I rubbed your feet?”  You know the answer to that!  My spindly legs found the energy to get themselves on top of the blankets fast.   We visited, catching up on the neighborhood news, while all the time her gifted hands worked magic on my feet and turned me into a pliant blob.  I was so appreciative, expressing my thanks then and after, that it gave her the idea for a ministry.  Shortly after she told me that she had arranged with one of the hospitals in our city to go in two afternoons a week and give foot rubs to the patients that wanted them.  I know firsthand the pleasure her touch brought them.

When resources permit, I visit Lynne Thompson, a trained Reflexologist.  This is great therapy for me.  Not only do I have my feet rubbed by an expert, but other parts of my body are being healed at the same time.  I have noticeable reduction in my symptoms when I am able to afford reflexology on a regular basis such as 45 minutes every three days.

Here again if you want your team to help you handle pain it is important that they know your likes and dislikes.  You’ll hardly distract an academic by having a bubble-blowing contest or a child by reading a doctoral thesis.

4.      How do I manage my pain?

Carrie:  I guess I feel that I handle it well enough that it doesn’t totally debilitate me.  As long as I’m functioning, I don’t think I can ask for more.  At times it is almost beyond my control – but no.  I can get past it.  When I was in the hospital this last time it was because I could not get past it, and since them I have learned coping mechanisms.  I had become debilitated by pain to the point that I could not function and take care of myself in my own home.  I was depressed because of the amount of pain wearing me down.

a)     Clinical Therapy

I had been referred to a pain specialist at the MGH Pain Clinic.  She prescribed medication, which completely eliminated the burning, neuropathic pain I was experiencing.  This was a tremendous relief and I would urge any patients suffering from pain to consult a pain specialist as I did.  The medication prescribed for pain also had a positive effect on the quality of my sleep and improved my mood as well.[1]

I too, was referred to a Clinical Psychologist recently for treatment of intensive prolonged pain.  Of course with the over-burdened health system it was months before they could take me.  When they phoned to arrange an appointment I said I had managed my pain on my own and was now much better.  I didn’t feel I should take up a specialist’s time when someone else was in intense pain at the moment and needed their help.  I was told that is not the way the system worked.  If I didn’t take the appointment it wouldn’t go to someone in immediate pain, but to the next person on the waiting list.  I was advised to work with the specialist now and use the technique when my pain resumed.

I then had ten sessions with intern, Natalie Frenz, in the Clinical Psychology Department of Health Sciences Centre in Winnipeg.  She did me enormous good.  I revisited some techniques I had let slip as I returned to good health, and she taught me some new attitudes and perceptions around dealing with my pain.  I was expected to do homework that helped me to measure my pain over a period of weeks, review my coping techniques and form new habits that would help me.  I was taught the Gate method for controlling pain, worked on relaxation exercises and received many helpful tips around dealing with my pain.  I use them most effectively now.  I strongly recommend that you ask your doctor for a referral to a Clinical Pain Therapist.  Or, if you are watching a loved one in pain, who is not dealing with his pain productively, urge him to seek help from a specialist.  It changed my life for the better.

b)     The Gate Method of Pain Control 

In 1965 Ronald Melzack , a McGill University psychology professor, and Patrick Wall, a British physiologist published their influential “gate-control” theory of pain.  They believed that instead of a single pain centre, many parts of the brain were involved in processing our pain signals.  Melzack further theorized that we have a centre in the brain that is influenced by sensory input and inheritance.  This neuromatrix generates the feeling of pain that we think is coming from the body.  Melzack emphasized that this does not mean suffering is imaginary.  “In a lifetime of research, I can count on the fingers of one hand the number of people I’ve met who faked it [pain] for one reason or another,” he concluded.

“I measure my pain by the amount it prevents me from functioning.” Phillipa

The Gate Control Model I learned to use effectively was designed by John Wiley and sons and was taught to me at the Clinical Psychology Department Health Sciences Centre in Winnipeg.  Pain travels from peripheral fibers throughout our body, to pain fibers, to the Gating mechanism at the base of the skull, to transmission cells and then to the brain.  When we have our Gate open the pain feels worse.  There are physical, emotional and mental triggers that open the Gate.

  • Physical triggers include:  the extent of the injury, the degenerative change, the extent of residual scarring, the amount of muscle tension.
  • Emotional triggers can be: anxiety, worry, tension, anger or depression.
  • Mental triggers depend upon:  your degree of focus on the pain,  your level of boredom, your beliefs and attitudes about pain, or your lack of control over pain.

When we have the Gate closed we feel better.  We can close our Gate by:

  • Physical: drugs/counterstimulation/surgery/reduced muscular tension and arousal
  • Emotional:  relaxation and calmness/reduced anger/reduced depression
  • Mental:  distraction/external focus of attention/attitude of active coping

How can you apply the Gate exercise to alleviating your pain?  It works like this.  Imagine your pain fibers are registering a pain of +6 on a scale of 1-10 (10 being the most pain).  Physically you tighten your body adding +1 to your pain.  Then you mentally focus on the pain which adds +2 to your pain level.  You are now at a pain level of +9.

If instead you recognized your pain level of +6 and do something physical to alleviate it like use a heating pad or take a pain killer, you possibly reduce it by -1.  Then if you distract yourself (mental) or work at being calm (emotional) you might reduce it by -2.   Now you are experiencing pain in the region of +3 instead of +9.  What a difference!  And you make the choice which level of pain you have.

Sylvia told me that one of the best things she had done to reduce her pain was to find a multi position bed she could afford by phoning hospitals and finding one that was replacing some beds and willing to sell her a used one for a few dollars.  Sylvia came up with this creative solution by listening to her body and identifying what was causing her more pain – the bed she slept in.

c)      Deep Breathing

I do Smart Women[2] workshops on The Whole You – Body, Mind and Spirit  or Taking Care of You – Job #1 across Canada.  Of all the tools I hand on I most like to share the technique for deep-breathing. This coping device is totally under your control.  You can do it anytime, anywhere and experience immediate relief (to differing degrees according to your condition).

In order to breathe correctly, sit or stand tall.  Roll your shoulders back and down.  Feel your chest open up.  With head straight, chin level, think of yourself as an elegant water vessel, tall, slim and wider at the top than the bottom.  Great, you’re looking good.  Now think of filling that stately vessel with water.  It flows first into the bottom of the vessel and then rises to the narrow neck.  When you deep breathe correctly, the air becomes the water, your body the vessel, your lower diaphragm the bottom and your throat the neck.

Deep Breathing should be done to a count that stays regular.  Try breathing in to the count of four, hold for two, and breathe out to the count of four.  As you breathe in think of bringing pure air into your body, and breathing out the bad air (the impurities).  These days of high pollution levels you need a good imagination for this part.  Focusing on your count, deep-breathe for 5-10 minutes 2-3 times a day.  At first you might have to stop after just a few minutes because you feel dizzy.  You may be hyperventilating.  Keep a record of the amount of time you do your deep breathing daily and see if you can increase that time over a few weeks.

As well as reducing pain by acting as both a distraction (the focus on counting) and a relaxation device, deep breathing has many other benefits.  By oxygenating your body you increase your energy level and speed up your reflexes.  By feeding oxygen to your brain you raise your level of concentration and creativity.  And by feeding your spirit you lighten your outlook on life.  When all three parts are in play, you experience a higher level of well-being that augments your ability to cope with pain.

d)     Relaxation Exercises

The first thing that pain triggers in your body is a tightening response of the muscles in the area of the pain.  This has the effect of increasing the pain and drawing a greater amount of your attention to it.  As the amount of pain, and your focus on it increases you may become upset, angry, frustrated and anxious.  These emotions then correspondingly elevate the level of tension in certain muscles.  You are now caught in a viscous cycle.  Muscle tension increases pain and pain increases muscle tension.  The use of relaxation exercises is the best technique you can apply to this cycle.

It is necessary for you to develop the skill to relax at will.  This is no different or harder than learning to bake bread or change the oil on a car. It does, however, require regular and consistent usage over a series of weeks or months to add it to your repertoire of coping techniques.  Practice on a once a day basis allows you to become aware of the specific needs of your body – to identify the pain and localize the muscles reacting to it. The quickest relaxation exercise, once you are skilled, is to focus on relaxing that muscle group at the same time as you deep breathe.

Maxine:  Last night I was lying in bed and my stoma was killing me. I t felt like someone was pouring lemon juice on an  open cut.  When distracting myself through prayer and then visualization didn’t help, I started my deep breathing.  I should have done that first.  I focused directly on the pain and the source of the pain, and all the tension that was building in my body parts.  Every time I exhaled there was a span of time when the pain receded.  When I increased that span I gained a longer space of pain free time.  My muscles began to relax as I focused on my breathing, instead of my emotional response.

A more highly developed relaxation exercise is combining your deep breathing with a pattern of clenching or unclenching your muscle groups.  This is best done lying on your back in a comfortable position, with legs slightly apart and feet falling loosely outward.  Your hands angle away from your body, palms up. [You are lying in the Corpse Position for Hatha Yoga.]  Stretching out in a comfortable recliner will also work if you are no longer able to make it to the floor, or try lying on your back in a bed.  Push your chin down to your chest. This stimulates the Thyroid and Pituitary gland and helps you to produce Seraphim that eases the pain and Endorphins that give you a sense of well-being.  With your eyes closed roll your eyeballs forward as if you were looking at your chest.  Studies show that this causes a change in the pattern of your brain waves that results in increased relaxation.  Now begin your deep breathing and starting at your feet and working upward deliberately tense then relax each muscle group in your body.  Time your breathing to the squeeze and loosen pattern of the exercise.  Use the same count for each muscle group.  If one area holds more tension than another does, simply repeat more times without changing the length of time you tense those particular muscles.

Sylvia:  When my pain is getting worse I can feel myself getting tighter and tighter.  My body feels like an elastic band stretched to the limit and about to break.  I focus on relaxing my muscles instead of the pain, just making them softer.  I figured out a while back that this makes me hurt less.

There are many variations of relaxation exercises.  Each person creates his/her own pattern and style.  I have done it in a lounger with a Pain Specialist leading me through the exercise.  There are tapes available that will offer you this same experience.  You can learn Relaxation exercises by taking a Yoga class or working with a Clinical Pain Therapist.

This can often be a ‘quick fix’ solution to your pain, if you catch it in the early stages.  But regardless of the level of your pain, if you use a Relaxation exercise you will feel better.  Choosing when to use it is up to you.  I find it particularly helpful if I am having an anxiety attack in the middle of the night and my entire body is tense.  Some people like to start their day with a relaxation exercise using it as a preventative technique, and some call it up on demand, knowing they have developed the skill to the point where they can trigger the relaxation response in a matter of minutes.

Jocelyn:  When my pain becomes bad at work, I know I can’t leave.  I pay attention and when I feel it becoming insistent I try to get a few minutes alone.  Usually I can do a mini relaxation exercise right in my desk chair, focusing on just the area that is hurting.

e)     Visualization

Visualization is the ability to build a picture in your mind.  This exercise takes so much focus that it is a form of distraction from pain.  Used together with deep breathing it can produce a calming effect.  I have found it the best tool for dealing with short-term pain combined with anxiety.  For example: Use this method when you are anxiously waiting to see a specialist, undergoing an uncomfortable test or treatment, caught in a situation of standing too long in a grocery line or waiting too long in a doctor’s office.  All of these things have in common the need for patience and the need for distraction.

Think of something sensory that you love.  The first example of visualization I ever read about was used effectively by a woman who had been terribly damaged in a car accident.  In moments of anxious waiting or pain she would envision a rose slowly opening its petals.  She would imagine everything from the blushing color, the prick of the thorn, the scent, the feel of the silken petals against her cheek and the tiny dewdrop winking up at her.  While she opened the rose petal by petal in her mind she was unable to think about her pain or her fear.

My favorite is imagining a golden light shimmering around my body.  The light protects my body from further harm or pain.  Inside the gold outline, I imagine white light spreading through my body as I focus on the area of pain and relax it.  The brighter the light, the more relaxed my body becomes and the less I feel the pain.  I am actually drawing on the energy force that is in all living things.  If you have a good imagination and hone this skill, you not only defeat pain and anxiety, you actually head out on virtual adventures.  Those hours alone begin to pass more quickly.

f)     Meditation

Meditation encompasses the whole you – body, mind and spirit.  It combines deep breathing, relaxation exercise, distraction and visualization to give us a beautiful and restful experience.  This may be a technique you choose to share with other members of your family, creating a haven in which to find peace in the present and produce harmony for later.

  • Focused Meditation

Focus on some object, a candle flame, wind chime, flower – whatever draws your attention.  It is the first stage in hypnosis, using the same principle of focusing on an object while being persuaded to relax.  Although a specialist usually does Hypnosis, you can develop the ability to hypnotize yourself.  By focusing so fixedly on an object that you shut out all other sensory stimulation, and by repeating a message to yourself, such as “Peace, Peace,” you can cut yourself off from the pain.  Yoga practisioners use a Mantra or repeated sound often a deep humming noise that focuses the breath and centers the person meditating.

  • Centered Meditation

This is an advanced stage of focused meditation.  It requires a great deal of practice and concentration.  Instead of filling your mind with an image like the candle flame and focusing totally on it and the mantra you repeat, you attempt to empty your mind completely.  This method of relaxation is considered highly therapeutic in the Far East, and according to some Hindu cults, it is the highest form of meditation.  It is now being practiced throughout North America.  By completely emptying your mind of all thought, all focus, you leave it open to being filled by the ultimate truths (from God, a universal energy, or whatever source you believe in).  You can see that you would gain the ability to empty all messages of pain – to remove yourself from the pain.  This technique is well worth the years of practice it takes to master it.  And face it, most chronically dis-eased have the time to invest.

  • Guided Meditation

Guided meditation is a take-off on Visualization.  Here though, someone else is building the picture in your mind.  Often it is done in a group, or one on one with a therapist.  There are excellent meditation tapes and CD’s on the market that you can listen to at home or in your office during a scheduled rest period.  This type of meditation is best done over a longer period of 20 to 30 minutes.  By visualizing yourself in a beautiful setting and doing the things that bring strength, comfort, stimulation and hope into your life you feed yourself positive messages.  These become like psychosomatic candy, a treat, that increases the well-being of your body, lightens your spirit and stimulates your mind.  It is one of my favorite forms of coping with pain.  I am including one of my short meditations for your use.  If you like it then I suggest you read it into a tape recorder or have someone, whose voice you respond to, tape it for you.  Enjoy!

Guided Meditation

Make yourself comfortable. Lie on your back and support your legs with a cushion or towel under your knees to prevent back strain, or curl into the fetal position on your side if you have a back injury.  If you are on your back your chin should be slightly elevated, your eyes closed and focused down toward your chest.  Your feet are falling loosely to the sides, your hands should be at 30 degree angles with your body, palms up, fingers relaxed. Take a deep cleansing breath.  To the count of 4 breath in through your nose good air, pause, to the count of 4 breath out through your nose bad air.  You are a clay vessel you must fill with water.  The water comes in and fills the bottom of the vessel first, then the middle and finally the neck.  It empties from the top down.  Breathe in the good – fill yourself, breath out the bad air – empty yourself.  Consciously relax your body and continue to breathe to your count.

Imagine yourself in a small cabin in the midst of a luxurious forest.  You step to the door and breathe in.  The air smells fresh, clean like it has just been washed.  The rising sun strokes a finger of gold across your cheek and you lean into its welcome.  Anticipation bubbles inside of you, for today you are going to climb the mountain to visit a dear friend.  You know who that friend is.  Imagine your friend in your mind – mentor, counselor, most wise and most loving – full of compassion.  [PAUSE] 

Because you are eager to come into this presence you rush back into your cabin and toss a bright red apple on top of the things in your backpack, then carefully you place a parchment scroll where it will not be bent.  You shrug into the pack and step out onto the path with great energy. 

The morning sings to you and your spirit responds, rising high like the drifting butterflies that dance ahead of you on the path, soaring like the birds that dart from tree to tree.  The forest is alive with the chatter of a squirrel, the call of a magpie.  A rabbit waits at the curve of the path, then darts ahead of you as if leading the way.  You climb steadily in the shade of pine, aspen, fir and poplar, birch and willow all sighing together in a light breeze.  At noon you come to a clearing in the woods.  A pool has formed in it, fed by a gurgling brook.  The water sparkles and swirls in a complex dance as it finds its way over moss-gowned stones.  As you draw closer it changes a beach of pebbles into sparkling gems.  You shrug off your pack and rest upon a smooth boulder at the water’s edge.  You peel off your shoes and socks and rest your feet in its coolness, smiling as tiny bubbles rise to tickle your soles.  You crunch your apple, letting the juices run down your face in perfect freedom and licking them away with relish.  The sweet tartness stays on your tongue as you lie back and blissfully soak up the sun.  You dose and breathe deeply in time with your heartbeat.[PAUSE] 

But soon a passionate duet between two larks awakes you and you pull on socks, shoes and backpack as you listen.  You turn your face upward to where you know another cabin perches on the side of the great mountain and you begin to climb with new energy.  The trees thin, and more rock appears.  You hear the crunch of crushed stone beneath your boots, you smell the dust hanging in the air.  You are climbing steadily now, and you feel your heart racing and hear your rapid breathing and don’t know if it is because of the exercise or your growing excitement to see your friend.  Your fingers rasp across rough stone as you lever yourself higher, noticing the tiny seedlings thrusting upward from the unforgiving rock.  They are as fragile as your dreams, but you have seen other seedlings grow to mighty trees.  You believe anything is possible if you have the strength to endure and the conviction that what you want is worth enduring – like this climb, which has become more difficult.  Your whole body begins to ache and quiver with strain, but your smile is more generous, your heart is lighter because you are almost there. 

You pull yourself over a ledge and see the small cabin.  Your friend is watching for you in the open doorway.  No longer aware of your tired body, you race toward the first warm embrace, feeling safety, security, comfort, strength and unconditional love.  You step inside the cabin together and sit at a polished table covered with a cloth that looks like the sun was woven through a field of violets.  There is a picture of lemonade beaded with condensation.  Your tastebuds leap with anticipation.  There are thick wedges of shortbread that melt in your mouth and small scones loaded with cream and oozing strawberry jam.   Each mouthful is a pleasure you enjoy in total peace as your friend’s smile radiates from across the table. 

When you are replete you reach into your backpack and lift out the scroll.  You place it in front of your friend feeling a deep certainty in the words you have written there.  You want to share this conviction, this new step in your life with your friend.  You hold your breath as the friend pulls off the leather thong binding it and unrolls it.  The parchment is bright white, the black letters stand out in sharp relief.  They are the words that express your [goals for the months ahead].  You see them written in your mind and say them silently as your friend reads.  [PAUSE] You watch your friend’s face and see the deep pleasure, the perfect understanding, and total acceptance of what you plan to do.  You know you are strong enough to do it alone, that you don’t need approval of the goals you have set, but it brings you great peace to have them validated by this presence whom you respect, love and honor. 

The sun has moved into the west window of the cabin forming a brilliant nimbus around your friend’s head.  You sit a moment longer soaking in the love and the approval of your dear companion; then you rise to begin your journey home.  You know the trip down the mountain will go much faster, and you are excited because in climbing it you have taken the first step toward reaching your new goal.  But there are many other actions to take now, and they are crowding into your mind, stimulating your imagination and fueling your energy.  You know your dear friend will be there whenever you need affirmation, comfort and strength.  You know your dear friend is inside of you, a part of the love you give yourself and others.  You know with great clarity that you can make this happen if you commit to it and continue to take action. 

And now it is time to rise and take action.  In your own time, open your eyes and lie quietly reacquainting yourself with your surroundings.  Slowly turn onto your side and curl your legs, pushing up onto your elbow and then to a sitting position.  Do it in your own time.  Then take a few deep breaths to oxygenate your body before moving to a standing position. (end)

g)     Distraction

If you are blessed, you have people in your lives who help to distract us.  Being able to count on them for laughter, an interesting conversation or even a heated debate is a comfort to you.  However, much of the time you are chronically ill you will be alone and must learn to distract yourself.

Distraction is so much a part of our cultural message that we do it for ourselves automatically.  We distract ourselves through sensory stimuli.  An anxious person may gorge on good tasting food, an angry person might thump a drum or dance up a storm.  Many people distract themselves with audio and visual stimuli.

Sylvia:  I have terrible pain in my back and chest.  I use a heating pad to distract myself from it. I put it on so hot that I have permanent marks on my back.  I go through three hot pads a year.

While Sylvia uses intense heat to distract herself from the pain, the opposite happened to me.  I allowed an interesting conversation to distract me from the pain of a hot coffee mug I was resting on my thigh.  I too have a permanent mark.  I do not recommend this form of distraction to anyone.  Frankly, it hurts.  There are much kinder, gentler ways to distract yourself.  Turn into a video junkie (on a temporary basis), or focus on a book, prayer or game.

Carrie:  I will tune into something like a ticking clock and that will help [distract me from my pain].

Booster Box

Buy a birdfeeder and hang it outside the window you look through the greatest part of the day.  You can use binoculars to get close-ups of bird spats and to check their coloring.  The entertainment provided by the birds is a nice pain distraction.  Sylvia

h)     Positive Self Talk 

The psychobiological loop is a feedback loop between the mind and the body where thoughts and feelings create a specific pattern of muscle use, which in turn reinforces the thoughts and feelings and thus a particular set of related physical, mental and emotional reactions is perpetuated.  In other words, being aware of the mind/body connection can greatly increase your chances of wellbeing.[3]

This is a tool that is all about attitude and making choices.

“I don’t want to sound like Pollyanna, but that is exactly what it is.”  Carrie

 We can choose how we are going to feel about having pain and what we are going to do about it.  Positive self talk works on the mental part of the Gate Method helping us close the gate against pain.  I talk to my pain.  I say things like,  “I’m comfortable with you, I’m at ease with you, I feel you leaving.  I am not going to feel the pain.”  You too can feed yourself effective positive messages.

i)       Physiotherapy

This is most often done as a consequence of a doctor’s referral.  Physiotherapists are trained specialists who understand the skeletal and musculature design of the body, and how one affects the other.  They use massage, heat and cold, exercise, and many new forms of technology, such as TENS (transcutaneous electrical nerve stimulation) machines, to alleviate pain by blocking or diverting it where it originates at the nerve.  Physiotherapy is done over time, often months or years.  It is not a quick fix.  It is an effective way to alleviate pain caused by inflammation.  Because the cost of Physiotherapy is covered by the Health Care System it is often difficult to access.  If the demand is too great for the number of physiotherapists available, you may have to wait too long between appointments and lose the benefit of regular treatment.  It is possible to pay for private treatment but the costs are high, and few of us can sustain them over time.

j)       Massage Therapy

This form of massage and treatment is accessed through private clinics.  It provides a great deal of pain relief.  Again, trained professionals who understand the workings of your body do it.  If you are going to a massage therapist make sure they are fully aware of your health problems.  They should ask you to fill out a health profile on your first appointment and keep it as confidential as any other medical professional.

k)     Exercise

There are two types of responses when the chronically ill decide how they will use exercise to handle their pain.  Psychological terms for these types are “Avoider” and “Overactive”.

A common thing that happens when people diagnosed with a chronic disease begin to suffer pain is that they pull back to protect themselves from pain – Avoid it.  They may stop all forms of exercise and take to their bed.  They believe this avoidance pattern will keep the pain from escalating.

Sometimes this is an early treatment recommendation from your physician who advises you to “wait and see” if, when an injury is healed, the pain will disappear.  But in chronic disease the patient is not healed completely and the pain may not go away.  Damage occurs when avoidance goes on long term.  It will result in poorer fitness caused by lack of circulation, stiffening joints and weaker muscles.  It may also lead to depression and frustration caused because you are now unable to do the things you love.

The Overactive heads off in the opposite direction.  They are determined that the pain and the disease will not beat them, and push themselves unrelentingly through physical activities.  They become even more active than they were in the past, increasing their exercise load until they are stopped by excessive amounts of pain.  It then takes them a longer period to recuperate and begin activities again.  They do much better when they introduce balance to their exercise regime.   If you’re an Overachiever you may not be aware that you are doing too much – you are using exercise as an avoidance technique.  It takes an observer to recognize what is happening – someone like a mom.

Lynne:  The most frightening time for me was when my daughter was exercising.   I would visit her and I would go with her to her classes.  I’m in good shape, and I couldn’t keep up with what she was doing.  And she was so thin, so obsessed with exercise.  I worried because she didn’t have an extra ounce of fat on her body, and fat cells allow you something to draw on if you’re not eating enough.

It is important at the onset of a chronic condition to become informed as to the amount of pain you can expect, and the best way to treat it.  Diseases that inflame the soft tissue or joints can produce high levels of constant pain.  It is necessary for you to find a balance between too much exercise that further inflames the tissue and too little that allows the tissue to tighten and hurt worse.  Daily exercise to keep that balance is highly recommended by the medical profession.

One of the safest exercises is swimming.  This helps to reduce overworking your joints because the water carries much of your weight.  If you are able to find a warm pool year round the heat also is therapeutic.  Being cushioned by warm water, as you work your joints and muscles to keep them flexible, is a soothing way to alleviate some pain.

Walking is another easy to access, easy to control exercise.  You choose when, where and how long.  This feeling of control gives you an extra sense of safety and encourages you to exercise more frequently.  Most studies on exercise say that walking 20 minutes three times a week will add to our state of well being.  If we walk 40 minutes three times a week, fast enough to break a sweat, we will lose weight, as well.

Often the cause of pain is outside your control.  You may be doing everything right and suddenly pain, like an annoying relative, comes for a visit and refuses to leave.  Anyone suffering from inflammation of tissue or joints will tell you they are affected by changes in the barometric pressure.  Most tell you too much heat or cold will also affect them.

Carrie:  We took our old van on a holiday.  The weather was really hot and we didn’t have air-conditioning.  I can’t function in the heat.  We had to turn back and cut the holiday short.

l)       Drugs

“Medications are generally very effective in short-term use of acute pain, but unfortunately they have been found to lose their effectiveness and become of questionable value in the management of chronic persistent pain.  Paradoxically, as the effectiveness to reduce the pain decreases, the side effects increase, as do the physiological psychological dependencies of the user.  When the effectiveness of the medication decreases and the side effects become annoying or uncomfortable, it is time for the physician and patient to re-evaluate the situation and perhaps find alternative methods to manage chronic pain.”[4]

  • What 

Drugs for the treatment of pain are generally divided into three categories:

1)   Peripherally acting analgesics (Aspirin)

2)   Centrally acting analgesics (narcotics)

3)   Adjuvant analgesics (barbiturates, anti-depressants, tranquilizers, anxiolytics, and muscle relaxants)

Sylvia:  Most people have never known me not on narcotics.  I go off of some every few weeks because I want them to continue to be productive.  I know I am going to have a bad week when I go off narcotics, so I plan it. I pick a week when I know I haven’t anything major on that I don’t want to miss.

  • When

It is important to know your body well enough that you can recognize the signals.  Pain has its uses.  It can’t just be designated an evil thing when it is actually our early warning signal that something is wrong in our body.  Pain becomes intolerable when we avoid those early warning signals.

Carrie:  I know when I need to take something so it doesn’t get away on me.  I will sometimes get up and try to walk to help alleviate the pain, but with my legs are so weak I can only walk so long and then I’m beat if the pain hasn’t gone.  Then I know it is time to resort to medication.

Holding back on your medication out of fear causes new problems.  Pain control is more powerful if medication is taken on a regular basis rather than  “Just when I can’t stand it a moment longer”.  By holding back you use the drug only when the pain is at the highest level and actually increase your pain by raising your emotional response to it.  You experience anxiety and panic, and an increased focus on the pain opening The GATE wider.  By taking it on a regular basis, particularly for chronic pain sufferers, usage is determined by the clock rather than your level of pain.  When you have an even dosage of narcotic or analgesic in your system throughout the day, it lessons the chance of the pain getting out of control.  There is a theory that when pain relief clearly comes from ingestion of the pill that we are physically and psychologically more dependent on the drug.

I’m extremely drug sensitive.  There are very few chemical drugs I can tolerate. I tried to ration their use so that I would not build up a resistance to them and have nothing left to help me.  I refused to take anything until the pain was so excruciating for so long that I could no longer hold out. Then I would down an extra strength Tylenol  (all I could tolerate) and expect it to kill the pain.  Of course it couldn’t do a job that big.  Now I have learned to toss that pill in shortly after the pain begins.  I catch it early and stop it before it grows intolerable.

  • How much

Far too many people have become dependent on narcotics during years of dealing with the pain of chronic disease. It is a frightening fact, and one that many of us are so aware of that we actually let our fear of dependency keep us from using something that will make our lives more tolerable.

Many, many times I was given too high a dosage of medication.  I would tell them I was extremely drug sensitive and ask them to start me on a quarter of what a normal person took.  They wouldn’t believe me and give me a normal dosage.  I was overdosed on Demerol, morphine, codeine, antibiotics, steroids, antidepressants and hormone therapy.  Each time there were dreadful side-effects and I paid the piper for their refusal to believe I knew my own body best.

Sylvia:  I have a friend who uses Gravol for a sleeping pill.  I take Gravol with every pill I take.  I can take two narcotics and literally go shopping.  I get a shot of Demerol at the hospital and go to the mall.

Are you get caught in a never-ending cycle of symptom, drug, side-effects, narcotics to deal with the pain of symptoms and side-effects, more side-effects from the narcotics and on and on?

Sylvia:  I go off of a narcotic when the dose is no longer helping me.  If it’s not doing anything for me why swallow it?  If the pain gets too bad before I can get back on it, I try something else like maybe Morphine.  But it makes me sick and I vomit and vomit. But it’s better than the pain and using up the ability to deal with the pain later.

Sylvia found if she threw away any unused pills the doctor is not currently prescribing she could not be tempted to take them along with her current medication when she was in a lot of pain and desperate enough to make poor choices.  This might be an effective way to add safety to your medication schedule. 

  • side-effects

Although narcotics might alleviate some of your pain, they can cause a whole new set of problems.  It is important to understand the side effects of the drugs you are on (ask your pharmacist for a list of side effects for each drug your doctors prescribe).

Many Doctors don’t tell you the symptoms of a drug because they think you might psychologically manifest them.  I would rather be informed of what the possible side effects and consequences could be so that I can recognize what is happening if I get a side effect.

Being left uninformed causes extra worry and confusion and can sometimes be dangerous if you don’t pick up on a side effect early.  But, a list of side effects is no help, unless you really pay attention to your body and register what the drugs do to you.  Each of us reacts differently to a drug and a combination of drugs.

Sylvia:  I am hospitalized four to five times a year from a few months to a couple of weeks.  An awful lot of these stays are drug related, from trying to get established on drugs or having reactions and having to be treated for them.  I often don’t know if drugs for the Lupus, or drugs for the pain cause them.  I remember last year on my birthday I told my doctor I had this spastic thing in my leg.  He gave me something for it.  I went home on a day pass and I just kept getting worse.  I said, “I hate to go back after one hour out, but I’m in trouble.”  I remember as I walked out the door I saw my pills and remembered I hadn’t been taking them.  But by that time the condition had moved to my head and I couldn’t swallow the pills my throat was so tight.  My husband called ahead and had a doctor ready and by the time I got into the hospital they were calling Code Blue and getting a team together.  The doctor consulted with a neurosurgeon in another city to see what they could do. They tell me I had a reaction to the anti-nausea drug my doctor prescribed. 

I remember one time I was suffering so much pain and feeling hyper and jagged and having major anxiety attacks.  My doctor told me it is the way I manifest depression and she put me on an antidepressant.   I turned into a zombie.  I couldn’t think, barely moved and was in such a trance like state life had no meaning.  I remember my husband and I flew our plane to Calgary for a visit.  I barely knew when we took off or touched down.  When I got to my sisters house I said “I can’t stand not being part of the world.”  I went off the drug immediately which was the wrong thing to do.  I had been instructed to phase myself off of it. You and those around you must be aware that when you are on drugs you are often not your “normal” self.

Sylvia:  If I’m on enough of the narcotics, I honestly don’t feel like I can make a decision or function.  I will be lying on the bed thinking “How did I manage to organize that event last month.  Something will go round and round in my head for days and then it will occur to me that I have a husband I can talk to about it.  I have a mother, Lupus friends but I don’t think to go looking for help.  It’s difficult for me to focus, thoughts are scattered.  Half a thought jumps into my mind and before it’s finished another is there. Then again, when I’m on  Salumedral, Cortisone or high dosages of steroids I’m wired, trembling, visibly jittery, hyper.  I can go for days without any sleep and not feel fatigue.  It’s a false sense of well being because I can clean all my cupboards, wash floors, do all the things that while I was confined to my chair I couldn’t do.  It’s very high energy. 

  • fear of addiction

When I was in the hospital for my thirteenth surgery, my surgeon asked me to visit with another of his patients.  She was always ten surgeries ahead of me.  She was using one of the newly designed machines for administering her own drugs.  When she left the hospital she took pain cocktails all day long.  I was really frightened that if I took anything for pain I would end up as drug dependant as she was.  I refused almost all pain medicine and suffered a lot more than I had to at the time. 

I imagine you can add to these horror stories on of your own.  While drugs played an important role in alleviating your pain, allowing you to live a fuller life, they may also be a source of great frustration and fear to you.  If you are overly concerned about getting addicted to the drugs you might make poor choices.

Sylvia:  I am so afraid of the side effects of taking one more pill that I will quit cold turkey and then end up in ER.

  • keeping track

Knowing you will be on many drugs concurrently means that you have to come up with a system for keeping track of them.  Pill sorters allow you to see if you have taken the medication that day, but do not help you to remember to take it at the right time.  At first you start out with the times you need to take your pills, but as you get more familiar with how they work for you, you begin focusing not on the time you took the pain killer, but on how long it will last.

Sylvia:  I record when I take my pills each day.  I know one medication takes 45 minutes to kick in and the 24 hour drugs take about 2 hours to begin working.  So I think I took the pills at 3:00 p.m., but I’m not going to get relief until 3:45 p.m. from one and 5:00 p.m. from the other.  With all those numbers in my head I start to think “When did I actually take it?”  “When do I take it next?”  So I have a book by my chair and I jot down the time, the drug and the amount.

Matthew:  Nowadays I adjust my sugar levels through insulin and not diet.  I check my blood sugar levels 4-5 times a day.  Now the equipment is so fast, you have pen cartridges instead of needles. You inject yourself in a second even through your clothes.

m)   Holistic or Alternative methods 

A high percentage of people suffering chronic illness look in the direction of alternative medicine for help.  They have many reasons for doing this, but primarily they are concerned about the harmful effects long-term drug use will have on their bodies.

Some of the alternative method for pain control those interviewed shared with me were Massage Therapy, Raki, Reflexology, Cranial Sacrel work, Acupuncture and Herbal supplements.  To get into the holistic methods would take the word count of another book.  I have chosen not to include them.  However, I feel many have positive benefits and are therapeutically effective.  I recommend that you explore these options in conjunction with finding effective ways to deal with your pain through your medical doctor.

n)     Changing your diet

Dr. Neal Barnard maintains there are certain foods that trigger pain, inflammation, stiffness, diabetes.  Barnard traces the origin of some of our foods like milk, corn, wheat, meat, eggs and caffeine and explains that while as a species we have the ability to adapt to new substances, many individuals do not.  They cause reactions in our bodies that exhibit the previously mentioned symptoms.  Barnard explains that if these foods killed us before we reproduced, only those persons that didn’t react would pass their resistance on to their children.  But we seldom die before we procreate, the long lasting affects of food allergies hit us when we are older, with diseases like Heart disease, Diabetes and arthritis.[5]

If we are good at listening to our body’s messages, we don’t need to read Barnard.  But few patients of chronic disease are in the habit of listening to their bodies.  A typical Type A is too busy doing to be aware of silent signals.  Even if you are Type B or C, our society has not encouraged you to take the time to be still and pay attention to what your body is saying.  Earlier I pointed out that our body tells us if we need extra vitamin C to fight a cold – we suddenly have a thirst for orange juice or a desire for citrus fruit.

A baby, likewise, tells you from day one what it’s body needs or rejects.  But how many adults laugh at the disgusted wrinkle, and ignore the little hands trying to push away the spoon.  You generally get a message when the baby spits her beets all over you, or when you child is projectile vomiting after a glass of milk.  But you clean up the mess without being aware of the underlying problem – your child is sensitive to these foods, at this time.  Your pain is often telling you that you too are allergic to something you are ingesting.

Barnard is convinced that by eliminating some or all of these foods we can considerably improve our health and reduce the amount of pain we experience.  I highly recommend this book as a conservative method for getting your disease and pain under control, before you try more invasive, extreme measures.

Here are a few dietary changes you can experiment with immediately.  According to Dr. Bernard, researchers have a high rate of success in eliminating pain with these changes.

  • If you suffer inflammation, hot joints or arthritis eliminate dairy products and citrus fruits
    • If you suffer angina, blocked arteries, high cholesterol, heart disease eliminate all meat, dairy, fish and eggs – in other words eat a Vegan diet
    • If you want to give your immune system maximum help in restoring dead cells and fighting disease add a high quantity of green veggies, particularly artichokes, asparagus, spinach, broccoli, collards and Swiss char.
    • If you want to give your body the best chance at being pain free and healthy eat a Vegan diet.  That means eliminating everything but grains, fruits and vegetables.  Factor in your specific triggers.

The people of India use Fennel to eliminate pain caused by gas in the intestines.  Dr. Elizabeth Thakkar, Calgary, recommends fennel tea for people suffering Crohns, Colitis and IBS (Irritable Bowel Syndrome).  She says drinking Fennel tea, or eating the seeds following a meal helps to reduce pain.

In more recent years, studies have indicated a considerable improvement in health with the use of gluten free diets. If you are suffering Crohns, Colitis or IBD, your doctor may have recommended this diet, and probably you have experienced relief from many of your symptoms. Doctors are also recommending it for other invisible diseases, where exhaustion is a major symptom, and they are getting good results. I recommend you discuss gluten free eating with your physician.

Any coping technique for pain is going to affect our whole being. There are many avenues down which to seek relief.  I have found many of the above methods a great help in allowing me to get more out of life.  By conquering a new means of pain management we cause another ripple to form.  It moves inward soothing our body, mind and spirit.  And secondary ripples flow outward relieving the worry of those who love us, inducing understanding and respect in those we work with and lightening the load on our caregivers.

Controlling pain is about putting mental and physical faculties to work simultaneously.  You’ve looked at the physical impact of chronic disease on you and both the physical and mental coping techniques for pain.  It is now necessary to explore the way the disease impacts on you mentally, so that you can continue to be proactive in dealing with pain and other issues of the disease.


1.  Make a list of when, where and how much pain you experience over a week.

a)      List the triggers of the pain (activity, food, physical problem etc.).

b)      Using the Gate method of pain control list beside each source of pain the mental and physical changes that will help close the gate.

2.  Make a list of the people that distract you.

a)      Beside each name write how this person distracts you.

b)      Arrange for them to spend time with you each week doing that activity.

3.  Introduce new coping techniques for pain to your routine one per week and select those that have the best results.

4.  Keep a log of your medication dosages and times taken.  This will help you keep track day by day, and offers a way of tracking cause and effect or side effects of the drug.

5.  Read Foods That Fight Pain and other books on this topic.

a)      Eliminate trigger foods for your particular disease and note the results.

b)      Add foods that bolster your immunity and improve your condition.





[1] Kathy S. Rabin; presented at the National Institutes of Health CFS “State of the Science” Consultation; February 2000. Published by CFIDS Association of America

[2] Smart Women (revised and updated), Barbara L. Thrasher and Maxine A. Smid; Macmillan Canada; Toronto; 2000.

[3] The Mind/Body Connection Mend The Body, Tune Up The Mind, 1999; taken from

[4] “The Role of Drugs”, Dr. Lesley Graff, Clinical Psychology Department, Health Sciences Hospital, Winnipeg, MB

[5] Foods that fight pain.  Neal Barnard, M.D.; Harmony Books, New York; 1998

Chapter 4 Physical Impact

1. What are the symptoms of “Invisible Diseases”?

a) List of Symptoms

Exhaustion – you experience an increasing inability to find the energy to meet the demands of your day. It is caused by an accumulation of stress, sleep disorder and the need foryour body to fight the antigen, therefore depleting the energy you would normally put into daily activities.

Sweats – this is a combination of anxiety, possibly brought on by stress and the physical way your body works to eliminate toxins.

Inflammation – depending on the disease inflammation can be localized to joints, or encompass soft tissue and joints. Again, it is your body’s way to protect itself against a perceived antigen.

Swelling – accompanies inflammation, as the body fights the disease. These areas ofyour body are often warm to the touch and sometimes reddened, because of the increased blood flow as the immune system battles the antigens in that area.

Rashes – often follow inflammation as an outward sign that your body is at war with an antigen.

Pain – usually the result of inflamed tissue and joints, but can be caused by inflammation in organs as in Lupus patients with systemic disease.

Hemorrhaging – often internal hemorrhaging takes place in the inflamed area, because of ulceration. We see this is Crohns, Colitis, and sever IBD.

Diarrhea – with bowel diseases this is a common problem. Inflamed tissue leads to the digestive systems inability to work at capacity to withdraw moisture from the waste being processed. As your body tries to help the system (particularly in the instance of a partial blockage or obstruction) it floods the intestinal track with extra liquid which increases the symptom.

Weakness – some diseases like MS, Fibromyalgia, Lupus and Crohns result in weakening in the limbs. This often comes as a surprise to the person with the disease, who is walking well one minute, then finds her legs won’t hold her the next.

Dizziness or fainting – as the disease continues, you may be worn down by pain and lack of sleep. You may be more prone to experience dizzy spells and may even suffer short fainting spells.

Poor Vision – if you have an acute case of Crohns, Diabetes and Lupus you might experience problems with vision, that worsen in ratio to the rate of inflammation in your body.

Tissue damage – can result because of the inflammation. It may occur in the skin, joints, blood, organs and other tissues.

Tics – this twitching of muscles, triggered by nerves, may occur when you are chronically stressed

Side-effects – of your treatment or medications may cause you to experience dry mouth, palpitations, constipation, vertigo

You may experience a few of these symptoms or all of them, or some I haven’t mentioned. When they hit all at once, you are in physical hell. There is no one out there who knows exactly how you feel – even another person with the same disease. This is because an autoimmune disease is as unique as the individual experiencing it. You may have similar symptoms but to a different degree, at a different time of day, brought on by a different stressor or trigger; and of course each person copes with the symptoms differently. The one thing you all should do is to treat your symptoms seriously if they persist for more than a few days.
Jocelyn: He had nights sweats that weren’t normal. He kept working really hard on renovations on the home. My mother and I pressured him to see a doctor and finally he went just to get us to shut up. He found out he had an enlarged heart.

Jocelyn’s husband can be thankful that the women who cared about him insisted he go for help, when he persisted in ignoring an important symptom. If you have the courage and commonsense to find out what is causing your symptoms, the next step will be adjusting the pattern of your life to deal with them. Any disease impacts considerably on your physical well-being.

b) Your body’s signals

It’s time to listen up. What is your body telling you? If you are like the majority of North American’s, your body is shouting at you, “slow down, take care of me, I’m not feeling well any more”; and finally in dismay it screams “ARE YOU DEAF?” Too many of us are! We consider a headache as a hindrance, sore feet as an inconvenience, exhaustion unfair. We push on, refusing to pay attention to the mechanism put in place by our creator to help us stay well. We even take pride in it. We’re so brave! (Umm stupid? )

Some pain is a good thing – it is our built in early warning system. The trick is to listen so carefully that we deal with pain or symptoms immediately before they become severe. “I can’t afford to slow down,” you argue, “I have too many people depending on me.” But meeting the needs of your body is the easiest thing to justify. After all, If you continue on, ignoring the pain, the symptoms accelerate until you are no longer able to work. You come to a complete halt. And during that lost time you’re not there for the “people depending on you”. It’s more productive to set a pace that balances your body’s needs with your desire to produce.

Pain, swelling, rashes are the loudest signals your body sends out. However it talks to you constantly. If you are smart you stay tuned in. You hear when it asks you for specific things. It calls for spicy foods when it wants more energy. It requests complex carbohydrates with the B Vitamins when you are stressed. It craves juices loaded with Vitamin C when you’re suffering through a cold. Your body tells you when it needs more liquid, when it must be fed, and when eating will harm it. It cries out when it is tired and must rest, and insists that you allow it to get rid of waste. Introduce harmful agents like tobacco, alcohol, caffeine to your body and it produces symptoms to warn you to take care. Do you listen?

Learn the patterns of your body. Recognize when the rhythm changes. Know the song it sings when it is healthy and the lament it moans in dis-ease. Befriend it, love it, accept it, and it will return tenfold all the attention you give it.

Symptoms are not the evil genies you’re programmed to believe they are. Instead they’re a sophisticated warning system – much like the best security plan for your house. Each symptom gives you a heads-up there is something wrong with your well-being. You may fail to turn on the warning system. It doesn’t fail you. Ideally, you should hear the alarm go off and get help, soon enough to catch the disease in an early stage (one foot through a window) and stave it off with prompt treatment. But what generally happens? You delay until the burglar is already in the house, and serious damage is done. Now the disease takes hold of your body and you experience increasing physical changes. With each change you are forced to identify what is happening, recognize each time it is happening, begin to adjust to it happening and finally accept that it will happen. It is liked hearing the alarm and being robbed over and over again. You must also take into account the time you will wait until the police arrive, or in other words you get medical attention. With the long waiting lists for tests and surgery in our health care system, an early warning system is your best defense.

c) Children’s reaction

Children experience a whole range of physical symptoms just like adults. And though not exclusively a child’s reaction there is often a noticeable change in a sick child’s well-being, that is a combination of physical and mental problems. They appear to lose skills they had mastered. For example, your six year old might suddenly forget he is potty trained and defecate in his pants. Your ten-year-old might begin to wet the bed. A baby might suddenly make shy when she didn’t before. These signs of lost maturity are often accompanied by a decrease in socially accepted practices. Your child might throw tantrums, refuse to do something, become incapable of social interaction with peers or adults. The child might begin to withdraw. Hopefully, these behavior patterns will diminish as health returns, or a chronic state of illness provides the experience necessary to help the child adjust to a new way of living.

Gail: I had asthma so badly I was isolated by my illness, then I isolated myself to avoid being hurt by the other kids.

Individual adjustment depends on the child’s cognitive [thinking] process prior to the illness and how much he or she had already developed. Return to a state of normalcy depends also on the child’s previous coping capacities, prevailing parent-child relationship, current family situation and the psychological meaning of the particular illness.

2. What physical losses might I experience?

Every one of the autoimmune diseases causes some type of physical problem. With many you just don’t have the energy to do the things you used to. With heart disease you just can’t because of angina pain and fear of a heart attack. Here are some of the physical limitations experienced by others who have “invisible diseases.”

a) Loss of strength

Lily: I can’t lift my children or my grandchildren. It was really hard to accept. The first time I realized it I was babysitting and couldn’t lift the baby out of the crib. I had to phone a neighbor to come and lift her into my arms.

Robert: It was really hard in the beginning because I had to ask people to do things I used to do. I had to wait until they were home from work to ask them to help me lift something.

Sometimes the loss of strength forces you to accept the limitation of a cane or even a wheelchair. Some of the people I interviewed refused outright their doctor’s orders to use a cane for support, safety and to aid the body while it recovered. Some said the idea of a cane was repugnant, that it made them feel “old and useless”. Often a cane is the first outward sign that there is something wrong with you. Many refuse it out of the fear of not appearing normal. If you too refuse, you will handicap your body’s ability to heal itself.

b) Loss of mobility

Others fight the use of the cane until their body refuses to do the job without it. Once forced to accept the limitations of a cane over being trapped on a sofa or in bed, they adopted quickly. Maybe this story will put it in perspective for you.

Carrie: Having to use a cane was such a hard thing. I was only 24 years old. It was probably vanity. I said, “A young woman doesn’t use a cane.” It made me feel old and dependent. Now I look back and say, “How ridiculous.” My disease [ past the invisible stage] until I had to use a wheelchair, and now I have a motor scooter. I love it, but I’d take the cane over the chair or scooter any day.

If you are willing to see the cane as a tool to increase your ability to function, you will soon realize how it improves your life. It’s like getting a third leg. You become more sure-footed, confident and balanced. A cane adds to your choices.

You may have lost a different type of mobility like the ability to bend over to pick something up, or stand straight or turn in circles, to lie on your back in bed or square dance with your wife. Each of you is dealing with a loss you must overcome either by invention or acceptance.

When I was having trouble walking because of pain and didn’t have a wheelchair, I would sit in a castered chair (kitchen or office) and have someone push me. If no one was there I sat in the chair and used a toilet plunger to move myself. Sylvia

c) Loss of Endurance

You might think about not being able to run a marathon now, but losing endurance keeps you from doing the simplest things like dressing yourself, getting from the car to the doctor’s office, cooking a meal or working overtime on that deadline. You just run out of steam and the only thing persevering will get you is a series of small accidents and a flood of tears. The loss of endurance is the limitation that teaches you to prioritize what’s the most important thing that you have to do today, second, then third. You learn to stop your list at whatever point your body signals “enough”, without feeling you have failed.

d) Hair Loss

Sometimes cause by the medication you’re on or a treatment, sometimes caused by stress, changes in your hormone levels or malnutrition, hair loss causes a whole new set of problems. Beside the practical problems of how to look good enough to go out the door, hair loss causes a lot of emotional feedback. There are professionals available to help you make the most of this situation and customize the solution to what works best for you. When I lost 60% of my hair due to malnutrition, the first time, I tried wigs, but found I did not feel like “me” while wearing one. The loss of identity was harder to deal with than the loss of hair or concern about my looks. When I lost my hair the next time it grew in curly and for several years I had the best hairstyle of my life. Alas when the greater percentage fell out again, it grew back in straight and white, and I spent years coloring it. I have recently grown it out to my natural color, which is beautiful silver. I feel great and more me that when I colored it. You may take to hats, or put it all out there and shave your head. There are scarves and hairpieces. I bet you could even get a hair tattoo. Don’t choose to hide from life and the people that care until your hair grows back.

e) Loss of bowel or bladder control

i. Incontinence is not usual for people with invisible diseases. However, it might be a short term problem because of several reasons. It may be caused by pressure due to inflammation in parts of your body, or pressure on your bladder. It may be caused by pressure on nerves or damage to them. It may bet the short term results of a test or medication. It is certainly something you want to discuss with your doctor as soon as possible. He’ll be able to help you understand if it is a short term or chronic condition and how to deal with it. There may be medication to help alleviate the symptom. And there are many great products on the market today, so you can continue to be active and involved.

ii. For sheer stress there is nothing worse than searching madly for a bathroom when you’re in public and expect to have an accident any second. As one sufferer of IBD said, “Let’s face it, pooping your pants is just not acceptable.” This is the life of someone with Colitis, Crohns or IBD when it’s not under control. Here is a story that tells you just how physically and emotionally taxing this problem can be.

Naomi: I was with my husband in the Bahamas. He was at a conference and I was shopping. Suddenly I had an attack of IBD and I desperately had to use the bathroom. I was near a restaurant we had gone to two nights in a row, and I had sort of made friends with the owner. Hunched over, holding the tearing pain in my gut, I managed to get to it. It was closed, but there were people inside. I knocked on the window. The owner came and told me it was closed. Dying of embarrassment, I said, “I desperately have to use your bathroom.” He told me they were closed and when they would be open. “But you don’t understand” I said, and told him my humiliating problem. He just closed the door on me and walked away. By this time, I was drenched in perspiration. I had to keep stopping because of the pain. I’d have to crouch over and give myself a talk, “You can do it. You can hold it. It’s passing now.” I managed to get back to my hotel. But it was a terrible experience and most of the people I saw didn’t even know I was in trouble.

Like Naomi, you may be a working adult in a high profile job. You may have an established social life, and group of close friends and suddenly your life is out of control. Yet, because you have an invisible disease, and your bowel movements are certainly nothing you talk about in public, they will not be aware of the tremendous strain you are under in just trying to appear normal. Someone will say, “let’s all go to the ballgame and we’ll take my car,” Naomi shared with me, “I panic at the idea. If I have an attack and have an accident in my car, that’s one thing. If I have an attack in someone else’s that’s panic.”

Because you are unwilling to communicate your problems in this area, you leave others unaware of them. They won’t understand when you think of a reason to drive alone to the game. Your desperate attempt to avoid embarrassment might be interpreted by your friends as anger at them, a wish to be alone, a lack of interest or snobbery. Accumulated instances of miscommunication will cause the relationship to wear thin and may even damage it permanently.

Jocelyn: For months I was suffering IBD symptoms. I would go out to dinner barely drink my water and start on my soup and diarrhea would hit me. It is a terrible feeling.

You can work through bathroom problems by gaining experience and choosing compromise. In time you will know your body well enough to measure the risk of jumping in a friend’s car or going shopping in Bermuda. You will probably share your physical difficulties with a few close friends and family members and rely on them for instant help and creative solutions if you run into trouble. Choose these people based on the humor they can bring to the situation and your comfort level with them. You will learn tricks that help you control when and how insistently your bowels have to work.

• I’m a professional speaker. To be certain I won’t have to rush to the bathroom in the middle of my speech or workshop I stop eating four hours before I go on. If I’m attending an event when meals are served, I ask them to hold mine till later and sip water, tea or soup while the others eat.
• When I have to fly, I refuse the in-flight meal, unless I know I will be landing within the hour. I make certain I visit the airport washroom before taking off and immediately upon landing.
• When I go to a concert, church or stadium etc., I ask for aisle seats so that I can easily get out if I need to go to the washroom.
• If I am in a large gathering like a conference or wedding, I time my washroom trip ahead of or following the rush for the washroom by everyone else.
• If I want to accept an invitation that requires eating before another activity I take a dose of Imodium ahead of time.
• I reconnoiter anywhere I am going to be, to make certain a washroom is available?

f) Loss of security around odor

Again this is one of the nightmares of chronic bowel diseases. You may know where the bathroom is, but you’re most reluctant to use it. Because surgery has often decreased the amount of your bowel, your stool is much more odiferous than normal. Or, you may have chronic diarrhea and be concerned about the odor. You worry constantly (I understand women are more prone to this concern than men) about inflicting that smell on others in a public washroom, or having someone enter a washroom in a home after you have used it. You carry candles and incense, perfume and matches, spray cans and air fresheners and you never stop feeling that prickly sweat of unease. Until you become comfortable with the fact that this is the way your body operates now, you will not let down your guard. But consider how much stress you are placing on your immune system by turning the matter of odor into a stink you just can’t bury.

Henry: When I travel for work I always want a separate room from the other guys. Part of this is because of having gas more easily from certain foods and worrying about the excessive odor and exposing others to it. When we’re in the field my bathroom radar is always on.


Midnight. Air Canada 3000 Flight to Hawaii. Over the ocean, cabin darkened everybody snoozing. Great time to sneak a bathroom break. Worried that I’m leaving an odor, I strike a match. The smoke alarm takes instant umbrage and shrills its displeasure. The male Flight Attendant’s fists hit the door in a frenzied tattoo accompanied by his shouts of “let me in”. I crouch like a cornered vixen, my slacks puddled around my ankles. I jerk them up, crack the door. He tears it from my hands, thrusts in his head, mouth moving like a robot on an assembling line as he reams me out for trying to sneak a smoke. Everybody on the airplane is now awake, staring indignantly as I resume my seat; except my travelling companion who pulls her sweater over her face and pretends she doesn’t know me. Maxine

g) Loss of sunlight

Suddenly something we’ve experienced all our lives, reveled in and used to boost our spirits is a No, No. I couldn’t believe it when I was put on Prednisone and discovered months later exposure to the sun, while on the drug, caused all the nasty brown spots appearing on my skin. For someone who loved to water-ski, swim and sunbathe this was a terrific blow. You may find you can no longer tolerate the sun without adding to your problems.

Sylvia: I found out that stress and sunlight are two of the triggers for Lupus. Sitting in the sun can cause an attack. I sat in the sun on a camping trip and had to go into ER.

Maxine: A trip to Barbados turned into a nightmare when I exposed my body to the sun for a few minutes one day. I had terrible muscle pain, sweats, rash and felt like I was suffering a bad flu.

h) Loss of body parts

With each surgery you lose a little bit of yourself, and your whole being recognizes that loss. You might not be consciously aware of this, with your focus on fixing the problem so you can get better. But your psyche may be at work dealing with the grief of this loss. You may recognize it as a period of sadness you can’t quite explain, or a longer period of depression. Once you understand it is an expected, necessary and acceptable part of the process you can experience your grief and then let it go.

I find that every once in a while, my grief returns briefly to remind me that I am a different person now. Parts of my intestinal track are gone forever. The old me is missing. Then I remind myself that the new me is wiser, stronger and quite exciting to live with and I move through that sad moment and into the next which I choose to fill with joy.

i) Loss of Freedom

Being hospitalized whether for tests or treatment can be a traumatic experience. You are already battling for control with whatever seems to have taken over your body. Now you feel like you have lost control of your privacy, time and space. You’re expected to follow a long list of stringent rules, each of which is a potential stressor. These rules dictate who you see, when, how many at once, what you wear, where you go, if you’re free to do this or that or when you are forced to do this or that. But possibly the hardest part of hospitalization is the sense that you are no longer in charge of what happens to your body. For example until you sign a form listing several options for the surgeon to deal with the unexpected, you are not able to have surgery. This is commonsense as you can hardly have a confab about your treatment while unconscious on the table and you certainly don’t want the surgeon to close you up and do it again after you’ve talked. However, having this license might mean you go into surgery like the woman who is having a biopsy and comes out minus her breast. There is a sense of helplessness as you sign your release form and a real fear that you have lost control over what happens to you next. The secret here is to remember if you can’t take action change your attitude. Take ownership of the decision to be in hospital, have that test and sign that form. It will give you back your sense of freedom.

j) Loss of body

Yes, out of body experiences do happen. You may float above yours watching everything around you with interest, as if it is a fascinating dream. When you deal with the reality that they did occur, once your spirit returns to your body, you experience a sense of loss.

Sylvia: I had waves of fire moving from my toes to my head. I felt like I was in a kind of trance floating above my body. It seemed like I was perched, kind of lying along the top of a picket fence. I could fall to either side. In my head I felt like I had a choice that moment to live or die.


They were using codeine to constipate me and I was given too much for too long and started hallucinating. I did the very cliché little green aliens thing. My spirit, floating near the sunny window, watched, as dragging my tubes and drains, I fought my way out of bed and followed my cute little friends into the bathroom. I was having a garbled conversation with a bunch of them who were swinging from the towel rack, swimming in the sink and enthusiastically persuading me to join them. Of course, when the nurse came in none of them stuck around to take the blame for my being out of my head and out of my bed with my intravenous ripped out. I returned to my body to help explain that other woman’s actions. Maxine

3. How do I maintain my energy levels?

“I use my precious stores of energy effectively.” Jocelyn

a) Where did my energy go?

Here’s a biggy. You may not realize how much you rely on the inexhaustible supply of energy you use until you lose it. Today energy is almost worshipped – it’s a special commodity no one wants to be without. We talk of conserving it, expending it, regenerating it, storing, burning and rationing it. You may see it as a sustainable product, but when your body is no longer capable of producing it you are a lost soul. If you re-coup just a little you are ecstatic. Chronic disease is a constant striving to balance the amount of energy you produce with what you use. The laws of physics state that it takes a lot more energy to start and stop an object than to produce continual momentum. So, every time you make the decision to deny your disability you force your body to a point of rebellion – it stops – you lose precious time and energy while you regenerate it.

Of all the physical limitations this loss of energy hits you hardest. I remember going for months feeling like I was trying to run through chest high water with every step. People who are used to being healthy, take their energy level for granted. So when they begin to experience loss of energy they are confused about what is happening.

Melanie: I didn’t work for a year, then my energy level started coming back up. I didn’t think I would ever have energy again. Now I am really conscious of my energy level and work to preserve it.

Robert: Sometimes I’ll be working in the yard and I can hardly put one foot in front of another. If I had several days like that I found I started having accidents.

You may be months into your chronic disease with your energy levels bottoming out, before you understand, or someone explains it to you. Common ways that you are losing energy are:

• Your body is siphoning it off in order to fight the disease. The more serious your condition, the more of your functions your brain will shut down in order to send more help to the fighter cells. It’s like the commander of the Voyageur saying “relay all power to the life support systems”.

• It is being used up as you fight pain. When You experience chronic pain you use huge amounts of energy to monitor it and either cope with it or fight it. Generally it takes days of pain before you realize how totally depleted your store of energy has become.

• You are not creating it because symptoms of the disease, worry or stress are keeping you from getting the necessary sleep you need to build new cells and thus new stores of energy.

• You are using it ineffectively by reacting to the stressors in your life, instead of using them as positive means of change.

b) How can I get my energy back?

Once you realize what is happening, conserving energy and creating new energy become priority steps in your struggle to return to wholeness. Every one of the people I interviewed stressed the importance of exercise in rebuilding their energy levels.

Shelley: Exercise rebuilds my energy faster than anything else does so I work out three times a week.

Jocelyn: You know energy makes energy so you force yourself to exercise. I did some painting last night and wasn’t feeling well, so I went for a walk just to get that humph back!

Because having enough energy is a priority with the chronically dis-eased, they have numerous suggestions for how to go about producing and conserving energy.

• Focus on just one task at a time and complete it before moving on, so that you don’t lose energy being unfocused.
• Try to control your emotions so that you don’t burn up energy by over- reacting.
• Work further ahead so that you don’t exert energy sweating deadlines.
• Limit what you do in a day.
• Get energy by listening to music or picking flowers.
• Get energy by being in nature – inhale it from rocks and trees and water.
• Activities that soothe (like baking, knitting) increase your energy.
• Monitor energy levels by listening to your body and stop before you deplete yours.
• Take one day a week to replenish your energy by using that day to relax.
• Try to keep yourself on a straight line emotionally and physically because peaks and valleys take more energy and it takes you longer to replace the energy you use dealing with them.
• Plan the things you most want to do for your highest energy time of day.
• Exercise in the morning so that you build up more energy for the rest of the day, rather than waiting for the end of the day when you don’t have the energy to exercise.
• Take power naps whenever you feel your energy waning.
• Stop fighting with everyone. Keep your energy for more important things.
• Don’t beat yourself up mentally. It robs you of energy.
• Set goals so you have something to work toward and you don’t waste energy wondering what to do.
• Save energy by speeding up your decision making process. Don’t procrastinate.
• Refuse to worry about things you can’t control.
• Cut back on tasks you did that were quite physical like yard work and replace them with activities like meditation that build energy rather than expend it.
• Ask people to come to you if you think going to them will stress you or tire you.

4. What role does function play?

When you really look at the physicality of your body you see there are many ways in which it functions. I can be dealing with the loss of bowel function, while you are trying to get your legs to carry you. You may be obsessed with one failing function while able to, if not ignore, at least not focus on others. Here’s what the people I interviewed had to say about losing function.

Carrie: I have to calm down about a situation because stress is the worst thing for MS. If I’m not mentally prepared my legs and hands won’t function right. I can only manage the stairs a few times a week. If I’ve used up my stair points I know I won’t be going down them again.

Lily: It’s my thumbs that cause me the most frustration. I’ve figured out a way to do most things but my thumbs are turned back on themselves and I have to use the first joint and you can’t do up buttons with a joint.

Daniel: It’s hard to comb my hair or brush my teeth since the strokes. I’m weaker in one leg and arm and I’m limited physically. When I walk slowly I lose my balance, and I’m clergy and need to walk down the aisle in a church.

Gail: I feel like I’m running at 80% of capacity all the time. My expectations of myself are higher and I find it frustrating to constantly fail them.

Shelley: I lose my function because of the drug I need to take to deal with my SAD. When I’m on the drug I don’t feel like me. I lack energy and ambition and move through the day like a zombie.

a) Your Yardstick

“If you say you can’t, you’re right, you can’t.” Carrie

Function is the yardstick against which you measure your advances and retreats, or in other words the severity of your symptoms at that time.

Phillipa: I can judge how much the disease is at work by when my brain gets better and starts functioning again. Then I get back the faculties I lost while the Lupus raged. If you took my brain function on a curve maybe there are times it’s functioning at 65% of what is normal for me, at other times I’m functioning at 95%, then maybe 85%. I’m always making a measurement to see how well I am overall.

Carrie: My ability to function has probably stabilized over the last five years. I can look back and know what I did then and what I can’t do now. I used to do a lot of stretching and yoga but now I can’t physically do a sit-up.

“Sometimes I feel an overwhelming sadness,
a total reality that I will never get back what I have lost. “ Carrie

b) Your Benchmark

So then maximum function, what you remember as your peak ability to function, becomes your benchmark or goal. It provides hope and something to aim for. As Phillipa says, “I can put up with the frustration knowing it [the symptom limiting the function] will go away in its own time.”

“To think that next month, or three months from now,
I will regain the capacity to function as I once did is encouraging.” Phillipa

For your benchmark to be encouraging or provide satisfaction when met, it must be reasonable. Carrie describes it like this. “I say, ‘This is my goal for tomorrow.’ Maybe all it is doing one load of laundry. I set my mind to do that one thing. It’s silly, but it’s almost like having something special to look forward to. If I do it, that’s a good day.” So that’s what it is about, a sense of accomplishment. And the satisfaction of meeting a goal like doing a load of laundry is just as rewarding, at the moment of victory, as publishing a book, or winning a marathon.

5. Can I surpass my physical limitations?

One great thing about humans is they always can find a creative route around an obstacle. Robert, because of heart disease, told me he can no longer walk the eighteen holes of golf with his friends. Now he walks nine and rides nine. Whereas Lily with rheumatoid arthritis can no longer swing her club, but she drives the cart for her husband and friends and maintains she has just as much fun. Rising above limitations opens new doors. Put your fears aside and see what is waiting out there for you. You may find you’re thriving.

Robert: The doctor told me I could still curl if I didn’t sweep. So I became the Skip of the team.

Matthew: I wanted to be a professional athlete, but the Diabetes took my eyesight in one eye and pain prevents me from running; so now I’m learning to be a Massage Therapist and hope to specialize in treating athletes.

Jocelyn: With the Fibromyalgia I needed a way to de-stress on weekends. I couldn’t do it if I stayed home so we bought a cottage. It has been a godsend. It provides a means for me to be in nature and build energy.

“When we go through the dark night of the soul,

growth comes out of the experience.

It is the closest you ever come to your true self.” Jocelyn


1. Take action or change your attitude in order to take ownership of each situation and feel that you are still in control. List upcoming scenarios (visits to doctor, a treatment, an extended meeting) where you feel control over what happens to your body might be taken away from you. Write down what action and/or attitude change you will make to deal with each situation.

2. Begin to listen to your body. This will necessitate quiet time built into each day. Find a comfortable position and take stock of your well-being.

a) Note of foods your body is craving and provide those foods. Monitor how they affect you.
b) Note the signals your body sends out around pain and infection and move on them quickly.

3. Experiment with ways to increase your energy. Try something new each day. Make a note of which activities make you feel more alive. Schedule them into your day.

4. Make a list of what functions you feel are limited or lost. Write beside each a reasonable benchmark for that function today (e.g. Too weak to do laundry – I’ll sort it) (e.g. Can’t stay for the whole meeting – I’ll stay the first half hour and read my report at the beginning).

Chapter 3 Educating Yourself

1. What do I want to know?

Let’s look at what the gastroenterologist told me during his diagnosis and my responses to what he said. It is obvious that we were not communicating well. A lot of harm was done in this first interview.

HIS words MY thoughts
You have Crohns. What’s that?
We don’t know what causes it. That doesn’t sound good. What is it?
We don’t know how to cure it. Oh no, that’s bad!
You will have it for the rest of your life. Which will be short as I’m going to die of fright any second!
You’ll probably only operate at about 80% or less of your normal capacity from now on. I can’t live like that. But I can’t live like this. He’s saying there’s nothing I can do about it.
Cortisone drugs are the only course of treatment, and you will have to be monitored continually for harmful side effects. They will harm me. That’s not an option. I feel powerless. I feel hopeless. This doctor doesn’t care.

At this point I was crying. My husband looked like he was going to attack the specialist, and the specialist appeared to be irritated. His body language indicated he thought I was weak, silly, and wasting his precious time. This was not a propitious time to ask burning questions. More afraid of the doctor than the disease, I walked out of there with minimal and negative information – perfectly set-up for deterioration in my condition.

Hopefully, you’ll have a doctor and specialist who deal with you compassionately, and who are experienced enough to know now is the time to answer questions. A good doctor will lead you through the information he thinks you need to know now. Often they will withhold information because they don’t think you are capable of absorbing it at the moment, or they are concerned with feeding you negative psychosomatic messages. If your doctor knows you well, or she is qualified to make decisions about withholding information. However, a specialist, who has only seen you once or twice, should not make this call. You may not realize information is being withheld, so it’s up to you to ask if they’ve told you everything and request another appointment for a time you feel more capable of dealing with information and asking questions.

Just as you should never delay in taking a health concern to your doctor, out of fear for what you might hear, neither should you delay in requesting a time to discuss your condition at length. Some things that can happen if you don’t discuss your disease and the treatment are:

• You may have side-effects from the treatment your doctor describes and think they are part of the disease.
• You may continue with habits or routines that are damaging to you.
• You may not be doing something that would help to improve your condition.
• You’ll continue to react on an emotional basis rather than take a proactive informed attitude.

There are many ways to find out about disease. All of them should lead to the gathering of information that will enable you to help yourself. Experience with disease will teach you:

You must take charge of your own health.

The best education comes from the school of hard knocks. Terrible as these experiences are, they are lasting lessons, and with each one you develop a more acute warning system and safety net.

Most of the education I received was from living through the experience. Each hospital stay taught me more about what my body could or couldn’t tolerate, how to deal with nurses and doctors, how to stand up for myself, how to go about making decisions about treatment, when to fight and when to accept. I learned a great deal about the human anatomy, drugs, treatments, and the importance of listening to my body. I finally learned the cause and effect process within my own body that is the best tool for coping with my Crohns today. I know if I do A now, B will happen in 4 hours. If C is happening now, I’m going to have to do D and E immediately to contain the damage. This was a major breakthrough in self-treatment, as my husband often teased me about being more ignorant of my bodily functions than anyone he knew. If asked, I couldn’t even say if I’d gone to the bathroom that day.

2. How much do I want to know?

It is interesting to note that 80% of the people I interviewed, who had been diagnosed with a chronic disease, did not want detailed information from their doctor at the beginning of their diagnosis. They were satisfied with the information the doctor offered in that first meeting, based on the few questions they could think to ask. There are several reasons for this choice not to be better informed.

a) Denial: You may not want details that will force you to recognize the disease at work in your body and make you admit to having the disease.

b) Trust: You trust your doctor enough to believe he will tell you everything of importance.

c) Inexperience: You don’t know the questions to ask and therefore assume you have all the relevant information.

d) Rejection: You have already rejected the treatment the doctor has recommended and therefore are not willing to hear more information about it.

3. When do I want to know?

Of the people I interviewed with chronic disease, there were three different behaviors exhibited around dealing with self-education. You may identify with one of the following:

a) The Monitors
In the first scenario, 20% of those diagnosed wanted detailed information immediately. When they had all the information they could get from their doctor and specialist, in the form of spoken and written word, they researched further on their own. They wanted to know every detail, every possible prognosis and prepare themselves to deal with any circumstance of their disease.

Phillipa: I wasn’t supposed to have these symptoms. They didn’t go with my diagnosis and hadn’t been identified yet. I determined I had them myself by reading. When I could name them as Fibrocitis and Fibromyalgia they made sense. When I took that information to the doctor I could ask the questions I needed to get help.

b) The Blunters
The second group was also made up of 20% of those diagnosed with chronic disease. They had enough knowledge up front to have self-diagnosed. Their information came from digging for answers on their own, living with someone else that had the disease (possibly another family member), from advanced classes in university, or from working in the medical profession themselves. The specialist’s diagnosis did not come as a shock to them, but they didn’t want to accept it. If you fit into this category, the knowledge you have is more of a subconscious awareness. You don’t want to look at it closely in connection with yourself. You deny there is something wrong with you as long as possible and refuse to accommodate changes in your health into your life-style. Often you push yourself past the treatable stage to serious disease by refusing to face up to your symptoms.

Sylvia: I believe I had an innate sense that I had MS. Yet I hid my symptoms from myself for a year and a half. I made up all sorts of excuses for my weak legs and dizzy spells. When I finally went to the doctor after a bad fall, and he asked me what I thought was going on, I said Multiple Sclerosis. He wanted to know if I had a medical background. I don’t, and didn’t know anybody else with the disease. I don’t know how I knew. It was a strange thing.

c) The ignorant

By far the most common scenario was that experienced by 60% of those diagnosed. There is no psychological term for these people. I think of them as the ignorant. They had no knowledge of the disease they were told they had. They willingly accepted the information provided by doctor and specialist and left it at that until they were forced by the necessity for treatment, surgery or emergency to deal with another aspect of their disease. At that time they learned more information. Thus they added to their knowledge base increment by increment – almost always paying the price for ignorance with a bad experience. It could have been a drug overdose, being admitted to hospital on a weekend without realizing no tests will be run till Monday, or continuing with a doctor who was not right for them. Gradually, over time, hard lesson by hard lesson, they became experts on their disease.

I fit into this category. I was so-o-o-o ignorant. All of my lessons were painful. Typical of the society I grew up in, I was a young woman taught not to question her elders and at that time all the medical staff was older than I. I was taught not to argue with a stranger, make a scene, or be selfish, which pretty much included asking for anything for me. Because of my learned paradigms, I allowed myself to be overdosed, talked into treatments I felt were wrong for me, ignored when I was in severe pain or emotional crisis, and forced into embarrassing situations that could have been avoided. I suffered excruciating pain many times because I didn’t want to argue with the doctor treating me or question the technicians running tests on me. I learned that you have to push your comfort zone in every direction. You have to decide when to acquiesce and when to flatly refuse. You learn when to ring that buzzer and when to leave it alone. You need to find the courage to question a treatment before agreeing to it, to refuse a particular medicine, and to insist your doctor help you investigate other treatments. You need to be your own secret agent, researcher and commanding officer.

4. Who can help me become informed?

Information is out there and available if you want to proactively protect yourself. Some of the sources the chronically ill recommend are:

a) Doctors: Spoken information, sketches, diagrams, three-dimensional models and printed brochures are made available by your doctor.

b) Libraries: The trick here is to go through the computer catalogues and choose books with the most recent publication dates. That is not to say books published earlier do not have relevant material, but, if you rely only on a book published in 1986, you may do without important information on new treatments and advances in your disease. You can look up your disease by subject matter or a particular title of a book someone has recommended to you.

c) Internet: If you have a computer, simply do your research from home. The net has a vast amount of information on your disease. Check out health web sites and do a search by name of disease. There are now worldwide web sites that provide the most up-to-date information and treatment for many chronic diseases. You can become part of a global data bank and receive the newest information on the treatment of your disease immediately.

d) Reliable sources: You may want to set up a meeting with someone else who is coping well with the disease or request a volunteer visit you. This person can tell you what worked for them and what didn’t. You may find this encouraging or discouraging depending on how the information is passed on. Everyone wants to see someone who had the disease a lot worse than they have and who has conquered it. This is the most hope-inducing experience.

e) Counselors: Counseling is often provided by support groups. Volunteer members of the group share their own experience and answer your questions.

Maxine: While I was in hospital, scheduled to have my lower intestine removed and the remaining end stitched into a hole in my side from which my stool would empty into a pouch, I was frightened, demoralized and major depressed. A beautiful young university student visited me. She had already undergone the surgery I was waiting to have. She looked so healthy and, best of all, was wearing tight jeans which gave no indication she had a pouch attached to her. She was so joyfully going on with her life that it gave me the greatest incentive to get through the surgery and get on with mine. She was able to share her experience with me from a positive outlook.

f) Support groups: These groups exist on local, regional and national levels. You can join a support group for Arthritis, Lupus, Crohns and Colitis, Heart Disease or Diabetes. More recently support groups have been established for Chronic Fatigue Syndrome, S.A.D. and Fibromyalgia. Almost every disease is covered in the larger cities or regional areas. Here you will receive up-to-date information on the disease and its treatment, the experience of others with the same disease, and guest speakers who are experts in their field. As a member of a support group, you generally receive a newsletter or periodical published by the group on a monthly, bi-monthly or quarterly basis. This provides a great deal of the latest information on your disease. We will talk further about Support in Chapter 9 Support.

g) Television Documentaries: Often we can find documentaries to help us understand the disease we are living with. Your local library may carry video documentaries on your disease.

TIP: Ask your pharmacist for last year’s copy of the drugs encyclopedia (they’ll get a new one each year). This book will allow you to check each drug you are on and the possible side effects that you may not have been told by your doctor. Remember, if you gather this information, don’t use it to talk yourself into symptoms you don’t have. Sylvia

5. How can I help educate others?

a) Be willing to share

I have come to the realization that when I take the time to carefully explain the disease and how it affects me, I am doing something for every other Lupus patient and for many more who might soon be diagnosed. Or worse yet,
misdiagnosed. I decided that it was my duty, my responsibility to inform my friends and my co-workers. After all, how could I in one breath complain about the lack of information in the media, when I in turn was refusing to educate a portion of society when I had a perfect opportunity to stand up and be heard.

Anyone who has gone through years of dealing with a chronic disease, and thrived in spite of it, has a vast amount of experience to hand on. It amazed me that so few of those interviewed had any interest in doing so. However, it is in your own best interest, health wise, to reach out to others in some way to share your experience of your disease and living with a chronic condition. You will benefit in several ways.

 You will see that good can come out of bad.
 You will have the satisfaction of helping someone else deal with their disease
 You will receive tenfold the appreciation, love and respect of those you help.

There are several ways you can use your experience to reach out to others. For instance, I joined a support group and then agreed to become a hospital visitor. It allowed me to pass on the good work of my counselor to someone else. I answered questions for patients who were waiting for the same surgery I had. I always looked my best and talked about all the things I could do now, that I couldn’t before the surgery. It helped the men and women I visited go into the operating theatre with a positive attitude, one of the best guarantees you will recover from the surgery.

Matthew: I pass on information on an informal basis one-on-one. Even though I am not very old I have had Diabetes all my life so I know more than just about anyone I talk to. Some of my pharmacist friends will tell people who are upset to call me. I was able to tell one fellow about an updated treatment that his doctor didn’t even know about. He asked the doctor for it and told me it made a huge difference in his life.

“I’ve been sick so long I can teach the following courses: Creative suffering, Whine Your Way to Alienation, The Joys of Hypochondria, Biofeedback and How To Stop It, Skate Yourself to Regularity, and Sinus Drainage at home.” Sylvia

b) Pass on the good stuff

You can be part of a new preventative thrust. It’s not just the technical facts and statistics that others need to know about. Doctors can tell them that. You need to pass on the things the doctors, who haven’t the practical experience of living with the disease, don’t know. If you pass on your coping techniques, your philosophy and describe the things you do to bring quality of life to living with a chronic condition, you are teaching valuable life lessons to others.

Statistics show that a spouse or child living with someone who has a chronic disease has a much greater chance of developing a chronic disease of their own. It is imperative that you work to prevent this by bringing all of the best to your family – the right foods to build up the immune system, the coping techniques to deal with stress, an emphasis on eight hours of sleep, and the need for regular exercise.

When I learned the value of Biofeedback in hospital, I started teaching my children to slow down their bodies and deal with stress in a new way. If they hurt themselves, we worked at breathing through the pain. Often, when I tucked them in at night, I massaged their backs and they did deep breathing till they were calmed down. The added benefit was a deeper, more restoring sleep. They have taken these lessons into adulthood and deal with the stressors in their lives far better than I did at the same age.

c) Become a leader

If you’re living (and hopefully thriving) with invisible disease, you have a great deal to hand on and a responsibility to do it. I’m not asking you to go on a speaking tour, though many of you are qualified to do so. Some of you have the courage to grasp opportunities to help – like those who said a willing “yes” to being interviewed for this book. What you share will help many more people who have chronic disease and those who are touched by it. Keep yourself open to opportunities to reach out to others.

Phillipa: I joined the local Lupus support group, then became President of it and realized that there was no resource for the people running the groups. I became instrumental in setting up a national support group to feed information and funding to others so they had the opportunity to do their own coping and get ahead of their disease. I have been involved for over 20 years and have made many dear friends who have become my family.


1. Look up the closest support group to you, phone and ask them to send you their information.

2. Visit the library and check-out the latest book on your disease.

3. Go on the Internet – find your disease by name. Discuss what you learn with your doctor, and with permission, try one of the recommended treatments.

4. Begin to teach your children, partner, spouse and siblings coping techniques for dealing with stress.

5. Pass on what you learn about your disease to others. Share with them your positive life lessons.

6. Be a role model for an upbeat positive approach to dealing with challenges.

Chapter 2 Diagnosis

1.      Are tests necessary?

 Almost always it is necessary for your physician to send you for specific tests, or to a specialist who will ask you to be tested, in order to find the cause of your symptoms. Testing is not fun. At a minimum it is a chunk of time out of your day when you would rather be doing something else. At a maximum it is a painful and humiliating procedure that exacerbates your condition. If you are going for tests, there are some things you can do to make it a more positive experience.

a)     Be informed

When your doctor suggests a test may help in diagnosing your condition, you want to believe it and have the test. However, there are all sorts of unknowns hanging out there. It is up to you to pick them up and make sense out of them. Ask your doctor: What is this test used for? What will it tell you? What will they do to me? (Get that in detail). When will I know the results? Make sure you know the when, where, how and why before you agree.

Often you will not be given a date for the test immediately. You are caught in the lengthy line-ups in our health care system. To save time make sure your doctor’s receptionist knows what dates you are not available. For example if you’re going on holiday for three weeks in February give her that information up front. Otherwise, according to Murphy’s law you’ll receive an appointment by mail for a day you are going to be away and you will have to start the process all over again – You’re shoved to the back of the line.

What you should know when you leave the office is the approximate waiting time for this test. Put a reminder on your calendar that if you have not heard by that time you will call your doctor to see what is happening. Call the office of the doctor or specialist who ordered the test and call the test centre to see if you’re booked, and just haven’t received notification.

b)     Follow instructions

 Many tests require fasting, avoidance of certain foods or beverages, emptying of bowels and or bladder in preparation for the test. Or you may be required to take some type of medicine or drops at home the night before. These instructions usually come from the test center along with your appointment time. If you fail to follow these instructions you will arrive and find you are refused the test. It would be a waste of time and money to follow through when the results will be skewed.  Therefore it is up to you to be certain you receive and follow any directions pertaining to a successful test result.

c)      Expect to wait

 If you arrive at 10:55 a.m. expecting to have your test at 11:00 a.m. as stated on your appointment letter, dream on. This is not something you dash away from the office for thirty minutes to do. The odd time they’re ready and waiting for you and you’re in and out quickly. But that is the rare exception.  Generally, I find that I am forced to wait between 20-90 minutes past the appointment time. So schedule an extra hour and a half more. There is nothing you can do to speed up the process. Ranting and raving, nagging at the nurse, telling your particular sob story will not get you in faster. It will irritate the staff and add to the stress of the situation. The system moves at its own speed.

It is in your best interest then, to go in expecting a wait. Take reading material, work or use the time to catch up on your emails, after checking you’re allowed to use your smart phone in the clinic or office.  You might get pleasure out of visiting with other people while you wait. When you are finally moved from the waiting room to an examination room take your things with you. There could be just as long a wait there, but now you are isolated from the mainstream of activity and it is more difficult to know what is happening. If you get caught without auxiliary entertainment, derive your own. Use your waiting time for contemplative prayer, work through a problem in your mind, deep breathe or go through a relaxation exercise or sleep. Make your time count for something besides stewing, wasting energy and getting your system in turmoil. Remember stress is your enemy.

I can remember being sent to a specialist on one occasion. It was extremely busy in the clinic. My appointment was for early afternoon. There was a long line-up; a delay caused because the specialist was called into surgery. The afternoon wore on. I was used to waiting and kept my cool. I felt badly for an elderly couple who had driven a long way. Her leg was in a cast, she was in terrible pain. They were naïve, first time patients who wouldn’t say boo to a mouse. Finally the specialist showed up and people were sifted into smaller rooms. The elderly women was seen and free to go. It was my turn to twiddle my thumbs in one of the cubby holes. Time passed, and passed. I stuck my head out and asked the nurse for an approximate on how much longer I would have to wait. Twenty minutes. Okay, Madelon, just a little more patience. Patience is my short suit. The smidge I have I gained from my years of medical appointments and long stays in the hospital. A lot longer than 20 minutes had passed and things seemed awfully quiet. I was quite upset by now, exhausted and close to tears. I ventured out again to find the janitor mopping the floors. Everyone had gone home and forgotten me. Quite a turmoil resulted. I did not initiate it, but I was happy to cooperate, remembering that older woman from the country. The nursing staff had been upset for some time because the specialists in that department were insisting they book three patients to each time slot.  If this wasn’t bad enough, the doctors consistently arrived over an hour late. It meant exhaustive waiting for everyone. I was asked to write a letter to the hospital administrator to strengthen the nurses’ case.  A review of the department was carried out, and things improved. It was one more experience that taught me about waiting. I learned there is a line between being too assertive and too patient. Now I stick my head out the door and request information at intervals.

Often tests require waiting time between procedures. If you remember to ask your doctor exactly what the test entails you will be prepared for these waiting periods and content to knit while time creeps by. If you have not been informed you may find them stressful, and you become impatient, frustrated and frightened. This is not where you want to go. Make good choices about how you put in the extra time.

d)     Be pleasant

 A younger, sillier me, when afraid, would act belligerent, ask inane questions or become mulish.  Any one of these behaviors will quickly earn the disapproval of busy professionals. Nurses and receptionists can only work within the guidelines of their jobs. You cannot hold them answerable for “why you were bumped for another patient”, “why your doctor is at the hospital doing surgery instead of standing by for your test”, “why the equipment is down and all tests cancelled for the day.” The best you can salvage from a situation like this is your self-respect. Throwing a tantrum, bursting into tears or swearing will not get you that test at that time. By treating the professionals with courtesy you can at least wait, or leave, feeling good about yourself. Today most health facilities have posted notices telling patients the staff will not tolerate abuse. That says a lot about how much they have had to take in the past.

2.      What do I do while I wait for test results?

There are worse things than waiting. You want to know what is wrong with you, to validate your illness and you are more worried that they won’t be able to diagnose your problem. A far graver concern is having your doctor make a snap diagnosis. The majority of the people I interviewed, who went to their local MD looking for answers were first sent home with comments like: “It’s all in your head.” OR “You’re just depressed.” “This is just a bid for attention.” “You’re a chronic complainer.” “You’re a hypochondriac.” My GP said to me, “I feel sorry for your husband and son, there is nothing wrong with you.” None of these statements were legitimate, as each person that had one spoken to them was diagnosed with an invisible disease, in the end. It was only through their persistence that they received help. Finding the determination to insist on a second opinion is a trial in itself when you are suffering from the exhaustion and pain of an unexplained condition. But if you don’t fight for yourself you may find yourself in your worst-case scenario.

Sylvia:  I was terribly confused.  I’d had symptoms since I was fifteen, and  now I was an adult and still didn’t know what was wrong with me.  Enough people said I was making it up  that I started to believe it. I  wondered if I was manifesting my symptoms in an effort to get attention. And yet they were real.  I did feel the pain.  When the doctors didn’t help me, I thought a holiday in the sun might. I drove with my small son to Portland, OR. I began to experience extreme pain, and by the time I arrived at my aunt’s house I was in trouble.  But they were Christian Scientists and believe talking about health problems manifests them. I had to drive back home to get help. The only way I could stand the pain in my back and lungs was to sleep hunched over the steering wheel, or sitting at a table with my arms crossed and a blanket over my shoulders.  I was admitted to hospital immediately with Pleurisy and Percarditis – fluid on the lungs and heart. It seemed that finally my Lupus had gotten so bad they could diagnose it.      All those years of waiting in pain were finally over.

Without exception, waiting for answers is the hardest part. You may be waiting at home, or in a hospital.  Regardless, you wait to be scheduled for tests, to have the results sent to your specialist and to have your doctor and/or specialist interpret them and tell you. Your imaginations can far exceed the probability of what is wrong with you. Because receiving the results of tests most often takes days to weeks, it leaves a lot of time for you to build scenarios in your head.  There are several things you could substitute in this period of time to make it seem less stressful and go faster.  These steps actually work to improve your health as you wait.

Booster Box

I was in the hospital so long while they diagnosed me that my son thought I had been on a cruise. I found myself apologizing for not bringing him a present when I got home. Sylvia


a)     Proactivity

It is absolutely imperative that during this waiting period you refuse to see yourself as a victim.  Instead you must approach the possibility that tests might expose a serious condition as just another challenge in life. You must ask yourself, “What can I do to help myself in a positive way at this time?”  The answer is to take steps to assist your body to fight whatever is wrong with you. There are many easy things you can do (see Chapter 8 Lifestyle Changes) but the most important is to get more rest, preferably REM sleep, so that your body has a better chance of replenishing dying cells with new strong ones.

b)     Positive Self Talk

Hundreds of studies in the field of pychoneuroimmunology prove beyond a doubt that our minds, in other words our thoughts, have tremendous influence over our body. When we feed ourselves negative messages of doom and gloom, our body reacts by excreting chemicals that depress our immune systems. In fact, there are now personality profiles to help doctors identify people at risk for certain autoimmune diseases. These profiles include many common traits such as:  feelings of alienation, tendencies toward depression and self-blame and anxiety, inflexible ethics and performance standards, inability to deal well with change or disappointment, feelings of worry, negativity, helplessness or hopelessness. Any one of these will weaken your autoimmune system over time and undermine its ability to fight whatever physical problem you are having.

c)      Coping Techniques

“I  lowered my stress level this last year with work I had to do inside myself.”  Jocelyn

If you’ve read this far you know how important it is to cope well with stress. And you know that waiting for a diagnosis can be an extremely stressful time. This is when you build into your routine the good habits that help cope with stress, like daily exercise, deep breathing, meditation and visualization. Many of these are also technique we use to cope with pain and can be found in Chapter 9.  Begin to experiment immediately with them to find ones that work for you.

d)     Distraction

This is not the time to go into the past and say, “I should have”, “If only I had”. Self-blame augments the problem. This is not the time to look into the future with fear of “What will happen to me?” or “What will the doctor say”. This is the time to live in the moment – taking from each second the best of life and finding in that the best of you. No, I am not telling you to party till you drop. I’m telling you to fill these moments with the things that make you feel alive. You might want to spend more time with your grandchildren, or hole up at the cabin with someone who stimulates you. This is the time to treat your senses to a smorgasbord of tastes, sounds, and sights. This is the time to assess what is going right in your body and focus on the blessings in your life.

Humor can play a huge part in not only distracting you from anxiety and pain, but healing you.  When you laugh you trigger the gland that sends Serotonin into your body. It not only increases your sense of well-being but reinforces your immune system. Recent research done on heart attack patients, shows those who have a 30 minute dose of laughter a day were 38% less likely to have a second attack. Read the funny papers!

Seeing the humor in everyday life is one of the eight common denominators identified between octogenarians who were interviewed about how they lived so long. People who see the humorous side of life have less chance of getting disease, and those who do, have a better chance of combating it.

Instead of becoming depressed, worried and upset about the high cost of her drugs, Sylvia concluded they were necessary and found the following humorous way to cope with it. She shares her positive outlook when invited to speak to other groups in the community.


My disease and I have contributed a lot to the economy of this city since we moved here. Housing starts are up and business is booming for some local shop owners, strictly because of me. Because my disease is chronic and I am persistent, I told the druggist, the doctors, the massage therapist and chiropractor that I would be in to see them on a regular basis. So, if they had dreams of buying a new car or building a new home they should go ahead with it. After seeing I kept my word several have taken me up on the offer. I calculate that if the city could lure five more people with chronic illness into the area, the property taxes would drop by an average of five percent.  Economic development officers in rural communities are starting to catch on … they are now inviting people with chronic illness to come live in their community. It creates more employment and less stink that the huge hog farms being considered.  Sylvia

3.      What will I be told?

When your test results arrive on your doctor’s desk, she or he reviews them and sets-up an appointment to share them with you, and to discuss your treatment. If the test results are good news this will not be necessary. So, if you do get a call to go in, you do so with a heavy heart expecting bad news. Often as a protective measure you imagine the worst case scenario, thinking anything the doctor says will then appear to be better news. This is the worst thing you can do. Again you are feeding your body psychosomatic messages that trigger the wrong response – in effect making yourself sicker before you even know what is wrong.

Your diagnostic visit will serve you best if you go in prepared to view what your doctor tells you as just a wrinkle in the cloth of life. You have control over how it will affect you mentally, physically and spiritually. Theoretically, your body is designed to be self-healing, self-sustaining and self-renewing. It is the stressors in your universe that undermine this process. So it is possible to not only defeat disease before it happens, but to send it into remission or eradicate it entirely once it occurs. There are many documented cases of people who have chosen a positive, proactive lifestyle that feeds body, mind and spirit in a healthy way, who have recovered from their diagnosed disease and gone on to live joyful, productive lives.

“A diagnostic label confers on illness a certain social and personal reality:  it announces to the world and to you that you have something that’s not just in your head.   … a familiar diagnosis at least frees people to stop thinking and worrying about what the problem is and whether it is diagnosable.”[1]

In order to be proactive and take positive feedback away from this session with your doctor there are several things you can do to understand what you are being told.

a)     Keep a log

If you are in a state of chronic disease, chances are you are sleep deprived and stressed. There will be many things happening to your body. You can’t possibly keep track of each change, and remember when and how the symptoms occurred and what happened as a result without writing them down. If you keep a personal log of each of your symptoms, the timing, and any cause and effect you recognize (i.e., after I walk the pain is less) this will be of great help to you in describing your symptoms, and to the doctor in understanding them.

b)     Bring a buddy

This person is helpful in several ways. She or he will lift your spirits. This is not the time to accept a ride with Cousin Helga who has nothing good to say about anything. You want a buddy who helps you to feel safe and comfortable in what may appear as a hostile environment. Preferably this person should be a good listener, calm and reassuring. It is her job to hear all the things you don’t absorb because you freeze right after your doctor says, “You have X”.

c)      Take notes

It is human nature to focus on the negative. Your doctor will say one thing you perceive as bad, or frightening and your mind stays fixated on that. Therefore it is important to write down the other things the doctor tells you, or have your buddy do it, so that you can absorb them later when the first shock is past. Ask for copies of test results, scoop up any diagram your doctor doodles.

d)     Ask questions

Many of the people I interviewed said, to some extent, they had already self-diagnosed or guessed at what was wrong with them before they heard the doctor say it aloud. If this is the case, you probably have already gathered some information and have questions leading out of what you have learned to date. Keep an ongoing list of questions. Write them down as they occur to you. Make sure your list is in hand, and that you work through it during your examination. Checking off each question and making a note of the answer helps you to stay on track. It is far too easy to go off on a tangent and leave the office without your questions asked. Remember you are probably not functioning as effectively as you normally would. Short-term memory loss, decreased ability to focus and concentrate, limited attention span, poorer hearing skills all come with chronic stress and sleep deprivation. Any or all of these will effect what you get out of this important interview with your doctor.

e)     See a professional not a god

Many people still see doctors as godlike, and hesitate to express their fears in case the doctor acts like they are frustrating, time consuming or silly. There is no silly question, except the one you didn’t ask. Some doctors will be frustrated by their inability to get to the root of your condition. They may be appear brusque and uncaring because they too are upset. Most doctors will be caught in their own dilemma of wondering how much information to disclose and when. They realize that some patients need to know every detail and possibility to deal with their diagnosis, while others use denial to get through this stage.

Dr. Frederic Inglis recommends physicians be as frank and honest as the circumstances permit, when discussing problems with their patients. “Try not to destroy hope,” he advises. Sometimes a well-meaning spouse or parent will request your doctor keep bad news from you.  Sometimes you even want it that way.

“If you lie to people, it’s often hard to remember what lie you told.”  Dr. F.G. Inglis

It is up to you to let your doctor know how much information you want. Ask the questions that have been on your mind during the waiting period. If your doctor isn’t prepared to take the time to answer them, then you have the wrong doctor or specialist. A good practitioner realizes that putting those fears to rest is part of the cure. The healthier your mind the healthier your body and the more at peace is your spirit. Your doctor should be willing to treat the whole YOU.

4.      Who will I tell?

 a)     Use common sense

Whether you want to share with others your health concerns, at this stage is totally dependent on your nature. There are people who tell the grocery check-out clerk about their health problems, and there are people who have left this world without confiding in a soul. If you do want to share your concerns, choose only a few people who will build you up in a positive way. Possibly, you know someone who has gone through a similar process of waiting, or has many of the same symptoms as yourself. Their positive outlook will be reinforcing. However, beware of being bombarded by dozens of people with their own idea of what is wrong with you. Don’t kid yourself if you do choose to share. Every person you tell will have his or her own story to give back. Friends and family, co-workers and that grocery clerk will diagnose you with everything from hypochondria to an alien body invasion. Too much of this can put you into a negative frame of mind and work against your efforts to build up your immune system.

b)     Keeping secrets can hurt

You may make judicious decisions to confide in some members of the family, but keep what is happening to them from other members of your family. You might feel it will cause the particular father, sister or child stress. In doing this, you place the members who know in a difficult position, without intent. The confidantes are forced to lie to people they care about or break a confidence – either choice causes them distress. One man with heart disease broke down in company with his brother-in-law and shared how he was unable to go to work and could only sit on the sofa and wait to be called for tests. With the system so backed up, it would be months and his doctor had told him not to move in case he had a heart attack. You can imagine the strain on this person. His brother-in-law was only too happy to listen, but when he was told not to tell his wife, because she would worry, it was unreasonable and unrealistic. Of course, the brother-in-law broke under the strain and shared his worry and concern with his wife. Now she had the stress anyway, plus the extra strain of keeping it a secret from her brother. Every time she spoke to him, asked how he was and got a “just fine” answer, there was this awful secret between them. Meanwhile, the brother-in-law was also feeling terrible for having broken a confidence. The situation has never been brought out in the open.

Consider that one of the best gifts you can give those you love is honesty and the respect that they are strong enough to handle what life dishes out. Don’t keep secrets.

 5.   How will I react?

“When I was diagnosed I didn’t ask ‘Why me?’ There is nothing that excludes me or makes me so special that I would think I can’t get a disease.” Maxine

a)     Relief

Every single person I interviewed said their primary reaction to being diagnosed was relief.  However, the reason they experienced the relief varied.

Phillipa:  Someone was validating my feelings and could see I was as sick as I felt. It was a tremendous relief.

 Sylvia:  It was a tremendous relief because I had been suffering so long without a diagnosis. Now they could begin to treat me.

b)     Guilt  

Because of their psychological make-up, many diagnosed patients turn blame for the disease on to themselves. They are used to shouldering the responsibility for everything, so this too must be their responsibility. Although most doctors will reassure you this isn’t the case – having the disease is not within your control, new studies of physiological cause and effect lend some truth to the patient’s belief. Yes, attitudes taken, refusal to cope well with stress, poor lifestyle choices could all have helped to trigger the disease. However, self-blame will do nothing but accentuate the negative feedback into the body and worsen your condition. Don’t go there!

Henry: I was mad at myself and blamed myself for being sick.  I suspect at the time I felt a combination of guilt and anger.

 c)      Anger

Along with anger goes blame. We blame ourselves for getting the disease and direct our anger at ourselves. Some become angry at the god they believe should protect them and shun their faith when they need it most. Others look for someone outside themselves to blame  – if my father hadn’t left; if my husband hadn’t cheated; if my mother wasn’t an alcoholic.

Robert:  I’m angry with myself. I didn’t look after myself when I had the chance.  I didn’t quit smoking when my doctors told me to.

d)     Resentment

By the time you are diagnosed you may already have considerable changes your lifestyle and be experiencing certain limitations. There is often a strong feeling of resentment when this happens, and it is turned inward against self. I resented that my symptoms kept me prisoner in my home.

Henry:  I was resentful about being sick and being unable to do what I wanted to do.

e)     Deceit

Perhaps all this time you have been hiding your symptoms from your family. Now you will be exposed. Perhaps you were even hiding them from yourself by making up a multitude of excuses.  Now you must confront a new reality based on what the doctor tells you.

Carrie:  I had been procrastinating in seeking medical help for a year and a half.  I hid my symptoms behind excuses like clumsiness, tired, tripped.  I was being deceitful.

Deceit can cause a real backlash when it comes to the people who care about you. If you make the decision to keep it to yourself, for whatever reasons, measure the benefits up front with the final results. You might feel you are protecting your loved ones from worry in the short term; while inadvertently positioning them for long term emotional spill-off. In Carrie’s case, she caused some damage by not sharing earlier. Her husband felt cheated of his rightful role to provide emotional support, guilty that he hadn’t noticed anything wrong and embarrassed that her parents were giving the practical help he wanted to give.

Ken:  I was hurt. She had known about her symptoms for ten months and only shared them with me when she was diagnosed. I didn’t even know she was having tests until my mother-in-law phoned me to say they were taking my wife to the clinic. It was my mother-in-law that told me my wife had MS.  When my wife finally talked to me about it I said, “No more secrets between us.” 

f)      Confusion

Matthew:  I felt confused.  I was too young to understand why I was in the hospital and what the doctor was saying. It wasn’t till I was six that I started to learn what was wrong with me and how I could help myself

Confusion is often part of the mix when children are sick. The adults involved must handle the diagnostic process in a calm, matter of fact way. If this is well done, the child will take his or her cues from the doctor and parents and the diagnosis will be much less traumatic. Do not let your own fears color the child’s perception.

g)     Chronic Complainer

Have you been one of these, or turned into one of these the minute the words chronic disease left your doctor’s lips? Possibly, like me, you couldn’t control the urge to share your symptoms and state of mind repetitively with everyone until it was so much your theme song others heard it playing before you hove into view, and ducked for cover. If they aren’t fortunate enough to get out of the way you can form a choir. Everyone knows the words by heart and can moan, whine, groan and whistle along with you. A large percentage of those interviewed said this was an initial reaction for them. Experience over time – sometimes an embarrassingly long span of time, taught them to lock the chronic complainer in the closet and bring out a positive attitude instead.

Carrie:  I was alienating people by being negative and whining all the time.  It became habitual and I didn’t even realize I was doing it. I was getting on my OWN nerves!

Sylvia:  I soon learned that many people only asked how I was to be polite. The real answer left them feeling awkward, embarrassed or helpless. So my answer became “fine”  – I hid a lot of pain, frustration, anger, fear, loneliness and despair behind that little word.

6.      Do I need more tests?

Now that you and your doctor or specialist knows what is wrong, you may need to go to more specialists to get expert help in dealing with the various symptoms of your chronic condition. This means more tests, more waiting, further diagnosis and emotional impact.

a)     Self Diagnosis

With so much information available these days, it is easy to get confused about what disease might be affecting you, because so many of the autoimmune disease symptoms overlap. I can read an article on Lupus and see many symptoms of my Crohns and easily talk myself into believing I have Lupus too. If you are prone to doing this it is a short step to developing psychosomatic symptoms of the new disease. Therefore, self-diagnosis must be approached from a common sense point of view, and any new theories you have must be taken to the doctor for confirmation.

  • It’s not always bad news.

Sylvia:  Over the years, I have learned to expect disappointment when going to a new    doctor.  But recently I was sent to a new pain specialist and I have never felt better about a doctor’s appointment in all the years of living with this hell called Lupus. I feel like a thousand pounds of stress has been lifted off my shoulders.

  • Influence

Just as the way the doctor presents the diagnosis to you influences your perception of the situation, so does your attitude to your diagnosis and what will follow, heavily influence the people who care for you. You can as easily lead them into a state of negativity and depression as yourself. This is an opportunity for you to set the tone for upbeat, proactive approach to living with a chronic disease.

  •  Permission to be sick

If you are one of the Type A patients that make up a high percentage of those diagnosed with invisible disease, you may not give yourself permission to be sick. Instead of recognizing your symptoms, as your body’s alarm system wailing that there is something wrong with you, you hide from them or excuse them. You push on, working the same hours, living the same lifestyle, until you come up against the reality of your doctor’s diagnosis. Often this diagnosis is the last barrier between you and a serious, possibly life threatening illness. While you will not give yourself permission to be sick, you do recognize the authority of a doctor’s ultimatum with a sense of relief. Now you can give in to the crippling symptoms, the chronic state of exhaustion and walk away from the demands you place on yourself.  Doctor’s orders!


  1. While you are waiting for tests and results of test feed yourself positive self talk.
  2. Keep a log of your symptoms over a one-month period.
  3. Spend as much time laughing as you can. Put joke books in the bathroom watch humorous movies and spend time with entertaining friends.
  4. Keep a running list of questions you want to ask your doctor.
  5. Ask a buddy to go with you to your next appointment.
  6. Exercise outdoors as much as possible.
  7. Schedule one to two 20 minute quiet times each day to meditate, pray, sit quietly or journal.


Now you know there is a reason for how terrible you feel. The next step is to educate yourself about your particular chronic complaint so that you can take an active part in healing yourself.


[1] Living With Chronic Fatigue; Susan Conant,  Ed.D.; Taylor Publishing Company, Dalla, TX 1990.

Chapter 1 Disease

1.     What is chronic disease?

Your doctor explains you have a chronic disease. Your first question is probably, “What is it?” The word chronic comes from the Greek Chronos for time. It is so named because those diseases and conditions listed as chronic last a long time, at present most of them for a lifetime. Whether you have Lupus or Asthma, Heart Disease or Chronic Fatigue Syndrome, you are in it for the long haul. That is not to say you will always feel sick, or never be cured. Chronic conditions rise and fall in intensity, much like waves on a lake. You may have long spells of only mild symptoms, or go into remission and feel like your disease has disappeared. Then you discover it is still lurking, and a variety of triggers can cause a relapse.  As yet, there are no significant cures for most of the chronic diseases, but rather treatments that help to minimize the symptoms. Great strides are being made in this area and in future, many of the chronic diseases might be eliminated or prevented.

2.     What causes chronic disease?

Your second question is probably, “What caused it?”  You want an explanation in order to understand and in order to believe. Your doctor’s answer will be the first of many steps down the path of frustration, because it will be, “We don’t know”.  There are many theories formulated to explain the cause of chronic diseases. Scientists are talking microbes and virus, bacteria and flukes. Many of the diseases overlap or are linked by many of the same symptoms. None of the theories around causes have been fully proven to date, although new information is being proven accurate at a faster rate.

The invisible diseases I focus on in this book (excepting heart disease and diabetes) are called autoimmune diseases. They result from a breakdown in the immune system. The actual process is metaphorically a war happening inside your body. Scouting cells called macrophages wander the body searching for any foreign protein. When they find an enemy soldier, called an antigen (anything from dirt under your skin to a cancer cell) the macrophages transfer the problem to an officer or helper T cell.  The T cells find and stimulate white blood cells or send out troops. They, in turn, make antibodies to bind around the antigen or take the prisoner(s) captive. In this way the antibodies impair the antigen while at the same time labeling them for attack by specialized larger cells – so the skirmishes now become battles. If they perceive that the enemy is not being destroyed, they send in more troops to destroy the antigen at increasing rates. Whatever is recognized as a properly functioning part of the body is permitted to remain (the friendlies), all else is attacked. When the situation escalates to this level often the troops get confused. They can no longer see the difference between friendlies and enemies so they attack everything. Now good cells are being destroyed (innocent victims of war). If you have a genetic weakness this is quite often the area that comes under attack.

You want to know, “How can my body turn on itself?” It recognizes itself by reading the molecular pattern on the surface of the cell called the major histocompatibility complex (MHC). If the MHC is valid the cell is left alone. But when there is a huge build-up of antibodies trying to fight antigens they actually transport protein from the invader to the healthy cells – thereby providing them with false ID. The healthy cells, falsely imprinted, then become priority targets for the killer cells of the immune system.  For example in the case of Crohns and Colitis the antibodies believe that the mucous secreted by the intestinal tract is the antigen and attack it.

3.     What triggers chronic disease?

Generally this internal war is possible because your immune system is already weakened by other factors. The two factors that most interfere with the normal operation of your immune system are:

a)     Sleep Deprivation

Many North Americans are suffering from this condition. The segment of the population highest hit is “Mompreneurs” entrepreneurial moms who are trying to do it all. They are now classified as double shift workers. According to the National Sleep Foundation of America it is necessary for the human body, regardless of age, to have eight hours of sleep per night to function properly and replace dead cells.

The results of a 2013 poll by the International Sleep Foundation showed that 53% of Canadians and 56% of Americans are getting less sleep than needed. While Canadians said they functioned best with 7 hrs 22 min minimum of sleep per night, they were only averaging 7 hrs 3 min. Americans were averaging only 6 hrs 31 min. Dr Allan Pack, medical director of the National Sleep Foundation, blames the frantic pace of modern society, saying, “The pressure to work often superseded sleep as a priority.”

When you’re overloaded, sleep is the first thing you sacrifice in order to meet other demands. And many working people now move from work-related activity to bed, resulting in delayed sleep syndrome, which in turn causes sleep deprivation and inhibits the ability to deal with stress.  Researchers at the National Sleep Foundation of America found that women are 50% more prone to sleep interruption than are men. The fact that biological functions like menstruation, menopause and pregnancy cause sleep disruptions increases the odds that working women are sleep deprived.  At present women are succumbing to the autoimmune diseases at a rate three to nine times higher than men, depending on the disease.

But children too are being diagnosed with chronic disease in growing numbers and at an increasing rate. Blended families and working parents mean many children no longer benefit by routine. The structure of set naptimes and bedtimes allows the necessary rest to rebuild their cells. Their days are extended by long commutes to schools or long hours in daycare waiting to be picked up by working parents.

“I’ll push myself until I’m so sick my body breaks down and I can say I’m sick.  That’s the only way I get a break.” Shelley

As more working women fall by the wayside, their spouses are being ask to take on the domestic, and prime child caring responsibilities the women are forced to relinquish in order to deal with severe health issues. Over time these men will also succumb to sleep deprivation. As a growing number of “single dads” take over childcare, a new class of “Dadpreneurs” creates the potential for more sufferers of chronic disease.

Chronic sleep deprivation leads in turn to the inability to deal well with stress. If you are overtired you may find yourself blowing things out of proportion, or reacting instead of remaining calm and taking a proactive stance. The smallest obstacle can appear like a mountain too high to overcome because you are viewing it through the lens of exhaustion. You may get caught in a downward spiral where lack of sleep increases the amount of stress you experience and the increased stress contributes to your lack of sleep. At this point, you are in what I call The Chronic Stress Spiral.

b)     Stress

For five years I counseled patients waiting for surgery for Crohns disease. Over and over I heard stories similar to this.

“My marriage has been just terrible for years. I kept trying to fix it. There was so much conflict. I was a mess, totally stressed out. Then my husband left me. I had two small children to support on my own. I didn’t think things could get any worse until I realized I wasn’t feeling well. Now I’ve been diagnosed with Crohns and they say I have to have surgery.”

Your story might be about the lingering death of a spouse, the need to re-locate an aging parent, trouble with a teenager, an unresolved conflict at work or dealing with a sick child. You could be locked into a situation you are refusing to resolve, or fighting a battle that can’t be won. You may have long term esteem problems or desperately want a child. But there is always a pattern to chronic disease. Stress accumulates to become chronic stress, trauma occurs, and a diagnosis of a chronic condition follows soon after. Don’t kid yourself. You’re in The Chronic Stress Spiral. It works like this:

You move into the stress spiral as a child. The first curve comes when Mom asks you to make your bed or watch your younger sister. You start school and responsibility grows – to get there on time, to do well for parental approval. School leads to social pressures from your peers around dress, and behavior, and conflict around personalities, attachments and competition. You might also have parents who are not available or incapable of teaching coping strategies and decision making. The number and types of sources of stress continue to increase as you head for higher education. You spin faster in the spiral.   Already dealing with external and internal stresses, you are forced to make life decisions around career, work ethics, commitment etc. You may choose to marry and have family and the stress grows with each child you add. The ability to cope with stress is unique to each person. Whether you start feeling it early in life or later, it is how you handle it that determines if it will weaken your immune system. Life is about change both long term and minute to minute. If you can’t adjust to the constant changes in your life they become stressors (anything that causes stress).

c)      The big blowout

Somewhere in your body is a genetic flaw. It’s a given unless you’re perfect. Probably you have several genetic flaws. There is a paradox happening at this point – the amount of stress you are experiencing is making you less capable of coping with stress, and coping techniques are the only way to reduce your stress level. Think of yourself as a well-treaded tire just out of the factory, with an invisible manufacture’s flaw. You drive thousands of miles on pavement, gravel and mud. You stop and start millions of times and your tread wears thin. The tiny flaw is closer to the surface and more vulnerable to damage. Then BANG a nail pierces your worn spot. I call this trauma the BIG BLOWOUT. It usually results in disease.

 4.     Where am I in the Chronic Stress Spiral?

a) Assessing your coping skills

Here is an exercise I designed to help me in the early years of my disease. I still use it at the beginning of each year to assess how I am coping with stress.

Navigating Your Stress

Step # 1 List everything you do over a period of a month, under each of the following headings:

Family e.g. chauffeuring son to swimming

Work e.g. pitching new promo

Social e.g. entertaining spouse’s boss

Community e.g. canvassing for heart fund

Step #2 Assign a number between 1-5 (one being least and 5 most) for the level of stress each activity causes you.

e.g. Social Yoga class – 0  Parking for class – 4  Entertaining spouse’s co-workers – 5

Step #3 Beside each point you have written down, determine what action you can take to eliminate, or deal with that task.

e.g. Parking – take taxi or have someone drop off and pick up

Step #4 If you are unable to take an action (some things are beyond your control), then beside the stressor under each category write down what change of attitude will make the situation less stressful for you.

e.g. choosing to enjoy entertaining your spouse’s co-workers because you want to do it.

Step #5 Use this chart as a guideline to assess your stressor and make some big changes in your life. Follow the actions or attitudinal changes you wrote down. You will experience an immediate reduction in your stress levels.

When sleep deprivation and stress affect your body over a long period of time, the genetic weakness rises to the surface just like the flaw in the worn tire. It is at this point of the process the internal war I described at the beginning of this chapter heats up.  If you consider your disease, or that of a person close to you, you can overlay this process onto your memory of what happened to you/he/she. First because your immune system is depleted you succumb to an illness. Your macrophages identify the virus, bacteria or whatever as an antigen and warn the T cells, who send white cells to destroy the antigen. The white cells can produce several different kinds of antibodies – each specialized for a different group of opponents. They also produce inflammation and a series of chemicals. The battle escalates and five of these chemicals attack the target cells and healthy cells on which they have transferred the false ID. They bore holes in the cell membranes and digest them.  Your body starts to exhibit the symptoms of your particular autoimmune disease. You may experience inflammation, pain, ulceration, sweats, dizziness, diarrhea, stiffness, rashes, blurred vision, weakness in extremities, and the list goes on depending on the type of disease and severity of the condition.

I believe that the inability to cope with stress is the dominant trigger for chronic disease. I base this belief on my own experience of living with Crohns for 37 years and the evidence gathered in the process of researching and interviewing for this book. Science has proven when we are under stress you have reduced production of melatonin, which is a substance that helps fight disease, with proven anticancer effects. Adrenaline also plays an important role in lowering your immune system’s ability with its accompanying excretion of cortisol.

“There is strong evidence that a common denominator in many stress-related diseases is an elevated level of cortisol in the blood. Cortisol is another name for hydrocortisone, one of the corticosteroids secreted by the adrenal cortex. Chronically elevated Cortisol levels, resulting from unrelieved stress, may actually be the cause, or a cause, of chronic diseases. Cortisol is known to be a powerful immunosuppressant.It breaks down lymphoid tissues in the thymus and lymph nodes, reduces the level of T helper cells and increase T suppressors, and inhibits the production of natural killer cells. It also reduces virus-fighting interferon … a naturally occurring antiviral agent produced by the body as a first line of defense against invading viruses.” Michael A. Weiner, Ph.D

You cannot imagine the relief it brought me to read these words. For years I had been telling everyone on my support team that I believed I was allergic to my own adrenaline, because every time something happened in my life, good or bad, that flooded my body with adrenaline, two days later my Crohns would flare up. Now Dr. Weiner has explained to me that corticosteroids with all their negative effects are released into the body along with an adrenaline boost. If you are Type A, reactive, like I was then – I’ve come a long way since – you are experiencing adrenaline rushes constantly throughout your day. You might be thrilled because you landed a big account, have just managed to avoid an automobile accident, or scared by your son jumping out of the closet at you.  The adrenaline floods your body and the cortisol is spread throughout your immune system. The effect is cumulative and over time the back door is cracked open for disease to enter.Another point Dr. Weiner makes of immense interest to me, and that I feel is important to pass on to you, is that organs like our spleen, appendix and tonsils are part of the lymphatic duct system a primary player in our immune system. When I was young it was the fad to remove tonsils if they became infected. Mine were taken out after several bouts of inflammation – ironically, that meant they were doing the job they were designed for and helping to battle an antigen in my body. When I had my first bowel resection they removed my appendix because it derived its blood supply from the calcum that had to be removed. Often the spleen is removed when damaged because as long as pneuovac is administered to control lung infection, the body can survive without it. Although I still retain my spleen, I hope (Iwas zipped open and shut so many times who knows what is left in there) I no longer have tonsils or appendix to play their important role of providing B and T cells and filtering out antigens trapped by the lymph system.

b)     Attitudes to stress:

  •  Surrender – some people just give up when it becomes too much. Surrender can be both a physical and mental state. The person might have a mental breakdown, at which point they refuse to deal with anything, or their body might shut down on them, forcing hospitalization and surrender to other peoples’ remedies.
  •  Ignore – you have heard about the person whose troubles wash over them like water off a duck.  You probably know someone who is able to ignore the things that are driving you up a wall.  They just shrug and see it as one more of life’s little quirks. At the same time as you admire them they irritate the heck out of you. While you’re emoting and raising your blood pressure this person is getting on with her day. Oh don’t you wish you could follow her example?
  •  Resist – yet others resist stress with all their being, causing themselves a greater amount of stress and using up valuable energy in the bargain. Are you the type that fights the need to give in to anger, refuses to fire the lazy employee, or sweats over how awful the exam is going to be instead of studying? When you anticipate that something will cause you stress and then build on it, you resist to your own detriment.
  •  Use – some people actually claim to thrive on stress. I know my daughter always picked the Christmas Eve shifts at the Gift Wrap booth because she loved the pressure of impatient husbands lined up with their last minute shopping. (I learned to put my name on the volunteer list for the first week it opened.) These so called Brink masters love the adrenaline rush of extra pressure. If you create situations of pressure in your life, like meeting deadlines at the last minute or arriving just before the curtains go up, you may be addicted to adrenaline, and be building situations of stress so you get the rush. If you’re using stressors to stimulate you, realize that the effect of them is cumulative. What works for a year or two can build until your immune system is at risk and disease is imminent.

For approximately ten years from 1979 to 1989 my medical experts tried to tell me that the Crohns caused the stress instead of agreeing with me that the stress caused the Crohns. Science cannot prove that exposure to long term stress is the trigger of these diseases, only that it weakens the autoimmune system and makes us more susceptible to them. Many doctors do not recognize it as a causal factor and therefore do not treat the patient for stress, as a conservative, preventative precursor to drugs or surgery. However, most doctors do acknowledge its influence as a contributing factor, if not the catalyst. There is massive anecdotal evidence to indicate stress is an underlying cause of chronic disease.

It is therefore paramount that you take an immediate, active role in identifying and coping effectively with the stressors in your life.


  1. Make changes in your habits that will help you sleep better and longer. Sleep a minimum of 8 hours a night.
  2. Ask for help – ask your doctor for a diagnosis, your spouse or partner to take on more of the load, your children to cooperate, your boss for reduced hours and your co-workers for understanding.
  3. Complete the Navigating My Stress exercise on pages 4/5.
  4. Live by the results – take action or change your attitude to eliminate stress.

You know there is something wrong with you. You have been sensing it and experiencing symptoms for some time. You may be able to admit to both chronic sleep deprivation and stress. If you have not already asked a doctor to diagnose your condition, do so now. Diagnosis leads to understanding.

Watch for Chapter 2 Diagnosis next week.



The Chronic Challenge – Foreward by Dr. F. G. Inglis


This remarkable book provides a compassionate, knowledgeable and well-researched source to guide persons with Chronic Disease (PCD). They daily have to summon the will to survive the challenge the disease brings to their lives and well-being. It will further help them to get on with “having a life”.

Madelon suffered a massive colonic hemorrhage at their summer cabin, and her husband, Dennis flew the life-saving flight that brought her to Saskatoon and into my life. Later that August day, following resuscitation, she was taken to the operating room where we performed a bowel resection: and so she embarked on her new life.

I will put this into some perspective. The majority of patients with Crohns Disease will require surgery at some phase of the disease. Of these, about half will require one operation. The others may require two or multiple procedures to deal with the complications of fistulae, bowel obstruction or bleeding associated with this idiopathic recurrent disease. Madelon is one of the latter.

I experienced her anger, frustration, despair and loss of self-esteem, directed at the Ileostomy the disease and me. All of this is clearly described in the book. We worked through this somehow and went on together over the years to deal with the problems of this recalcitrant disease. The bad days were common enough, but Madelon gained inner strength and the day I made rounds and saw her smile with a sparkle in her eyes, I knew she would make it. How she gained this resilience is described in the book.

This is not a book about Crohns disease alone, but rather it is dedicated to those people who have “invisible” chronic disease; many of which she has interviewed. These interviews were collated to illustrate the “Chronic Ripple” effect of persistent illness. I watched these ripples touch Madelon’s husband, children, family, friends, work place, medical staff and other care-givers.

The synthesis of the interviews provides specific guidelines in each chapter for the management of many problems. The readers of this book will experience an understanding of the complexities of their illness, or that of someone close to them, and be stimulated to cope, make positive adjustments and continue on as productive people.

Frederic G. Inglis,  MD FRCSC FACS Professor Emeritus of Surgery University of Saskatchewan Belleville, ON April 12, 2002