Chapter 7 Emotional Impact

1. What emotions are common to people with invisible disease?

a) Anger

“Anger too becomes chronic and gets tedious.” Phillipa

Gail:  I get angry that all these nasty diseases keep happening to me. I wonder what I did to deserve them.  Bad luck?  A freak of genetics? 

Anger is part of the process of grieving. You must deal with your anger as a necessary step on the way to acceptance. Sometimes you are angry this is happening to you. Sometimes you are angry at a particular person involved with your dis-ease or for a particular reason.

Matthew:  I was very angry when I realized that I had lost the vision in my right eye because they used a different procedure than the one used on my left eye by another specialist in another city.  I felt like suing the first Optomologist [who’d damaged my right eye].

 Phillipa:  I was mad at my family members for not recognizing my sense of responsibility to them was overriding my physical needs.

A big part of the expression of anger is hostility. Your hostility may manifest in various ways from temper tantrums where you throw things, to silent withdrawal and refusal to cooperate with those around you. It may be directed inward at yourself for getting the disease. You may even subconsciously punish yourself by refusing to get treatment.

Your hostility might be directed toward family members as you project your feelings of guilt and accusation onto them, or at medical personal trying to treat you. You may even take it out on a stranger. Expressing your anger probably feels good at the moment, but following are feelings of ambivalence and guilt, as you wonder if you have pushed someone away forever. This too, is often a form of self-punishment.

Shelley: If I couldn’t make it perfect, the anger came out. I would take it out on anything around me, my roommates, parents, partner and objects that I crashed or threw.

 “A loving person lives in a loving world, a hostile person

in a hostile world.  Everyone you meet is your mirror.”  Ken Keyes

b)  Guilt

Guilt goes hand in hand with the mental impact of self blame. Gail feels guilty because she believes her poor eating habits in university triggered her Crohns. My inability to handle stress caused me to feel guilty, and Daniel blames his stroke on his bad habits.

You may feel guilty because your disease is keeping you from performing at peak levels.

Henry:  I feel guilty when I take time off from work to rest. I can’t say I need a day off just for myself. So, I try to take it a little easier instead of taking a whole day. I may drive to work instead of riding my bike.   

Sylvia:  I felt guilt that other people had to help me. I wanted to take care of myself and be independent I didn’t want to rely on other people. And now they had to take care of my son and me. 

You may feel guilty because illness keeps you from spending more time with your children and taking care of their needs. It keeps you from being a helpmate to your spouse or partner. It makes you less of a sibling, friend, parental support, community contributor or career achiever. You see it as letting everyone around you down. Feeling like a burden on the people you love makes you feel guilty and your guilt makes you more of a burden. So let it go.      

Possibly, like many others, you are frustrated by the conflict between your desire to resume work and the structure of the disability systems that keep you from resuming your career in increments of time you can manage. You are forced to stay home collecting disability insurance or worker’s compensation when you would like to become financially independent once more.

Often discouragement accompanies frustration, as you backslide again. You may find a drug won’t work or that doing something has worsened your condition. It is terribly frustrating to work hard for improvement and feel you’re there and then have a relapse for no apparent reason.

Another considerable source of frustration might be the lack of answers to the questions you are asking. So often, the doctors don’t know what causes autoimmune system diseases, what will cure or even alleviate them.

“Asking for help offers others the opportunity

to feel good about themselves.” Robert

You may be frustrated by the need to ask for help. If that’s not bad enough you have to wait for the person you asked to help you. I used to get upset because I couldn’t move many plans forward without the cooperation of someone else. I was frustrated because I felt the situation controlled me instead of the other way around.

The most common frustration expressed by many of you is the inability to do everything you want. You want to be able to work fulltime and carry on with all the activities you used to do. Most often work hours are restricted because the physical demand is too great. If you insist on working, you have to cancel almost all other activities and limit your social life to quiet visits in your home. You find you have to choose from options that are nowhere near what you want for yourself.

d) Embarrassment 

Sylvia:  I was so embarrassed when I found out I had Lupus and it could be caused by stress. I didn’t want to tell anybody because I thought, “Why can the rest of the world handle their stress and I can’t.” 

This is a question I still struggle with today. Over and over specialists and friends tell me to slow down, not be so hard on myself, don’t do so much. I look at other working women, who are also raising children and contributing in their communities and I think I’ve pared my workload down to almost nothing. It embarrasses me that I can’t keep up. If I go at the same pace as other women I inevitably end up exhausted and dealing with re-activated Crohns or Fibromyalgia.

Your limitations might cause you problems that are witnessed by others. You fear you will lose stature in the eyes of your friends and colleagues.

e)  Resentment

Sylvia:  I am, and I have been [feeling resentful]. It’s another one of those things were you don’t want to sit there too long. I hope that resentment isn’t something that I carry with me all the time and that would sort of lessen who I am. I guess I resent this disease and all the adjustments I have had to make. It seems my life just gets narrower and narrower and narrower. I can’t work, I can’t travel I can’t plan ahead with friends.

I also feel some resentment toward the medical profession. There are times I’ve been in the hospital because of pain management, of not giving me the right levels. Why do they give you a 100 grams of Demerol if they know I need 125 grams to give me relief from pain? Why do they always have to leave me in a little bit of pain, not kill it all. Or why did they take so long to put in the pike line, or try a new drug or give me my injections in the hip?

f)  Sadness

Melanie:  I think about how hard I worked, what I put my body through and I would find myself crying. It’s not self-pity, but pity for someone who worked so hard. It makes me sad.

g)  Fear

Are you so afraid of the answer you wait a long time to ask the questions? Are you afraid you won’t be diagnosed correctly and you will have to continue to live with the symptoms and pain with no relief? It was over a year before Robert asked if his heart disease would restrict his life. He was afraid to pick anything up in case his heart exploded. And Adam was afraid to move for six months while he waited for an angiogram and diagnosis. All that time they lived in fear, instead of getting the answers they needed to remove the fear.Fear also comes when you are forced to choose a treatment that seems invasive or will cause long term damage. I remember being told I needed iron injections to kick start my immune system. However, too much iron in my body would have traumatic effects. Therefore I would be hooked up to a machine that would monitor my intake. If it beeped loudly the staff would come running, and I would be quite frightened. It was an awful choice to have to make and I was afraid through the entire treatment.

I was terribly afraid when I was forced to choose going on the Prednisone or death. At that time it was just a new drug on the market, without a proven record. They told me all the side effects it could cause. It would destroy my white blood cells and they would have to draw blood weekly to see how low my SAID count was. They told me with my auto immune system depleted by the disease and the steroids I would be extremely susceptible to every cold, bacteria and virus that came along. They said it would eat away my bone density, cause kidney stones and loss of hair.  Agreeing to go on the steroids was very frightening. Sure enough, because of my extreme sensibility to drugs of any kind, I had every one of the negative reactions. But I survived both the physical symptoms and the avalanche of fear. I have learned so much since then. I will never allow myself to experience that prolonged level of fear again. I worked against any chance of healing myself by feeding constant fear induced levels of adrenaline and cortisol into my body.

Another common fear amongst people with dis-ease is the fear of suffering. You don’t know if you will be able to handle the pain.

Fear plays a huge part in the chronic condition, as you can see. Sylvia feared being abandoned by her doctors, if they didn’t find out what was wrong, if they thought she was malingering or couldn’t stand her complaints anymore. I remember being terribly afraid when I moved to Winnipeg and left all my medical support behind. I wanted my doctors like a child wants her favorite “blankie”.

Diagnosis of a chronic disease leaves you to face your own mortality. This may be brought closer if you have a near death experience caused by the seriousness of your condition or a drug overdose or drug reaction. It is the most frightening experience to hover on the brink of death and wonder which way you will fall.

Of course the extreme of fear is terror. Whether you reach this point depends on your character.  To some it comes unexpectedly and often is so paralyzing that at first you are unable to help yourself.

Jocelyn:  Last year I was paralyzed with fear. Fear of my own mortality. Every symptom I had went from diagnosis to death in my imagination. Everything was blown out of proportion. It was engulfing. I lived in fear of suffering and dying. I’d get a pimple and I’d wonder if this should be looked at. I was paranoid.

“Doctors don’t encourage me to talk about my emotions.”  Gail

2.  Is depression a given? 

a) The look of depression

Shelley:  I had no energy, felt deeply depressed, listless, and found it really hard to get myself out of bed or into my day.

Depression looks different in each individual. What Shelley describes is the cliché understanding of how a depressed person acts and feels. When I went to my doctor because of huge mood swings and high levels of anxiety I was informed I was suffering depression. Quel surprise! In layman terms she explained that our mental stability forms a straight line on a chart. Most of us have low level jags that jut above and below the line as we go through different experiences, euphoria, or disappointment.  When the jags get longer and sharper either above or below the line we are entering dangerous territory or sinking into depression. While Shelley’s jags lengthened below the line, mine spiked high above it. Psychologist, social workers, counselors and pain therapists can identify your specific problems. They will help you find and erase the cognitive glitches that add to your depression rather than help you rise above it (those negative mental messages you keep feeding yourself). If your depression is severe or continues over-long, working with a psychiatrist is an important step to getting medication and professional care tailored to you.

Chronic illness is depressing. It involves so many losses:  loss of career, hobbies, athletics and those losses, in turn , result in a loss of our identities, a loss of our former selves. In my experience, however, depression does not cause this disease; this disease causes depression and I suspect that depression is a component of all chronic illnesses where patients suffer losses of this magnitude.[1]Kathy Rabin

  “There is no doubt your emotions take over the illness

and then you don’t function as well.”  Carrie

b) Recognizing depression

The worse part of suffering depression is that you slide into it unaware. Now your thoughts and feelings are already skewed by the fact that you are in depression and you are unable to distance yourself enough to identify what is wrong and get help. Often you suffer a long time in depression, believing that what is wrong with you has something to do with other symptoms of your disease, side-effects of drugs you are on, or changes in your lifestyle. Usually it takes someone who can measure your behavior objectively to identify you are in depression and suggest you get help.

c) The cycles of depression

Depression can become part of a cycle, for instance if you suffer SAD you may note that you are sinking into depression at a certain time each year. Several years of going through an emotional downer in January and journaling about it, show me that I need to be proactive going into my January. A change of scene, more activity and the refusal to eat everything in sight (preparing for hibernation) will probably keep me from being depressed in January next year.  ou may find you get depressed heading into a treatment or coming out of surgery. You may sink into depression on the anniversary of something you can no longer do, such as annual Marathon.

Shelley:  I wanted to escape inside a little space where I could hide from my feelings. I would see myself turning from a high energy, social person down to one who was isolated and depressed.

Shelley could actually see what was happening to her before she sank too deeply into the depression to be unable to help herself. She made the effort to get to a doctor and request something to get her through her deep depression. She learned if she increased her exercise and went onto a drug for short term relief she could fight free of the depression.

d) Prepare for depression

Your best weapon against depression is not to discount it as a possibility in your life and therefore to be prepared for it. Like me, you can proactively plan to avoid routine cycles of depression through action. By journaling daily you keep a record of what is happening over time and can find patterns that lead you to better choices.

3. How do you feel about death? 

Daniel:  I have thought about the whole idea of dying a lot lately. I live as though I’m going to live forever. I fill up my day. I don’t look ahead.

When Naomi developed IBD, she was able to relate more to her friend, Sylvia who had Lupus. They talk about Sylvia dying. Naomi and Sylvia had one conversation around what song should be played at Sylvia’s funeral. They made a contemporary choice that got them laughing because they didn’t even think they could play it in a church.

Sylvia:  On a Saturday morning in hospital, I woke feeling something was wrong. I phoned my mom and asked her to come. I had waves of fire moving from toes to head – felt like I was in a kind of trance, floating out of my body. I told my mom she had to put my socks on so I could feel my feet, and cover me with a sheet so I could feel my body. In my head I felt like I had a choice at that moment to live or die. I saw a picture of my six-year-old son. His father had abandoned him already. I chose to live for him. The light was extremely bright. I felt like I was perched, kind of lying along the top of a picket fence. I could fall either side. Hours later my sister was there. I sat up and told her I couldn’t feel myself. I got out of bed and went and took a shower so I could feel my body because of the water hitting it. I felt like I came back into my body.

All this time there were nurses coming and going and staff. But they didn’t want to know what was happening to me. I think they were afraid I was dying. My sister told me she was sitting with me because my mom had gone to make the funeral arrangements.

I too had out of body experiences that drew me close to the portal of death. When you have been revived and know you are back among the living you begin to doubt your memory of the experience.  You rationalize it as caused by drugs or fever. Even though you know something happened that was mysterious and different, and there were plenty of witnesses to it, it is often safer to reject the idea.

But death is something you must face. With a strong faith and healthy attitude you can see it as inevitable but not necessarily imminent because of your disease. It is human nature to fight against the thought of death when you are young and used to being healthy. Only with age and chronic pain and disability does it begin to look like a welcome friend.

I see death as just another choice my soul makes to move on so that it can continue to grow. It is an adventure, the beginning of another phase of life. It holds no fear for me. I try to share my belief with those I love. I want them to be comforted, when I die, by the knowledge my departure is just another change to which they will adjust.

Sylvia:  In reality the person who dies is off doing whatever they are doing. It’s the ones left behind that suffer and feel grief. The funeral and traditions are for them. So when I talk about wanting to die they are thinking about life without me and they are sad. And I’m in a totally different frame. I’m thinking, “Heaven, oh I can’t wait to get there.”  

Sylvia makes a good point. If you talk about death with someone who has no experience of the chronic pain, disability and emotional rollercoaster you’ve experienced, they will evaluate from a different perspective. The healthy person cannot see death as release, but only as something terrible that might happen to the person they love.

4. Is suicide a threat?

About three years into my illness, after months of hospitalization, with my weight down to 83 pounds I came home. My mother was staying with us a few days to help me. I lay on the sofa, so thin that the cushions hurt every bone in my body. I must have been terribly depressed, weakened by the constant pain and fight to stay alive. I told mommy I thought everybody would be better off if I just committed suicide. This was no way to live and I was so tired of being a burden on everybody. I was no good for anything and would be doing everyone a favor if I killed myself. I know I really truly believed it was the most practical solution at that time. But I must have been having a real pity party that day. I must have frightened my mother terribly spouting all that negativity.These thoughts are not unique to me. You too, may see yourself as a burden. Sinking under the emotional weight of guilt, frustration and hopelessness, you consider what is best for everyone and often look to suicide as the answer.Sylvia: I asked Allan for permission to commit suicide because that’s all I could see, that’s all there was. But when I’m not so upset and overwhelmed I don’t think like that.What you have to remember is that thoughts of suicide come at your lowest moments when you have the least energy or motivation to deal with them. Therefore, this is not something you should focus on without getting help. Talk to someone who bolsters you with her or his positive nature. My younger sister always had just the right set of tapes or a meaningful gift to encourage me to look outward and rise above the negativity that dragged me toward giving up.   Long term thoughts of dying are doing considerable damage to your hopes for recovery. They are like time bombs being hurtled at your immune system, destroying its ability to heal and strengthen you physically. Remember the power of the mind and spirit and force yourself away from this type of thinking whenever possible.

5. What part does faith play?

a) If you have faith

To me, faith provides hope, the great healer, along with the lightening of your spirit and the comfort of prayer and communion with God. It sends positive messages to your body and gives you a focus for your mind. There are many instances in my history of dis-ease where faith played an active role in my healing. Each time I faced surgery my prayers were panicked pleas to come out of it alive. Though I believed God heard and cared, I had seen many people go through worse around me and didn’t for a minute think I would get preferential treatment. One night I lay awake dreading the surgery to come the following morning. Using the last of my strength, I managed to snag a small pamphlet of prayers placed in each bedside table. It dealt with specific instances, such as grief, anxiety, fear and despair. I worked my way through the whole thing. Suddenly I was wrapped in peace and comforted. God truly loved me and wanted the best for me. I could trust in that completely. I experienced a feeling of total calm, a letting go. With it came enormous relief and a sense of freedom. I slept deeply. The next morning as I waited to be wheeled down to surgery I again was able to feel that great sense of peace and rightness. I came out of the anesthetic giddy with joy and actually laughing, the only time out of 19 surgeries. It was proof God approved of the distance I had closed between us. [2]

Though, the surgeries kept me alive, the Crohns and the steroids used to treat it caused me many other problems.My immune system was so depleted I was unable to heal myself. I returned home with a wound eight inches long and four inches deep that would not close. I lay in bed waiting my daily visit from the nurse to change my dressing. The healing process crept along so slowly progress was invisible. Then a friend came to visit and she loaned me a book on how to pray. It recommended that I should pray that God’s will be done. I began to ask to be healed, “If it was God’s will” and to add, “If it is not what you have planned for me, give me the strength to persevere”. The next day when the nurse looked at my incision she shouted, causing me to jerk with alarm. “I can’t believe this,” she said, “Your wound is at least a quarter inch shallower this morning, when there hasn’t been a sign of improvement for months.”Day after day, as I prayed in this new way my incision continued to close. I was experiencing a miracle. God again demonstrated his approval of my change in direction. I continue to ask God to do his will in my life – really meaning it. I’m prepared to accept whatever results [2]

Naomi:  I have a deep spirituality.  I really think things are meant to be. Things happen for a reason, that’s comforting. I feel I am led places and I receive special messages. 

Sylvia:  Do I believe it’s happening for a reason? Most of us look for a giant purpose. Sometimes our purpose is just to raise our son. What is my purpose? We’re not supposed to know.  

b) If you don’t have faith

You may go into your diagnosis with no faith in a creator God to sustain you. Are you missing an important element of support and healing? I strongly believe it takes body, mind and spirit working in conjunction to bring about total healing and wellbeing. However, this is a personal choice, and you must come from your own spiritual philosophy when dealing with your dis-ease. You may find your spiritual energy in another way – through nature, perhaps.

Or, you may belong to a second group who find the diagnosis serves as a catalyst, turning them from the traditional faith they have followed. You may find God is one of the first you blame for your disease and that forgiveness is not part of the equation. You are angry with God and turn from God.  You may choose never to find your way back, or discover that this is a period of fallout caused by grieving.

“I know life is a mystery and this [disease] just doesn’t make sense.” Melanie

This is the time many people, who care about you for various reasons, your family members, co-workers, faith community or strangers who love you as part of humankind, all want to bring you the solace of faith, or make sense of it for you. You may be inundated with books, pamphlets, bibles and lectures. Parsons, preachers, lay people and priests, all wanting to comfort you in the way they feel is best, may visit you. If you reject the idea of God, you may rid yourself of them through refusal to listen. However, kindness and love often leaves you vulnerable and forced to listen to the message each is trying to give you. You find yourself balancing on a teeter totter between guilt (I don’t want to hurt their feelings) and resentment (why are they forcing me to listen to this when I’m ill) and using up your valuable store of energy. It can do damage to your recovery. Make the best choice, and use a member of your support team to limit your visitors.

c) If you want faith

Possibly, you discover your disease acts as a catalyst to searching for faith. You can look in many directions, not just the traditional churches of North America. You can find answers that work for you among the world religions and practices. One will seek the sweat lodges of the Navaho Indian, another follow the yoga practices of India. Fundamentalists offer healing jamborees, inciting huge emotional response, and yet others seek the isolated practice of Centering prayer.Quite a few people coping with dis-ease have recently turned to Centering Prayer as both a spiritual exercise and method for coping with their disease. It requires discipline and down time – time set aside just for quiet aloneness.

Melanie: Right now I am trying a new kind of meditation called Centering Prayer which I do for 30 minutes every morning and evening. Already I notice I have more focus and energy.

If you are truly searching for the comfort of God’s presence in your life, there are many sources for you. Clinics will have brochures with phone numbers you can call. The hospital provides a visiting Chaplain, or minister of a particular affiliation at your request. There is material on prayer and a Bible present in each hospital room. Expressing an interest to any friend or family member who has faith will get you immediate support through their spiritual community or personal counsel.

“I try the Buddhist philosophy of staying in the moment.” Jocelyn

 YOUR CHALLENGE 

1. Start a journal tracking your emotional response daily. Use it to identify patterns or cycles of emotions.
2. Identify specific cycles of emotion and design proactive ways to avoid them.
3. Write the answers to the following questions. Have you experienced depression or anxiety? What were the symptoms? How long did it last? What did you do about it? Who helped? What helped? Analyze your answers so that you are prepared for the next time depression reaches out for you. Have a plan of people and activities that can help you avoid or cope with depression/anxiety.
4. Consider how faith helps in your recovery. Is this something you might practice more? Research more? If so, do it.
5. Look closely at your feelings around death. Are they causing you negative feedback? Work at accepting death so that it no longer frightens you. Research death, until you find a theory that makes sense and brings you comfort. Then put it on a back burner in your mind. 

We’ve looked at how the disease affects you physically, mentally and emotionally. Now it is time to check out the lifestyle changes you will make in order to adapt.

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

[2] Madelon A. Smid; excerpt from “Growing In Faith: Baby Steps to God”, Our Family Magazine; October 2001.