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.
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
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.
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.”
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
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.
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.
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.
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.
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.”
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.
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!
- While you are waiting for tests and results of test feed yourself positive self talk.
- Keep a log of your symptoms over a one-month period.
- Spend as much time laughing as you can. Put joke books in the bathroom watch humorous movies and spend time with entertaining friends.
- Keep a running list of questions you want to ask your doctor.
- Ask a buddy to go with you to your next appointment.
- Exercise outdoors as much as possible.
- 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.
 Living With Chronic Fatigue; Susan Conant, Ed.D.; Taylor Publishing Company, Dalla, TX 1990.