You and your Medical Team
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The following excerpt is taken with the author's permission from Chapter Ten of Miryam Ehrlich Williamson's second book, The Fibromyalgia Relief Book: 213 Ideas for Improving Your Quality of Life. The book contains much practical and helpful advice about coping with FM. This extract is from Chapter Ten, "Standing up for yourself" and is about finding and communicating with your doctor.
There is an extract from Miryam's first book Fibromyalgia: What you can do about Chronic Pain and Fatigue here.
Your doctor
Helping your doctor help you
Prejudice and ignorance explained
Meeting a new doctor
Your advocate
Standing up for yourself
Publication details
Think of the people who will help you take charge of your FM as a committee, with you as its chair. Committee members will be your GP and any specialists and auxiliary medical personnel you and your doctor agree should be involved. Your primary support person or someone you select as an advocate rounds out the team.
If you don't already have a health care professional you can work with, finding one should be one of your highest priorities, especially if you have severe pain or are unable to get restorative sleep. You need someone who can write prescriptions, refer you to appropriate specialists when necessary and whom you can consult about auxiliary services such as physical and occupational therapy and body- work.
Your primary physician need not be a rheumatologist, although rheumatologists are most often thought of as the doctors who specialise in fibromyalgia. This is true mainly because rheumatology is the first speciality most people think of when they are dealing with musculoskeletal pain. A rheumatologist is less likely than a family doctor to be able and willing to coordinate your care and to monitor your medications and progress, and these are the most important services a doctor can provide to you (next to getting you the sleep and pain relief you need in order to think clearly and chart your own plan for returning to health). One woman I know was taking thirteen different drugs, prescribed by four different doctors, none of whom knew of the others' existence. I learned of this when she told her support group that her liver was failing. Each of the four doctors was a specialist in a different field. None had ever asked her if she was taking any medications other than those he prescribed, and this poor woman didn't know she should offer that information.
If you don't now have a suitable GP, you may want to find one. Support groups are good for this purpose. You will usually encounter a few people who are satisfied with their doctors and who will provide their names. Word of mouth is the best way to locate a fibro-aware doctor. If that doesn't work, ask your local hospital or medical centre to provide some names. If all else fails, you can turn to the yellow pages of your telephone book. When calling a doctor's office, be sure to ask the person who answers the phone if the doctor treats people with fibromyalgia. If the person says, 'Fibro what?' say good- bye and hang up. If the receptionist never heard of it, the doctor doesn't treat it.
No one can guarantee that you'll hit it off with a particular doctor, but your chances will improve if you keep a few things in mind. First and most important, Western culture tends to elevate doctors to the level of gods. Don't fall into this trap. Even though some doctors accept this view of themselves, no single human being can know everything there is to know in a given field, not even the field of his or her speciality. If you've done your homework before your visit, you may know things about FM that the doctor doesn't know. It must be very difficult to sit across the desk from someone sleep-deprived and in pain and not have a ready answer to that person's problems. Talking about this, a dentist I know who gave up her own practice when arthritis crippled her hands (she also has fibromyalgia) said, 'Believe me, even the best doctors get scared that they are missing something. My doctor friends know they are not gods; they are just bright people doing the best jobs they can. It doesn't make them happy that they can't cure fibromyalgia patients.'
If you can approach the doctor in the spirit of 'Let's see what we can figure out together to make me feel better'-- implying that you don't expect the ultimate solution on the first try and are willing to be patient while you experiment with more than one approach--you'll help the doctor help you. Like the rest of us, doctors tend to behave in response to others' expectations. If you act as though you expect a quick fix, you'll almost surely get a prescription, but it may not be what you really need. If, on the other hand, you indicate that you're in this effort for the long haul, the doctor will be better able to proceed in an orderly way to try various solutions until the right one is found.
Second, while most doctors go into medicine genuinely hoping to help people, most soon learn that there is not enough time in the day to provide emotional support as well as medical treatment. Thus, they come to see their role as involving diagnosis and treatment. This may disappoint you. You're in pain and are naturally feeling vulnerable and needy. You want someone to listen to your sorrow and fear and offer comfort, but few doctors, even those who would like to provide that kind of support, can do so. If, instead, you approach the doctor as a source of information and advice-a consultant, in a sense--you're more likely to have a successful relationship. There are other, less expensive ways to get emotional counselling and support. Few doctors know what it's like to live with a chronic condition. What may seem like indifference may simply be lack of knowledge of the implications of fibromyalgia. You can help both yourself and the doctor's other FM patients by offering insights into the problems you face daily, but do this in small increments. Perhaps bring up one problem per visit, ideally with a description of how you are attempting to handle it, always leaving room for the doctor's question or comment. Both of you may learn from the exchange.
Like most of us, doctors have certain prejudices. Some have been so thoroughly indoctrinated to accept only information that has been proven scientifically that they discount anything else. My favorite illustration was provided by a veterinarian a few years ago. Veterinarians receive the same kind of rigorous training that medical doctors receive, only they work on animals instead of human beings. When I took my old dog Mario for a booster shot, we were in the midst of a hot, damp summer and fleas were particularly rampant. I coaxed Mario onto the examining table. The vet looked him over and said, 'This is the first dog I've seen this summer that isn't infested with fleas.' I told him, 'We give him brewer's yeast. The fleas don't like the smell and they stay away.' 'Oh,' said the vet with a dismissive wave of his hand, 'that doesn't work. '
This phenomenon accounts for the existence of so much doubt among doctors as to the existence of fibromyalgia, and the insistence of some that we are nothing but a bunch of hypochondriacs. Hypochondria is a psychological illness in which the patient complains of symptoms for which no physical explanation can be found. Typically the hypochondriac patient is anything but pleased when laboratory tests show no abnormalities. Do you remember when you'd never heard of fibromyalgia but knew you weren't well? You went to a doctor, passed all your tests with flying colors, and weren't happy to be told there was nothing wrong with you. That makes you a hypochondriac by definition, in the view of some doctors.
It may help you to know that fibromyalgia is far from the first ailment for which doctors blamed the patients until laboratory research identified a cause. Consider the following quotation on epilepsy from Textbook of Medicine, by Russell L. Cecil, A.B., M.D., Sc.D., a standard medical school text in the 1940s:
Between attacks the frank epileptic is usually a constitutional psychopath of the most disagreeable sort . . . self-centered, unable to grasp the viewpoint of others, and childishly, uncomprehending when forced to accept the opposite view .... Institutional treatment properly directed along strictly modern lines affords the best possible means of handling [epileptics] .... In properly conducted institutions the epileptic . . . [is] taught to view his malady in its proper light.
Writing about diabetes in the 1961 edition of the Popular Medical Encyclopedia, Morris Fishbein, M.D., said:
A famous Viennese physician classified diabetics into two types--those who are blamable and those who are blameless. Most people who develop diabetes are fat before they get it. Dr. E. P. Joslin says that any ten diabetics put together weigh a ton before they develop the disease. He calls these fat people blamable diabetics because they would not have had diabetes if they had kept their weights down to normal. The blameless diabetics are the children who develop the disease, and most of those are under ten years of age.
Fishbein was no backwoods physician without the advantages of exposure to modern medicine. For twenty-five years before he wrote the Popular Medical Encyclopedia, he edited the American Medical Association's magazine, Hygeia, the Health Magazine, which was later renamed Today's Health. Fishbein also wrote in the Encyclopedia:
Scientists also recognize what is called psychogenic pain, which is wholly mental. Such pain does not possess the qualities of pain that are associated with pain that is physical. The psychogenic pains are vague, they are irregular in their appearance, they are likely to be exaggerated in description, and they are usually accompanied by signs of excellent health otherwise. Pains that are more psychogenic than physical are likely to clear up when the mental reason for the pain disappears.
These words were published in 1961, not in the Dark Ages. Many doctors in practice today were in medical school then, and many more have been trained by those who were trained at that time. Keeping this in mind the next time you hear of a doctor who 'doesn't believe in fibromyalgia' may give you a different view of that doctor's competence.
It is unfortunate that many doctors think that everything that can be known about human health is already known. That is definitely not so. Until the mid-1990s, stomach ulcers were thought to be caused by stress. When an Australian doctor discovered H. pylorus, the bacterium that causes ulcers, medicine's view of the disease was altered. Yet there are still doctors in practice today who have never heard of this demonstrated fact and their patients are told to see psychiatrists, to take medicines that coat their stomachs and deprive them of needed nutrients, and to stick to a bland diet rather than being prescribed the ten-day course of antibiotics that would cure them.
I sympathise with you if you're dissatisfied with your doctor but afraid to find a new one. Some positive self-talk can help in such a situation. You don't have to leave the doctor you have until you've found one more suitable, so seeing a new doctor won't leave you without medical care if the visit doesn't yield positive results. Seeking a doctor better able to help you is not an act of disloyalty to your current doctor. Moreover, it is an important step on the way to improving the quality of your own life, which should be your most important consideration. There is a saying among people who earn their living in sales: each 'no' brings you one step closer to your next 'yes'. I suggest that each nonproductive meeting with a new doctor brings you that much closer to the right doctor for you. What's really at risk in meeting a new doctor is the price of the office visit. While that's not trivial, it fades in importance compared to your need and desire to be as healthy as you can be.
Take the time required to prepare for your meeting with a doctor you hope to hire for your medical care committee. Write a brief medical history listing in separate sections child- hood illnesses and immunisations, major illnesses, surgeries, injuries and allergies. Add a section for fibromyalgia symptoms, including date of onset of each, what you tried and with what results. You probably have a great deal to say about each of these categories. Write it all out, but then edit carefully, omitting as many extraneous details as you can and leaving out descriptive words such as severe, terrible, and so forth. Be as factual and unemotional as you can. Although you're talking about yourself, your written information will make the best impression if you can present it in a detached manner, somewhat the way a doctor would write to another one about a patient, except that you'll use your own words, not medical jargon.
Then write a covering letter in which you introduce yourself as a human being, not a medical case. Again, be as concise as you can be, but let the doctor know of your distress at the situation in which you find yourself. Stress your desire to feel well and be able to function fully. Say that you have done what you could do to educate yourself about fibromyalgia, and that you are looking for someone who will help you learn more about self-management of the condition. Mention the actions you are taking to improve your well-being, and add that you are open to suggestions of more and better things to try. In doing this, you will make it clear that you are trying hard to take a positive approach and are not expecting a miracle on the first visit. If that doesn't show the doctor that you are a person worthy of help and capable of being helped, nothing will and you may as well stay with the doctor you are currently seeing.
If there's time, mail your letter and history to the doctor in advance of your appointment. Go to the appointment with a written list of two or three of your most pressing questions or problems. Be sure that the material you prepared is given to the doctor. Try to meet the doctor while you are still fully clothed so that the first impression you create is of an adult in control of herself and trying to be well, not a sick, submissive person. If you must disrobe first, at least be seated in a chair and not up on the examining table when the doctor walks in, stand up if you can and offer to shake hands. This is the way you establish the relationship as one of adult to adult, rather than child to parent or, perish the thought, worshipper to a god.
Over several decades and more disappointments than I can count, I have learned to view my relationship with my doctor as a business relationship in which I am buying the doctor's time and advice based on her training and knowledge. I once asked my doctor--before I signed on to her service--if she would have a problem knowing that I intended to use her as my consultant and make my own decisions. She beamed. 'That's exactly what I want, too,' she said. When we meet to solve a health problem of mine, we know that we are bringing different perspectives and collections of knowledge to bear, and we work as a team, respectful of each other.
The third member of your basic medical team is your advocate. This should be someone you trust: your spouse, life partner, a family member, or a good friend. Most often your advocate will be an almost-silent partner, available if you need help and someone with whom to explore ideas and strategies. When you are in crisis, however, you may want your advocate to speak for you and will surely want her or him to accompany you on your visit to the doctor. My husband drove me to the visit during which I got my FM diagnosis because I was too sick to drive myself. I wanted him in the examining room with me because I was in such bad shape cognitively that I didn't trust myself to remember what the doctor said. Since then there have been times when I needed his company, but I make sure that he knows the results anytime I see or speak with my doctor. He has my medical power-of-attorney, a legal form on file in my medical records with a copy at home where he can find it. He has the authority to make decisions on my behalf if ever I am unable to speak for myself. I find it very reassuring to have this arrangement and recommend it to you.
Think of this triad--your doctor, your advocate and you--as the steering committee that oversees your health care. If you think you need a referral to a specialist, that might well be a decision for the steering committee. The right doctor for you is one willing to recognise when he or she lacks the specific knowledge you need and to refer you to a specialist for a consultation. In the best of circumstances, though, the specialist will suggest a course of treatment or action to you and your doctor but will not continue to treat you unless the situation demands it. It is of utmost importance that your GP know the details of your treatment. Otherwise, you risk having prescriptions that conflict with each other, possibly causing adverse interactions. There are exceptions to this requirement of extensive communication between GP and specialist, how- ever, in the case of a referral for emotional counselling--often a very good idea if you are new to this diagnosis and need some time to express anger and grief. Also, auxiliary medical professionals such as physios and occupational therapists don't need to report in detail, but your GP should know if you are seeing them.
You need to stand up for yourself in all matters pertaining to your medical care. You have the right to receive respectful, considerate, nondiscriminatory treatment at all times, to take part in all decisions pertaining to your medical treatment and to get a full explanation, in terms you can understand, of the pros and cons of any course of action.
© Miryam Ehrlich Williamson 1998
reproduced by kind permission of the author
The Fibromyalgia Relief Book: 213 Ideas for Improving Your Quality of Life
by Miryam Ehrlich Williamson
Australian edition: Allen & Unwin, 2000
ISBN 1-86508-265-1 (paperback) $19.95.
Publisher: Allen & Unwin phone
02 8425 0100; fax 02 9906 2218
email: frontdesk@allen-unwin.com.au
American and Canadian editions:
1998 Walker Publishing Company, Inc., (USA);
1998 Thomas Allen and Sons, Canada Ltd, Markham, Ontario
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last revised 22 Dec, 2004