With a long-term illness, you have a different role with health care providers than is typical for acute illnesses. Because your condition is an ongoing one, and you are the day-to-day manager, the patient/provider relationship is more appropriately a partnership in which you play an active role, selecting the members of your health care team and working with them to improve your quality of life.

It is reasonable for you to expect some things of the people helping you. You have a right to providers who know about your illness or are willing to learn about it, who believe your illness is real, who treat you with respect and who are willing to experiment to find treatments that work for you. You have responsibilities as well. You should have realistic goals for your providers, not expecting them to cure you, but looking to them as partners in your efforts to feel better. Also, I suggest that you treat your visits as professional meetings. (See section titled “Visits,” later in the chapter.)

Sources of Help

Given the complexity of chronic illness and the likelihood of having several medical problems, you may decide to assemble a group of providers to help you live better. You will need to explain your situation and special needs to all of them.

Physicians
Medical doctors often seen by CFS and fibromyalgia patients include both primary care physicians and specialists. Among the latter are rheumatologists (doctors who specialize in arthritis and related illnesses, including fibromyalgia), psychiatrists (doctors who specialize in mental and emotional problems and who prescribe medications for problems like anxiety and depression), doctors who specialize in pain management and doctors who treat sleep disorders.

Other Medical Providers
Doctors may refer you to physical or occupational therapists, who can help you address problems through physical manipulation, exercise training and adjustments to daily activities. Many patients also receive spinal adjustments from chiropractors.

Other Sources of Help
You can receive help with emotional problems triggered by long-term illness from psychologists and therapists. They work both with individual patients and with families. Massage therapists provide relief with hands-on treatment. Nutritionists address problems with nutrition and food allergies. You may also get help from teachers and group leaders if you join exercise programs or take classes in subjects like yoga or Tai Chi. Lastly, fellow patients, while not professionally trained to treat CFS or FM, can provide support, understanding and inspiration.

Finding a Doctor

You can be forgiven if you are frustrated about finding sensitive and appropriate medical care. Studies suggest that it typically takes several years to receive a diagnosis of CFS or fibromyalgia, a period in which patients are often dismissed and their complaints ignored. I would encourage you to persevere in your search for doctors who believe you when you say you are sick and who treat you with respect. In our experience, patients who have sought sympathetic and knowledgeable physicians have usually found them.

How do you find a doctor who is knowledgeable and whom you trust? One good starting point is referrals from fellow patients. Support groups are often a good way to meet other patients. The CFIDS Association of America maintains a state-by-state list of CFS support groups in the United States. They will mail a list of groups in your state at no cost. (You can contact them at 800/442-3437 or through their website: www.cfids.org.) The Arthritis Foundation sponsors fibromyalgia support groups in many places and offers an online directory of their groups at their website: www.arthritis.org. Local chapters of the foundation provide physician referrals. For other lists of FM support groups, see the Immune Support website (www.immunesupport.com/supportgroups/) and the site for the National Fibromyalgia Association (www.fmaware.org).

Other resources for finding doctors include the Fibromyalgia Network (www.fmnetnews.com), the “Good Doctors” list at Co-Cure (www.co-cure.org/Good-Doc.htm), the FMS Community website (www.fmscommunity.org/findingadoctor.htm) and Devin Starlanyl’s site (www.sover.net/~devstar/provider.htm).

Visits

Your doctor and other health care providers are important allies in your effort to live well with your illness. This section contains some suggestions for making these relationships productive. I’ll focus on the doctor/patient relationship, but the principles apply to most of the other providers as well.

Because you have a long-term condition, you have the opportunity to establish long-term relationships with your physicians. As with other significant relationships, you should feel comfortable expressing your ideas and discussing alternatives. You should also be able to negotiate a treatment plan acceptable to both of you. Because there are no standard treatments for either CFS or fibromyalgia, and because treatments may be effective for only a period of time, you and your physicians should agree that treatment will consist of experiments. Some of the experiments may work; some probably won’t; and others will work, but only for a while.

If you have found physicians who are supportive, who want to help you feel better and who are willing to experiment to find which treatments help you, the biggest obstacle to a good relationship is time. Particularly today, doctors work on a tight schedule that often leaves them as frustrated as patients. By viewing your visits with them as professional meetings, you can structure your time productively. One way to make your visits productive is by “taking P.A.R.T.” The letters mean Prepare, be Active, Repeat, and Take action. (This acronym is adapted from advice about doctor/patient relationships in The Arthritis Helpbook.)

Prepare
Prepare for the visit by asking yourself why you are going and what you expect from the doctor. Make a list of your questions or concerns. Are you worried about a new symptom? Would you like a new medication? Do you want the doctor to submit a document supporting a disability claim? Write down your concerns, recognizing that probably no more than two or three issues will be addressed in one visit.

As part of your preparation, consider rehearsing a concise description of your symptoms and situation. Studies suggest that doctors allow around 20 seconds for a patient to describe her concerns before interrupting, so be prepared to state succinctly your concerns and what you want from the doctor. Describe your problems and goals concretely, so the doctor knows they are manageable within the constraints of the appointment. Instead of saying, “I have a lot to talk about today,” begin with something like “I want to talk about my pain.”

Your opening statement might include when your symptoms started, where they are located and what changes in your life might account for them. Also, consider reporting on previous treatments, such as the effectiveness and side effects of a medication. If you are uncertain about whether you can explain yourself adequately or remember the doctor’s response, you might ask a family member or friend to accompany you.

Be Active
Take an active role in your appointment. Begin the visit by describing briefly your main concerns. You might say something like, “I came in to talk about improving my sleep. I’ve been having trouble falling asleep. I wake up several times during the night. And the drug I’ve been taking doesn’t seem to be effective any more.” You may want to include a reference to your thoughts and feelings about the problem. For example, if sleep is your problem, you might say, “I’m concerned because I’ve been doing better overall and I’m afraid that poor sleep may make all my other symptoms worse and I’ll be back where I was two years ago.” If you have a written list of concerns, give it to the doctor.

In addition to making a clear and concise statement of your concerns, take an active role in the meeting by interacting with the doctor. If you don’t understand something, ask her to explain it again. If you think a proposed treatment won’t work or you are unwilling to try it, tell the doctor. Ask when the effects of a treatment are likely to appear and how long you should continue a treatment. Ask about side effects of proposed treatments and what alternative treatments, both medical and lifestyle change, are available. Ask also about the likely results from not treating. If your insurance doesn’t cover all the proposed treatments, make your financial constraints known.

Repeat
To check your understanding, repeat back to the doctor the key points she has made. For example, you might state that you understand the doctor is recommending you treat your sleep problem by taking two medications, one to help you fall asleep and the other to help you stay asleep.

If you don’t understand or are not clear, ask the doctor to repeat. The purpose of repeating is to make sure that you and the doctor have a common understanding of the discussion and to clear up misunderstandings of the diagnosis and of the steps you will take after the visit.

Take Action
As the visit is ending, make sure you are clear about what you are expected to do as a result of the appointment. Imagine that you are back home and want to follow-up on the visit: do you have all the information you need and do you understand what the doctor has asked you to do?

If you discussed a medication, did you receive a prescription? If so, do you understand how long you will take the drug, how many times a day and at what hours to take it, and what kind of side effects to expect? What about follow-up? Does the doctor want you to return? If so, how soon? Is it OK to check in by phone or to contact her only if you have a problem? If you are not clear about what you should do as a result of the visit, or you are not certain you can remember, write down the doctor’s instructions or ask the doctor to do so.

Reference

Lorig, Kate and James Fries. The Arthritis Helpbook. Cambridge, MA: Perseus, 2000. Fifth ed.