(Health Secrets) This is the final article in our series to help you recover from chronic fatigue. We hope it is working and you are already felling better, or at least more empowered. If you are just tuning in, the other four articles are easily accessible on our site. So let’s rap it up with advice for dealing with the medical establishment.
Dealing with conventional doctors and other medical personnel
Very few people can totally avoid going to a doctor. Hopefully if you suspect that you have chronic fatigue, you also have access to a health care provider who is both knowledgeable and understanding of the disease. Many states have naturopaths, and that is often a good choice. Your chiropractor can also be of great help. If there is any way you can afford an alternative health doctor, you are much more likely to get real help and understanding. With that said, this just isn’t possible for many readers. If you do explore this possibility, don’t just accept the natural or alternative health label but research the practitioners. Look at patient ratings, call and talk to staff and the doctor if possible. You need to be the one in control regardless of what kind of practitioner you end up seeing.
We may all occasionally be stuck with seeing a doctor who knows little about chronic fatigue and only knows how to prescribe drugs to mask symptoms. Worse yet, you may find yourself with a doctor who believes chronic fatigue is a psychiatric illness. Most conventional doctors still place chronic fatigue syndrome in the mental illness category or are dismissive of it altogether. All of these attitudes are demeaning to you as a person. Going to an appointment with the awareness the person you are seeing is probably not going to understand your disease can make it a little easier when in fact he does not. Being prepared is your best defense.
You can challenge your doctor’s beliefs but don’t do it in an aggressive or angry manner. Be assertive, straight forward and factual. Don’t allow yourself to get emotional, even though it may be difficult to do so.
Although this may seem cowardly, if the Chronic Fatigue Syndrome diagnosis isn’t essential to your treatment, don’t even bring it up. If the physician simply won’t listen, is dismissive, wants to treat you for depression etc, walk out unless it is an emergency situation. Simply tell him/her you don’t believe you can have a successful doctor/patient relationship. Don’t just settle for any doctor. Find one who is willing to work with you and willing to learn about chronic fatigue. A few key points to keep in mind:
* Always have a list of your medications and supplements with you. Don’t count on your memory or on medical records being accurate. Many practitioners will ignore supplements but if you provide a list including dose and why you are taking it, they can’t turn around and say “You didn’t tell me about those.”
* Be able to talk a little about the case definition of chronic fatigue that we discussed in part one of this series, especially the prolonged recovery period after exertion. Don’t just say “I’m tired” but instead, “Just coming to this appointment is going to leave me unable to do anything for at least a day and probably longer” and/or “I need to lie down for an hour after taking a shower before I can do anything else.” Another simple but effective tool is to use the term Myalgic Encephalitis (ME) rather than chronic fatigue. When you use the word fatigue, people immediately say “Oh you’re just tired, I get tired too, you can just work through it”. They don’t understand how what you are experiencing is any different. Myalgic Encephalitis says you have pain and brain inflammation, and gets their attention. It indicates something major is happening to you. It’s just semantics but it makes a huge difference in how others, including medical personnel, perceive your illness. Only the U.S. continues to insist on using chronic fatigue instead of Myalgic Encephalitis.
* Be aware that many persons with chronic fatigue react strongly to medications. Know your body. The fewer medications you can take, the better off you will be.
* If they want to run tests like CT scans, MRIs etc., find out if the result will make a real difference in treatment. Many of these tests require preparation, then hours at a facility and large doses of radiation. It is very difficult for a person with chronic fatigue to undergo these procedures, so feel free to refuse unless really necessary. A lot of times, the test is ordered for no other reason than fear of liability. You have to be very aware of risks vs. benefits for any procedure.
* Try to avoid multiple appointments close together. This does not allow sufficient recovery time and can cause relapse or major set back. Taking care of yourself physically and emotionally can go a long way toward keeping you away from doctors.
Often a doctor willing to prescribe natural thyroid hormone rather than Synthroid is more knowledgeable about many conditions such as chronic fatigue than most conventional doctors. If nothing else, they are often willing to listen and learn.
Doctors practicing environmental medicine are usually very knowledgeable about chronic fatigue because chronic fatigue and multiple chemical sensitivities often go hand in hand.
* Know your body. Learn to read the smallest sign of a possible problem. It may even be necessary to keep a diary of things that cause problems for a while as discussed in The Spoon Theory.
* Don’t be afraid to say no. Set firm limits with family, friends and others with unrealistic expectations.
* Arm yourself with knowledge and be your own advocate. Nobody but you knows how you are feeling, and you are a lot more than numbers on a lab slip or other test results.
* Find a knowledgeable doctor or at least a provider who is willing to listen and learn.
* Investigate other healing modalities and integrate them into your daily routine.
* Go to a gluten free, dairy free, whole food diet. Strongly consider becoming completely grain free. There is an autoimmune/inflammatory component to chronic fatigue and grain and dairy proteins can exacerbate this.
Help finding an alternative health practitioner