I read two books about chronic fatigue syndrome recently: The Doctor's Guide to Chronic Fatigue Syndrome and Hope and Help for Chronic Fatigue Syndrome. A lot of what I read applied to me. The books were both published over 10 years ago. The authors wrote about how many doctors do not believe in chronic fatigue syndrome, or understand it. It's amazing that more than a decade later, that is still the case. My doctor told me that there is some debate over whether chronic fatigue syndrome exists, and I know from discussing some symptoms and tests with her that she does not know what she is doing when it comes to chronic fatigue syndrome. I tried changing doctors once, but I felt the new doctor was even worse, so I changed back.
I was better for a while. Last summer and fall, I thought I was cured. But the books say that that's what it's like. Sometimes you're better and sometimes you're worse. Even when you're better, you not as good as you were before. When I thought I was cured, I was ignoring the fact that I still had to avoid strenuous activity.
The books chronicle the struggle of going to doctor after doctor and being told alternatively that it is just a cold and will be better soon, that it might be something dreadful, that it's depression, and that there's nothing wrong with you. The books talk about how people with CFS are perceived as not looking sick. They describe how many individuals just give up on talking to anyone about being sick, because the responses people give just make it worse. Instead, patients just try to pass for normal. As the web site of the CFIDS Association of America says, "Recognize that although the person may seem 'normal' when you're together, you may not see the relapse which follows activity. Many people with CFIDS want to function at their best when with their friends, but privately pay a price later."
The trouble with healthy people is that they can't comprehend that not all bodies work the same way theirs do. They think you just need to exercise more, socialize more, improve your attitude, or whatever, and then you will be fine. Sometimes I used to try to explain to people who said things like that that it doesn't work that way. But they would never believe me, so I don't even bother. I tell them once what things are like for me, and after that, I figure, if they don't believe me, that's their problem. I'm not going to bother to talk to people if they're not going to bother to listen.
The Doctor's Guide to Chronic Fatigue Syndrome says, "the single greatest treatment offered by the physician is an accurate diagnosis." I am so tired of everyone telling me, "You don't look sick," and, as a result of no one believing me, being expected to function as a normal person. I have started trying to find a doctor who can actually diagnose me. I don't know if I will succeed. So far I have just found dead ends.