This is a comforting concept to write our stories, in a way — because having ME means being misunderstood.
Just to keep it short, I was knocked out in a car accident at age 8. A few months later, I had muscle tremors, chronic fatigue, and other symptoms — like heart palpitations — that increased with age. I was misdiagnosed by each medical specialist that I visited. And being male, I have been told that I have a “woman’s disease.”
I finally got a diagnosis of fibromyalgia by various rheumatologists in 2000 which is over 20 years after my accident. The first rheumatologist tried to sell me a book he wrote (which he actually copied from a book called The Artist’s Way). Various health food stores always have some kind of elixir, vitamin supplement or product to sell to me (none of which do much — I call these people “placebo pushers”).
Having ME turns a patient into a marketing target. Furthermore, I had an appointment with a naturopathic doctor, at a leading naturopathic college in Canada (in Don Mills, Ont.). After wasting my time and Dollars with a blood test and earnest check-up, I was told to “take a cold shower” by the supervising “doctor.”
I am too sick to work. I had a successful fashion design biz, doing my sales/promo/press in New York City. Now, I can barely get any understanding from my mates and family — because I don’t look sick.
Thus fibromyalgia is insidious and destructive both due to the physical harm, and the psychological.
ANON from Toronto
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