Tuesday, May 12, 2009

Today is CFS/Fibromyalgia Awareness Day!

The primary thing that patients want the world to know on Awareness Day is that CFS is a physical, not psychological, condition.
This is not merely a situation in which patients want to avoid the stigma of mental illness, but that thousands upon thousands of research studies have proven that there are demonstrable biological abnormalities, and that those physical problems are very similar to those in more recognized and more respected illnesses such as AIDS, MS and polio.
Counseling and anti-depressants have repeatedly been proven useless against CFS.  It is not, by any stretch of the imagination, a mental illness.  (Although the struggle to cope with major lifestyle changes and ongoing disbelief/derision for your debilitating symptoms can lead to secondary depression, just as many terminal cancer patients become depressed after receiving their diagnosis.)
Most CFS patients can trace their problems back to a specific infectious event.  One day they were happy and healthy, the next day they had a bug of some sort, and they were never the same again.  Mine started with a 105 fever.  I defy anyone to point to a purely psychiatric condition that starts with a prolonged high fever! 
Years later, I learned that the suspect in both CFS and polio was an enterovirus (a stomach bug), and mine definitely was that.  I had all the messy symptoms that come with stomach flu, but the 105 fever was higher than would be expected with garden-variety flu; this was something else, something stronger.
Unfortunately, because it looks so much like any other tummy flu when it happens, most patients don't see a doctor until months later, when it's too late to test for a virus; at that point, all they can say is that at some point in the past you had Virus X, but not whether that's the one you had that started the cascade of other problems that have brought you to the doctor.
What patients really want on Awareness Day is a little respect.  Stop attributing our symptoms to psychological problems or "inability to deal with stress" or laziness.  Stop blaming us for getting sick.  Stop blaming us for staying sick.
I'm still sick because I was refused the medication that could have gotten me back to work – I'd always gone back to work in the past!  Yet, when I told the doctor this was not depression, and that anti-depressants wouldn't help me, he refused to listen.  The real reason I'm disabled is because his ego was more important to him than my well-being; having decided I was simply depressed because I was a middle-aged divorcee, he would not order any medication or testing that would prove that he was wrong and I was right.
Millions of other patients are still sick because no one has found the magic pill that will cure us.  The blame for that needs to be laid at the feet of the pharmaceutical industry, not the patients – most of us lack the technical skills to do that research and have to rely on someone else to do it for us.  If I'd had the ability to do so, I would've done it – not 9 years ago when I finally got so sick that I lost my job, but 21 years ago when I was diagnosed, so that I wouldn't have had to struggle so hard the next 12 years to continue working.


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