Sunday, April 10, 2011

The Stigma of Chronic Fatigue Syndrome | Psychology Today

When doctors ask what's wrong with me, I can give one of two answers, neither of which is satisfactory in the context of obtaining quality health care for myself and others with CFS. That leaves me in a no-win position in the doctor's office.

Option #1: If I say, "I have Chronic Fatigue Syndrome," I'm likely to be discredited as a witness to my own condition. I've had doctors tell me there's no such thing as Chronic Fatigue Syndrome. One doctor said: "Just drink some coffee."

Option #2: If I say, "I contracted a serious viral infection and never recovered," it goes down better, but by saying this, I'm undermining the effort to bring legitimacy to the illness. Legitimacy means research money

... "What's the diagnosis?" I was cornered. "Chronic Fatigue Syndrome," I said. I watched him disengage from me. He swiveled on his stool, put his note pad down, turned back to me as if we'd just met and said: "What have you come to see me about today?"

On March 11th, Dr. Montoya said in a talk at Stanford University that it was his dream that the medical community would someday produce a formal apology to patients for not believing them all these years when they said they were facing a real illness.

Millions of us share your dream, Dr. Montoya.

* * *

You're not alone.  I also have had doctors change their opinion of me as soon as I say CFS.  I'm no longer physically ill (no matter what their eyes tell them) -- I'm just depressed and they don't have to listen to any other symptom I bring up.  Whatever it is, it's psychosomatic.  No tests, no x-rays, it's all in my head.  I was even imagining the pain from three fractured vertebrae.

The good news is, we now have two bulldogs in Dr. Judy and Annette Whittemore fighting for us.  If an apology is to be had, those two will get it for us.

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