Back then fibromyalgia was not recognized by the medical community as a “real” ailment. Doctors considered it to be a syndrome: Unexplainable, unverifiable and psychosomatic. It was a Hysterical Middle Aged Woman’s Syndrome, as doctor after doctor told me. based on test, after expensive test coming back negative. I was told nothing was wrong with me and to go home and “Get a life”.
Forever imprinted in my memory is an appointment with the chief of neurology at one of Los Angeles’ major medical schools (the doctor and medical center shall remain nameless because this is a true story) He reviewed the test findings, looked at me knowingly – as if we shared a secret – and said, “You’re a psychotherapist. You know about psychological issues”. He leaned forward, compassionately touching me on the knee and winked, “Go home, live a good life and take up a hobby like kick-boxing.” The only reason I winked back was to blink away the tears that were threatening to disrupt the façade that I wasn’t a hysterical middle-aged woman.
I searched for anyone – gynecologists, gastroenterologists, cardiologists, neurologists, rheumatologists, environmental specialists, acupuncturists, immunologists, chiropractors – to name to what I had, to give what was invisible to everyone but myself a label other than HYPOCHONDRIAC. I looked fine, acted fine, and thousands of dollars of medical tests came back negative. All I took away from the 100’s of doctor’s visits was a stack of psychiatrist’s cards doctors handed to me on the way out of their office.
After years of pain, escalating exhaustion, depression, countless doctors and tests I did qualify, on all counts, as a hysterical middle-aged woman .
Well over a decade later fibromyalgia was recognized by the medical community as “real”. Current research indicates it might be a neuro-inflammatory/auto-immune disease impacting the central nervous system. No one knows for certain and there is no current cure.
I’m no longer middle-aged or hysterical.
But the doctors were right – it is, all in my head.
May 12th was chosen as it is the birthday of Florence Nightingale. She was believed to have suffered from ME/CFS.