The Mask of Invisibility and Me

In 1996 I contracted an invisible “illness”.  I began experiencing excruciating burning pain in my hands, arms and legs followed by gastrointestinal, cardiological, dermatological, emotional “issues”.  The worst part is I was also in peri-menopause and experiencing mood swings, wildly, uncontrollably ric-o-shaying between happy, content to annoyed and upset.

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In1996 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 – that nothing was wrong with me and to go home and “Get a life”.DSCN1413

Forever imprinted in my memory is the chief of neurology at one of the major medical centers in Los Angeles (the doctor and medical center shall remain nameless because this is a true story)  looked at me knowingly, like we shared a secret “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.

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I looked for anyone – gynecologists, gastroenterologists, cardiologists, neurologists, rheumatologists, environmental specialists, acupuncturists, immunologists, chiropractors – to put a name to what I had, to give what was invisible to everyone but myself a label other than HYPOCHONDRIAC.  I looked fine, acted fine, all tests were 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 escalating pain, exhaustion, depression, countless doctors and tests I really did qualify on all counts as a hysterical middle-aged woman .

Well over a decade after my initial symptoms fibromyalgia was recognized by the medical community as “real” and research has since shown that it’s a central nervous system, brain processing disorder.  

I’m no longer middle-aged or hysterical.  But the doctors were right – it was, it is, all in my head.

This is National Invisible Illness Awareness Week

P.S.  There are hundreds of millions of people with “Invisible Illness” in this world.  Click above to  read more information.  Here’s a tiny sample:

  • Why, when you tell someone who is ill that they look good, they’re offended?
  • Practical ways you can encourage someone who is ill.
  • What’s the difference between a visible and invisible illness when it comes to one’s career?
  • What’s it like to go to college with an invisible chronic illness?

 Check out Carolyn Thomas’ My Heart Sisters –“You look great!” – and other things you should never say to heart patients and lots of other great posts about invisible illness.