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.

10 thoughts on “The Mask of Invisibility and Me

  1. I had a neurologist once tell me, as a headache swamped my sensibilities and my blood pressure skyrocketed, that I should ignore it. He did. I found a new doctor. Who, truly, wasn’t a lot better.

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    1. Jacqui,
      I wish I could say how unbelievable it is for a neurologists to tell you to ignore those kind of symptoms but unfortunately it happens too often for people (women in particular) to be dismissed in the way you describe. I have experienced the younger generation of doctors being a bit better with bedside manners.

      (I follow Carolyn Thomas’ blog Heart Sisters -it’s excellent, well written and researched – where the stories of women in the throes of a heart attack being dismissed by doctors is mind-boggling – particularly since heart disease is the number one killer of women!)

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    1. Aeeda,
      Thank you for your compassionate response. People who have gone through, are going through, searching without finding answers, seeking without finding relief “know” that journey intimately and understand.

      In a strange way my journey with fibromyalgia (and suffering) has made me a better, more compassionate person. It probably isn’t the path I would have chosen but it was the one I was given. The trick for me is to continually try to figure out how to walk that path gracefully. Ain’t easy.

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  2. I’m not hysterical, nor am I a women. But I am more than just my physical body. So I understand. If we are body, mind and spirit, why do so many medical practitioners look at the lack of physical symptoms and pat us patronizingly on the knee? You should have slapped his face.

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  3. Hi Judy-Judith and thanks for including a link (and kind words!) about my “You Look Great!” blog post on Heart Sisters. Reading your compelling story reminds me of how handy it would be if only we sported a neck brace or leg cast or something that would immediately indicate to doctors like that Chief of Neurology (may he suffer with intractable undiagnosed pain for a decade or so…) that hey! something is clearly going on with this person and we need to find out what.
    hugs
    C

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    1. Carolyn,
      You might be onto something marketable — a body suit that people could wear to doctor appointments with velcro attachments indicating where the pain is complete with a pull on “face” mask with various expressions of agony that can be adjusted through your smart phone . . .

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