The other day I was thinking about Michael, an acquaintance of mine. It was the early 80’s, in New York City. My friend, John, told me about him.
“He’s in the hospital ICU. They don’t know what’s wrong. He keeps getting these infections. Every time he gets over one, he gets out of the hospital. Then, bam, one week, two weeks later, it’s the same thing and he’s back in the hospital.”
“Oh how awful.” I said.
John, a sweet and very kind man, replied, “No. We keep telling him it’s psychological. He’s depressed, a hypochondriac. He wants to be sick. He wants attention. We keep telling him to snap out of it.”
How sad. But it became sadder later.
“Michael died,” John told me, “He really was sick. He had AIDS, the eighth person to die of it.”
At that time AIDS was barely known. People like Michael who had the HIV virus were treated poorly and disbelieved.
And that reminds me of Mary.
This was in 1981. Mary had had a statue fall on her foot. As a result she had full body pain.
Not only the doctors but the patients at the pain clinic we were attending, including me, I am embarrassed to say, thought she was a malingerer, making it up.
Something fell on her foot and now she has disabling body pain? I mean… come on.
Five years later, at my neurosurgeon’s office, I met another woman with a similar story. She had a small accident, injured her arm. Next thing she knew, she had disabling pain, not only in her arm but throughout her body.
The doctor came to the waiting area and began talking with us. He explained about her Reflex Sympathetic Dystrophy (RSD, also called CRPS). It was the first time I heard the term. That must be what Mary had. She had not been crazy. She had real pain, but because her story seemed so odd, crazy even, she was not believed.
My pain is from a neurovascular birth defect. Nevertheless, even after surgery proved the cause of my pain, doctors disbelieved me.
“Your pain is not as bad as you say,” one wrote.
So many of us have pain that does not fit neatly into a diagnostic box. Even when it does it may not matter. Despite 12 brain surgeries, members of my family still believe me to be a malingerer and hypochondriac; preferring that to the medical truth.
Michael’s story of no one believing him, must have been so devastating, so hurtful. I wonder if knowing his illness had a name would have given him some level of relief, having a name for what ailed him. Everyone would then understand he wasn’t crazy. He wasn’t hollering for attention.
I think this is an additional pain for many of us, fighting for belief.
Remembering Michael and Mary, and what they went through, makes me very sad.
But they also remind me that even if there is no name now, even if there is a refusal of belief, there can still be the hope of one. Named or not, what we have is real. Even if others deny it, we know our truth.
And through that truth can come strength and perseverance.
Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” Carol was accredited to the United Nations Convention on the Rights of Persons with Disabilities, where she helped get chronic pain recognized as a disease.
The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that! It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.