A Pained Life: Disbelief

A Pained Life: Disbelief

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.

bigstock-medical-exam-7540763And 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 Levy

Carol Levy

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.

Carol is the founder of the Facebook support group “Women in Pain Awareness”. Her blog “The Pained Life” can be found here.

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.

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Authored by: Carol Levy, Columnist

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Imagine when it happens when one gets RSD from an error in a hospital. In fact more than 60% of all RSD (if not higher) results from a surgery or hospital procedure.

The myth that RSD ‘pops up out of nowhere’ really needs to be addressed. When the disease was first discovered during the Civil War - no one assumed the men got it from nowhere - they got it from gunshots.

In 2006, nerve damage was determined to underlie RSD. Its 2014 and still, the medical community in the US continues to talk about it like it ‘pops up.’

Let’ call an Open Source contest for experts to try to solve RSD since its been around, well, since the Civil War. 2014 now.

So, add in not only is the disease not believed, but when a hospital fights back, takes advantage of that limited knowledge of lay people to protect itself and its doctors, it can be shameful.

Leaving someone without their ability to work, taking advantage of poor people, how very sad our system has become.

Malpractice reform was PR that served the same health care system that has such a high rate of injury and death in its system.

Add on any public agencies that the doctors hide their error and bam! the problems pile on.

Millions of Americans…..

oh, by the way, my RSD is so rare, I’ve been laughed, insulted and had the police called on me in more than 6 neurology departments in my major US City since the injury five years ago.

So, yeah, I still don’t have appropriate medical care.

Thanks for this great article. It might help to change this very big issue, and I appreciate you shining light on our experiences and being an inspiration.

Dennis Kinch

This is beautiful. And your article says how it really is. We fall into our beliefs that someone is a malingerer or “faking it” or looking for attention. We do this with a sense of sadness, as though “we lost another fighter,” and sometimes with a malice towards another.

Of all the people in pain I interviewed this was the number one point of contention, by far…Validation. Family, friends and loved ones being the top, then doctors and insurance agents to follow. With loved ones it is based on denial, that they don’t WANT the person to be sick or injured or weakened in any way. The others are based in frustration. They are tired of dealing with patients who can’t get diagnosed or who don’t conform to standard treatments.

Then there’s a 3rd kind based in an opinionated, self serving bigotry, to make someone else feel bad so they can feel good. The know-it-all, the simpletons who think everyone but them is just trying to milk the system and find an excuse not to work. This kind exists everywhere, in every category and are the real downfall of chronic pain treatment.

Imagine the poor patient; no diagnosis, family and friends thinking they’re “lazy and going downhill, probably because they’re drug addicts now!”, or their doctors thinking “they’ve fallen so far into the “Cycle” they won’t be able to get out,” or worse yet, “they have talked themselves into becoming addicted to drugs and now come to me to get their fix.”

But worse yet, the co-workers standing around the water cooler talking about “how bad it is that you just don’t feel like working anymore, that you just want a way out. That you’ll probably sue the company to get money for your drugs!”

This may sound ludicrous but all of it happened to me and most unfortunate, all of it cost me my jobs, my finances, my houses, my friends, my kids, and even myself esteem. The power of what is said behind our backs can have real consequences. To this day, years after finding my way out of the “Cycle”, I still have an enormous fear of not being believed!


SO thought provoking. Horrible that some have to endure serious physical pain AND the pain of not being taken seriously.


Carol- great article!