A Different Perspective on Disbelief

By Carol Levy, PNN Columnist

I was watching a 2009 episode of Law and Order. The plot line revolved around a fetus who had Ehlers-Danlos syndrome (EDS). They talked about the trials the fetus would face if born, because he would have “fragile” skin that could tear at the slightest touch.

Never once was chronic pain, a major aspect of the disorder, even mentioned. I wondered why they ignored such an essential part of living with EDS. Could it be that the idea of chronic pain is foreign to most people, including scriptwriters? Not a novel thought by any means, but then I took the idea further.

Most of us know what a sprained ankle, aching tooth or thumb hit with a hammer feels like. It hurts like heck, but we know it will go away. We do as much as we can to make it stop as quickly as possible. Pain is something our bodies and minds abhor. And rightfully so.

For most people, acute pain is short lived. It does not disable us, at least not for more than a few hours or days. It is not debilitating. It does not take over our lives.

But for some of us, the pain lingers and becomes chronic. It changes our lives irretrievably. Our experience is antithetical to what most people know and how they experience pain. We still expect them to understand, but way too often they don't. And it is upsetting, even maddening, when they don’t.

But maybe it is not merely that they don’t “get it.” Our minds and bodies are created in such a way that we are meant to turn away from pain. Maybe that also means to turn away from the horrible idea that there can be pain that does not heal and does not go away.

It is easy to think – and hope -- that if I explain my chronic pain to those who deny it, who call me a hypochondriac or malingerer, that they will ultimately come around and understand.

Not understanding, or being unwilling to understand, always seemed to me as a failing in the other person; a lack of empathy or compassion. But maybe it is more than that. Maybe it is a biological and psychological imperative. To accept that pain can be chronic is anathema to the way our minds and bodies are programmed to respond to pain.

Not an excuse, but maybe a way to understand when someone says, “I don’t believe you.”

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 is the moderator of the Facebook support group “Women in Pain Awareness.”