We Need To Do a Better Job Educating the Public About Chronic Pain

By Carol Levy, PNN Columnist

It seems the pain community is so sharply focused on opioids that we tend to ignore what may be a more important issue: getting the public to understand chronic pain.

I hadn’t given it much thought, but a recent conversation with a friend brought it home to me.

“Jennifer” believed that someone with gender or sexual identity issues could be helped through talk therapy, mindfulness and relaxation techniques. Basically, anything that would take their minds off their struggles with sexuality.  

I told her people in pain get some of the same suggestions.

“What you're saying reminds me of what many people say about those of us in chronic pain, that psychotherapy, mindfulness and relaxation techniques can relieve our pain or even cure it. In reality, they don’t,” I said.

“Oh yes, they can,” Jennifer replied. “You have pain management doctors who offer mindfulness, psychotherapy and relaxation techniques. So, you do have cures.”

I shook my head, somewhat in sorrow.

“No, people who have incurable disorders like mine, trigeminal neuralgia, or other painful diseases like CRPS, Ehlers Danlos, lupus or multiple sclerosis won’t be helped by mindfulness or talk therapy. Those types of things don’t end the pain or cure the disease.”

To my amazement, this woman who holds her convictions very dear, replied, “You just taught me something. I didn't know that.”

And why should she? It is rare, if ever, that we hear chronic pain conditions called by name. The media doesn't do it, and we don’t usually hear or say it in general conversation. The name of the disease or disorder, and the level of pain they cause, usually go unmentioned.

We do hear about back pain, knee pain and other “aches and pains” that can be helped by braces, heat therapy, relaxation, and so on -- which helps further the belief that chronic pain is easily treatable. That is not to say back pain can’t be as debilitating as other disorders, but it is so common that it is taken for granted.

I think some of the blame falls on us. Many people think we act like addicts when we clamor for opioid medication. We resist efforts to reduce the dose and refuse to consider other therapies, many of which we’ve already tried.

We ignore the reality that we do not have a “right” to opioids. We have the right to get healthcare when we go to the doctor, but they have the right to decide what therapy and medications they will prescribe, if any.

As long as we spotlight our need for opioids, while ignoring the public’s lack of knowledge about painful diseases and disorders that can’t be cured, the more I fear we will continue to be ignored and disbelieved. And the more we’ll hear about talk therapy and mindfulness.

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.” Her blog “The Pained Life” can be found here.