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How the Media Has Failed Pain Patients in Their Coverage of Opioid ‘Effectiveness’

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As many of you know, earlier this month CBS News published a study about chronic pain and opioids. The title, as it was locally, was  “Prescription opioids fail rigorous new test for chronic pain.” I was naturally curious about this new study and what their proof was. Almost immediately, I was filled with a deep regret. I should never have clicked that link.

You see, I’ve been dealing with chronic pain from fibromyalgia since I was a small child. Back then, we didn’t know what it was and, like most people I’ve spoken to who have had similar situations, it was labeled “growing pains.” At age 15, I injured my back for the first time. Since then, I’ve undergone countless MRIs, X-rays and CT scans. I’ve had nudmerous injections in my back and spine. I’ve had a microdiscectomy and, through that surgery, I’ve been diagnosed with two degenerative diseases in my lumbar as well as spinal stenosis (which, alone, is remarkably painful). I have bone spurs in my neck as well as dystonia/torticollis (which, if untreated, can lead to head and neck deformities and is one of the most painful chronic conditions in the world). I’m 35 now and I know what it’s like to go through constant, severe pain for years with little to no hope of treatment. Over the years, the only thing that has been in any way helpful in treating my pain has been opioid pain medication and, at one point, marijuana (which I cannot use currently due to a contract with my primary care physician and the cost; health insurance does not cover medical marijuana).

While this study was published in the Journal of the American Medical Association initially, the media coverage of it has been misleading at best. In the headlines of the articles, they generalize the key word: “pain.”

This can not and should not be done. For example, my dystonia/torticollis pain is wildly different than my fibromyalgia pain. The pain in my neck from the dystonia/torticollis is more excruciating to me than childbirth was. It creates a distinct feeling in my neck as though there is a brick sitting just under my skin. No amount of massage releases those muscles. The only thing I have found that helps treat that pain is valium due to its effects on the muscles of my body. My fibromyalgia pain, on the other hand, is very different. It is pain without cause. It doesn’t need a cause.

That pain alone is constant. It is daily. It is there when I sleep and when I’m awake. It can feel like a painful burning, a tickling that aches, nerve pain, a deep bruise, a pinch, a spasm and so much more. My other conditions are exacerbated by it (they get along too well if you ask me). The only things that seem to worsen my pain are extended periods of physical activity, extended periods of physical inactivity and heightened emotions. That last one is where it gets me. You see, I’m an empath. I feel the emotions coming off people around me. That means that, if I’m sitting in a room with someone and they are suddenly angered or saddened, I can feel it and I feel it as though it is my own anger or sadness. There is no reason behind it, but it’s suddenly there. Those emotional extremes alone are enough to worsen my physical pain.

I recently saw a study connecting chronic pain to adrenaline release in the body. What causes adrenaline releases besides those signature “adrenaline rushes” like cliff-diving, sky-diving, near-misses with a car, etc.? Well, believe it or not, extreme emotional reactions. Anger, sadness and even happiness. People like me struggle more when we have chronic pain for this reason. I know I’m not alone in wanting peace and stability here.

But, moving along, the media generalized the word “pain.” As I said, this can not be done. The study was targeting osteoarthritic pain patients, not patients who struggle with conditions like fibromyalgia, lupus, Crohn’s disease, chronic fatigue syndrome, etc., etc.

We were left out. Why? Honestly, I don’t know. I know what osteoarthritis pain feels like and, while it can make movement difficult, I am able to treat mine with NSAIDS, heat and cold. My chronic pain, however, cannot. Tylenol and ibuprofen do nothing for my fibromyalgia, my spinal degenerative diseases or my dystonia/torticollis.

I’m at a point where I am desperate for the media to offer equal representation to the chronically ill and in-pain communities of this country. I’ve cited my own article with its listed sources and studies (“The Facts About Fibromyalgia and the Opioid Crisis I Wish People Understood”) to my local media, asking them outright, “When are you going to talk to the people who are in the chronic illness and chronic pain communities?” I have received absolutely no response. I have, however, received overwhelming support in my questions and, through that support, evidence that we are not being heard. We are not being answered. We are being marginalized and ignored.

My deepest fear here is that we will continue to be ignored to the point that we become more forgotten than we already are and that it will lead to the unnecessary suffering and death of millions of people in the United States who live with chronic pain and chronic illness. I am terrified by that thought. I am scared that, unless we speak out louder and in bigger numbers, things will only get worse. I would love to argue with myself here. I’ve tried to, but things seem to be progressing at an alarming rate. I’m wondering what we need to do to be heard more and, honestly, I’m coming up empty-handed.

As disheartening as this is, the news media must be held to task for their misleading reports and generalization and marginalization of the chronic pain and chronic illness communities. I, personally, refuse to look the other way any longer. Every article I see, every report I hear that takes my voice away will be met with a louder, more blatant voice and with the same question attached to it: When will you consider the chronic illness and chronic pain communities?

Maybe someone will answer and start the conversation. Maybe, I hope, we will receive representation. We desperately need it.

Originally published: March 22, 2018
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