The Biggest Hurdle of My Chronic Pain Shouldn't Be the Medical Establishment
The single greatest hurdle I have faced as an individual with chronic pain has not been managing my pain effectively, or spending many long, grueling hours in physical therapy, or paying my tremendous monthly medical bills. The greatest hurdle I have faced as an individual with chronic pain has actually come from the medical establishment itself – the biases of doctors, our culture and the insurance industry.
If a patient goes to the doctor with symptoms that are visible and easy to understand, they receive immediate reassurance, belief and support from their medical provider. When the issue is clear-cut, and especially when it is readily visible, the doctor is reassuring and the remedy flows freely.
Such has not been the case with my years of chronic pain. When I went to the urgent care center with a broken wrist, nobody doubted that my wrist was broken, or that the pain associated with it was real and valid. They could see the break on an x-ray – there was proof that it existed. But when I went to the doctor because of chronic, unremitting pain in my joints and in my back, the medical establishment as a whole was much less accommodating. I was referred to a “pain specialist” who spent a full three hours interrogating me about my symptoms – their quality, their length of duration, and what exactly I had tried doing to “fix” the situation. His approach was aggressive, and his questions felt designed to catch me in a lie. I did not feel like a patient speaking to her doctor; I felt like a defendant being cross-examined in a court room. And then, on top of it, he refused to do anything to help me, and my insurance would not foot the cost of the visit because there was “no proof” that it was a medical necessity.
Most of the people with chronic pain I speak with tell a similar story. Many of us are treated like hypochondriacs at best, malingerers at worst, and generally with some level of disdain. If they believe us at all, they usually think we are blowing our pain out of proportion. After all, how could a person be in such serious pain for so long? How could I function? I must be lying, or making a mountain out of a molehill. It can’t be that bad.
It feels like the system is designed to push people with chronic pain to the margins through a many-leveled system of abuse. It starts in medical school, where not enough is done to educate doctors about the reality and validity of chronic pain. Many of the doctors I have come into contact with in a clinical setting, as well as those I know personally as friends, have admitted as much. They just aren’t taught how to deal with the issue with either compassion or objectivity – their personal, subjective feelings about the validity of chronic pain color their treatment.
It continues with the negative associations our culture makes with chronic pain. Many people who seek care for pain are painted as drug-seeking, unstable or both, and are denied the medication they need to function reasonably well. So the biases that doctors have individually are perpetuated at the cultural level, and people who genuinely need help managing their pain may not be given any respect or relief. (A further note: people who are drug-seeking because they have an addiction need help, too! They are also struggling, just in a different way, and their problems are also very much real and deserve our attention and compassion.)
Finally, the abuse extends to the level of insurance companies, who are often loathe to provide support for the needs of people with chronic pain. The Affordable Care Act has done a great deal to reign in the dangerous biases insurance companies had in denying care for chronic pain disorders, but with Republican lawmakers swearing to repeal the ACA, those biases may be brought back in ways such as: denying insurance to people with certain pre-existing conditions, refusing to provide coverage for mental health disorders, refusing to cover physical therapy costs, etc.
We need to push for systemic changes that occur on many levels to address the biggest hurdles faced by people with chronic pain disorders. Changes have to occur in medical schools across the country, to educate future doctors concerning how to provide the most compassionate, well-reasoned care possible to their patients. Those compassionate alterations have to extend to our culture broadly. More humane, realistic portrayals of individuals with chronic pain in our media would help, as would lending a greater voice and platform to writers with chronic pain and health promotion campaigns that legitimize chronic pain disorders.
Finally, laws that hold insurance companies accountable to their consumers and protect patients from discriminatory practices must be defended at all costs. We cannot allow partisan politics to strip health insurance coverage from millions of Americans. This is not a Democratic or Republican issue – it is a human issue that affects people from both sides of the aisle, and any problems with the Affordable Care Act must be addressed in such a way that protects the rights, and in fact the lives, of the real people who rely on it.
If we can make these changes, then maybe the biggest hurdle facing patients with chronic pain could actually be our chronic pain.
We want to hear your story. Become a Mighty contributor here.
Thinkstock image via megaflopp.
Katherine obtained her B.A. in Anthropology in 2012 and her M.S. in Health Education and Behavior in 2015, both from the University of Florida. In addition to being an EDS zebra (which is kind of a full-time job itself some days), she works in social services and as a freelance writer. She shares an interfaith home with her wonderful girlfriend and their menagerie, and in spite of the chronically ill struggle, life is pretty darn rad.
katherine-harris