Wednesday, April 11, 2018

The Punitive Drug War & Reductive Journalism are not Solving the "Opioid Crisis"

Image: An orange transparent prescription pill bottle lays on it's side, open, spilling pills and supplements onto a white surface. The pills are a variety of different shapes, colors, and sizes.
 
Content note: This post mentions medical abuse, drug addiction, suicide, and oppression. Read with care.

A friend of mine regularly sends me interesting or relevant news articles that she reads during her down time at work. She chooses everything from interesting research finds to things we can mutually hate-read and critique together. Today she sent me the reductive and insultingly titled "Is chronic pain something more people should accept? Amid the opioid crisis, the concept of “pain acceptance” is gaining credibility." Since I have not written more than book reviews on here in quite some time, I decided to share my thoughts on this article.

 Before delving into this, I want to say, I have an especially cautious reaction any time a journalist who does not have a background in science and/or medicine writes an article on science and/or medicine. It's not that I think they never should. I only have a Bachelor's in science and worked in research for 5 years- I'm hardly a world-renowned doctorate science expert and here I am writing about it. But, when I did work in research, I would hear the stories of researchers having their work reported on in the media in fanciful and often false ways in order to make the story better or draw connections between things the research didn't connect. In one case, the publication even made a FAKE GRAPH about my PI's results and put it into an article about his work. Or for instance, when articles came out about research showing plants respond in certain ways to their environment. What is more interesting, "Plants respond to their environments and environmental networks" or "NEW RESEARCH SUGGESTS PLANTS FEEL PAIN." The latter, however bullshit, gets you clicks. Basically, you cannot trust a lot of articles to tell the truth about medicine and research (including even some written by doctors, but that's for another post.)

The idea of mind over matter and pain acceptance is a nice idea. People like it because it creates the illusion of control. People without chronic pain especially like it because it allows them to have their prejudices against those with chronic pain while knowing if they ever develop it some day that they can just think their way out of it. While pain acceptance may work as a solitary treatment for the times that opioids are just thrown at people for a stubbed toe or whatever (I hear about this in the articles about the drug war all of the time but have never met anyone this has actually happened to,) it's really not possible as a singular treatment when you're chipping your teeth from grinding them trying to "accept" your pain even while you are on your medication. Or when doing things to "distract" aggravates your pain, when just breathing or turning your head makes it worse, and when pain medications are the only thing that lets you leave your bed or house. I worry about a lot of these narratives that are coming out about simple and magical alternative to pain management drugs that are going to solve the "opioid epidemic." These articles almost always fail to understand social factors and biases that go into such "crises." (I am using quotes because there have always been drug crises and it never became a focus until suburban white people began dying in larger numbers.) A key sentence in the article is highlighted, "Even people who believe that accepting pain has benefited them don’t necessarily think it should be used as a way to cut down on prescription opioid painkillers." Yet, it becomes buried in the hyperbole of an article that associates pain acceptance treatment with a solution for ending opioid addictions and deaths which are extremely complex issues. Rhetoric like this is even leading to Medicare- government health insurance for disabled people and/or elders, people most likely to need long-term pain management care- announcing that they are going to stop paying for some opioids. Let that sink in for a second.

The end of the article finally gets down to some of this:

Pain acceptance is not without its detractors. Vox recently devoted an episode of its podcast “The Impact” to pain acceptance. The episode called it “a possible future for pain treatment.” In response, the website The Mighty, which describes itself as “a digital health community” with more than a million users, published several posts critical of the idea. “The podcast prompted a backlash from people with chronic pain, who argued that saying a level of chronic pain is ‘acceptable’ essentially abandons chronic pain patients,” an editor for the website wrote in one post. “Rather than tell them they need to accept their pain, they need more pain-relief options, doctors who are willing to fight for them, and less stigma against using opioids responsibly.”
That backlash may be fueled by fears that some people with chronic pain have expressed that the health care system is leaving them  behind in the rush to condemn opioids. Some doctors and patients warn that the movement to decrease opioid use for chronic pain has gone too far, amounting to a dangerous overreaction that risks cutting people off from medication they need.

Will anyone absorb these incredibly important statements and follow these external links discussing how ridiculous the idea of "pain acceptance" replacing opioid treatments and helping solve the "opioid crisis" in an article written like this? All of the people with the most experience and information are a side note at the very end. Most of the chronic pain sufferers represent the critical voices at the end of the article, and the other two case studies are of people benefiting from acceptance therapy, one of whom may still be taking opiates (it never mentions if Gwen has stopped completely,) and the other who only survives her flares with an extensive amount of resources and a support system not available to many people.

"In contrast to traditional cognitive therapy, acceptance and commitment therapy asks people to accept thoughts, feelings, memories, and bodily sensations that are beyond their control, rather than attempt to change or get rid of them. The therapy then encourages people with chronic pain to take part in activities that add value and meaning to their lives, even as pain persists."

I don't believe I can honestly write a post like this without talking about myself. I have multiple chronic pain conditions. Chronic, severe constochondritis makes it difficult for me to breathe, speak, move my arm, and do many other daily motions and things most people take for granted. Joint pain from arthritis in pretty much every joint make walking, standing, sitting, lying down all painful or uncomfortable at best. Fibromyalgia that I was first diagnosed with as a teenager makes all of this worse and also causes my body to feel like it's covered in bruises and the worst sunburn of your life or like I have been hit by a car or have fallen down several flights of stairs. I am on social security disability for these conditions as well as other things (cancer, heart conditions, etc), but my chronic pain and fatigue are what destroy my life. I have lost many friendships and relationships, I have little to no social life, I cannot do most things I used to love like biking, dancing, etc. I am on 20 prescription medications. I am also a recovering addict with over 13 years clean, so the decision to take any opioid pain medications was one of the most difficult ones of my life. I take several non-narcotic medications to avoid this, yet the drug war continues to limit my access to those medications as well.

Along with heavier opioids, I had three doctors suggest the opioid drug I chose to take to me before I would agree to try. I was terrified of becoming addicted to it. That drug is mentioned in this article: tramadol. I have gone great lengths to not let my pain medication graduate from tramadol (a very weak opioid that also has SNRI properties) to something stronger (yet) in my life. But, before I took tramadol, I was laying in bed crying because every technique I tried did not work enough or made me worse. I got injections into the joints in my chest, I did physical therapy, I tried supplements, diets, ice, rest, heat, topicals, patches, I read chronic pain books, tried acupuncture, yoga, different exercises, not exercising, meditation, tens units, therapy, psychiatric medications, sleep hygiene, and many other things- many of which I had to crowdfund for as they are not covered by insurance (more on that later.) Some of these, doctors actually instructed me not to do anymore (such as yoga and strenuous exercise) because my conditions are made worse by them. One day, I was laying in bed with an ice pack on my chest, breathing shallowly, in tears after cortisone costochondral joint injections had increased my pain for weeks rather than reduced it. I picked up the phone and called my doctor's office. "I will try the tramadol." Years have now passed with me taking this drug multiple times a day every day, managed by my doctor. I can say with 100% certainty that it was the correct decision. I can't magically predict what I would do with a life I did not lead, but I am pretty sure that I would have attempted suicide without tramadol.

For the past week or so I have been taking the maximum amount of medication I am allowed per day (which I very rarely do,) because it feels like someone is smashing a sledgehammer into my lower back, possibly from an untreated spinal fracture. My rheumatologist has not gotten back to me. When I take the drugs, I cry less. I also use ice, heat, topicals, patches, rest, meditation, distraction, and a lot of other shit, but the drugs are key. One night, I said to myself, "I am gonna win over the meds, I am not gonna take the last one, I am gonna meditate through it." I lay there in bed with tears running down my face showing what a tough guy I could be when really I could have taken my fucking meds and gone to sleep which would have been better for me and my health. Part of the reason my pain has recently skyrocketed is because of the kind of acceptance in this article. For a couple of weeks I did too much- went to multiple doctors appointments and also social engagements. I accepted things hurt so bad and just powered through. I got sicker and sicker. I carried ice packs with me to shove under my seatbelt, cried in my car between events, coated myself in capsaicin and anti-inflammatory patches so often that I ripped my red, raw skin off with them, and told myself suck-it-up you can do this. Live life! Don't let pain run your life! Every time I "accept" my pain and don't give into it, it will conquer me with a greater army later and I end up taking larger quantities of drugs in the long run. You can just go out to a movie instead of "fixating" on the pain? GOOD FOR YOU. I can't breathe or move my left arm when I do too much so driving there is gonna be a tad bit difficult (not to mention unsafe for me and others.) Right now I can barely stand up straight. I am not trying to get on that person- this is a shot at the journalist for how she framed it. Even the person is who is sharing her acceptance shares that when shit gets bad, her life falls apart and she has all these things and people to fall back on. Not everyone has that, so they take the drugs to get groceries because they don't have a huge support system to clean their house and get groceries for them. They don't have a big disposable income to order takeout three times a day and not eating is obviously unhelpful.

Articles like this don't highlight that part of chronic pain- this article's first case study is reductive and makes it seem like she just got better. I wonder if any reader will notice that they don't mention if Gwen stopped taking her opioids. All they mention is that acceptance helped her- of fucking course it did. She probably still takes drugs, too, just less of them. Anyone with chronic pain is already doing "pain acceptance" because drugs never kill all of the pain. Every time I have had a surgery, I have still had significant pain even while on the max amount of drugs, acceptance is always part of it. Is getting better at that a good thing? ABSOLUTELY. But, the false association that it's going to solve the opioid crisis is complete bullshit. The throwaway bit at the end is not what the majority of prejudiced people will take home from this. This is not what doctors with racist, sexist prejudices are going to take home from this. They are going to say "See those women are just whiny and they just need to learn to suck it up and deal with their hysteria! This article proves it!" The scientists will be like "Uh actually...." like they always are but the damage will be done.

Everything is always well timed in these articles with whatever the current social idea is around pain management and disability. Since we've recently gone from it not being managed enough to "everyone's just a drug seeking junky so let's take away their healthcare," articles like this fit nicely into that. Sometimes I think nonscientists/doctors shouldn't be allowed to write articles like this. Then again, I have seen some horrendously bigoted and ignorant things written by doctors, too.
I would like to see more articles and studies on people who have been denied pain management or abruptly had their coverage or drugs taken away. How many of them felt great? How many of them just accepted it and suddenly started living great lives and going to the movies? How many of them committed suicide? How many of them got worse because doctors dismissed their pain as not real or not that bad (very often the case with Black people, women, trans people, and I would bet any marginalized person, especially those with multiple intersecting oppressions)? How does race fit into these articles when studies have shown that doctors believe Black people have less sensitivity to pain? It's interesting that this article links opioid use to a decline in American life expectancy, but does not discuss the link between chronic pain and that decline. They did not discuss how people take excessive opioids because they get stuck working injurious and painful jobs because they are denied disability and opioids are the only way they can survive it. As a person who navigated the 2+ year $0 annual income poverty of the social security disability application and appeals process that about 80-90% of applicants go through if they even make it to the end without dying or giving up, it is not at all surprising to me that some people choose to take morphine and keep working at a job that may injure them further. They didn't talk about people getting hooked on opioids because their insurance won't pay for "pain acceptance" treatment or physical therapy. They didn't talk about people getting hooked on opioids because they are single mothers and no one will help them care for their children and they are working 3 jobs and have no time or money for lengthy non-narcotic treatments that only partially work. They didn't discuss how the drug war is preventing disabled people from getting their medications filled at pharmacies because of capitalism rather than healthcare. They don't discuss the stigma and impossibility of using mobility aids in a world that makes many of them near impossible to use, so people take drugs to keep walking instead of using a wheelchair. They don't discuss the societal aspects of opiate use. They just call everyone addicts because our country values punishment over healing, restriction over moderation, blame over trust, and capitalism and profit over people. 

This post is already long, so I am ending it here for brevity's sake. But, much more could be said about the history of the drug war, prisons and prisoners who are victims of it, medical abuse of people based on their various identities and traits, private and government insurance, drug and alcohol dependence, and many other things I mention here. I encourage people to continue having conversations about these things rather than eating up whatever the buzzphrase of the moment is as it is almost always a fraction of the truth.

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