A Pain Patient and Advocate’s Take on Chronic Pain Anonymous
As pain patients, we face things that challenge not only our abilities to function in a day-to-day fashion, but also our abilities to function spiritually, emotionally, socially and mentally. Our disabilities challenge everything we think we know about ourselves. Pain is almost always an accompanying factor in disability and it is something too many of us experience daily. According to a summary by Science Daily:
“Researchers report that 50.2 million (20.5 percent) U.S. adults experience chronic pain based on analysis of the new NHIS data. They estimated the total value of lost productivity due to chronic pain to be nearly $300 billion annually.”
The estimated number of people combined with the annual cost of loss of productivity is jaw-dropping. The thought of how much human suffering must be going on and the reality that, due to the overreaching reactions to the 2016 CDC Guideline for Prescribing Opioids for Chronic Pain, many of those people have been forced onto the streets for pain relief at the expense of their own lives is heartbreaking. The fact that the CDC’s failure to properly classify overdose deaths as illicit fentanyl deaths and not prescription opioid deaths has lead to horrific consequences, chiefly among them the exponential overdose rate that, coincidentally, follows an influx of abandoned pain patients across the country. The amount of pain patients who have been forced to seek illicitly manufactured medications and have died as a result combined with the pain patients who have died by suicide is absolutely staggering. This has been a lesson in barbarism and inhumane treatment.
My 85-year-old great aunt, a former nurse, has been watching this unfold for years. She has watched me scream and beat my fists into the proverbial ground. She has watched me hand out pages and pages of data that I’ve sent to legislators and lawmakers, begging them to see the realities of the damages that they’re causing. She’s watched all of this while shaking her head and saying, “I don’t understand this. When I was a nurse, if someone came in and was in actual pain, we treated them there and then. I don’t understand this.”
Of course, she’s acknowledged that some people lied about needing treatment, but she knows as well as most professionals that the people lying about pain are in the minority of patients. The vast majority, virtually all, do not lie and are, in fact, trying to help themselves to be able to exist in this world in a functional way. That’s what access to safe medication has allowed for. Instead, we have seen an influx of requests to Canada’s MAID service from people who have simply been told to “deal with” their pain and that they can either turn to the streets and risk overdose or seek that assistance in ending their lives voluntarily. Translated: You’re sick. You’re incurable. You’re a burden. We aren’t going to treat you because of a 90/10 information split by the media that is biased against patients like you and, no, we aren’t interested in the reality of things. Go die in the corner like a good little burden.
I know, it sounds harsh. But, this is what we are being told. So, imagine my surprise when one of our very vocal advocates brought to my attention something called Chronic Pain Anonymous. You might be saying, “Now, that’s not like every other 12-step program, right?”
Wrong. It is exactly like every other 12-step program. The question of why pain patients would need that is very simple: we are treated like addicts who, at nearly every turn, are dismissed as less than human. This isn’t necessarily about addiction to medication, though. This is the thought that pain patients are somehow addicted to pain, create our own pain and that we cause others to suffer by way of having to be around us and help us. There’s the “burden” part. I’m sure you’re starting to see it now. The reality is that pain patients are almost never surviving circumstances that we created. We are surviving circumstances that life seems to have created for us, either at birth or incidentally.
If you’re wondering how this organization contributes to the feeling and belief that we are, in fact, burdens to society and our loved ones, just look at the 12 Steps. According to the Chronic Pain Anonymous Newcomer Brochure:
“The Twelve Steps
1. We admitted we were powerless over pain and illness — that our lives had become unmanageable.
2. Came to believe that a Power greater than ourselves could restore us to sanity.
3. Made a decision to turn our will and our lives over to the care of God as we understood Him.
4. Made a searching and fearless moral inventory of ourselves.
5. Admitted to God, to ourselves and to another human being the exact nature of our wrongs.
6. Were entirely ready to have God remove all these defects of character.
7. Humbly asked Him to remove our shortcomings.
8. Made a list of all persons we had harmed and became willing to make amends to them all.
9. Made direct amends to such people wherever possible, except when to do so would injure them or others.
10. Continued to take personal inventory and when we were wrong promptly admitted it.
11. Sought through prayer and meditation to improve our conscious contact with God as we understood Him, praying only for knowledge of His will for us and the power to carry that out.
12. Having had a spiritual awakening as the result of these steps we tried to carry this message to others with chronic pain and chronic illness and to practice these principles in all our affairs.”
Not all of these steps are inherently bad. Some of them make sense to so many people and rightfully so. However, some of these steps have other connotations to people who deal with chronic and intractable pain. Let me clarify.
Step one addresses our powerlessness over our pain. In this one sentence, the idea is that we have no control over own own bodies. It dismisses the reality that we, as patients with (ideally) full body autonomy, not only have the right to put into our bodies what we want but that we have the right to ask for care without having to settle for “just deal with it”. Pain, as we all know, is horrific and a symptom of a greater problem. Pain that is intractable or chronic is maddening. It takes focus, time, energy and life from the person suffering it (keyword: “person”).
Pain causes pain-related events such as heart attacks and strokes due to spikes in blood pressure, sudden death due to heart failure and other such serious incidents. Just recently, in fact, a young pain patient died when his heart gave out. He was post-operative after receiving a spinal fusion. He was in the hospital and showed us a video featuring himself crying because the hospital was treating this extremely serious and invasive surgery with (you won’t believe this) IV acetaminophen (Tylenol). No, I’m not kidding or exaggerating.
The first step here is dismissive to these things and teaches others that this dismissal is acceptable. We do have control over our bodies even when our choices are limited by the uneducated decisions of oblivious lawmakers. We can still choose to go to the street or to end our lives. No, they are not great choices, but we have them. We should be able to choose something safer that works.
Moving along, there are several other steps here that directly suggest to the patient that they should turn their lives over to God or a higher power. This is standard 12-step practice. However, what the people who wrote these steps fail to understand is that many of us have been abused spiritually by people who have that faith.
My mother, for example, was told repeatedly by several family members that she deserved her pain. No, it didn’t make sense to me then and it doesn’t now. They said this on the grounds that she didn’t “love God enough” or because she was “a sinner” who was “being punished”. My mother loved God more than most people I’ve met in my life. To be told that she was suffering by the one being in the universe that she knew and believed to be all-loving must have been excruciating for her.
In her shame, she hid so much of her suffering from these people. She didn’t tell them how bad it was.. and it was. It was horrific. She wasn’t properly diagnosed until after her death. The local medical investigator didn’t understand how fibromyalgia could shred my mother’s muscles. Fun fact: it didn’t. My mother had Ehlers-Danlos Syndrome, hypermobile type and suspected vascular type. The pain caused her heart to become enlarged and she died of a sudden heart attack. It was her fifth. We didn’t know about the others because she hid them from us. This all could have been prevented. She could have been heard. She was abused instead by people she loved. Yes, spiritual abuse is a very real thing.
Moving along to the sixth step, we see that, somehow, our pain is a flaw and defect of character. This immediately suggests that our pain is all in our head, a thought that is fiercely forced onto us from an early age as pain patients. We are constantly told that everyone is in pain, that we should just walk it off, that it’s not that bad and other toxic, manipulative and dismissive things, none of which are true and none of which actually offer any relief outside of making us more “convenient” for the able-bodied, non-pain patient people around us.
The goal with this dismissive methodology has always been palatability. We need to be more flexible to those around us. We need to be more accessible and less sad. One of the best and worst things I’ve ever heard from someone is that they were “bummed out” being around me. Somehow, my existence that I had no control over was managing to bother them to the point that they frowned once a day.
My response to that ilk, dripping with sarcasm, was something like, “I’m so sorry! I had no idea that my inability to function due to crippling pain was so hard on you! It must be tough being my friend.” The reality is that they are the ones bumming me out. We need support, not ostracization and criticism about things we literally didn’t ask for and are trying to deal with. But, hey, if it makes them happy, right? Pardon me. My eyes are rolling back into my head. Oh, look! China!
The last things I want to address are the steps that suggest that we are doing something wrong by existing in pain. Specifically, we are doing something wrong to the people around us. How? Well, my guess is that we ask them to be understanding and patient as we have to cancel plans and rearrange things. Perhaps we need to take more down time or end up having to go to the hospital. Perhaps our real problems equate to drama for these people.
The problem with this is that this seems to be exclusively one-sided and a huge double standard. These same friends and loved ones, when in a pinch, can usually turn to us and ask for help. Most of us will try to be there even at our own expense. We don’t criticize them. We don’t ostracize them. We don’t condemn them or give them backhanded compliments and toxic positivity (statements usually starting with “at least you don’t/it isn’t/it wasn’t __________”). We offer understanding, support, encouragement and sympathy. We give them exactly what we need from them.
If I could go through and tell all of these people my internal monologue, I probably would. I might not, actually, because so many thoughts consist of things like me realizing that they are assholes, not safe and coming across as completely clueless even though I’m required to communicate everything to them and do. Most people don’t respond to that kind of negativity.. or what they call negativity. To me and people like me, it’s not negative. It’s actually a realistic and expected response to unearned cruelty and dismissal.
It’s the same thing with our lives due to pain. They’re not “bad” or “good”. Our lives are rough, but these are our lives. They are our states of being. We deal with them day to day. Most of us learn to not firmly make plans because our bodies do what our bodies want. We can, through certain treatments, mitigate things to a small degree, but we have yet to be able to cure ourselves. I don’t personally know a pain patient who wouldn’t take a cure for pain were it available. I’m one of them.
Acknowledging the reality that some of these steps do help people, I understand what pain desperation looks like. I understand that, if you find something that works, you stick with it. To those who have been helped by CPA, I say whole-heartedly that I congratulate you. I am genuinely happy for you being helped. However, I am asking that you not push any toxic behavior and dismissal you learn on to anyone else with chronic pain.
Your pain is not my pain is not their pain is not his pain is not her pain is not our pain. Your pain is your pain. None of us fit under the attempted treatment umbrella. There is no one-size-fits-all treatment or coping mechanism with pain, so please refrain from affixing the thought that what works for you will work for others. I cannot count the times I’ve heard, “Well, (insert treatment here) worked for me so I know it’ll work for you” or “My (insert weird distant relative or acquaintance here) tried (insert something like yoga here) and they (insert huge improvement here), so it’ll work for you!”
Just stop. Seriously. I don’t know how many of you have heard of Bob Newhart, but he said something in his show decades ago that I feel fairly confident so many of us can relate to. His character, a psychologist, was speaking to a client who was terrified of being buried alive in a box. At one point, the client’s behavior was destructive. Bob’s response to this client, although harsh, had me in stitches: “Stop it or I’ll bury you alive in a box.”
That’s how I feel about this. That’s how many of us feel.
We are already stigmatized and segregated and mistreated by the public at large and even the people we love the most. It is with a resounding “NOW” that I ask, on behalf of pain patients everywhere, that everyone else stop offering us unsolicited medical advice, offering us dismissal after dismissal and stigmatizing us. We are not bumming you out. We are not offending you. We are not hurting you on purpose (if at all). We are trying to exist and, whether you like it or not, most of the time we are catering to you, not the other way around.
If CPA works for you, great. Wonderful even. But, to the majority of us who exist in this state, it doesn’t work. It hurts us, in fact. Please recognize that fact and leave us be. We need less stigma, not more.
