My chronic pain is killing me

Here’s another complication—the risky, expensive treatment makes a lot of money for the pharmaceutical companies who produce it. That leads some people to claim that the treatment is a sham and you shouldn’t accept it—instead, you should “learn to live with” the consequences. But your doctors say that despite the risks, this is your best chance of living a full, long life.  None of which is that helpful when the pain is unbearable.

Well, if the medical condition is cancer and the treatment is chemotherapy, then most people, including me, take their chances with the treatment. Some go into remission. Some don’t, or their disease returns. Many people with stage 4 (or metastatic) cancer that has spread throughout their body are given chemo indefinitely as a way to try to manage and control cancer for as long as possible.

Read more: Why do I hide my physical pain?

It’s not a perfect analogy. It’s not supposed to be. But the reason most people recoil instantly at that comparison is that most people don’t see incurable intolerable pain as an illness in the same way that cancer is. Sure, everyone needs ibuprofen at some point in their lives, and sometimes if you have a serious surgery you may need Percocet or codeine, but to most people, intolerable pain is not in and of itself a medical condition that merits treatment. But what to do when severe chronic pain becomes unbearable? What are doctors supposed to do when a patient says “my chronic pain is killing me?”

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People are rightly suspicious of opiates because ever since the days of morphine, pharmaceutical companies have mislabeled opiate medications and mislead the public (and even doctors) about their addictive properties. (That’s one point at which the analogy with cancer and chemo breaks down—as far as I know, we’ve always known that chemo literally destroys the cells in your body.)

Doctors used to prescribe opiates without warning patients about the potential for addiction and the importance of taking appropriate doses, tapering down when needed, and complementing the opiates with other, non-addictive methods of pain relief.

However, none of this negates these facts: 1) many people suffer from severe incurable unbearable pain, and 2) opiates are the only drugs that allow some of these patients to achieve anything resembling a liveable situation.

Now that politicians are once again yelling at each other about “fixing” the “opioid epidemic,” I’m seeing a lot of pundits and public figures carefully dancing around the inconvenient and messy reality of pain. “How do we get these people to stop abusing opiates?” they moan. “Maybe if we ban doctors from prescribing them.”

They’ll go on to qualify. “We’re not saying nobody should ever get them. But it should be harder to get them, and it should only be for people who really need it.”

You know what that reminds me of? “We’re not saying nobody should be able to get an abortion. But there should be a waiting period, and you should have to hear the baby’s heartbeat, and any doctor performing them should also have admitting privileges at a nearby hospital in case something goes wrong, and definitely not after 20 weeks, and—“

In both cases, the “guidelines” and “restrictions” and “regulations” may seem like they’re there to prevent “abuses of the system” or people getting the medical care they don’t really want/will regret later. But really, the goal is pretty clear—sharply reduce the frequency with which this type of medical care is being provided. [1]

And the reason that’s the goal isn’t just because they believe that this type of medical care is harmful to patients. It’s also because they believe that it’s ultimately immoral and harmful to society.

If that wasn’t already painfully (heh) obvious from talking to doctors and politicians about pain management, it’s also obvious when you look at the type of research being done. In a Vox article about the issue, German Lopez cites a study about what happens when doctors are informed when their patients overdose on opiates they prescribed:

The results: Clinicians who got the letters prescribed nearly 10 percent fewer opioids than those who did not receive a letter. The letter-receiving clinicians were also less likely to start patients on opioids and less likely to give patients higher doses of opioids. [2]

This is being presented as a successful outcome. Why? How do we know how exactly these doctors decided whom they were going to deny opiates to? What if some, or most, of the patients who made up that 10% statistic were patients who really needed these medications? Patients with severe chronic unbearable pain. Patients with real intolerable pain. How many of those patients might go on to overdose on street drugs that they sought out because of unmanaged pain?

And that’s how we get to opinions like these, from a Vox article by Sarah Kliff, who cites the article above:

But there is one quote in German’s piece that stands out to me the most, from drug policy expert Keith Humphreys:

“Something needs to be worked through the culture as well about how pain is part of life. If you’re in excruciating pain, it sucks. And I’ve had pain conditions myself. But not all pain is intolerable or needs to be pushed down to zero with an opioid.”

This, I think, is the hardest part of backing away from opioids: admitting that medicine doesn’t have a perfect cure for pain — that for some patients, zero pain isn’t possible. [3]

Here’s the problem, though. “Not all pain is intolerable” means acknowledging the fact that some pain is intolerable, and anyway you slice it, you have people other than the patient determining if they have intolerable pain or not. And not only that, but this decision-maker is essentially serving as a gatekeeper to effective pain-relieving medication, placing them in opposition to the patient who has intolerable pain, who wants access to that medication.

There is absolutely no way for this not to become medical gaslighting, and no way for it not to become yet another stage on which our cultural biases play their well-worn roles. It’s a known fact that African Americans are considered less sensitive to pain, while women and Jewish people are considered weak and prone to complaining. (Somehow, despite the opposite stereotypes, all of these groups are similarly denied pain care.) These stereotypes appear in current medical textbooks. [4]

The other problem with “not all pain is intolerable” is that, while pain usually has physiological causes, its perception is subjective. 

Feelings of pain are processed in the brain, so all pain, by definition, is “all in your head.” 

That fact is often used to gaslight people, but if anything it should be the other way around. That pain is subjective means there’s no way to know if someone else’s pain is “that bad.” Every method that’s been created to try to objectively rate someone else’s pain is a dismal failure because you simply can’t.

Opiates have high risks, especially when mismanaged. But lots of important medical treatments have high risks. Besides its serious short-term side effects, chemo has a high likelihood of causing at least a few of the following permanent effects: neuropathy of the hands and feet, cognitive impairment, bone, and joint pain, elevated risk for various cancers, heart disease/failure, lung damage, infertility, hearing loss, and osteoporosis.

"But wait!” you may say. “Cancer kills, but chronic pain doesn’t!” You got me there. Except not really, because first of all, not everyone agrees that a lifetime of excruciating intolerable pain is better than death. For instance, I don’t. 

Second, severe and untreated intolerable chronic pain absolutely does kill. It can increase the risk of suicide and actual opiate abuse and overdose, as well as alcoholism and complications thereof. More than one patient has exclaimed, “my chronic pain is killing me! ”

People who become sedentary due to pain have a higher risk of dying of heart disease, diabetes, and literally any other disease for which being sedentary puts you at risk. 

People with untreated intolerable pain may be unable to work, and their ambiguous medical status can make them ineligible for Social Security. Poverty is itself a risk factor for just about everything.

This brings me back to my opening analogy. When chronic pain becomes unbearable who decided that the risks of living are preferable to the risks of taking opiates? Why do they get to make that decision for patients? What the fuck happened to informed consent?

Opiate addiction is obviously a very serious health issue, but it’s not untreatable. Most people with addiction recover. Many of these other potential risks I described, both of chemo and of untreated chronic pain, are permanent.

I have always supported access to effective pain medication, including before my surgery, but before then I would’ve said that I’d personally rather deal with pain than take opiates for longer than a day or two and risk addiction. But the combination of gaslighting and physical suffering I experienced changed my mind. I have been in every way diminished by that experience, and it didn’t even last that long compared to other people. [5]

No, I didn’t need that pain “pushed down to zero,” and that quote is an unfair strawman. I needed that pain managed. I needed to not want to kill myself so I could focus on recovery. Ibuprofen didn’t do that. Tylenol didn’t do that. Muscle relaxers didn’t do that. Percocet didn’t even do it, because the hospital staff had allowed my pain to spiral out of control while they hemmed and hawed and condescended and argued with me about it. Who decides when chronic pain becomes unbearable?

At that point, I was on my own. That I had resources of strength that enabled me to survive that without resorting to illegal drug use or having a complete mental breakdown diminishes neither the severity nor the ultimate Sisyphean pointlessness of what I went through.

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Incidentally, I’m not even the type of patient that this conversation was supposed to be about. I’m not a chronic pain patient. I had a serious and complicated surgery, but one that has a predictable and relatively short-term recovery process. When experts talk about the risks of opioid prescriptions, this isn’t the situation they’re usually talking about. Yet, as my social worker later suggested, I had gotten caught in the web of Ohio’s new “opioid guidelines.” The pendulum has swung in the other direction, and it knocked me on my ass on its way there.

So, I fully admit that I can’t be impartial about this issue. But because I can’t be impartial about it, I’m well-positioned to report on its devastating outcomes. I dissociate when I have to return to that hospital. I break down bawling in doctors’ offices when they ask me about my experience. I’ve lost almost all trust in the medical system that put my cancer into remission and saved my life, because in so doing it gaslit and traumatized me in a way that, unlike cancer itself, was one hundred per cent avoidable.

And I am so, so lucky compared to others. My pain was temporary.

I see a lot of pundits talking about how to reduce opioid prescriptions and “get people off” opioids. These are the wrong questions to be asking. Here are some better ones:

• Is pain a valid medical issue, or is it not?
• Who is the best authority to determine a patient’s pain severity—their doctor, a state government, or the patient?
• What are the long-term risks and costs of unmanaged intolerable pain?
• Can severe chronic pain kill someone?
• Which of the “alternative approaches” to pain management being suggested to patients are based on scientific evidence?
• On average, medical school students receive 11 total hours of training on pain out of thousands of total hours of education. Are we going to do anything about that?
• In a culture with sayings like “No pain, no gain” and “What doesn’t kill you makes you stronger,” are we prepared to acknowledge that pain carries no intrinsic moral benefit and that people who want to reduce their suffering should be able to do so?
• “Informed consent” means that patients are informed of potential risks, benefits, and alternatives for each treatment, and then allowed to decide for themselves which treatment to choose. Does this apply to severe chronic pain?
• The majority of substance abuse treatment in this country still utilizes outdated, unscientific methods that rely on religion and moralizing rather than sound evidence. Are we going to do anything about that or nah?
• Every single client I’ve ever worked with who was or had been addicted to opiates had one or both of the following untreated issues in their history: 1) repeated psychological trauma, usually sexual assault/abuse, or 2) years of disabling physical pain. What are we doing about that? Specifically, how fucking dare any member of Congress vote for any opioid-related legislation while confirming a man accused of rape by multiple credible witnesses to the Supreme Court?

Honestly, until I see some real answers to these questions about unbearable pain, I don’t really care about reducing opioid prescriptions or forcing anybody off of them.

"Intolerable pain: what happens when chronic pain becomes unbearable pain?" is kindly republished on The Orbit and is republished with the kind permission of the author.