“I start to wonder if I’m even in pain, if I’ve just convinced myself of its certainty in order to get the drugs.”
My body, as usual, missed the memo. With this helpful reminder from my addiction psychiatrist, Dr. Tao, I’m sure it’ll get right on that.
“That’s strange. It’s been almost 6 months, you really shouldn’t be in pain anymore.”
I’m sitting in her pink-saturated office, shifting uncomfortably in my chair as I withhold my snark, because I need her to listen. My range of motion in my ankles and wrists is worsening by the day, and with it the pain in those joints.
I’m no stranger for gauging what a doctor thinks of me. Those of us with chronic illnesses — and especially chronic pain — often become mind readers, carefully monitoring our language, tone, and disposition to make sure our symptoms and concerns are taken seriously.
Dr. Tao was my Obi-Wan Kenobi, one of only two physicians offering medication-assisted treatment (MAT) left in all the galaxy that’s my Midwestern town. My only hope and all that.
The medication, in my case Suboxone, keeps my cravings down and the horrors of withdrawal at bay. Suboxone also contains the drug naloxone, an opioid-reversing agent known by its brand name Narcan.
It’s a safety net designed to minimize cravings and stop the brain from experiencing a high if I do. And unlike midichlorians and the Force, MAT has some good science to back up its claims.
“I saw Dr. McHale this week, do you remember him? He was your lead doctor up in acute psych. He was asking about you.”
My heart these past few months feels like it’s held by a single thin fishing line, and when panic pulls on that string, my heart starts doing wild somersaults. It could join Cirque du Soleil right now.
My body remembers, even as my memory of those 3 weeks in detox and the acute psychiatric ward is still hazy. Dr. McHale was the person who decided to have me quit cold turkey.
In retrospect, it seems obvious how dangerous it was not to wean me off, especially due to my diabetes and other health issues. Twice during my stay I was in critical condition. So, yes, I most certainly remember Dr. McHale.
“Yeah! I told him how far you’ve come. He’s so amazed by your recovery, you know. When he discharged you, he told me, he didn’t think you’d live through the next month.”
My brain, desperately trying to follow the conversation and measure my response, shorts out.
Dr. Tao is beaming.
To her, this is a point of pride. I’ve been sober for 5 months, taking Suboxone as prescribed, coming off the cocktail of medications that had pushed me precariously close to serotonin syndrome — all without a single relapse.
I was her perfect success story.
Sure, my pain hadn’t disappeared as she’d expected. After 3 months off opioids, I ought to have stopped experiencing rebound pain and hyperalgesia, which was puzzling.
Or at least it was puzzling for her, since she didn’t seem to listen when I tried to explain this was the pain I’d sought treatment for in the first place.
Not all my problems could be blamed on opioids, but damn it if she didn’t try. I was, first and foremost, a shining example of the benefits of MAT for pain patients who’d become dependent or addicted due to chronic opioid therapy.
I do not share her excitement of proving Dr. McHale wrong. Instead, I feel a wave of dread rising in my chest.
I’ve seen plenty of folks dealing with addiction in far dire straits than me. Some had shared my wing in the ward where I detoxed — a good portion of whom were even under Dr. McHale’s care.
Yet I, the young disabled queer kid, whose undertreated yet overmedicated chronic pain made the perfect storm for addiction, am the one this doctor decided was a doomed venture.
His comment confirmed what I already know, what I feel and see around me when I reach out to find community in disability activism or recovery spaces: There’s no one else like me.
At least, no one left alive.
I’ve fielded ableism of many flavors and varieties, and they all can get stuck in your head in unexpected ways. I’ll end up repeating back to myself the same notion I shut down if a friend said it of themselves.
When I’m with my friends in recovery, I try to avoid discussing my pain because it feels dramatic, or like I’m making excuses for my behavior while I was using.
This is a mixture of internalized ableism — believing my pain is exaggerated, that no one wants to hear me complain — and the remnants of our societal attitudes around addiction.
The things I did to further my drug use are a character defect, not a symptom of the way addiction warps our judgement and can make doing unreasonable things seem completely logical.
I find that I hold myself to a different standard, to some extent because I don’t have close friends who deal with both disability and addiction. The two islands remain separate, bridged only by me. No one is around to remind me that ableism is bullshit, no matter who it’s coming from.
When I’m interacting with my disabled or chronically ill friends, I can feel my throat close around my words when the subject of opioids comes up.
The atmosphere around chronic pain patients, opioids, and addiction is lightning charged.
Starting in the mid-1990s, a flood of marketing (among more insidious practices) from drug companies pushed doctors to liberally prescribe opioid pain relievers. Medications like OxyContin grossly misled the medical field and public with junk claims of being resistant to misuse while downplaying the overall risk of addiction.
Jump forward to today, where nearly a quarter million people have died from prescription overdoses, and it’s no wonder communities and legislators are desperate to find solutions.
Those solutions, however, create their own problems, such as patients who safely use opioids to treat chronic conditions suddenly losing access as new laws prevent or discourage doctors from working with them.
Disabled or chronically ill people seeking basic pain management become liabilities instead of patients.
I will fight fiercely for my community’s right to access needed medicine without stigma, fear, or threat. Having to constantly justify one’s medical treatment to your own doctors and the wider able-bodied public is exhausting.
I distinctly remember that guarded feeling, and with some attitudes toward MAT — “You’re only trading one drug for another” — I still find myself playing defense.
Sometimes, though, in fielding those accusations of dishonesty or manipulation of the system, chronically ill and disabled folks will defend themselves by disassociation.
We aren’t addicts, they say. We deserve respect.
It’s here where I falter. I get the message that I’m undermining my community by fulfilling the stereotype of people in pain being addicts, with all the implications of that word.
I start to wonder if I’m even in pain, if I’ve just convinced myself of its certainty in order to get the drugs. (Never mind all the evidence to the contrary, not the least of which includes nearly 2 years of sobriety as of writing this.)
So, I avoid discussing my history of opioid use, feeling torn between two aspects of my life that are inexorably linked — addiction and chronic pain — yet kept decidedly apart in the public discourse.
It’s within this messy in-between I oscillate. Harmful attitudes toward addicts convince me I must carefully carve around my addiction in discussing disability rights and justice.
Ableist ideas about pain as weakness or making excuses keep me tightlipped about the driving force behind most of my cravings at sobriety meetings.
I feel roped into a competitive match of pingpong with doctors and pain patients: those pushing for access to opioids holding one paddle, and those who’ve declared war on them holding the other.
My only role is of the object, the pingpong ball launched back and forth, scoring points for either side, judged by the referee of public opinion.
Whether I’m the model patient or the cautionary tale, I can never win.
This back-and-forth has convinced me it’s best to keep to myself. But my silence means I don’t find others who share in these experiences.
So, I’m left to the conclusion that Dr. McHale is right. By all accounts, I should be dead. I can’t find anyone else like me because, maybe, none of us live long enough to find one another.
I don’t remember what I say to Dr. Tao after her triumphant declaration. I probably make a joke to defuse the tension I feel coiled between my shoulders. At any rate, it keeps me from saying something I’ll regret.
We finish up the appointment with the usual questions and answers:
Yes, I still have some cravings. No, I haven’t drank or used. Yes, the cravings are worse when I’m in a flare. Yes, I’ve been going to meetings. No, I haven’t missed a dose of Suboxone.
Yes, I think it’s been helping my cravings. No, it hasn’t fixed the pain. No, my hands were not this swollen before I got sober. Yes, it is strange. No, I don’t have a provider willing to look into it at this time.
She hands me the prescription refill and I leave, a hole of shame and heat boring through my stomach.
Despite the way Dr. Tao views me, my story isn’t exceptional. In fact, it’s all too common for pain patients to become addicted to medications with little support or help until a crisis moment.
Some are abandoned by doctors while dependent on strong opioids, and are left to fend for themselves whatever way they can — be that doctor-shopping or the street market or taking their life.
Our society is beginning to recognize the damage done both by the flood of opioid pain relievers on the market and the backlash responses that leave opioid therapy patients stranded. This is vital for creating a better medical model to address pain and addiction.
But as the discourse stands, there seems to be no room to hold both: that there are legitimate reasons to seek out opioid therapy for pain, and very real risks for addiction just the same.
Until we see more people talking about life after opioid addiction, particularly for disabled and chronically ill people, we will continue to be isolated — and assumed to be lost causes.
A generation ago, my community pushed back against the quiet shame of stigma with the creed SILENCE = DEATH. This is the place I’ve chosen to start.
The only thing that makes my recovery remarkable is that I have the chance to write this, to speak publicly about the effects of chronic pain and addiction, and how vital it is that we normalize the experiences of disabled/chronically ill addicts.
Everyone’s time is borrowed. In the short time we have, we deserve to be honest about ourselves, however messy it might seem.
I know I can’t be the only one living at this precarious intersection. And for those of you living alongside me, know this: You are not alone.
Chronically ill and disabled people dealing with addiction exist. We matter. Our messy stories matter. And I can’t wait to share them with you.
Quinn Forss works as a peer support specialist for people in recovery from addiction. He writes about recovery, addiction, disability and queer life on his blog, I’m Not A Good Person.