Drug treatment created by people who don't use drugs will never work
Healthcare innovations must centre PWUD -- or else.
Kurt Cobain was twenty-seven when he died.
Twenty-seven. Old enough to get married, have a baby, write a chart-topping genre-defining anthem (named after a soon-to-be-discontinued deodorant stick for teen girls), and tour the world as David Geffen’s hottest Seattle acquisition.
As an awkward pubescent tween desperate for a life, twenty-seven seemed like more than enough time for lots of living. Especially when I learned about the 27 Club (defined on Wikipedia as lacking an “official membership,” in case you were wondering).
Jimi Hendrix, Jim Morrison, Brian Jones, Amy Winehouse, Mia Zapatta, Kirsten Pfaff. And Kurt Cobain — the sensitive Piscean songsmith who seemed so disturbed by his own influence and sudden fame (among other things) that he killed himself in April 1994, just one month after attempting suicide in Rome.
Kurt Cobain’s mythos has far surpassed his twenty-seven years life years. As a child of divorce who grew up in — and subsequently outgrew — small town Aberdeen, WA, Kurt was not, it seems, as predictable as some of us might assume. (Is anyone?)
A visual artist with a penchant for vaginal art, as well as a musician with a knack for catchy “pop-like” hooks, Kurt wrote lyrics that sounded meaningful, but, he insisted, were more senseless than confessional.
Kurt allegedly refused to upgrade his Volvo for a Lexus; he hated the MTV video awards, which he demonstrated by hissing at photographers and frowning his way down the red carpet; and he rejected all-star tours with big jock-rockers like Guns N’ Roses. Kurt confessed a yearning for the good old days he spent roadying for the Melvins. At the same time, he also also (apparently) craved a major label hit — and the spoils that came with it (probably stuff like respect, and enough money so his soon-to-be young family could want for nothing).
And boy did he get a HIT.
But. Twenty-seven is actually pretty young. It is essentially a quarter (or less) of a life.
Consider that for a moment. Close your eyes, and resist the urge to move, fiddle or twitch.
How does twenty-seven feel?
What does it look like?
Is it blurry? Chopped up?
Does it come at you in flashes?
For those of you who are twenty-seven (like, right now), does it feel especially significant or adult? Because, legally, you have already passed the milestones indicating maturity — like the minimum drinking, voting and/or gambling age.
At twenty-seven, you might feel practically middle-aged (like I did, when I cried my way through my twenty-fifth birthday, fearing my inevitable old age for the first time ever).
You may even think you’ve lived enough years to decide you’ve had enough — of life. Like Kurt did when he ended his (short, oh so short) life, in 1994.
My opinion: our twenties are a relative blip — over before it happens. A formative decade, sure; but not as critical as our “formative first five,” and rather inconsequential when we consider the many decades and milestones left to live.
Today, I find it shocking to read about how Kurt married, like, the third (or second) serious girlfriend he ever had. How he never really had a job — except maybe a stint as a school janitor or something. How he preferred grilled cheese sandwiches and Kraft Dinner to anything approximating a healthy meal, while suffering from chronic/mysterious stomach pains that were never diagnosed.
In an article about how “stigma failed Kurt Cobain” and “people in addiction today,” writer Abraham Gutman describes how heroin was — according to Kurt — the only tonic capable of alleviating his burning stomach.
According to Kurt, he used heroin daily, as medicine. And then his body came to depend on it.
When someone uses heroin as medicine, they are rarely treating just one thing. Pain relief is a good reason to use opiates, but pain manifests in many forms — physical, emotional, mental, spiritual.
I won’t label Kurt an “addict,” or use the word “addiction” to describe his drug use.
If drugs are medicine (a way to change/alter/find some relief from painful/uncomfortable/overwhelming feelings), then how can we be addicted to them?
And how can we so cruelly — and simplistically — use the word addict to label a person in pain, discomfort, discord and/or torture? Someone who is struggling with poverty, hunger, houselessness, isolation, anger, fear, without friends, family or (helpful and culturally-appropriate) supports.
These days, healthcare providers are encouraged to use person-first language when describing a person with a disability, and this now includes people who use drugs. The idea is to emphasize the person before her illness, so that she does not feel defined by it.
But does this shit really work? Do PWUD feel less stigmatized when referred to as a person with a substance use disorder? Or: as a person whose drug use is causing them familial, social, physical, and/or professional issues or problems?
I’m not sure. But it feels/seems that the word addict — especially when used to pathologize people who use drugs (PWUD) — can create shame and stigma, which are hardly productive emotions for someone in pain.
In fact, shame (from an early trauma, for example) is often linked to a person’s later drug use.
But maybe there are PWUD who don’t agree that they have a disorder or illness. Maybe they want to be called an addict, and refer to themselves as such. It’s not our role to stop them.
But it’s not my place to call anyone an addict. Addiction suggests lack of control; inability to cease substance use despite repeated and “negative” consequences.
Who am I to define “negative consequences” for someone? This term is subjective, no? I find it easier — more concrete — to assume that the inability to cease substance use is due to a dependence on that substance. And still, I have no business labelling anyone else — no matter how well I think I know them.
I know what it feels like to be dependent because I am a person who uses an opiate agonist treatment medication (OAT, for short) to keep my withdrawal symptoms at bay.1
Curiously, doctors have never referred to my (daily) dose of OAT as an addiction. Why not? Kadian (my 3rd OAT since I started on Suboxone in 2017) is hardly a perfect medication. And after trying three kinds of maintenance meds (and I’m running out of options), I wonder if the medication solution I need will ever exist.
Yes, I take my OAT meds every day despite side effects and personal/social consequences, ranging from relentless constipation, crippling anxiety attacks, suicidal thoughts, systemic control measures that interfere with work and play, stigma-based feelings of SHAME, hopelessness, fatigue, and more.
And still, I can’t stop taking my meds, because my body/brain depends on them. Does this mean I am addicted to my medication? Where is the line between dependence and compulsive drug-seeking behaviour?
Have you ever taken a trip but forgot to pack your SSRI meds? Did you feel out of control on the 3rd or 4th day without your medication? Did you feel like seeking out your antidepressant drugs?
I haven’t had to seek out my OAT meds (yet). But that’s because they are controlled substances regulated by our government. All I need is a prescription and a dispensing pharmacist. Hopefully, I’ll never forget them on a trip.2
In Gutman’s article, he says that Kurt once had a sympathetic doctor prescribe him buprenorphine, described as “a long-acting opioid that is […] even safer than methadone.” Cobain allegedly wrote that buprenorphine — which is suboxone, without the addition of naloxone — actually relieved his stomach pain. And unlike other opiates, bupe “[didn’t] get you high.”
Gutman goes on to explain that bupe is now the preferred first-line treatment for opiate addiction, a statement that WTH writers often believe to be misleading, but nonetheless appears in current opiate agonist treatment (OAT) guidelines.
But when Kurt was taking bupe in 1992, it was actually illegal as a treatment for opiate use (in the US?) I’m skeptical. We can’t know how consistent Kurt’s bupe regimen was. But are we convinced that “not getting high” was a desired outcome? Recall that Kurt was alleged by many, including his wife, Courtney Love, to seek oblivion through drugs. He would take however many drugs were in front of him, said Courtney. She even alleges that he once took Prozac, thinking it might produce a high, but ended up sick to his stomach instead.
On the other hand, maybe Kurt was honestly attempting to quit using heroin. As a user myself, I understand the shame that often follows a pleasurable high. These are complex feelings that can stay unresolved for days, months, years — even lifetimes.
I agree that a stable/daily dose of suboxone does not produce a discernable high. There can be a short period of euphoria following a first-time induction, but that feeling, unfortunately, dissipates, never — at least by my experience — to ever return.
We do not live in a world that priorities wellness. Recovery, then, demands what feels like perfection, and can feel like pushing a boulder up the Grouse Grind.
When the suboxone-generated euphoria hit me that first (and only) time, it was like a flash, warming my body from toes to top. I think I smiled for the first time in weeks — a real smile, all cheeks, and so different from the ones I’d learned to fake. The fakes had become so common by this time I feared I’d forget what a genuine smile felt like, that I’d fail to recognize one even if it slapped me silly.
I chatted with the nurses and other staff, as they relished my newfound pleasure. “If you’re feeling ‘euphoric’,” the doctor said, “don’t worry. It won’t last.”
Great. Just what I need. Because the worst thing for me right now is to feel what I could only guess was: JOY. I hoped it was joy. I hoped I could find more, somehow.
JOY: the devil’s seduction. Who needs that?
By the time I got home, any traces of that euphoria or joy was long gone, replaced by what I could only identify as: now what?
When Kurt’s doctor died in 1993, Kurt lost his buprenorphine connection, according to Gutman. Again, it’s not clear just how consistent his use of the partial agonist was. But I can bet he ran into problems if he tried to use heroin in addition to bupe. And, frankly, it’s hard to believe Kurt quit heroin completely during this period between 1992-1993.
Gutman claims that little has changed since Kurt “lost his battle” to drug use. He writes that drugs like buprenorphine and methadone are still considered a crutch that “replaces one addiction for another.” And I blame 12-steppers for coming out against medication-assisted treatment (including antidepressants). Responses to this kind of (dangerous and uninformed) meddling should sound something like, “It’s not your job to have opinions about others’ meds. So STFU.” Those who quit opioids cold-turkey, without any OAT medication, are at greater risk of overdosing and dying from overdose should they relapse or resume their use.
Recovery is hard. And relapse is common (an understatement if there ever was one).
As a person who created a recovery program that suited my needs, values and lifestyle (to the best of my ability and with help from professionals), suboxone played a significant role in keeping me healthy. But it wasn’t the only component. Wellness is complex, and I think it has to be different for everyone. Mine included medication, Tarot, astrology, writing, jogging, yoga, long walks with friends, verbal processing, laughing, joy, fun, and much more.
We do not live in a world that priorities wellness. Recovery, then, demands what feels like perfection, and can feel like pushing a boulder up the Grouse Grind.
Many of us believe that OAT is designed more for health care workers, government leaders, cops, policy-makers, pharmacists, and more. It is NOT a system designed for the people taking these meds, those who still often feel handcuffed by the punitive and highly regulated system that governs them. Because we were never invited to participate. We were never regarded as experts in our own care.
And as long as we can be contained, and given just enough medicine to cease committing crimes to fund our drug use, for example, that is good enough for them.
But it’s not nearly good enough for us. Not anymore. Especially as we continue to lose six British Columbians to drug-related deaths every single day.
My doctors tend to assume that OAT meds also reduce cravings for opiate drugs, but I have never found this to be true. Maybe that is because I don’t relate to cravings, exactly; for me, it feels like longing. Like for a lover’s embrace, or a song I fell madly deeply into as a tot (before torrents or streaming). And how can a medication ever erase longing?
Some people are so terrified or forgetting or losing their OAT meds that they never travel. OR the barriers to getting take-home doses are so rigid that many people have not seen their families in years. Imagine that.