Ouch

On the complex realities of being in pain

Hello, happy Tuesday.

Have you been reading anything good recently? I’ve been enjoying one of those sprees where everything you pick up is brilliant. One of life’s most satisfying pleasures.

The other week I finally finished Patrick Radden Keefe’s Empire of Pain. Radden Keefe is one of my favourite New Yorker writers and I loved his previous book, Say Nothing, so I’d been waiting - very impatiently - for Empire of Pain to come out in paperback, and it didn’t disappoint. The writer’s enviable skill is making a heavily-researched, archive-based investigation read like a thriller, and this forensic dissection of the Sackler family’s role in America’s opioid epidemic was no different. He paints a family callousness at once shocking and banal, but is careful to share blame between the Sacklers and a regulatory system designed to enable them.

The book asks some profound questions, the most urgent of which is: does the healthcare system (especially in the US) conspire to undermine doctors’ mission to do no harm? The answers it provides are both comprehensive and deeply unnerving. Still, by the book’s conclusion I couldn’t help but feel that it had missed a key puzzle piece in explaining the opioid epidemic: behind the corporate malfeasance and the regulatory failure are hundreds of thousands of people in pain. And they were told that that pain could go away. It is not hard to see how that promise could lead to where we are now.

Pain is a strange thing. The book made me think of my own experiences of it, and consider how I conceive of it in my own mind.

Very few people realise that I am in pain nearly all the time. This didn’t used to be the case, but as I’ve aged the tightness in my back and shoulders has progressed from an occasional soreness to a constant ache and, now, an endless stabbing that, on bad days, feels like someone has taken a cigarette lighter to a particular point in my spine. It used to disappear if I changed position, but in recent months it has stopped responding to this simple, much-relied-upon fix. The pain is deeply unpleasant and impossible to ignore, a searing point of tension that I cannot seemingly cannot relieve, no matter how I try to stretch it or the many different positions I attempt to sleep in.

And yet, if you asked me, I would say it wasn’t that bad. When I have a headache or toothache or pull a muscle, I take a painkiller, because surely one of the prime advantages of not living in the 1800s is modern medicine, and I frankly don’t believe in suffering for the sake of it. But it never occurs to me to take a tablet when my back feels like it is on fire. This is, on a practical level, because I don’t like taking the strong painkillers that are the only ones that do the job; they make me feel woozy and nauseous. But there is something more fundamental going on, because I also zealously avoid doing any of the things - swimming or, god forbid, my physio exercises - that really would help, sans side effects, if only I did them. Which really, if you think about it, means that I prefer the pain to exercise, a pretty sure indication that the pain isn’t really that bad. (Or, conversely, shows you just how much I hate exercise, depending which way one chooses to see it.)

I don’t actually think my reluctance to act is because the pain is fine. I think it’s both more complicated and more philosophical than that. It seems my brain has priced this pain in as the cost of doing business - the cost, really, of existing in a body for whom the world is not built. ‘Of course I’m in pain,’ I think in the morning, as I eye up the wheelchair I am about to spend eight solid hours in; ‘what’s the point in trying to fight it?’ This attitude would seem to make me the paragon of acceptance, but in reality the point of trying to fight it is blindingly obvious: I would feel better. This attitude was also the cause of the abject panic I felt when my hip began to hurt last year. Was this another invisible wound I was going to have to learn to ignore, another way my body was going to punish and be punished? When the pain went away, I could have wept with relief.

People flinch when I talk about pain, as if in mentioning it I have somehow passed it on to them. They do not like the idea that there is pain that cannot be fixed with pills and bandages and rest. They do not like the idea that some people are just living with pain, on a daily basis, because they imagine that this must make life bad, and they do not believe they could cope with it. They believe this is a choice you get to make, and it scares them. They are scared, I think, because they know they do not understand, and because, as with all such things, the anticipation of pain is worse than the reality.

My faithful companions

This discomfort with pain’s true nature also exists, believe it or not, in the medical establishment. Doctors, in particular, have an irrational relationship with chronic pain. The response veers wildly from apathy - learn to live with it - to assuming that you would and should do anything - anything - to not be in pain, because it must be the worst thing to ever happen to you. For me, that has often looked like being told to work less, or find work that isn’t computer-based, which totally makes sense for a girl whose only motor skill is… typing. The idea that I would choose to work and be in pain is met by blank stares - this is not what they know. It’s no surprise to me that doctors in the US were so receptive to the Sackler’s dodgy advertising and so willing to overlook what they knew about opioids’ side effects; the black and white view of pain would lead anyone to believe a quick fix was in order. If we are to really reckon with the opioid crisis, as Radden Keefe has tried to do, we are going to have to understand that chronic pain is contradictory, illusive and complex, and our approach to it needs to reflect that reality.

In the meantime, you’ll find me smothered in Deep Heat.

See you next week,
Lucy

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Links of the week

• I am now kind of obsessed with disabled philosopher and journalist Chloe Cooper Jones - and she was recently on my favourite podcast! She had a lot of very interesting things to say, and I really recognised her experience of working to get everyone around her to forget about her body and why this was a really unhealthy coping mechanism. Listen to the episode of Longform here

• This is a beautiful piece about a former prisoner who moves in with a couple who ran his prison’s art programme, becomes the elderly man’s carer as dementia takes over, and finds unexpected love. I think a lot about what it is to care and be cared for, and I think this piece comes close to an answer (The Atavist)