Are you in #ChronicPain?

Spectator

3 days ago

The pinned post at the top of the r/ChronicPain subreddit is 'how to get doctors to take you seriously'. The subreddit has 131,000 subscribers, and is a tricky community for outsiders to understand. People talk in acronyms (chronic lower back pain – CLBP, myalgic encephalomyelitis – ME, acceptance and commitment therapy – ACT) and have their own vocabulary ('spoonies' and 'zebras'). There are flippant memes about muscle relaxants next to horrific stories of medical negligence. People report their condition being so bad that they've dropped out of school or are even unable to care for their children.
We can imagine the feelings of grief – and, of course, the sheer physical suffering – that come with chronic pain conditions. Or at least, we can try to. But anger at not being taken seriously seems to be the predominant emotion on these forums. It's one thing to grieve for the life you thought you might live, and another to feel that people somehow see you as complicit in your own agony – whether due to compassion fatigue from friends, or dismissal by doctors. Medical institutions and quacks alike offer a carrot-on-a-stick approach to various treatments – many of them expensive – which often fail to improve quality of life. The resulting emotions are all different shades of anger: frustration, exhaustion, righteous indignation, pure outrage.
Luigi Mangione posted on a variety of Reddit chronic pain communities (part of what is called the #cripfam) in the months leading up to his alleged shooting of United Healthcare CEO Brian Thompson. He advised someone with a back condition to 'fake a foot drop or piss yourself. This is the absolute nuclear option, but there comes a point where it's just ridiculous that people won't operate on your broken spine.'
What specifically about pain leads to radicalisation? Pain is clearer than hunger, quicker than exhaustion, more potent than even desire. In his book What The Body Commands, the philosopher Colin Klein outlines a theory of pain based entirely on the idea that pain is inherently motivational. It is not only an unpleasant sensation, but an unpleasant sensation with a statement: do something. Listening to pain is useful because pain is not just a symptom. It is part of the cure: you are told not to continue putting pressure on a twisted ankle, or to keep agitating a scab on a scraped elbow.
But chronic pain is tricksier. Patients are told by doctors to find a variety of ways to ignore the body. This seems counter-intuitive when your whole being is screaming: do something! So some people take opioids. Others cocoon themselves in online support groups. Motivation without direction can be dangerous. Many people with chronic pain have lost their work and been dismissed as histrionic by those they trusted. They have nothing left to lose.
Patients are told by doctors to find a variety of ways to ignore the body. This seems counter-intuitive when your whole being is screaming: do something!
Pain also brings cognitive distortions: it can make someone more susceptible to black-and-white thinking. Small studies show that people suffering from chronic pain are more prone to impulsivity. There have been medically motivated attacks in the past: psychiatrists working on chronic fatigue in the UK received death threats in 2011, and in 2022 a doctor in Tulsa was shot by a patient with back pain.
People in pain have always been isolated and angry – often rightly so – but now they are very, very online. To ignore this is to ignore fertile ground for radicalisation, especially as a nascent ideology begins to emerge from the rants and commiserations of these forums. There used to be too many things to blame and too few heroes. But in the wake of Luigi, the mentality of 'us vs them' has narrowed. They have found a martyr in him, and an enemy in those institutions that seem determined to write them off. In America, this means insurance companies. In the UK, it may be politicians and NHS bureaucrats.
Chronic pain persists for a variety of reasons, and there is no magic pill. Long-term opioid use is correlated with worse pain and is no longer recommended. Sufferers find it difficult to accept help in the form of cognitive behavioural therapy and antidepressants, as these are often seen as attempts to write them off as 'headcases'. This sort of help, despite being the most supported by data, is often seen as a full-on affront to the validity of their suffering.
Chronic pain is affecting more and more people in the UK, with increasing numbers of NHS referrals. Meanwhile, doctors have less time to make them feel heard. In many ways, we are protected from the violent consequences of its radicalisation because pain is physically inhibiting – but I expect to see more Luigis. In Bethnal Green, there is a graffitied portrait of the American. The portrait is half Eastern Orthodox icon, half Rolling Stone magazine cover. Luigi has become a sainted rockstar of pain.