I’ve been thinking a lot about Kat Rosenfield's piece on online ill health culture, and people who have built their identity around (usually chronic, and sometimes self-diagnosed, ailments).
Within the spoonie universe, the most viral content is centered on suffering, struggle, and limitation. One prominent influencer with more than 40,000 followers posts weekly photos in which she's smiling beatifically at the camera, her body blocked by text that reveals the turmoil within: ‘I wish I could tell you how much it hurts when you tell me I look well,’ reads one.
Although I’d been broadly aware of “spoonies”, Rosenfield highlights an element I hadn’t noticed, the resistance of some to the notion of being healed: that those who wish to pursue recovery are somehow pitted against those who do not.
the community's influencers can be profoundly hostile toward those who see disease as a problem to be solved rather than an identity to be protected. Under this paradigm, the desire to be healthy becomes ‘internalized ableism’
And I saw a parallel to the longer-running issue of debate within the Deaf community to cochlear implants, which are framed (unfortunately) by non-deaf people as “curing” deafness. This remains a contentious issue. Although one could argue that the Deaf community, with its own language and culture is much more of a community than many of these online health discussion groups.
I wonder too whether for some of those who build their identity online through spoonie-related groups, membership of a group is as important to them as whatever the condition is in itself. To be “cured” would be to be stripped therefore, of that identity. If they're not a member of this particular group, are they just some random normie and no longer special?
The impossibility (or undesirability?) of cure also reminded me of the mindset of 12 Step programs. That an alcoholic is always an alcoholic, that there is no such thing as a former drunk. This worldview holds that it is therefore impossible for someone who is actually addicted to alcohol to simply cut back to moderate social drinking. It is an all-or-nothing enterprise. (This is something with which many people with a history of substance abuse have struggled).
I'm not judging anyone who finds that for their recovery it is best to never again be around the substance that got them into trouble. But we know this doesn’t work for everyone, and there are other pathways that have been developed in recent years, like pharmaceutical treatments.
But to be cured can destabilise people’s idea of themselves - if my addiction was curable, why wasn’t I able to cure it sooner? Was it really an addiction or am I just suffering from a lack of willpower? Not to mention being judged by others who have their own fixed ideas of what addiction and recovery mean.
It is also not new for people to feel having some kind of condition is what gives their life meaning. As Carolyn Day wrote about the cultural role of consumption in the nineteenth century, to be consumptive was to be elegantly weak, vulnerable and refined. Too delicate for this life.
The physically perfect may be heroic but they are not romantic, because our sympathies are drawn to the flawed. The picturesque, the elegant death of tuberculosis was romantic: dying of cholera was not. (Succumbing to dysentery or typhoid don't come up in many opera plots).
Romanticizing physical illness was a way for people in the eighteenth and nineteenth centuries to rationalize the world, in the sense of only the good die young. They needed ways to understand the deaths of infants, but more especially young adults. To die in childhood back then was not uncommon, and was obviously tragic, but people who had survived the specter of death in the cradle and begun to be the adults they would become: their deaths were truly wrenching.
The romantic illness required suffering, to be long enough to plan for their impending doom, to be known as fated. A rapid fever that could take someone in 48 hours was terrifying, but not romantic. Romantic was a lingering disease without too many off-putting physical indications. Pale skin, thinness: romantic. Diarrhea and necrotizing flesh: not so much.
So with tuberculosis Victorians had the perfect romantic illness. It was seen to denote emotional, as well as physical delicacy. A refinement and weakness to which young women could aspire. And whereas Victorians didn’t have a cure for TB, some of today’s illness-culture identifiers, apparently don’t want one.
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As someone who has had a multitude of various physical and mental ailments, including but not limited to FOO issues from childhood, anxiety and depression during and after college which briefly got to the point of suicidal thoughts, an undiagnosed chronic ulcer-like pain that doctors have called "functional dyspepsia" and failed to pinpoint after multiple endoscopies, a case of bladder cystitis that felt like a grease fire between my legs, associated insomnia leading to severe migraines, and (just to throw it in) tinnitus and carpal tunnel syndrome, I can say this on the subject:
There is certainly value in being able to view one's physical and mental suffering in positive terms, or as part of a larger personal narrative. While I don't subscribe to the blunt platitude that "everything happens for a reason", I have found that simple psychological reframing, cognitive behavioral therapy, and stoicism (that oft-ridiculed punching bag of toxic masculine techjockbros everywhere), I have been able to pull myself out of some pretty dark places and even sometimes enjoy life in situations where I would otherwise have experienced a lot of pain or done something regrettable, and for that I am grateful.*
There are also certain forms of knowledge and empathy that I confess I wouldn't have obtained through living an otherwise health-privileged life: certain patterns and actions of thinking that have turned me into (if not a model citizen) then at least someone who's tried to better their community and offer help to others, instead of playing video games and wasting time on the internet all day. (I realize that someone with a more comprehensive history of my substack comments might dispute this claim.)
And lastly, there's no doubt that when I struggled, communities (mostly online, but some in-person as well) were undeniably a source of support, providing me advice from simple treatments/supplements to sleep hygiene and nutrition tips to a place to vent when doing so elsewhere would be unseemly. The benefits from being in a community that has experience (and empathy) with what you are going through can be like water in the desert when you struggle with any kind of ailment that simple rest and medication cannot solve.
And yet there was never a day when I confused the strength, positivity, and (yes) privileges I drew from my pain with the memories of the life I had before the pain took over.
While I cannot throw stones at the spoonie community for feeling like there are some days when you just don't have enough spoons to do everything you want, or that there are some people that can undoubtedly be jerks, I never want to live in a world where the benefits of being unwell explicitly outweigh the benefits of being well- or a world that believes it is in people's best interests to believe that.
To quote a phrase that overlaps with the social-justice sphere of the "curing diseases is ableist" group, the master's tools cannot dismantle the master's house. Well, if you're sick, your own sickness can't be your own cure, and the sooner one realizes that, the better.
*a whole separate article could be written about the phenomenon of Nick Vujicic and other similar figures who have taken severe disabilities, terminal illnesses, and other traumatic events and turned them into motivational arguments that actually their illness/trauma was the best thing that ever happened to them, and the corresponding pushback from other people who feel like that is an impossible ideal to live up to, like the trope of the cancer patient who threatens to go nuclear on the next person that forwards them an article about an inspiring CANCER HERO SURVIVOR FIGHTER. while i can certainly agree with the pushback on well-meaning but clumsy wellwishers forwarding these articles to sick people and getting confused when the sick people don't like them, the people who criticize Vujicic et al. directly and think that their work as motivational speakers itself is harmful and should be canceled- those people can kindly go eat a spotted dick.*
*i'm not british.