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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