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).
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.
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*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.*
Thanks for these insights (and I am one who finds the fight/battle metaphors with serious illness pretty problematic and often offensive, but I recognize too that survivors may draw strength from empowerment as a message)
A friend of mine who had some medical problems said something similar to you, about reframing and adjusting.
Your comments about finding support online also relate to another element here - people who have been brushed off by doctors and had their concerns ignored. (Of course the fact a doctor ignores you doesn't mean you're really sick: there are people who believe in Morgellons...)
I thought using fight/battle metaphors for people with illnesses was fine, until I got sick, so for anyone who thinks karma doesn't exist, well...
Ok, I may have lied a little bit when I said "simple" reframing. There was definitely a bit of adjustment involved on my part, where typical CBT "think positive" texts by David Burns would feel amazing and supportive one day and then completely unrealistic and dismissive the next- sometimes on the same day. I've since grown to appreciate and respect Burns and CBT a lot more, but I won't deny that framing things positively and seeing the silver lining is in and of itself a *difficult* skill to cultivate if one has not done it regularly before. The only thing is, I felt like I had no choice.
On the subject of feeling sick and having doctors either tell you it's all in your head or that you're overreacting, that is also an astute point. While most of the mainstream news headlines about this phenomenon are about its disproportionate impact on women, I have no trouble believing that, because it happened to me a few times.* And I can certainly sympathize with the fact that if you feel like people aren't taking you seriously, whether it's spoonies, conspiracy truthers, or pimply kids on 4chan, you will keep looking until you find someone who does.
*for the record, it was roughly even between male and female doctors, so no gender bias there. That being said, I will also state that in general, DOs tended to be nicer than MDs.
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.
Thanks for these insights (and I am one who finds the fight/battle metaphors with serious illness pretty problematic and often offensive, but I recognize too that survivors may draw strength from empowerment as a message)
A friend of mine who had some medical problems said something similar to you, about reframing and adjusting.
Your comments about finding support online also relate to another element here - people who have been brushed off by doctors and had their concerns ignored. (Of course the fact a doctor ignores you doesn't mean you're really sick: there are people who believe in Morgellons...)
I thought using fight/battle metaphors for people with illnesses was fine, until I got sick, so for anyone who thinks karma doesn't exist, well...
Ok, I may have lied a little bit when I said "simple" reframing. There was definitely a bit of adjustment involved on my part, where typical CBT "think positive" texts by David Burns would feel amazing and supportive one day and then completely unrealistic and dismissive the next- sometimes on the same day. I've since grown to appreciate and respect Burns and CBT a lot more, but I won't deny that framing things positively and seeing the silver lining is in and of itself a *difficult* skill to cultivate if one has not done it regularly before. The only thing is, I felt like I had no choice.
On the subject of feeling sick and having doctors either tell you it's all in your head or that you're overreacting, that is also an astute point. While most of the mainstream news headlines about this phenomenon are about its disproportionate impact on women, I have no trouble believing that, because it happened to me a few times.* And I can certainly sympathize with the fact that if you feel like people aren't taking you seriously, whether it's spoonies, conspiracy truthers, or pimply kids on 4chan, you will keep looking until you find someone who does.
*for the record, it was roughly even between male and female doctors, so no gender bias there. That being said, I will also state that in general, DOs tended to be nicer than MDs.