This post reminds me a lot of Autistic girls/women and "masking." I am on the spectrum, and I do this, especially in my childhood before I had an official diagnosis (also a problem for women on the spectrum). I did mimic and mirror my neurotypical female classmates to fit in better, even by dressing a certain way. Now, as an adult, I still do it, mainly in professional settings. However, looking back, it's tough to untangle what was masking and what was really me.
Only distantly relevant, but I know two people who claim to have allergies to foods they "only" intensely dislike. As the parent of a peanut-anaphylactic child this offends me, but I also understand it to some extent. They feel like they aren't allowed to have preferences. At the same time, the more people who claim to have life-threatening allergies, the more my daughter's very real life thread is minimized.
In a related way, as someone diagnosed with OCD, it bothers me when people talk about their preferences as "OCDs". Like, someone will say they are OCD about pictures not being crooked, but they don't actually have OCD. Like my daughter's anaphylaxis, I think that people who claim to have more serious problems that they do not have can minimize the real diagnoses in those of us who do have them.
I think an appropriate action implied by the above it to take people's claims about their diagnoses *and* their preferences seriously - to honor them.
"Are there moments where you’ve consciously made your pain or distress more legible to others by changing your reaction to better fit their expectations?" Yes, especially in how I *name* my pain. I have chronic headaches that can be quite debilitating (they don't go away unless I take a combination of painkillers and sleep while the drugs begin to work), but I know that they're not, neurologically speaking, true migraines. I've had real migraines before -- I know the feeling of the needle-fine ice pick through my right eyeball, the complete horror of any sensory input. But when I would get a bad headache and have to skip class, I would tell my professors I was having a migraine because I wanted them to realize that "she is dealing with a debilitating headache and not just being a wuss or trying to ditch the lecture."
Looking back, I realize that I could probably have said "debilitating headache" and gotten the message across; my professors were very kind and understanding people. And it feels sort of like "stolen valor" (and lying) to say that I had a migraine when I knew very that what I had was not technically a migraine. But I was trying to communicate the true *idea* as best I could.
The hardest pain legibility problem I have faced was the pain of feeling violated by the way I was treated in childbirth. How do you explain it, when "pain relief" was a central aspect of the process that caused you pain?
By a long process of painful trial and error as to the types of explanations that might land and also be at least part of the truth, I have landed on a version of the story that emphasises medical consent. I was pressured to get an epidural, the doctor told me falsely that it was medically recommended for reasons other than pain relief, I was tired and vulnerable and lying I-felt-nonconsensually on my back at the time, I feared losing what little of their respect I might still have if I "refused treatment."
That's the story I tell. But it leaves out so much. They TOOK MY LEGS. That is closer, but even that is an excuse, almost, for a violation that I can't fully explain, can't render legible even to myself. Because it wasn't just my legs that they took -- "legs" are a stand-in for sensation and also for control and also for being fully present, somehow, because I felt that my whole body mattered and I wanted it all with me, I did not want to be parted from it, pain notwithstanding. And of course all this is made yet harder by the fact that the illegibility of this wish was what made it impossible to have it be respected at the time.
Sometimes, when I tell people this story, they think I am talking about an "experience" I wanted to have had, like it's for bragging rights or even just for personal satisfaction or curiosity -- that I want to be able to say I gave birth without pain relief and know what it's like. When people say this, they are trying to make my pain legible to themselves, and they are failing. It is not about that, at all. It is about not wanting to have been violated. Perhaps it is in the nature of violation that it is hard to explain.
By the way: You imply that young people who think they might be transgender could be doing so as a way to make some other pain more legible, and of course that could be true in some cases. But it's worth noting that the notion of pain legibility is also relevant to the other side of the transgender issue. For a lot of cisgender people, problems like "not being used to your adolescent body" and "suffering because society oppresses women" are much more legible than a problem like gender dysphoria. To be transgender is to not be legible at all to a great many people.
If making our pain legible to others is a hard problem, how much harder is it, to render the pain of others legible to us? Some pains we may have felt, ourselves, but others will always be beyond our ken. We can only listen with an open heart, and to be humble as we try to empathise.
Not sure how relevant this is, but I had some doctors explain the pain scale to me as "10 = the worst pain you've ever felt." My first childbirth got up to my past personal 10, and I figured that was as hard as it could ever be.
Wrong.
(Content warning: gore)
Second childbirth happened a lot faster and with much more pressure. There was blood *on the ceiling* before it was over. And the pain? 13 at least.
On the bright side, my personal pain scale was completely recalibrated so that ordinary pains seem less intense since then. On the downside, that same recalibration means sometimes I don't realize just how badly my body is doing until it screams at me.
So yeah, legibility is also how we read/hear/understand ourselves, I guess.
I wonder how the idea of "suffering correctly" might translate into the current surge in gender dysphoria expressed by teenage girls? There's been some thought (Abigail Shrier, for example) that gender dysphoria is, in some cases, the new "anorexia." The whole idea of psychosomatic illness can be seen as deflecting the fact that our bodies and minds are not separate, but instead part of one being, therefore our minds can and do affect our bodies. The surge in gender dysphoria among young girls - a new phenomena - might be a way of expressing some other ailment.
This post reminds me a lot of Autistic girls/women and "masking." I am on the spectrum, and I do this, especially in my childhood before I had an official diagnosis (also a problem for women on the spectrum). I did mimic and mirror my neurotypical female classmates to fit in better, even by dressing a certain way. Now, as an adult, I still do it, mainly in professional settings. However, looking back, it's tough to untangle what was masking and what was really me.
Here's an article about masking:
https://www.spectrumnews.org/features/deep-dive/costs-camouflaging-autism/
Only distantly relevant, but I know two people who claim to have allergies to foods they "only" intensely dislike. As the parent of a peanut-anaphylactic child this offends me, but I also understand it to some extent. They feel like they aren't allowed to have preferences. At the same time, the more people who claim to have life-threatening allergies, the more my daughter's very real life thread is minimized.
In a related way, as someone diagnosed with OCD, it bothers me when people talk about their preferences as "OCDs". Like, someone will say they are OCD about pictures not being crooked, but they don't actually have OCD. Like my daughter's anaphylaxis, I think that people who claim to have more serious problems that they do not have can minimize the real diagnoses in those of us who do have them.
I think an appropriate action implied by the above it to take people's claims about their diagnoses *and* their preferences seriously - to honor them.
"Are there moments where you’ve consciously made your pain or distress more legible to others by changing your reaction to better fit their expectations?" Yes, especially in how I *name* my pain. I have chronic headaches that can be quite debilitating (they don't go away unless I take a combination of painkillers and sleep while the drugs begin to work), but I know that they're not, neurologically speaking, true migraines. I've had real migraines before -- I know the feeling of the needle-fine ice pick through my right eyeball, the complete horror of any sensory input. But when I would get a bad headache and have to skip class, I would tell my professors I was having a migraine because I wanted them to realize that "she is dealing with a debilitating headache and not just being a wuss or trying to ditch the lecture."
Looking back, I realize that I could probably have said "debilitating headache" and gotten the message across; my professors were very kind and understanding people. And it feels sort of like "stolen valor" (and lying) to say that I had a migraine when I knew very that what I had was not technically a migraine. But I was trying to communicate the true *idea* as best I could.
The hardest pain legibility problem I have faced was the pain of feeling violated by the way I was treated in childbirth. How do you explain it, when "pain relief" was a central aspect of the process that caused you pain?
By a long process of painful trial and error as to the types of explanations that might land and also be at least part of the truth, I have landed on a version of the story that emphasises medical consent. I was pressured to get an epidural, the doctor told me falsely that it was medically recommended for reasons other than pain relief, I was tired and vulnerable and lying I-felt-nonconsensually on my back at the time, I feared losing what little of their respect I might still have if I "refused treatment."
That's the story I tell. But it leaves out so much. They TOOK MY LEGS. That is closer, but even that is an excuse, almost, for a violation that I can't fully explain, can't render legible even to myself. Because it wasn't just my legs that they took -- "legs" are a stand-in for sensation and also for control and also for being fully present, somehow, because I felt that my whole body mattered and I wanted it all with me, I did not want to be parted from it, pain notwithstanding. And of course all this is made yet harder by the fact that the illegibility of this wish was what made it impossible to have it be respected at the time.
Sometimes, when I tell people this story, they think I am talking about an "experience" I wanted to have had, like it's for bragging rights or even just for personal satisfaction or curiosity -- that I want to be able to say I gave birth without pain relief and know what it's like. When people say this, they are trying to make my pain legible to themselves, and they are failing. It is not about that, at all. It is about not wanting to have been violated. Perhaps it is in the nature of violation that it is hard to explain.
By the way: You imply that young people who think they might be transgender could be doing so as a way to make some other pain more legible, and of course that could be true in some cases. But it's worth noting that the notion of pain legibility is also relevant to the other side of the transgender issue. For a lot of cisgender people, problems like "not being used to your adolescent body" and "suffering because society oppresses women" are much more legible than a problem like gender dysphoria. To be transgender is to not be legible at all to a great many people.
If making our pain legible to others is a hard problem, how much harder is it, to render the pain of others legible to us? Some pains we may have felt, ourselves, but others will always be beyond our ken. We can only listen with an open heart, and to be humble as we try to empathise.
Not sure how relevant this is, but I had some doctors explain the pain scale to me as "10 = the worst pain you've ever felt." My first childbirth got up to my past personal 10, and I figured that was as hard as it could ever be.
Wrong.
(Content warning: gore)
Second childbirth happened a lot faster and with much more pressure. There was blood *on the ceiling* before it was over. And the pain? 13 at least.
On the bright side, my personal pain scale was completely recalibrated so that ordinary pains seem less intense since then. On the downside, that same recalibration means sometimes I don't realize just how badly my body is doing until it screams at me.
So yeah, legibility is also how we read/hear/understand ourselves, I guess.
I wonder how the idea of "suffering correctly" might translate into the current surge in gender dysphoria expressed by teenage girls? There's been some thought (Abigail Shrier, for example) that gender dysphoria is, in some cases, the new "anorexia." The whole idea of psychosomatic illness can be seen as deflecting the fact that our bodies and minds are not separate, but instead part of one being, therefore our minds can and do affect our bodies. The surge in gender dysphoria among young girls - a new phenomena - might be a way of expressing some other ailment.