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.
It is exactly this kind of situation that makes me uncomfortable with giving my health issues a name that isn't accurate (e.g. calling severe headaches "migraines") just because that name will be more legible to a wide audience.
At the same time, my experience with my family's toughness-pressure makes me wonder if people who say they "only dislike" certain foods are also caught in a back-and-forth naming problem. If you have a family that downplays any allergy except one that requires you to carry an epi-pen, you might start telling yourself "It's not really an allergy, I just don't like how my mouth feels when I eat it...but the best way to get most people to understand that it makes me uncomfortable is SAYING it's allergy." I have a friend who is allergic to cilantro -- it makes her tongue and lips start to go numb -- and a lot of our friends tend to treat it as a food preference rather than a real health problem unless she does a lot of explaining.
I think bananas are a classic because of natural latex?
I want to add, too, that I am in agreement with your frustration about popular conceptions of OCD as "I care a lot about handwashing and routines". A former student who grew up into a friend ended up leaving academia because it triggered her compulsion so badly.
"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.
It also doesn't help that my mom and sister, who have both dealt with significant chronic pain and related issues (fibromyalgia, cfs, etc) have often treated me as weaker than they are. I sometimes try to catch problems early, before they get bad, and to them it looks like an overreaction. "What, you're spending a whole day in bed just because you had a sore throat last night?" "Well, yes, because I'd rather it didn't turn into raging bronchitis." But twice in my life I've gotten pneumonia, and once I was walking around with it for a month before I finally gave in and saw a doctor.
I wrestle with this *constantly* -- my mom instilled in me a nasty habit of ignoring bodily pain/problems very young ("don't be a hypochondriac") and while I've taken exams and given presentations with bronchitis before, I reached a point in the past few years where I would like to not do that. (My mother is also now reaping the benefits of her own self-neglect and it's encouraging me to actually put in the work I've been avoiding on my own physical self-care.)
It doesn't help that I spent two years as an elementary school librarian and let me tell you that schools are one of the *least* supportive environments for pain or illness (and they're very female-heavy spaces!). I'd hear my coworkers talking behind peoples' backs about other teachers "making [an illness or other condition] such a big deal" to the point where I showed up to teach with strep and no voice (my first class started juuuust after the 24-hour antibiotics mark). Environments like that are women failing to support other women simply because they think "it's not bad enough for you yet, I (or someone else) have had it worse," which perpetuates the continued idea that pain, discomfort, or needs can all fit into clearly identified pre-existing boxes. I kind of think of this idea as "misery gatekeeping" (a spin on misery poker): you can only be miserable if it's THIS bad, but if it's not THIS bad yet, don't be sad about it, show up, and shut up.
Oh man, working in a school is so bad for that on all the different fronts. I taught high school -- at a small independent private school -- for five years; we got two official "days off" in our contracts. You could take more than that if you were sick, and they were really nice about it (see the two weeks I was out with real pneumonia) but still: If you were sick you had to find your own sub from a list of parents who had said they were willing to volunteer, and then you had to write up lesson plans to give them. It was so much easier to just show up and phone it in than to write out scripts for teaching five different preps (including Latin).
But that's getting into a different problem than this post is trying to address! =P
I had a similar experience the one year I taught public high school. The secretary, or whomever it was that tracked teacher absences, was very critical of the number of days I had missed due to illness. She was actually one of the reasons I left teaching.
Aw man, I'm sorry you had that experience! I thankfully never felt actively judged for being sick, and we had a great secretary/admin who was as helpful as she could be with a million other things on her plate.
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.
I have a feeling many of us will understand this discussion in the context of childbirth. It was certainly the first thing I thought of. I became a different person during each of my births, even after the first one when I had a better idea of what I was getting into. I became less assertive and more docile in a way that wasn't helpful to me. By number four I got better at standing up for myself, but I hate this compliant person I become when I feel so vulnerable.
Thank you for saying that about becoming less assertive and more docile while in labour! I felt that way, myself, but I've only given birth the one time, so it's harder to generalise.
Assertiveness was, in fact, the one point in Mikki Kendall's otherwise-excellent book "Give Birth Like a Feminist" that I disagreed with. For the most part, title notwithstanding, she's pretty good about acknowledging that there's no right or wrong way to give birth and that systems often have more power than individuals to improve our culture around giving birth. But she does suggest "being more assertive" as a good idea, even in labour! Which is fine, in principle, if you can manage it, but it's not reasonable to expect this of people. If you can get as far as voicing your wishes, assertively OR timidly, you've already done well and it should really be up to the people around you to respect you at that point.
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.
That particular explanation is famously unhelpful for women, who often assume "eh, it could be worse"; I've heard the following things about pain scales/numbers:
- from the internet, so take it with some salt, an EMT training said "if a woman gives you a number, add two."
- my chiropractor in Maryland (very competent sports medicine people!) had particular points with measurable things: if you make a face, it's a 5. If your partner notices, it's a 7 (at least). (I've found that particular system incredibly helpful.)
There's a great Jim Gaffigan sketch about this problem ... like, the worst pain possible is said to be breaking your femur, and he was mentally imagining a bunch of femur patients booing him like the crone from The Princess Bride, so he dialed it back down to "8".
Huh, that just made me think: is one of the differences between how men and women use the pain scale our understanding of the starting reference point? Like, are we [women] counting up from 0 where the pain scale is understood by health providers as something where you work backward from 10 or out from 5?
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.
It is exactly this kind of situation that makes me uncomfortable with giving my health issues a name that isn't accurate (e.g. calling severe headaches "migraines") just because that name will be more legible to a wide audience.
At the same time, my experience with my family's toughness-pressure makes me wonder if people who say they "only dislike" certain foods are also caught in a back-and-forth naming problem. If you have a family that downplays any allergy except one that requires you to carry an epi-pen, you might start telling yourself "It's not really an allergy, I just don't like how my mouth feels when I eat it...but the best way to get most people to understand that it makes me uncomfortable is SAYING it's allergy." I have a friend who is allergic to cilantro -- it makes her tongue and lips start to go numb -- and a lot of our friends tend to treat it as a food preference rather than a real health problem unless she does a lot of explaining.
Interesting - cilantro is one of the issues of the two I mentioned (the other is bananas).
I think bananas are a classic because of natural latex?
I want to add, too, that I am in agreement with your frustration about popular conceptions of OCD as "I care a lot about handwashing and routines". A former student who grew up into a friend ended up leaving academia because it triggered her compulsion so badly.
No, the bananas were one of the preferences that claims an allergy, although you are correct that a latex allergy can cause a true banana allergy.
"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.
This makes total sense to me! We give a lot more slack to something that has a *name* rather than something equally hard and idiopathic.
It also doesn't help that my mom and sister, who have both dealt with significant chronic pain and related issues (fibromyalgia, cfs, etc) have often treated me as weaker than they are. I sometimes try to catch problems early, before they get bad, and to them it looks like an overreaction. "What, you're spending a whole day in bed just because you had a sore throat last night?" "Well, yes, because I'd rather it didn't turn into raging bronchitis." But twice in my life I've gotten pneumonia, and once I was walking around with it for a month before I finally gave in and saw a doctor.
I wrestle with this *constantly* -- my mom instilled in me a nasty habit of ignoring bodily pain/problems very young ("don't be a hypochondriac") and while I've taken exams and given presentations with bronchitis before, I reached a point in the past few years where I would like to not do that. (My mother is also now reaping the benefits of her own self-neglect and it's encouraging me to actually put in the work I've been avoiding on my own physical self-care.)
It doesn't help that I spent two years as an elementary school librarian and let me tell you that schools are one of the *least* supportive environments for pain or illness (and they're very female-heavy spaces!). I'd hear my coworkers talking behind peoples' backs about other teachers "making [an illness or other condition] such a big deal" to the point where I showed up to teach with strep and no voice (my first class started juuuust after the 24-hour antibiotics mark). Environments like that are women failing to support other women simply because they think "it's not bad enough for you yet, I (or someone else) have had it worse," which perpetuates the continued idea that pain, discomfort, or needs can all fit into clearly identified pre-existing boxes. I kind of think of this idea as "misery gatekeeping" (a spin on misery poker): you can only be miserable if it's THIS bad, but if it's not THIS bad yet, don't be sad about it, show up, and shut up.
I looove the term "misery gatekeeping".
Oh man, working in a school is so bad for that on all the different fronts. I taught high school -- at a small independent private school -- for five years; we got two official "days off" in our contracts. You could take more than that if you were sick, and they were really nice about it (see the two weeks I was out with real pneumonia) but still: If you were sick you had to find your own sub from a list of parents who had said they were willing to volunteer, and then you had to write up lesson plans to give them. It was so much easier to just show up and phone it in than to write out scripts for teaching five different preps (including Latin).
But that's getting into a different problem than this post is trying to address! =P
I had a similar experience the one year I taught public high school. The secretary, or whomever it was that tracked teacher absences, was very critical of the number of days I had missed due to illness. She was actually one of the reasons I left teaching.
Aw man, I'm sorry you had that experience! I thankfully never felt actively judged for being sick, and we had a great secretary/admin who was as helpful as she could be with a million other things on her plate.
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.
I have a feeling many of us will understand this discussion in the context of childbirth. It was certainly the first thing I thought of. I became a different person during each of my births, even after the first one when I had a better idea of what I was getting into. I became less assertive and more docile in a way that wasn't helpful to me. By number four I got better at standing up for myself, but I hate this compliant person I become when I feel so vulnerable.
Thank you for saying that about becoming less assertive and more docile while in labour! I felt that way, myself, but I've only given birth the one time, so it's harder to generalise.
Assertiveness was, in fact, the one point in Mikki Kendall's otherwise-excellent book "Give Birth Like a Feminist" that I disagreed with. For the most part, title notwithstanding, she's pretty good about acknowledging that there's no right or wrong way to give birth and that systems often have more power than individuals to improve our culture around giving birth. But she does suggest "being more assertive" as a good idea, even in labour! Which is fine, in principle, if you can manage it, but it's not reasonable to expect this of people. If you can get as far as voicing your wishes, assertively OR timidly, you've already done well and it should really be up to the people around you to respect you at that point.
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.
That particular explanation is famously unhelpful for women, who often assume "eh, it could be worse"; I've heard the following things about pain scales/numbers:
- from the internet, so take it with some salt, an EMT training said "if a woman gives you a number, add two."
- my chiropractor in Maryland (very competent sports medicine people!) had particular points with measurable things: if you make a face, it's a 5. If your partner notices, it's a 7 (at least). (I've found that particular system incredibly helpful.)
There's a great Jim Gaffigan sketch about this problem ... like, the worst pain possible is said to be breaking your femur, and he was mentally imagining a bunch of femur patients booing him like the crone from The Princess Bride, so he dialed it back down to "8".
Huh, that just made me think: is one of the differences between how men and women use the pain scale our understanding of the starting reference point? Like, are we [women] counting up from 0 where the pain scale is understood by health providers as something where you work backward from 10 or out from 5?
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.