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the fact that medical schools have built a culture that normalizes misery & suffering in their student body, makes me really worried about the fact that these are future members of a profession whose purpose is in large part to help minimize human misery & suffering

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I passed out for the first time since before the start of the panoramic, and coming to with a mask on was lowkey terrifying. I’m not saying that if I passed out in public I’d want someone to remove the mask, because all things considered I’d rather be safe, but wow not fun. I didn’t know where I was and the mask was in my mouth and I thought I couldn’t breathe

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Okay I decided I do have a legitimate critique of it and that’s that acting like you need a euphemism for “disabled” carries the implication that disability is shameful. There’s nuance there, of course, but yeah that’s why the phrase itself bothers me.

I happen to be in a position to know (being in a literal disability studies course with her) that this colleague doesn’t (seem to) hold views on disability that I find objectionable, and I assume she uses it because she’s been through some kind of diversity trainings that taught her to say it, but like... ew I wish she would not

This person in my grad program always says “differently abled” and god it makes me cringe every time. I don’t know if I even have like... a legitimate critique of it necessarily? But I just really don’t like it lol

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This person in my grad program always says “differently abled” and god it makes me cringe every time. I don’t know if I even have like... a legitimate critique of it necessarily? But I just really don’t like it lol

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An experience I think about all the time was something that happened like three years ago, when a doctor was trying to evaluate me with a hypermobility checklist and she went “do you have unusually velvety skin?” and I was like ...uh, I don’t think so?

and at first she nodded and started to move on to the next checklist item but then she stopped and reached out to stroke my arm and then went “hmm” 

she then proceeded to call in TWO different people, a nurse and then an MA, to feel my arm skin and decide whether it was unusually velvety

...The general consensus was that I do, indeed, have Unusually Velvety Skin

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disability advocacy went wrong when it became about inspiration porn and “differently abled” and savants. its incredible that that guy with no legs did a triathlon but your sister with no legs will not and she doesnt need prosthetics or five hour training days to deserve respect and compassion and accommodations. its incredible that that autistic guy can look at a city from a helicopter for an hour and then draw the entire detailed skyline from memory when he lands but your autistic friend cannot and they dont need to have a special Autism Power to deserve respect and compassion and accommodations. 

activism framed around “we are just as CAPABLE” means that when people genuinely are less capable they are left behind. activism framed around “we are just as WORTHY” is fundamental to radical compassion.

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I love how easy access to academic articles is. you just:

happen to stumble upon an interesting article on jstor via google

turn on and log into your uni’s vpn client

click through 5 pages on the library’s website to go to jstor through the secured university-paid access line

find out for some reason said article isn’t included in the university-paid jstor access

copy the article’s name in your library’s search engine

come up with no results

copy the author’s name into your library’s search engine

find the article!

click on “full text access” 

have to log in to another university online system

find out it cancelled your search when logging in

start the search again

click on “full text access” again

cry in relief when the article actually opens and is downloadable

(optional) find out that the article wasn’t even all that helpful

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Oh I beg to differ, my discussion classes keep putting us in Zoom breakout rooms for exactly this purpose

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A thematically-appropriate friend to help me with my reading for class this week

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This is seriously problematic when all of my classes start between 4 and 6 PM

When it hits 5pm and the ADHD meds start wearing off

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I have been seeing a lot about “long Covid” (which, as an aside, I’m sorry but that is a ridiculous name) (or maybe Tumblr has just ruined me because ~l o n g  e~) and how large and ever-increasing numbers of people are now experiencing chronic/invisible illness for the first time as a result of having had a COVID-19 infection months ago, from which they have not fully recovered for reasons that are often are (as yet) unclear to medical science. Lots of the sentiment “we in the chronic illness community are here for you” which, don’t get me wrong, I love that, I’m here for that. 

I study illness and disability in part because I want to be better at helping people through the experiences I’ve had, and also to improve the systems and the culture around illness and disability. I know this is important, and in theory, I am well-positioned to be a person who does like, outreach and patient advocacy and what have you, even if it’s just informally by talking to people online or whatever.

But one of those people newly encountering a life of chronic illness (well, not entirely new, but definitely new to this level of life-altering physical symptoms anyway) after a COVID infection in late March is my current roommate, who is also one of my oldest and closest friends. And I love her, and I want to be there for her, and I can relate to a lot of what she’s going through. In theory, I should be able to be helpful, at least to be there for her and to be an understanding and supportive ear. With that plus my background with studying and discussing illness narratives and how to witness them, I should be uniquely positioned among the people in her life to empathize with what she is going through.

...except that hearing her talk about things like doctors not listening to her and/or not being able to help, having to give up things she loves, reckoning with the possibility that she can’t have the career she’s always wanted, having to newly calculate how she spends her now-seriously-limited energy... it all just triggers the hell out of me. 

She starts talking about something and almost immediately I just want her to shut up because it hurts. Even worse is when she responds differently to something than I would, (like for example, she’s much more likely to be angry and want to be confrontational about a doctor saying they can’t do anything for her and not doing any tests but then charging her hundreds of dollars for the visit anyway, and at this point I just accept that as par for the course, but tbh even ten years ago I never would’ve considered actually arguing with the bill even if I was upset about the lack of care) and I get angry because that feels irrationally like a condemnation of how I have chosen to respond to my own experiences. I try not to actually argue with her, but I’m sure it’s immediately obvious that I’m defensive, and it definitely fully prevents me from being supportive.

I had a roommate in undergrad who was also a friend (although not as close, and I hadn’t known her for nearly as long) and who had been chronically ill, with many symptoms similar to mine, for many years (way longer than me, actually) and living with her it was generally a relief that we had this thing in common, because she understood things about me and my life that most people don’t get. Even though we were very different in some ways in our approaches to life and to illness, she and I got along better for having had those experiences in common.

Maybe it’s because the thing we had most in common were the old callouses, the knowledge of how to just keep grinding on. With my current roommate the emotion is too raw because too much of it is new. Most of the fear has drained from my day-to-day experience of illness. I don’t have answers but I have a sort of status quo. And, of course, I’m doing much better than I was a few years ago. My daily life has stabilized immensely. But I hadn’t anticipated how much trauma I have from that time in my life, from the way it felt to be first in that limbo, when that unfathomable unanswerable “will I get better or is this just my life now” question haunted everything I did and every plan I made. I don’t know how to help, partly because sometimes there’s just nothing that can help, but I also don’t even know how to be supportive if, when she talks about her experiences, all I can do is shut down so I don’t break down. 

I don’t even really feel like I can tell her this, because I know her and I know she is a person whose greatest fear is being a burden on people. She already struggles to believe it’s okay for her to share personal (especially negative) things about herself and her life, and to believe she’s worthy of love and support. Of course she’s already sensing it in my response, already avoiding the subject, but I feel like I can’t come out and say “when you tell me about your suffering, it causes me pain” because even if I followed it with “but that’s okay, I still want to know, I am still your friend and I still want you to feel like you can share with me, I still want to do my best to be here for you” I’m afraid she wouldn’t hear that part because her guilt would be too loud. Every time she wanted to share something with me, she would worry about me first. I don’t want that to happen, I just want to be able to engage better, I wish I could just acknowledge my personal trauma and then set it aside.

I want to be strong enough to do that, and maybe there was a time when I might have been, but the world is already so much, so hard, so painful right now. My own mental health is holding on by a thread as it is. I’m back in school (virtually), which has a tendency to push me to my breaking point even when we’re not living on the precipice of a climate apocalypse and the fall of American democracy, in the midst of a pandemic that has also ripped away so many of my coping mechanisms and sources of joy. I don’t have the strength to fight this, too, when I’m already either on edge or completely run down so much of the time. And on top of that, all of this is happening with the person who is my only source of regular in-person interaction. Like, that’s a recipe for roommate tension all on its own, sharing an apartment in a time of social distancing. (She is basically my only source of in-person contact, but I am not hers. She has a few other people that she sees regularly, and in some ways that’s a whole other source of sublimated frustration, the fact that she’s not being as careful as I am with her pandemic precautions, but in most other ways I am grateful, because it means we are not constantly in this apartment together, and it means she has other people on whom she can rely.)

I didn’t mean to write this much, meant to end this thought at “I want to believe that I’m part of a welcoming and supportive chronic illness community, except that personally watching someone else live this triggers me” but ah, apparently I needed to get this out or something I don’t know

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if my bones are gonna crack like glow sticks every time i move i think i deserve bioluminescence. both to complete the aesthetic and as a consolation prize

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I’ve decided abled people are hereby forbidden from using disability-related metaphors until you can learn to properly think through the implications please and thank you lmao

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I’m legitimately about to cry. The World Health Organization announced today that they are going to start looking into post viral fatigue in relation to Covid-19 and the symptoms being experienced by long-haul covid sufferers. (source)

And Janet Dafoe, who is one of the forefront advocates for ME/CFS and the wife of the leading world expert in Myalgic Encephalomyelitis tweeted at him about getting in touch with her husband over pooling resources and looking more into ME/CFS and the director of WHO responded. (source)

This is huge. This is so huge. WHO might actually acknowledge and put resources toward ME/CFS. I’m losing my mind.

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You can require masks and claim you’re taking all the “social distancing” and hygiene precautions you want, but having a bunch of people sit together in a room for 6+ hours is simply NEVER going to be safe when COVID transmission is still out of control (oops, yikes @schools).

Even setting aside the known risk of asymptomatic transmission from people with no way to know they’re infectious, it is also virtually 100% certain that a not-insignificant number of people will show up to the exam despite having a known exposure to the virus, while actively experiencing symptoms, or even having tested positive. The AAMC seems to think they can say “just stay home if you’re sick uwu!” and that will magically reverse deep-seated pre-med gunner psychology and the legacy of decades of a blatant MCAT policy of “you have to show up at your scheduled time no matter what no exceptions even if you’re literally dying.” They’ve waived rescheduling fees through the end of September and extended (some) application deadlines to help ameliorate this, but because rescheduling cancelled exams from March-May was a nightmare for many people, and because applying as early as possible to med school is widely known to confer a substantial admissions advantage, as long as the MCAT is required, people will continue to knowingly and unknowingly expose fellow test-takers (and test center employees, and all contacts thereof) to a potentially deadly or permanently debilitating infection. Some of these students will travel hundreds, if not thousands, of miles to do so. Some people will likely get critically ill as a direct result of someone taking the MCAT. Some may die.

The ONLY reasonable, ethical choice is for medical schools to collectively decide to eliminate the MCAT as a deciding factor for at least this round of medical school applicants (or at least to go MCAT-optional). I know that’s not a simple thing to say. Obviously it would be a huge burden logistically, and it would definitely raise (probably legitimate) questions of fairness for applicants who already spent the large amount of money and time and effort to study for the exam, and especially for those who have taken it already and scored well. A lot of people would be Big Mad about that decision were the AAMC to make it.

But continuing to require the MCAT during a pandemic unfairly penalizes applicants who are immunocompromised or otherwise at an increased risk from COVID-19 (and those who live with people who are). It penalizes people who work in healthcare and other “essential” jobs who are more likely to have a COVID exposure. The myriad inequalities always present with any standardized test like the MCAT are now amplified dramatically (for economically disadvantaged people in ever-more tenuous situations due to the pandemic, and for people of color, particularly Black people, for whom the trauma of the past few months has been disproportionately, unimaginably high). And even for young, healthy, rich, white applicants who live alone and have ample leisurely quarantine time to review amino acid chemistry until their eyes bleed, physically being present to take this exam requires putting their lives and health (and that of others they come in contact with, ultimately including our communities as a whole) at serious risk, just to take a standardized test.

I know this change is not going to happen. The AAMC is a “non-profit” that clearly still cares an immense amount about making money off of students. And anyway, gatekeeping med school admissions is extremely important to a lot of very powerful people.

Maybe as far as number of infections goes, this is a minor issue amongst other things like schools reopening or bars still being open. But as an organization ostensibly dedicated to healthcare, the AAMC especially should know better than to knowingly contribute further to the spread of a deadly pandemic disease. Everyone in positions of power regarding med school admissions for this year ought to be ashamed that that is what they’re doing.

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ask your doctor what the fuck

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Second ER visit of 2020 because an ovarian cyst ruptured and I lowkey thought I was dying because it was like the worst pain I’ve ever felt (including other, larger cysts that have ruptured??? Go figure)

The good news, such as it is, is that the ED was like practically empty, so at least it wasn’t COVID time and I don’t feel like I have to self-isolate again