Thread by @DisInHigherEd

Anonymous Story #21 - I'm Just tired

We will be posting this story as a thread below, but if you'd prefer to read it as a blog, you can do that.
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#DEHEM21 #DisInHigherEd

It's hard to know where to start. I've spent the last decade feeling like I've been walking a tightrope, while people are constantly trying to push me off. If I don't just bear with it & instead push back, it increases. Now that I've long COVID, I think they'll finally succeed 2/

It's been a weird journey. I am Autistic, have ADHD, and POTS, as well as a few other things. I'm also the first in my family to go to college. I love working with data and helping people figure out how to use it best to solve their research problems. 3/

I realized early on it might not be a good idea to disclose my disabilities, especially when other students would relay to me that a professor had broken confidence and told them and further encouraged the students to not interact with me. 4/

Even if I didn't disclose, the gist of it would come out via accommodations for classes. And when it came up that I was trying to go to grad school, multiple professors told me that I wasn't cut out for it because of my accommodations. 5/

"In the real world, you have to work on a schedule & people will not wait for you" "This slowness will drag your cohort down." Even my mentor in a diversity fellowship told me in regard to requesting accommodations for the GRE that eventually I would need to, cut that shit out 6/

In a very madlad mood, or perhaps someone with very little self-worth, I still became a grad student in the department with the most push back, because I desperately wanted to learn more about the subject. 7/

I think with Autism, you learn how to mask a lot of traits people find off-putting. For me, this happened mostly subconsciously over time. In a similar fashion, I found ways to get professors to stop trying to push me out. 8/

I said yes to almost every opportunity that came my way. I applied for outside funding, fellowships, grants, anything I could find. Eventually, the comments stopped. I was the first to ask for master’s exam accommodations in that program's history. 9/

I was also the first to receive an NSF GRFP in the department and was publishing multiple papers a year. They simply didn't know what to make of me anymore. I think a decent amount of my time in the last decade was driven by spite. 10/

People kept telling me I wasn't capable. But I also wanted access and desperately wanted to continue to learn. If I'm really honest with myself, I was mostly driven by fear. To keep pushing myself at all hours, I would go to subreddits like AskAcademia, 11/

read about students struggling, seeing people slowly pushed out, and would internalize it so I could use that momentum to stay. Even when the professors started to quiet down about me being there, life continued to be a struggle. 12/

I tried following all the advice given, pull yourself up by your bootstraps, but medical issues I happened to mention (if ever) were dismissed as not a big deal or that I was exaggerating. I almost never took off time even when I was in constant pain, 13/

except when I got pneumonia in my first term of grad school and strep throat at the end of that year. I remember making $11,000 a year, with a contract that forbid us from taking outside work, and also didn't provide us with insurance. 14/

I looked into Medicaid and since I made so little money, I qualified for immediate enrollment instead of having to wait until the fall. A safety net! So, it was disheartening to learn that several of my prescriptions were not covered due to "age restrictions". 15/

When I brought up that I had 15 years of documentation of them working, they told me, "If it really means that much to you, you'll have to take them to court." That was one of only a handful of times I broke down & cried as I realized just how broken everything was.16/

Pulling myself up by my bootstraps only got me so far, because the safety nets were full of holes. So, I took out more unsubsidized student loans to cover private insurance. Even after the $3,000 in premiums, it was still $500+ a month in medication, 17/

copays, and other therapy that simply wasn't covered. I became the free food person, finding every opportunity just so I could stave off more debt. For a while, it seemed like this struggle payed off in the long run. 18/

I got external funding, deferred it to use as a bargaining chip when applying for PhD programs, and got into a great program that gave me the freedom to study what I wanted. And the insurance was the best I've ever had and probably ever will. 19/

It wasn't that there weren't problems, but I finally felt I had more solid footing to manage them. I thought I'd finally made it. Then COVID happened. I got it in March 2020 before the mask mandates and my world slowly started to fall apart. 20/

I wouldn't be diagnosed for another 10 months, and in that time, I felt like I was slowly losing my mind. Eventually, I became bed-bound. Things became too strained with my advisor, which I understand. 21/

I didn't know what was happening to me and my attempts to fix it through exercise only exacerbated things until I was collapsing. Everything I said sounded like an excuse as I desperately tried to grasp why my brain was failing. It became too much and we parted ways. 22/

I still wonder if, had I known what was going on and how to fix it, could I have salvaged things? Now I'm facing a possibility of being bed-bound for a long period of time. 23/

I'm locked out of the long hauler clinics in my area as I wasn't able to get access to testing in March 2020. At the time, testing was only available if you were hospitalized. With my diagnosis, I was able to get some help to stabilize my health in an attempt to keep working. 24/

However, I’m not improving, my doctors are running out of options, and there's no time to get better. I'll lose my fellowship if I leave, as well as my insurance, and I'm less than a year away from finishing my PhD. 25/

The disheartening part is now that I'm starting to reach out about postdocs, I'm realizing being bed-bound is a deal breaker for many. It doesn't matter that I am fully computational and can work while lying down. 26/

I've published 5 papers in the last 12 months in this state, 3 as primary author. I have helped several different labs during this time, from bed, on methodology that has fundamentally changed how they analyze their data, 27/

changed the outcome of their results, and will continue to be used in the future. And I constantly get remarks of how sad they are to lose me from academia, as if it was already decided. It simply feels like thoughts and prayers. 28/

There was a tweet the other week from a professor, with a picture of them working remotely from their backyard, talking about how academia is the best job in the world. And when there was some push back that academia could be toxic, the response was that it was a hard job. 29/

Only people who could handle and love that hard job should stay. The thing that hurts the most about this is I do love the work I do. I'm ok with it being hard. That's why I went overboard and said yes to so many projects. 30/

That's why I published 20 papers in just under 10 years as a student, with 10 of the papers being primary author. That's why I applied to so many funding opportunities & received just over $500,000. I wanted to prove that yes I could do it. But Ive realized it simply isn't enough

I will finish this PhD. I haven't spent 17 years in college as a first gen student, house cleaning, going to night school part time, slowly crawling my way up to stop a few months before I reach this terminal degree. 32/

And I’ve glossed over so many events that pushed other people out and nearly pushed me out. It’s too much to keep reliving them. I guess somehow, despite everything that’s happened, I'm still sad that this is likely the end of my journey in academia. 33/

I knew I would likely not be able to become a professor, but I had always hoped I could continue to a postdoc and be a staff scientist. I thought I could continue to help improve analyzing data and help students navigate the crazy process that is academia. 34/

I want to push back. I want to stay, I'm just not sure I have the strength anymore. I’m just so tired.
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Thank you so much to the anonymous author for sharing their story.
/35 Fin.