Thread by @taracdennehy

#DEHEMRollCall
Hi, I’m Tara. I’m a multiply disabled social psychologist currently on (extremely extended) unpaid medical leave from my Banting postdoc at UBC.

My life lately has been dominated by the consequences of having severe, refractory relapsing polychondritis (RP).

🧵

Relapsing polychondritis (RP) is an extremely rare autoimmune (& potentially also autoinflammatory) disease that attacks cartilage & cartilage-like tissue throughout the body. I had symptoms for decades but was only diagnosed in 2020.
My RP has caused tracheobronchomalacia (TBM).

What TBM means for me is that my lower trachea and mainstem + subsegmental bronchi collapse when breathing out. My collapse is at 100%, and I now require positive pressure ventilation nearly 24/7. So that means using a BiPAP or ventilator throughout the day & night.

The airway collapse can cause my oxygen saturation (% SpO2) to plummet dramatically and unpredictably.

Additionally my RP attacks anything cartilage & cartilage-like, which causes widespread inflammation, as well as circulatory + neurological issues.

The consequent brain fog & other impacts of my autoimmune diseases on my executive function have been particularly damaging to my academic career.

But because I've retained other high-level abilities + skills it can be impossible to get some people to see/understand this.

One particularly annoying thing is that all of these symptoms respond beautifully to high-dose steroids (like prednisone). On higher doses of pred I feel like I have my brain back. I can also breathe better and walk without pain.

But long-term steroids absolutely wreck you.

Before my health got so much worse I was on-track to be reasonably competitive for an academic job. Now… I’m probably 95% of the way forced out of academia, but I can’t bring myself to let go after everything I’ve sacrificed & invested to get to this point.

My health started to seriously decline toward the end of my PhD (~2016), & that downward trajectory accelerated during my postdoc. I was on partial medical leave throughout 2020 and have been on full-time medical leave for most of 2021. See my pinned 🧵:

https://twitter.com/taracdennehy/status/1408630568812630019?s=20

The extra crappy thing is that I still *love* my research and I would love to keep doing it. I also find deep joy in training students in research. I just unfortunately have very few good days lately and need more time to heal & find autoimmune treatments that work.

As a social psychologist I broadly study stereotyping & prejudice. A lot of this work has focused on both the antecedents and consequences of social identity safety at work, particularly in STEM fields. You can see some of my published work here: scholar.google.com/citations?user…

It is something perhaps adjacent to irony that I have not (yet) extended my research to disability—particularly given my own experiences of discrimination & ableism in the academy—but that is something I hope to remedy if I can return to & remain in academia. [So many ideas!]

Although I managed to try to keep contributing to some projects I was co-author on during my medical leave, others are stalled/paused at various points in the pipeline. The publication gap associated w/my health worsening starting in 2016 is unfortunately quite apparent on my CV.

If academia were more accepting of & understanding of disability and the profound consequences of severe chronic illness, I might be able to see a way back from all this. But—outside of the #AcademicTwitter & #DEHEM communities—my experiences have not been great.

My predominant experience has been of (some) people interpreting my disability-imposed limitations as moral failings, given their seeming incongruency with what skills/abilities I've retained. And treating requests for reasonable disability accommodations as me being difficult.

Anyway, that is my intro 🧵— I guess both for #DEHEM21 / the #DEHEMRollCall as well as a warning to recent new followers ;). My twitter these days is a mix of medical/health updates/venting, disability-related content, thoughts on academia, random musings, and a bit of research.