Facebook has done a lot of evil.

But it is the primary way a lot of rare disease patients communicate with each other (true for my two truly rare conditions).

I have a couple people’s email addresses/Twitter accounts, but it would really suck to lose those communities.
Not to mention the tremendous amounts of labor some people in our communities have put into educational resources, article sharing (not everyone can easily find academic articles!), healthcare provider lists, etc.

Even if we rebuild elsewhere, it is a lot of work.
Fb was also my first connection to the local disability community (through a local queer spoonshare group), which has been lite-changing. Although I’m grateful to now know some other people through Twitter and IRL, this isn’t something easily replaced.
*life-changing

(argh, typos!)

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More from @taracdennehy

4 Oct
Thought I was maintaining my SpO2 well enough to spend a little time off BiPAP but apparently nope.

Was wondering why I felt dizzy & awful so checked my oximeter and was satting *just* above the alarm threshold. So much for my to-do list.
Got to hang out in a zero gravity position with my lovely little breathing machine until I can human a bit better.
To be fair, I was late taking my AM meds. I’ll try to human again once the prednisone has had more time to work.
Read 5 tweets
4 Oct
Hey psych of religion and persuasion/social influence researchers of #AcademicTwitter & #PsychTwitter! Can you recommend some (good, evidence-based) further readings for a motivated community college student?

Topic/questions here & in next QT:
Additional topic foci (and one more below in thread):
Oh, and why I asked for “psych of religion” folks!
Read 4 tweets
3 Oct
#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).

🧵 Photo from September 2020 o...
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. Graphic of two diagrams/ill...
Read 15 tweets
27 Jun
@DisInGradSchool I’m going to respond as a postdoc and say that I’ve witnessed this go multiple ways.

I have (as an instructor) reached out privately to a few undergrad students in my classes. The overwhelming response was gratitude someone cared… [Large R1.]
@DisInGradSchool In one instance, I called the counseling center (on my cell phone, with the student sitting with me, with their full consent/at their request) and said they needed to be seen. The counseling center was notorious for extremely long wait times and my call bumped them up the queue.
@DisInGradSchool That said, as a *trainee,* I have witnessed faculty members blame students’ responses to actual structural issues/inequity/mistreatment on trainees’ mental health. And this just makes me sick and furious.
Read 7 tweets
27 Jun
You are all amazing.

In 24 hours, my GoFundMe is over 1/3 of the way to its goal. (Slightly further even than it shows, due to s handful of donations via PayPal and Ko-fi. I need to figure out how to update it to reflect this progress.)
I’m… speechless. I haven’t been able to keep up with my notifications. Or respond to the lovely messages of support.

It has been very easy to feel hopeless lately, with how sick I’ve been, but you all give me hope.
I’ve tried to at least skim the replies, messages, and QTs, and there are a few thing I want to highlight.

The thread apparently struck a chord. Academic precarity/contingency has a lot of negative & far-reaching consequences.
Read 9 tweets
26 Jun
My academic TL is *thrilled to announce* that they are starting amazing new positions, winning awards, publishing papers, presenting at conferences...

In applying for disability I’m realizing just how badly my attempted career in academia has screwed me over.

#DisabledinSTEM 🧵
I’ve been absent on Twitter (& DMs & email) lately because all of my energy has just been going to trying to survive.

But it is absolutely incredible just how badly the nature of grad & precarious academic contracts harm disabled and chronically ill academics
I did my PhD at @UMassAmherst. The Commonwealth of MA does not pay into Social Security for its employees. But because I left and did not become disabled *to the point of needing to completely work* while I was there, I have no disability coverage from MA. And no SSDI credits.
Read 28 tweets

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