Thread by @HLockeSTEM, As someone who has struggled w/ her health for years & recently [...]

As someone who has struggled w/ her health for years & recently *finally* got a diagnosis for a chronic connective tissue disorder after I got so sick I couldn’t walk or sit up, I’ve been dealing w/ well intentioned but frustrating responses from friends & fellow academics: a

Before I start, I want to say that I realize now that I’ve probably said a lot of ableist / condescending /dismissive comments to people with invisible disorders in the past—-my intentions do not matter, I probably harmed ppl. My intent w/ this thread is help others avoid this.

I’ll start by saying that I’ve been on and off sick (with increasing frequency and severity) for exactly a decade. it took losing my ability to walk at the end of May & being in intense constant chest pain to finally get a diagnosis and proper meds which is a HUGE RELIEF

(Side note: Thanks to meds, the fluid around my heart is gone & I’m walking (albeit shorter distances and times) again with minimal pain. I’m still building up stamina to basic things aka standing while cooking, sitting up for hours at a desk, etc, but the progress is impressive)

It’s been really eye opening for me: suddenly, my PhD is just not that important anymore. It’s not that I don’t love science and don’t love teaching, but health and family definitely come first

(In case people see this and think I’m a terrible researcher/grad student: I’VE MAINTAINED RESEARCH DURING THIS MEDICAL EVENT. thanks to my family helping me, I’ve got experiments up & running & I’m now managing to do several hours of computer work a day #bossbitch #incredible )

getting super sick, a diagnosis, and dealing with the shift in my life has exposed me to some social interactions that are frustrating, even if the intentions are good. People don’t realize how their words come off. Here are some things to avoid & what to say instead:

1) “Look at it like a vacation! You’re getting some time off work, just not in the way you expected” (said to me when I medically crashed at the end of May)

Um, no. It wasn’t *enjoyable*, I wasn’t *relaxing* I was in a lot of pain.

Try: “oof, I really hope the rest helps”

2) “just focus on at home work instead: manuscript edits, data analysis, etc”

When someone is really sick, it doesn’t matter if they are physically in the lab or at home——they are sick and need time OFF.

Try: “work is secondary. What work can I do so that you don’t have to?”

(Also: some ppl offered to help but it didn’t change anything bc it’s only stuff I can do: writing my first author manuscript, analysis, etc so if you are in a position of power, consider offering a massive extension like “why don’t we table this until August so you can heal?”)

3) “Maybe this is your body’s way of telling you to slow down”

NO, KAREN. This is my body producing 40x the amount of antibodies it should, eating it’s own connective tissue and yeeting heart function out the window.

Try: “whew, your body is going through a lot”.

4) “just take it day by day :) and stay positive”

Me being realistic about my symptoms isn’t me not being positive. I’m optimistic about my future, but it doesn’t mean I won’t be honest about my symptoms.

Try: “it’s great that you’re still so optimistic despite the challenges”

5) **silence**

Some peers my age get uncomfortable talking about this stuff because it reminds them that we aren’t infallible & immortal, so they avoid me. Older colleagues don’t do this.

Try: “I didn’t know what to say, but I want to let you know that I’m thinking of you”

6) “this makes me so sad / stressed / worried for you”

I’ve actually ended up comforting a lot of people in the past 6 weeks LOL.

Try: “how are you emotionally processing this?”

(My answer: surprisingly well! I find a diagnosis relieving and empowering)

7) “You don’t sound / look sick”

don’t ask for me to perform for you. A) I’ve had years of practice of pushing through terrible symptoms and self managing pain B) do you think you know better than my doctors? Nah C) invisible disabilities exist

Try: walking the eff away

There are more but those are the main ones! Basically, listen first, ask yourself if the comment you’re about to make is centering their comfort or yours (

), ask if you are being equitable, and ask if you are enforcing toxic positivity into a conversation. That’s it! Fin!

WHEW. Y’all have blown me away with your empathy and your personal stories. Thank you for sharing your perspectives and experiences. I hope this thread helps us navigate productive convos with friends, family, and colleagues

I’m still working on these skills myself!

I have nothing personal to promote, but I just wanted to acknowledge that sexism and racism shape time-to-diagnosis for rare disorders AND treatment of said disorders. If it was hard for me, it’s probably 100x harder for others. https://www.bbc.com/future/article/20180523-how-gender-bias-affects-your-healthcare

'Everybody was telling me there was nothing wrong'

Women are more likely to wait longer for a health diagnosis and to be told it’s ‘all in their heads’. That can be lethal: diagnostic errors cause 40,000-80,000 deaths in the US alone.

https://www.bbc.com/future/article/20180523-how-gender-bias-affects-your-healthcare

Latest Threads Unrolled: