Alex Haagaard (they/them)

A Brief History of Pain | .CHISARAOKWU. This essay by Black woman writer .CHISARAOKWU. recounts her experience as a patient and physician dealing with undiagnosed pain.

"He pulled out an intake form...
Through clenched teeth I hissed, “I am having 12/10 pain, sir.”
He wrote 2/3 priority category"

Please read this from @chisaraokwu.bsky.social who recounts her experience as a Black patient & physician with undiagnosed pain: www.midnightandindigo.com/brief-histor...

If they only knew how complicated our lives were/ are with all the lifestyle changes we've adopted in order to ease and improve our lives of chronic illness. But they tend to get annoyed every time they do get a glimpse bc we need their help with it.

Everyone: you know, if you just made some lifestyle changes you'd feel a lot better

Chronically ill person *starts using fragrance-free products, going to bed before 9pm and getting groceries delivered*

Everyone: not like that

tfw you start adding a review cycle to your emails and chat messages to add contractions and minor grammar errors so people don't interpret your autism as condescension

Also like...if you ever need to understand what literally all social communication while Autistic is like, just know that I spent about 5 minutes trying to decide whether to describe it as "one piece," "two pieces" or "one piece sliced in two" and I still chose wrong lmao

Post a ficitional character who you think would be an antivaxxer.

Hard mode: No villains

*my friend has also just explained to me that most people would call one piece of chicken that has been sliced in half "two pieces of chicken," even though that is absolutely wild to me because the relevant quantity in question should really be discrete instances of rot / tissue lesion

Moral of the story, kids?

Say "the chicken in my sandwich is rotten"

Not, apparently, "one piece* of the chicken in my sandwich has a large greyish-green patch and I am unsure whether it's safe to eat."

and because, ironically, we are constantly playing 4d chess trying to ensure we aren't misunderstood.

(Why's that ironic, you ask?

Glad you asked!!!

Because the harder we try to make ourselves understood, the less allistic, non-ADHD people seem to understand us 🥲)

How is that algorithmic ableism, you ask?

Glad you asked!!!

See, those of us who are Autistic or ADHD tend to be...very precise when we describe things.

Both because we tend to process the world in a fundamentally different way than most people,

Today in wild algorithmic ableism:

did you know that if you request a refund through certain food delivery apps, they use an algorithm to decide how much you're entitled to based on your initial description of the problem, and the agent can't adjust that to account for basic human logic?

Research Impact and Open science virtual half day. Photos of six panelists.

⏰Free, virtual session on March 20th for all members of the #HealthResearch team.

Learn about writing an effective narrative CV, how to apply #OpenScience principles, and frameworks to measure #ResearchImpact.

Panelist biographies: cihr-irsc.gc.ca/e/54201.html

✅Register: zoom.us/webinar/regi...

[Food, food intolerances]

Follow up post on how I make homemade fermented mustard

Plus techniques I'm using that ~may~ be reducing the histamine content

#NEISvoid
#MCAS

these are the names of young Black men who were "found dead" after the Ferguson uprising following the murder of Michael Brown in 2014. Edward Crawford Jr. is in the famous image below. his death was ruled a suicide.

our gov't is not new to silencing activists. the least we can do is remember them.

This is why you should never, ever follow some random people suggesting the march/protest split up.

I've heard plenty of stories of cop infiltrators doing this and then leading their splinter directly into a kettle.

I’m not familiar with the influencer realm, but I’ve certainly gotten all that from people in the medical system who really fucking ought to know better.

Venn diagram titled "The Impossible Math of Invisible Disability." The circles are labeled Help-seeking, Pacing and Self-advocating. The center is labeled "This doesn't exist."

Or, "Why I never ask for help and let people walk all over me except for the times when I do fight back and then l'm a scary mean Autistic who flies off the handle suddenly for no reason but we'll just set that can of worms aside for now, shall we"

We need a chronically ill version of that 90s photocopier meme where you can choose only 2 of good, fast and cheap.

But it's asking for help, not letting people treat you like shit, and managing your energy.

And like no, you've just set chronically ill people a literally impossible math equation.

It just seems to me like there's a whole lot of "internalized ableism" rhetoric aimed at individualizing the responsibility for coping with systemic ableism and specifically the forms of systemic ableism that tend to be weaponized predominantly against invisibly disabled people 🙃

Chronic illness influencers: you have to learn 😌 pacing 😌

Chronic illness influencers: you have to get comfortable 🌈 advocating for yourself 🌈

Average chronically ill person: advocates for themself

Average chronically ill person: puts themself into a flare because they expended too much energy self-advocating

Chronic illness influencers: you have to get comfortable ✨️ asking for help ✨️

Average chronically ill person: asks for help

Abled people: Who the fuck do you think you are, you attention-seeking piece of shit???

Extremely fucking weird to have your scapula go out and feel like, "oh hey, welcome back you old bastard!"

ngl though i will take the hypermobility pain over the inflammatory pain every. fucking. time.

Tfw you realize the joint inflammation was counterbalancing the joint hypermobility 🥲

Please share your thoughts! We're all hoping to learn from this and to help everyone in this space find ways to more equitably share power in research /end

We also share some recommendations to more equitably share power if you're part of a research team that includes patient and public partners .../7

Power between and amongst patient/public partners. Yes, there are layers of power between and amongst patient/public partners and those in their networks that are important to recognize and be aware of .../6

Unstable and changing nature of power. Peoples' abilities and capacities to engage equally depend on the environment in which the work is happening & economic, cultural, social and symbolic capitals .../5