"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

Post a ficitional character who you think would be an antivaxxer. Hard mode: No villains

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?

⏰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.

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???

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

PPI or #PatientEngagement in research as a commodity or product. Some people see PPI as a way to extract experiences from patient/public partners or just validate their own work without really involving patient/public partners at all .../4

Power and tokenism. Here we talk about how tokenism can emerge in research collaborations or on teams when power and resources are disproportionately concentrated with one party (i.e., usually the academics).../3

The themes about power we discuss are in not ranked or in order of importance and are: ➡️ power and tokenism ➡️ PPI/patient engagement as a commodity or product ➡️ the unstable and changing nature of power ➡️ power between and amongst patient/public partners More on each below .../2

📢 Weekend reading on power dynamics in #PatientEngagement in #Research. Preprint (that means not peer reviewed yet) from our team that includes #PatientPartners and research allies and is about 4 themes concerning power on #PPI teams - osf.io/preprints/os... A bit of a 🧵 for you .../1

Does anyone know if there's an Autistic or autoimmune reason why when you injure yourself it might take about 36 hours for the pain to actually kick in? It makes sense to me as an Autistic sensory processing thing but also it's relatively new for me...

The most helpful self care instruction I've heard is some random instagram reel explaining it as we're all allocated a human to look after during our time on earth. Self care is just doing what's best for your human like you would for a pet you're responsible for.

Showers and the related transitions stress him out a bit so we're going to leave it an extra day, since he's poorly.

A pet human needs nutrition, shelter, rest, bathing, veterinary care, appropriate exercise, a clean and safe enclosure, and appropriate enrichment. Today my pet human can't breathe too well and should be resting somewhere warm with gentle enrichment activities.

Like holy shit have you ever thought about the amount of executive function required to, say, sign up for a pottery class? You got to decide what kind of class. You've got to research who's offering classes. You've got to compare the class times against your day to day requires tasks.

I feel like we need a name for the specific type of neurodivergent trauma where you only learn what your self-care needs are discovering that what everyone else advocates as self-care is disastrously bad for you.

📣 Need a good distraction for 1.5 hours this week? Join this amazing group of people tomorrow to learn more about their experiences in #PatientEngagement in research? if you can't join us live, it will be recorded. 👇 @alexhaagaard.bsky.social @francinebu.bsky.social

Fuck it. Trans folks need MATERIAL SUPPORT. @distributeaid.org is launching an HRT Harm Reduction Toolkit that provides 1 year of medical supplies needed to take injection-based HRT. We were planning to go live in January, but I'm not waiting. Fund the kits here: distributeaid.org/hrt-harm-red...

I’m seeing people applauding RFK Jr for saying “yes” to Long Covid research. Please do NOT applaud this man. Yes it’s a good sign a Republican Senator asked about Covid. But RFK Jr is dangerous, his hires will be dangerous, this will not advance the cause of Long Covid

Hey folks! The #PTPT conference team (including me) wants to know what topics people with #ChronicPain would like the conference to cover in 2025 and beyond. If you've got chronic pain and 5-10 minutes, it would be awesome if you could fill out the survey! forms.office.com/Pages/Respon...

If you feel guilty about stepping away from the news, make the last site you go to before putting the phone down the homepage of a local food pantry. Donate a couple of bucks, whatever you can spare. That will make an immediate, tangible difference in the lives of real people in your community.

Overwhelmed by politics and life? Here’s a quick and easy guide to starting your personal trans microlibrary 🩷 written especially with the ADHD girlies in mind: thetransfemininereview.com/2024/11/17/h...

And when you do reach out, all people will do is send you phone numbers for agencies you've already tried (or haven't tried because you know from experience they won't be there for you and you can't bear leaving one more voicemail begging for help that you know won't be returned)

And chronically ill people look at the stuff talking up local community organizing and more or less know we're not included in that and no one is coming to save us. Partly because no one knows we're here. We get forgotten as we are abandoned. When we're thought of, people assume we must be fine.

It's rare for folks doing local community organizing to ask who's not there and why they're not there. The assumption is "the people who care and who we should care about are here".

I’m so tired of seeing the “grow local community” advice like it’s so easy and those of us who are covid cautious weren’t abandoned years ago.

This is not something that can be put on the people who have been abandoned and isolated to correct. It cannot be made their responsibility to connect or re-connect with those who previously decided it was, for one reason or another, easier not to try.

So when it comes to "grow community locally" stuff, here's something non-Disabled folks especially have to figure out how to counter. There is a long-standing pattern where chronically ill people, even those who previously had extensive support networks and community, are abandoned and isolated.

At least 23 Palestinian child prisoners have been released by Israel as part of Gaza ceasefire deal. But more than 300 minors remain in Israeli custody, many of them without charges. Here's what we know ⤵️ 🔗: aje.io/0x9mb1

Lotta new folks here so I guess it's a good time to plug this webinar! If you want to hear me talk about a bunch of light-hearted shit like temporal accessibility and hermeneutical (in)justice in patient engagement, sign up at the link.

Let's come through with this relatively small amount today to prevent a queer Black woman from being evicted! We cannot allow her to face homelessness again. CashApp: $charlotteirene Paypal: Paypal.me/charlotteirene Venmo: charlotte-irene8

We as chronically ill and /or disabled folks can't deny the fact that we are always in need of other people's help ,even if we avoid being in such position. Things are stonger than we are . (My opinion) #chronicillness #Disability #LGMD

Immensely informative roadmap for Myalgic Encephalomyelitis (ME/CFS). H/T Chydorina of RemissionBiome on Twitter/X. Created by Hip of Phoenix Rising. Good place to start for people with known or suspected ME/CFS and/or Long Covid.

Reminded of and crying about the fact that Rev. Budde is also the person who provided Matthew Shepard's family with a safe haven for their son's remains. This is the person these fascists trying to brand themselves as Christians are targeting with hate, right now. www.npr.org/2018/10/26/6....

Okay so just for shits and giggles I was googling why does celecoxib work so much better than ibuprofen and it turns out it doesn't, it just has a better safety profile for long-term use the reason the ibuprofen was doing fuck-all was that I was taking a miniscule OTC dose. But here's the kicker—