I had two medical appointments and one prescription pickup today and it took about 5 hours in total. Being disabled or chronically ill is like having a full-time job you have to pay to do. And for many of us (myself included), holding an actual full-time job on top of that simply isn’t accessible.

Why hasn’t someone invented a “rent a cis white man to pretend to be your partner to help advocate for you in medical appointments” app yet? This would honestly be a great way for cis white men to use their privilege for good.

If you’ll bend over backward to “rescue” a three-legged dog but can’t be bothered to care about disabled humans (or toss a dime to disability mutual aid) you’re not compassionate, you’re just collecting props.

Trump has chronic venous insufficiency. Get ready for a wave of ableism from the left. 🫠

The worst part of being disabled with a complex medical condition requiring many different specialities, numerous appointments, and many medications every week? Automated clinic, hospital, and pharmacy phone systems. 🫠

In a world that worships productivity, choosing rest is rebellion. Accommodating yourself is resistance. Honoring your limits is power. It’s Disability Pride Month, and I’m proud as fuck of you for taking care of yourself even when the world tells you not to.

In grad school, I was told by my supervisors and professors to ensure that I hid pretty much everything about myself from my patients, including factors relating to my being disabled. 1/

My mom is FINALLY acknowledging that her AFib, brain fog, extreme fatigue, and other health issues that onset after she was sick with COVID almost 2 years ago are actually post covid issues. It only took me telling her this for 2 years and then a single provider at a hospital saying it once. 🫠

One of the most difficult parts of being disabled or chronically ill is realizing that there really isn’t much help out there. From the medical system to the government to your family and social networks, you’re not going to get much care.

Is that patient really “difficult” or do you just suck at your job?

Did you know that the reason most physicians don’t mask is because they are immune to long COVID? Wild, right? It’s just us lowly patients who succumb to it — especially the disposable ones. 🫠

When I was diagnosed with hEDS at Mayo Clinic the geneticist I spoke to said there was nothing that could be done for it. In the 6+ years since, I’ve realized just how wrong that was. What wild, unhelpful, or inaccurate things have you been told by your doctors about your medical condition(s)?

Quit being ableist when trying to insult bigots and eugenicists. You are doing their work for them!

So many people are afraid of getting older, but what’s really at the core of that is ableism. People are afraid of becoming disabled.

I do this radical thing with my patients where I just believe them when they tell me things, and let me tell you… ✨ MAGIC ✨ Highly recommend.

Wearing a mask is an act of community care and, with the current administration, it is an act of resistance. Get that respirator. Wear it. Protect yourself and those around you because the government sure won’t help you if you end up needing it.

I am disabled. I am not a warrior. My body is not a battlefield. How I feel is not a measure of how hard I fight — or don’t. We need to stop romanticizing struggle.

In case anyone still cares this is a war crime m.jpost.com/breaking-new...

Indoor air quality is a disability rights issue. Even wearing scented products can make a space inaccessible to some disabled people. Please be mindful of how the products you use might impact those around you.

FYI that you cannot reliably assess neurotransmitter levels in the brain by testing for them in your urine! Don’t get scammed into taking these tests. Their utility is limited at best. I’m tired of patients getting ripped off by providers pushing pseudoscience

Try not to hold yourself to ableist standards today, okay? You deserve rest.

Why do companies assume disabled people have a medical provider who understands their condition, work functions, possible accommodations, and has the time to write up a letter? Most providers have no idea what to do to help with accommodation requests—they aren’t trained in it.

Did you know that getting groceries delivered might actually be better for the planet than going to pick them up yourself? A study cited in this article discusses how getting items delivered might decrease your carbon footprint relative to driving to the store yourself: npr.org/2024/09/10/nx-…

The stories I hear about other healthcare providers failing and even directly harming patients every week… yikes. Providers need to better. Our lives literally depend on it.

Patients should NOT need advocates to get medical care. Their medical providers should be their advocates, but the system is so broken that patients need to prepare extensively and bring along witnesses just to ensure they don’t get abused or neglected.

Disability tax: Because existing while disabled is a privilege you have to pay for.

Medical gaslighting is the norm, not the exception, especially if you are a woman or BIPOC or if you have a complex or rare disease.

My former boss, who discriminated against me, harassed me, and illegally fired me for being disabled, was the chair of the DEI committee of the largest organization in the field while all of that was occurring.

In this time of overwhelm and intentional chaos, remember what Mr. Rogers taught us—look for the helpers. Look for the ones fighting, the ones pushing forward even when everything feels like it’s falling apart.

Folks… it happened. It FINALLY happened. I went to the doctor and they told me to lose weight, be less stressed, and exercise more and guess what? I walked out of there thin, fit, and with zero problems! The magic of modern medicine ✨

If your version of collective action, organization, or mobilization excludes disabled people then you’re not as progressive as you think.

Dear medical providers: If a patient sees you once and then never returns it is NOT because they have improved. It is more likely because you sucked and they didn’t want to waste any more time, energy, or money on meeting with you. Take it as a lesson and try to do better.

People who aren’t afraid of COVID (specifically long COVID) have no idea how broken the medical system is. They still think a physician will save them if they develop LC and it’s going to take a lot work not to say “I told you so” when reality smacks them in the face

Why isn’t there a moderation service or label for ableist posts/accounts on here?

Next time you have a headache don’t reach for the painkillers… Just meditate your way out of it! Not fun, is it? Now imagine having that pain daily w/no way of controlling it &, when you go to “experts” for help, they tell you to “think” your way out of it. That’s chronic pain.

Reminder as we blaze toward the new year that it’s OK if 2024 was just a blur of pain and chaos instead of a productive era to reflect on. Being alive is particularly rough right now. You’re doing your best and that’s enough.

What if all the money and resources they are putting into searching for the CEO shooter were put into relieving medical debt for families in the US?

The executive functioning drain of being covid cautious is EXTREME and particularly hard if you have ADHD. I’m tired and wish people around me cared more so that I could save even just a tiny bit of that brain energy for other things

Hi friends! I haven’t had many #DisabledInSTEM merch sales this whole year and would appreciate any support! I have A LOT of medical bills coming up. Your support helps me to pay my bills and focus on my advocacy, such as running the Mentorship Program! www.bonfire.com/store/disabl...

Friendly reminder on this holiday that if your family is treating you like shit it is OK to leave or kick them out of your home. Really. Even if they throw a fit. Especially if they throw a fit. Boundaries are important and so is your wellbeing.

Where’s disability Twitter on here please? I see some of you but so many are missing

How do people afford mold remediation? Seriously. We’re just supposed to be able to afford to move to a new house, get rid of all of our furniture and linens and clothes and books, and be able to rebuild? Who can afford that?

I think some of the critiques about Bluesky being insular are fair. Imo right now Disability Twitter isnt here in full, and I wont leave X till they are. But this really just seems like a debate about what social media should be used for. 1/6

What would happen if we stopped praising people for pushing through and started praising people for taking care of themselves and being mindful of their limits?

When you’re disabled managing your health is like a full time job except there are no benefits, no one pays you, and you NEVER get to take a vacation.

I came out as queer to a lone cousin because no one else in my family is safe to tell. First family member I’ve told. It went well! She was kind and supportive. It was no big deal. I just wish I could expect that same support from my immediate family.

It’s so nice to see so many of you from Twitter here! It’s making me want to use this platform more. I’m trying to follow back old mutuals, but please let me know if I missed you. I’m still not great at using this app and find it a bit overwhelming and clunky. 😅

Public health officials wanted it to just be us; They wanted it to only be disabled people who were harmed by covid. They wanted to believe they were somehow better than “us.” Now, they’re joining our ranks as this virus we screamed would harm almost EVERYONE is doing just that.

The ableism in the long covid community is so disheartening and hurtful. We’re trying to welcome you into the disabled community. We get that you’d give anything not to be one of us, but treat us with some damn respect please. We’re trying to help. We’ve been fighting for years.