Do not assume that if you're in pain, doctors will help you or care. Do not assume every illness or pain condition has effective treatment or cure. Do not assume people who don't get effective treatment are at fault for that & you'd be different and figure it out if it were you. I've gone into appointments and the ER crying in pain, having diagnosed illnesses and conditions, and left with nothing or some off-label antidepressant that does nothing or I don't tolerate. If you keep trying to get help, they just refer you to psych. None of that is unusual.

TMJ isn't always "just" jaw pain. This condition has ruined most of my remaining quality of life. I have to puree my meals, limit my talking, deal with level 7-10 pain regularly with no pain management offered, PT just flares me, dentists scammed me on useless, painful splints. Because TMJ disorders primarily impact females and AFABs, it's yet another chronic illness I have that is willfully neglected, gaslit, and intentionally under-researched. It's bullshit and we URGENTLY need more awareness and funding toward these conditions.

Saying goodbye to our car today. It's gotten in bad shape because of the pandemic. Exposure risks to repair, maintain, wash, get gas. Barely used since there's nowhere safe to go, was keeping for appts and emergencies but it kept breaking down. Another piece of my life is gone. It was nice to have the possibility of going places, even on drives around town, but the last couple times were honestly just depressing and when I tried to get out of the car to see the water or go on a trail, there were maskless people around. Still, now I feel totally trapped.

Don’t give chronically ill and disabled people unsolicited medical advice. Just fucking don’t. It’s condescending, invalidating, and can be triggering and harmful in a bunch of ways. Especially don’t do this after we’ve trusted you to share details about our conditions or what we’re struggling with. That is NOT an open invitation to give advice or try to “fix” it. If you can’t hold space for us, say it, don’t push it away with random solutions you think of.

Almost no one in my life cares what's happening with COVID or to me. I've lost almost everything. I'm fighting for my life. And when I talk about it, post petitions, ask for support, it's fucking crickets. Like I don't matter or exist. They're enabling eugenics and I'm done. There's a genocide in plain sight and disabled folks are begging for help but we're being erased, attacked, or ignored. It's horrific and inexcusable and all these liberal social justice people who should care and fight for us just ignore us TOO. What the actual fuck is this.

Are any major disability rights or civil rights groups taking up causes like mask mandates being dropped (esp in healthcare) and the systemic neglect and killing of high risk & disabled people during this pandemic? Cause I'm not seeing it. It's all activists and grassroots orgs. It's really horrifying to me, this silence from even major disability orgs, the past few years. Not only silence, but a lot of them have been holding in-person maskless conferences etc. We need numbers, we need organizing, we need funding, and it's nowhere to be found.

I’m honestly jealous of the privilege it takes to have never had chronic pain, illness, disability and believe you’re invulnerable, the worst case can’t possibly happen to you, and if it does, you’ll ultimately be fine and there’s help.

I lost that illusion a long time ago. Unfortunately, that entitlement and superiority people feel over those of us who are chronically ill and/or have gotten long COVID is perpetuating all of this so I’m more angry about it than jealous these days. It’s harming me, loved ones, the community, and ultimately everyone.

The phrase "hostile apathy" came into my mind earlier, thinking about how people used to care at least a little about COVID precautions and high risk folks. Now we get attacked in the form of: "I can't care about this FOREVER! What can we do? Stop talking about it. Get over it." Of course, some people go with: "It's over. It's the flu. It's not a problem anymore." That's COVID denial and minimizing. But the people who are aware it's still a problem are often hopeless and apathetic in a confrontational, angry way that attacks anyone who does still care.