Ibs-qveen - Chronic Illness

This is very important...

PSA as we go into spooky season and people start using activated charcoal to make foods look spooky.

i know hearing people on this website love to pass around those posts with links to free sign language lessons but you know you need to actually put effort into learning about Deaf culture, too, right?

friendly reminder you dont need a diagnosis to be in disability spaces, as an example im in constant pain and fatigue, have migraines every week and my joints hurts to a point I can't write, but since familiar gaslighting/medical trauma and the fact that im an indigenous, brown skin fat man a diagnosis is fucking hard (but im in my way! :)) , but i still deserve a safe space to talk about my experiences and to feel valuable and supported.

never feel like youre interrupting someone's space or that you shouldn't be here cause you dont have a diagnosis, disabilities existed before diagnosis

There was a TikTok of an (American) woman who was documenting her husband’s ICU room and expressing displeasure with the state it was in, it was generally unclean with broken equipment, rust stains, clipped flooring, things that can make a medical environment unsafe. I opened the comments expecting people to be like “Wow, that’s scary. And a huge infection risk. ICU stays often cost patients upwards of $100k and not enough of that money is going to maintenance and cleaning.” But instead it was nurses being utterly vile to this woman. Not saying “You’re right, it’s terrible that we’re forced to do our jobs in unsafe, unclean and outdated environments.” they were telling her she was a prime example of why patients’ families were the worst part of their job.

The hospital that charged my insurance $87k for a single endoscopy & colonoscopy performed on me was recently fined for having dirty equipment. If not on sanitation, if not on giving nurses and providers better wages, if not on updating the facility, where the hell did that money go? If nurses could band together to attack and criticize hospital administration and the American medical system in the way they band together to attack and criticize patients and advocates online, all of our lives could improve.

But of course it is easier to raise the sword against the vulnerable person dependent on your care, on the people often experiencing the worst day of their life when they are too frightened and in pain to treat you with courtesy. It’s easier to lash out at the patient inquiring about their medication after waiting two hours than to lash out at the people responsible for making you responsible for 30 patients at once.

I don’t think anyone blames nurses for hospital rooms being nasty. It’s not their job. It’s the job of custodial staff and maintenance. It’s the job of administration to fund those departments. It’s a problem at the top. If we could all look upwards instead of down when it comes to who we criticize and blame, we could make progress.

Useful information

May is a HUGE spoonie awareness month! 💙🥄

#als #lymedisease #lupus #asthma #mentalhealth #cysticfibrosis #arthritis #celiac #huntingtonsdisease #ehlerdanlossyndrome #multiplesclerosis #fibromyalgia #bechets #bpd #stroke #braintumor #mecfs

It's too hot to exist. 🥵

Stay safe, SpoonieStrong fam. 💙🥄