Ibs-qveen - Chronic Illness

Having conditions affecting the digestive and excretory systems is just so isolating.

Because even in semi-disability-aware spaces, talking about symptoms relating to the GI and excretory systems is still treated as TMI, as gross.

Even friends and family members are grossed out just seeing us put laxative in our water, or run to the bathroom all the time, or sit weirdly because of an immensely painful gas bubble.

And we internalize this shame so much that when we actually have to describe our symptoms in a medical setting, we hold back, and use euphemisms, because we're so used to having to do so.

It's so so isolating.

When a chronically ill or disabled person gets their lab tests back as “normal” or all clear, we aren’t sad because we WANT to be sick.

We’re sad because we *know* there’s something wrong with us, yet the scans still stay clear.

Before you kill the monster you gotta know its name.

This is very important...

It's too hot to exist. 🥵

Stay safe, SpoonieStrong fam. 💙🥄

May is a HUGE spoonie awareness month! 💙🥄

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

If they claim they can cure your condition that you have been told is incurable, run. If they claim they cured themselves, run. If they claim they have cured everything from cancer to lupus holistically, run. If they claim you have to buy only supplements from them, run. If they claim they that only thing that will cure is x but x costs tons of money, run. If they refuse to run tests or address your diagnosed conditions before insisting you do an expensive treatment not covered by insurence, run. If they offer a one size fits all treatment/cure, run.

I have been scammed by "holistic" and "naturalistic" people before as a chronically ill person. In fact it was an actual doctor who went to medical school who scammed me for years. So watch out. If it seems too good to be true it probably is.

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.