When I was 16 I developed a foot infection that necessitated surgery.

It was done under local anesthesia - only the anesthetic didn’t work.

I screamed and begged them to stop - but I was held down and called “hysterical”. Told to “calm down” and that it was “all in my head.”

I was restrained, belittled and repeatedly told to quiet down. I was given a sedative that did absolutely nothing.

I remember leaving the hospital in tears - clutching the small handful of pain meds they had deigned to give me.

I began questioning myself. Maybe it didn’t hurt that much? Maybe I was just squeamish and overreacting?

After all - THEY were the experts and they all told me that there was absolutely “no way” I could feel the scalpel cutting me.

The foot became infected - and I had to go back for THREE revision surgeries. I was so young that I didn’t know HOW to advocate for myself. I didn’t understand I could request a different doctor. I hadn’t yet learned to trust my gut.

Every surgery was the same - with local anesthetic not working the way it should. Not ONCE did anyone stop to consider that maybe I was telling the truth. Or to ask WHY an otherwise healthy 16 year old was having so many complications.

It was a huge missed opportunity - diagnostically speaking. The lack of reaction to local anesthetic is a common feature of EDS - as is poor wound healing. The blood pooling and neuropathy were early signs of POTS. Both were missed because all they saw was a young female and assumed I was “hysterical.”

That infection ended up ruining an entire summer for me. I needed IV antibiotics and home nursing to come and pack and re-pack it. I was in a wheelchair for a month and crutches for almost 6 months after that.

Unfortunately - the experience took more than a summer away from me. It took my innocence. From what point onward I no longer believed that the hospital was a place to go to “better”. I didn’t trust healthcare workers the way I did before. I was guarded, traumatized and angry.

Decades later I would learn that the surgeon who operated lost her medical license after being caught not washing hands or sterilizing instruments before procedures.

She was PURPOSEFULLY negligent with multiple patients - but it took years for anything to be done about it.

How many others were hurt like me? Did she treat other minors? Disabled patients? Could I have done anything to stop her?

These questions haunt me to this day - because I suffered so much and it was completely preventable.

This isn’t a unique story. Patients are taught that doctors know best. The culture of medicine encourages silence. We are dissuaded from speaking up or questioning authority.

medical school tends to reward those who “fall in line”… you don’t get ahead by rocking the boat.

If you’re disabled or have complex chronic illness - odds are you’ve got at LEAST one horror story of your own. Probably far more than one.

We have to interact with the system more than our non disabled peers - and we’re often treated worse by default.

This experience was only the first of many. It wasn’t even the most damaging thing that I’ve been through.

It’s events like this that made be become an advocate. I’m so disgusted by how I’ve been treated that I refuse to be silent anymore.

Because it isn’t just about ME. This is a problem the world over - and disabled people are the canaries in the coal mine. We often get the worst of the medical mistreatment - but no one is immune.

We need to change the system to a more understanding and collaborative one.

Patients deserve to be partners in their care. They should be treated like the experts they are. We may not have a medical degree but no one knows our body better.

Listen to us. Believe us. Don’t intentionally cause harm. Wear a mask - show us you care about keeping us safe.

For more on the lessons I’ve learned over years of interacting with the healthcare system - I’ve written a five part guide designed to make the hospital experience easier on disabled and chronically ill people (and those who love them).

All the articles are in this round up I just posted today:

https://www.disabledginger.com/p/a-five-part-guide-to-accessing-healthcare

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