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)?

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.

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 ✨

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.

If you’re a mental health provider and you don’t share diagnoses with your patients, that’s ableism.
Unless someone is in acute crisis (like active psychosis), there’s no excuse.
Your discomfort with disability isn’t a clinical justification. It’s bias.

You ever wish you could see your pet’s vet for care instead of your doctor?

Yeah… me too. 🫠

I’m neurodivergent but you want to know why I just call myself disabled instead?

Because it captures ALL of my disabilities and because being neurodivergent MEANS being disabled.

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.