Doctors who refused to help… turns out my disability was just super rare

[sophiebell]

When I was younger a doctor told my mum "Oh it's probably something so rare we'll never find out what it is". She immediately took me back to the GP for a referral to a different hospital which was good because they actually helped figure out what was wrong with me. Some doctors are just the worst honestly and they don't deserve to be doctors.

[lunalovett]

Been in this position too many times. Usually crying though.

[ishfail]

Ughhh, this is literally so real. Been told I don't know HOW many times that I'm not disabled because I'm 17 and my diagnosis (hypermobile Ehler-Danlos Syndrome) 'doesn't exist' like???

[danger_inferno]

I also have a super rare condition that makes me require mobility aids. I can't use most of them due to it affecting my body all over, so we're trying to get me a wheelchair (ambulatory). But this was the pain honestly, until I had my father come into my appointments as a supportive, insistent man to push the doctors. Doctors never believed me until he said something to them. But the constant self-doubt and imposter syndrome I still get even after having a diagnosis, but there are some days my joints dislocate themselves or I faint where I need assistance.

I know I'm late to this but your videos are insanely inspiring as a fellow disabled person ♡ And I'm so happy there is more education going around about rare diseases as well, because mine is also extremely rare! Let alone how bad it is for women or folks assigned female at birth to have medical professionals believe them at all (I'm gender queer so that's why I am not saying women exclusively because it applies to me but I'm not a woman haha)

[gilliancarroll]

They had me doubting myself and thinking they were right about my body over me but then again i was 11 so couldn't have handled it like a pro the way you did ❤

[cerealfreakonline]

Yeah it took me 9 years to finally get diagnosed with CRPS, the most painful medical condition known and in those 9 years I was told I couldn't possibly be in so much pain.

[marie-bernadettebenedict]

Yup been here. Been told painkillers won’t help as it’s all in my head - male doctor

Female doctor looks at my e-ray: IS HE BLIND?!!!

[sadist]

I’ve been in this position for my entire life, to this day they can’t tell me what’s wrong with me. They didn’t diagnose me with anything that should be THIS debilitating. My back wasn’t diagnosed with anything at all, my family doctor does believe me somewhat and has given me proper pain medication which lessens the pain somewhat (fentanyl) but no matter what, they can’t find a source and refuse an MRI.

[katfoster]

Yes, I'll just think positive and suddenly I'll be cured. Obviously.

[vitanavitas]

I saw a guy in Newquay riding one, & jotted down the make.Same one you’re riding.
It’s heartbreaking not being able to find the funding.
Newly subbed 🌼

[КітЛані]

Looks like it’s same in most countries 😢

[NotAPersonPeople]

I have been diagnosed with ADHD for a while now and I went to go get diagnosed with disgraphia and discalcula and dyslexia ect… all the psychologist told us was I had adhd… WELL DUH

[JaneAustenAteMyCat]

Even if something is 'all in your head', aka psychosomatic, it doesn't mean you're faking or that you have any control over it. It often means you've experienced trauma. Some compassion would go a long way

[AvaBunny-ov]

Yes that’s is true but just because a disability is rare or illness is rare doesn’t mean that it’s important to seek the best care

[John-nym]

I have a condition called pots that puts me in a wheelchair was not able to get help for almost 10 years was also told it was in my head but it wasn't finally got a diagnosis I know it can be frustrating but hang in there

[kutura_P]

Ah yes, just walk it’s not that hard. Like how can that person get their medical license when saying this stuff??

[christina.M.]

I have a illness’s that no doctor knows what it is I’m now going to neurology