The Struggle Of Being Undiagnosed

[@justinhastourettes1725]

Very good video Romy

[@liamodonovan6610]

Glad you got the right diagnosis you deserve to know and understand the condition that affects you and somany others your awesome as you are sweetheart

[@liamdacre1818]

It’s important to get the right diagnosis because a wrong diagnosis is just as bad if not worse than no diagnosis. I agree that having no diagnosis doesn’t make you any less valid than anyone else and I wished that the world was more understanding and less stereotypical. I enjoyed watching the video

[@burgundyglidewell2831]

I've had so many imaging tests done, so much blood work done and I'm living in pain with no diagnosis at all. I've been scheduled for surgery for something I don't have, I've been to countless doctors, I've had my heart chemically stopped and told it was anxiety and I was put on Valium. I feel crazy. It's awful.

[@evahometx100]

I have a neurologist appt for April 2024😮 long time to wait. One wanted to try Botox for my facial eye tics. I dont want to.

[@aellaaskew4263]

Due to the the medical system being designed for profit and not patients, the focus has never been properly centered. Atleast that's us in the US. In the UK as far as I can tell yall have a poorly managed system still based on the structures of capitalism but with a socialist bandaid. As for being undiagnosed I love that you point out that at some point we all are undiagnosed, the medical gaslighting and struggles for validity one faces in a culture of credentialism. I'd like to add that we also face an uphill battle with "hills" that are as they say "gate-kept" from us. Even harder still for some is having to discover their gates first, then having to break them down before battling uphill. The gatekeepers of information are our doctors and people who hold their knowledge as sacred who hold this knowledge from us because they paid for higher education to become a doctor so to must we pay for their services as a patient. This knowledge is gatekept behind a transaction, that makes this inaccessible to large swaths of humanity. It's not freely shared. If the world was more of an open source style with sharing of health knowledge and less with gatekeeping for personal gains and profits, society as a whole, the undiagnosed and Healthcare in general would be able to communicate better at the very least. I feel there is so much, like you were saying, that is valid- that is missed.

[@zag5434]

As someone else with “PANDAS” It really shouldn’t be called that. It should just be called autoimmune basal ganglia encephalitis. It’s not only more accurate, but it doesn’t shut out people who are older and get the same disease. I was diagnosed when I was 8, and now that I’m 21 according to the name I don’t have it anymore.

[@passaggioalivello]

Hi, thank you for this video. In my country, mental health has poor consideration. Getting legal recognition is a bureaucratic nightmare. They try to deny any form o disability. Despite my level 2 autism, I'm still legally undiagnosed, so I can't have the help I need.

[@triton_cwbm1056]

Hey do you still have breathing tics ??

[@ChronicAdvocate]

Not anymore thankfully 🌟