Read on Twitter
Diagnosis is a privilege. It also takes hard work to get a diagnosis, especially when you have a #RareDisease. It's very common for rare disease patients to wait 10+ years for a diagnosis.
Here's why that matters, and why our health system has to do better. (Thread) (1)
Here's why that matters, and why our health system has to do better. (Thread) (1)
During the 11 years I had undiagnosed #CyclicVomitingSyndrome, I couldn't get formal accommodations at school. I had to just hope that my teachers would understand and give me extensions even though I had no clue why I was vomiting and missing a week of school at a time. (2)
Being undiagnosed is isolating. Sometimes it felt like I was the only one that was going through the random vomiting--because for all I knew, I could've been. When I was finally diagnosed, I got to see that I wasn't alone. Everyone should get to have that experience. (3)
Being undiagnosed changed my relationship with my supposedly healthy body. I didn't see the frequent and debilitating episodes as a chronic illness; I saw them as a personal failure. I thought that I had done something wrong or caused my illness. (4)
Even now, I have to remind myself that my disability is not my fault and that I'm not faking or oversensitive. (5)
Being undiagnosed also eroded my trust in doctors and the medical system. After my past experiences, I don't have much faith that my doctors will catch something that's wrong in the future. In some ways that's good; doctors aren't infallible! But it's also very stressful. (6)
My experience of dynamic disability has shaped who I am in so many ways. So has my undiagnosed experience. The impacts of a long diagnostic wait don't stop when you finally get your diagnosis. (7)
Our medical system needs to do better and work toward shorter diagnostic waits.
Undiagnosed & self-diagnosed disabled people are disabled and are valid.
If someone is undiagnosed, it's not their fault that the medical system is failing them. (End)
#NEISvoid #DisabilityTwitter
Undiagnosed & self-diagnosed disabled people are disabled and are valid.
If someone is undiagnosed, it's not their fault that the medical system is failing them. (End)
#NEISvoid #DisabilityTwitter
