People with invisible disabilities like me are routinely disbelieved — and it can have long-lasting effects (mentions ME)

[Sean]

People with invisible disabilities like me are routinely disbelieved — and it can have long-lasting effects

https://www.abc.net.au/news/2022-11-30/invisible-disabilities-routinely-disbelieved/101420680

I guess I can sort of see why some people mightn't believe I'm disabled.

When I'm out in public, you'll see an average, unremarkable guy. I could be slouching or a little slow to respond, but that's about it.

What you won't see is what's going on inside my body.

You won't feel the aches and pains permanently embedded in my muscles, the brain fog so thick at times I need to read something five or six times before it sinks in, or the exhaustion so persistent I've forgotten what it's actually like to wake up feeling refreshed.

You won't know I've meticulously planned my day because any spontaneous activity I haven't budgeted for risks sending me into bed for a week or more.

But just because those things aren't immediately visible, it doesn't mean they're not there or don't happen.

 

[ToneAl]

I agree Sean, I have a invisible disability of autism. I have had big troubles with doctors through the years. Especially one time a neurologist tried to diagnose me with conversion disorder based on my father inlaw passed away. He was so ignorant and wrong and didn't know nothing about autism

 

[RedFox]

I agree Sean, I have a invisible disability of autism. I have had big troubles with doctors through the years. Especially one time a neurologist tried to diagnose me with conversion disorder based on my father inlaw passed away. He was so ignorant and wrong and didn't know nothing about autism

I have trouble communicating with doctors as well. Also, when I told one neurologist I applied for disability, he expressed doubts I'd get approved because he claimed they rarely awarded it to young people. I got approved. For autism. They decided I became disabled when I was 21. On a date before my ME onset.

 

[DokaGirl]

I agree Sean, I have a invisible disability of autism. I have had big troubles with doctors through the years. Especially one time a neurologist tried to diagnose me with conversion disorder based on my father inlaw passed away. He was so ignorant and wrong and didn't know nothing about autism

I had a somewhat similar experience. Many years ago, when at the emergency ward, my treatment for a very real physical problem was derailed for a time.

It was starting to look like my physical problem was going to be dismissed, because a relative had recently passed away, and the staff were blaming my problem on stress.

I did finally receive the treatment I needed.

 

[ToneAl]

I wonder how much bias there is in diagnosis and how much misdiagnosis because of it.

 

[RedFox]

I wonder how much bias there is in diagnosis and how much misdiagnosis because of it.

I've never seen research about this. It would be hard to fund/publish because the results would shock people and be highly controversial.

But imagine if we could follow a large cohort, and carefully track their symptoms and what conditions those symptoms are attributed to over time. Perhaps giving them workups from doctors critical of psychosomatic medicine. The numbers could be scary. Like what if 5% of people in the general population experience, at some point, a medical condition that's initially diagnosed as mental or minor.

 

[ToneAl]

Redfox how did you react to your autism diagnosis To me it was a relief but also angry because it should have been diagnosed earli

 

[ToneAl]

I've never seen research about this. It would be hard to fund/publish because the results would shock people and be highly controversial.

But imagine if we could follow a large cohort, and carefully track their symptoms and what conditions those symptoms are attributed to over time. Perhaps giving them workups from doctors critical of psychosomatic medicine. The numbers could be scary. Like what if 5% of people in the general population experience, at some point, a medical condition that's initially diagnosed as mental or minor.

I suppose we will never find out because doctors want to protect their image and stature. Plus you may have to a have long period of time to v track patients and medical records can be fractured