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1. I’ve presented Pick of the Week on Radio 4, made audiences of thousands laugh & cry at my poems, won competitions for communicating my PhD research in public & broadcast the news for years-
but I’m scared that one day I’ll die because I can’t get doctors to hear me
but I’m scared that one day I’ll die because I can’t get doctors to hear me
2. I can’t convey pain in a way they understand, answer questions in the way they want- & when they start prodding me or using tools (like blood pressure monitors) I shutdown
This isn’t dramatic. I just seem stoic & a bit sarcastic in that mode
#AutisticNortherner
This isn’t dramatic. I just seem stoic & a bit sarcastic in that mode
#AutisticNortherner
3. I have been baffled by how anyone gets diagnosed with anything-but now realise it’s a translation problem
(thanks to brilliant work like this important podcast on @spacedoutsmiles’s medical experience https://www.bbc.co.uk/programmes/p09g1jmz)
Usually I avoid healthcare
(thanks to brilliant work like this important podcast on @spacedoutsmiles’s medical experience https://www.bbc.co.uk/programmes/p09g1jmz)
Usually I avoid healthcare
4. So am currently struggling with probable unmanaged asthma (& possible Long Covid)
Read the radio news once while suffering what turned out to be pleurisy. & the night after I’d been assaulted by a nightclub bouncer.
Had bulimia for years, untreated (over now)
Read the radio news once while suffering what turned out to be pleurisy. & the night after I’d been assaulted by a nightclub bouncer.
Had bulimia for years, untreated (over now)
5. It’s not that I actually am stoic. I try mention stuff to medics. But it’s like I’m a ghost, despite normally being so audible
I thought them not hearing me meant my issues weren’t important.
Now I realise I needed a translator. I don’t recognisably perform pain
I thought them not hearing me meant my issues weren’t important.
Now I realise I needed a translator. I don’t recognisably perform pain
6. Autistic people have average mortality of 54. Poor, hard-to-access healthcare plays a big part in this.
I never talk about how a big part of seeking diagnosis at 42 was an instinct that as I got older I’d need to be able to confront this somehow
I never talk about how a big part of seeking diagnosis at 42 was an instinct that as I got older I’d need to be able to confront this somehow
7. Both my parents died in their sixties of lung stuff. Mine have issues I reckon & Covid didn’t help.
This week I rang @asthmauk’s helpline & spoke to their brilliant nurses.
They told me to get urgent GP appointment & told me exactly what to ask for
This week I rang @asthmauk’s helpline & spoke to their brilliant nurses.
They told me to get urgent GP appointment & told me exactly what to ask for
8. Then to keep asking when I didn’t get it (cos of an in-person appointment where “seeming fine” while battling sensory overwhelm in the surgery meant, as usual, I wasn’t taken seriously).
I didn’t used to know I needed help or how to ask for it
I didn’t used to know I needed help or how to ask for it
9. Despite all my privileged knowledge (about how the world works etc), it’s taken me YEARS to work out I could & should get help from a...helpline.
& to understand that medics weren’t really understanding me
& to understand that medics weren’t really understanding me
10. Feel this is a bit of a ramble. But I was so struck by Jamie’s podcast & how @AutisticDoctor pointed out there’s loads of autistic healthcare pros who could help with this translation work-if it wasn’t for the stigma of “coming out” as autistic
11. I wanted to at least start talking about part of my own experience I usually avoid
(Now in process of getting asthma diagnosis & magic pills are clearing three weeks of chest tightness/inflammation-thanks @asthmauk)
(Now in process of getting asthma diagnosis & magic pills are clearing three weeks of chest tightness/inflammation-thanks @asthmauk)
