HELP! Autistic and arthritis

nellooo

Hello, I'd really appreciate any advice from people who are autistic and living with rheumatoid arthritis.

For me, I've never had much pain in my affected joints (whilst feeling terrible in a more generalised way) and I believe this is disjuncture is fairly common in people with neurodivergence due to differences with pain processing and introception… I have raised this issue with my clinicians many times but all of them have seemed evasive on the issue.

For example, when I was examined prior to being approved for biologic treatment - as in my condition was deemed abnormally severe - I had no painful joints, my raised CRP levels were minimal and I had little in the way of swollen joints. When the ultrasound technician looked at my wrists she said I had some of the worst inflammation she'd ever seen. This got me through the biologics clinic.

But, a year later, I am currently feeling totally uncared for — and none of my protests about how unreliable the swollen joints method is are being heard. I recently tried to get my routine blood tests done (after being asked to do so) only to be rudely told that due to the hacking of blood test centres datas, my hospital is no longer using bloods to monitor RA health …. at all …. ??

I have been left feeling totally uncared for - I've tried to advocate for myself re: being autistic, but it has fallen on totally deaf ears - over multiple consultants. I would be interested if there was any research into best practice for autistic people with RA (or even people who don't process pain atypically). I'm really struggling with my current healthcare provider, I know the NHS is in a bad way, but the last time I interacted with my RA department I was scolded for trying to access a routine blood test that i had been scheduled to have ("even some people in ICU cant access blood tests at the moment" ?!?). I'm already struggling so much with my treatment and pain and mobility and generally trying to live whilst autistic with RA - and I feel like every interaction with my healthcare provider has become a battle…. Any advice really appreciated. Thank you.

PeterJ

Hello @nellooo sorry to hear that you are having problems with your healthcare providers and I feel your frustration. At Versus Arthritis we don't have anything specifically on autism but you are not the only member with it - I did a search and the following might be worth looking at to see if there is anyone else who has had this experience.

https://community.versusarthritis.org/search?domain=all_content&query=autism&sort=-dateInserted&scope=site&source=community

Hope this helps in some way,

Best wishes

Peter