Jameela Jamil shares she has rare syndrome

[milotic2]

Jameela Jamil posts honest video about living with rare medical condition, Ehlers-Danlos Syndrome (EDS).

"It is a serious condition and affects every part of your body and your mind and it is a dangerous thing to have if you don’t know you have it." pic.twitter.com/Hj0AS3xmqw
- Etalk (@etalkCTV) December 29, 2022
The actress posted a video to talk

Comments

[hiimtish]

Alrighty when she gonna figure out that the link between EDS & ASD is stronggggg and she should look into that too👀

Saying as a fellow bendy, chronically ill oversharer

But for real very glad she speaking about this. I’ve already had a friend tell me they saw her TikTok about it and learned a bit more :)

[mnemo_syne]

What's ASD?

[dropdeadpirate]

Autism spectrum disorder

[hiimtish]

Autism Spectrum Disorder.

EDS groups don’t talk much about the link (bc ableism😤) but everyone I know with EDS IRL is also Autistic. I got my ASD diagnosis just months after my EDS one.

[__onthebound]

"We're born with this and will never be free:" Five patients with a mysterious medical condition explain what it feels like https://t.co/Nbm6AY5AIx pic.twitter.com/j3zUh6AFCv
- CNN (@CNN) December 25, 2022

I have EDS. It's deeply painful, it never stops. I have nothing to show people, but I cry myself to sleep at least once a week. I'm trying to get into a pain clinic again, but there is no cure. I will be in this never ending always increasing levels of pain and fatigue until I die. I struggle with binge eating because my organs are all stretchy and I feel hungry (but I never feel full). I have dislocated a lot of my body on accident.

[hiimtish]

So many hugs from someone that understands completely. My pain doc was just like “see me when you’re ready for opiates!”. I don’t think people realize there’s literally nothing to be done

[hazypink]

I know that opiates are a whole nother beast but are you open to trying them? Or is that off the table? Just wondering because my parents have suffered with chronic spinal pain and at the end of the day pain management with opiates have been the biggest help.

Please don’t feel like to have to share anything you aren’t comfortable with, I’m just interested in learning more about people living with this disease!

[hiimtish]

It’s just with how young I am & with how high my pain levels already are & it being a degenerative disorder = I’ll be on them for rest of my life. It’ll be a lifetime commitment when I start and having young kids makes that not really viable for now.

I did used to use THC for pain management for a long time which was fucking amazing but developed CHS & basically am now allergic to it. Now I just take Tylenol which was so scary at first but it’s weird the hellish pain your body adjusts to. I’ll definitely be open to opiates as soon as I feel I’m past my limit though!

[skekzok]

means always having people doubt your illness because you look okay

yeah :/

[genbu_no_miko24]

😦

[egalitarianmuse]

My friend has this. EDS is no joke, man.