Jameela Jamil posts honest video about living with rare medical condition

The 'Good Place' star is spreading awareness about Ehlers-Danlos Syndrome (EDS).
December 29, 2022 4:18 p.m. EST
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If there’s one thing we know about Jameela Jamil, she is not one to mince words. The British actress has always taken a firm stance on many issues affecting women, the LGBTQ+ community, and people of colour

Now, The Good Place star is using her platform, and also her great sense of humour, to talk about the rare medical condition she lives with, while encouraging fans with symptoms to see their doctors pronto.

In a direct-to-camera video posted on TikTok and Instagram December 28, Jameela discussed with humour and frankness her life with Ehlers-Danlos Syndrome, or EDS, which, according to Mayo Clinic, is "a group of inherited disorders that affect your connective tissues." She expressed frustration because having such a condition "means always having people doubt your illness and injuries because you look okay."

The video begins with her pulling on her cheek to show just how elastic it is, and reassuring her fans that they’re not seeing some clever filter or camera trick. 

"Hi, look at this, Jesus Christ! This is not an app or filter. It is my face, look at how elastic that is," she began. 

After explaining the condition is due to EDS, she detailed her symptoms, and it turns out to be a long list. "The joints, nothing bends the right way, everything bends the wrong way,” she said, adding that it was very “sexy” indeed.

"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,” she continued. “The way it affects bruising, bleeding, healing if you want to have a baby… I don’t drink, smoke, do drugs … it means you dislocate; your teeth are harder to work on, your struggles with migraines, random allergies.”

She then revealed that she wasn’t posting the video for people to gawk at her, but rather, she wants anyone who may have similar symptoms to see their doctor and get a diagnosis. “I am not a doctor but that’s why I want you to go to a doctor."

"If you’re struggling with your joints and accidents all the time, please look at the symptoms,” she concluded. “It really can save your life. The people who have it really look well. I love you, I’m with you, go get checked!"

It's not the first time Jameela has discussed having EDS. In 2019, the Ehlers-Danlos Society presented her with the Patient Advocate of the Year award for helping raise awareness about the rare condition.

"It's terrifying how many doctors still haven't heard of it,” she said at the time. “So many people have it, and so many more people than we realize as they don't know the symptoms, because the symptoms aren't being discussed en masse."

She has also previously described what the condition does to her and how it affects her daily life. "I have such severe eczema all over that my legs are covered in huge patches of pigment loss from scratching," she wrote in a now-deleted tweet. "I have a ton of stretch marks, and because I have Ehlers Danlos Syndrome, every time I cut, I scar."

The She-Hulk star also expressed frustration over people doubting her condition because it can sometimes appear "invisible." Speaking with Parade, she explained, "It's a severe lack of collagen, just to put in the most simple terms. It means complications with your bones, teeth, joints, skin and your vital organs. Basically, nothing works properly. You look like the absolute picture of health on the outside, and you're subjected to a lifetime of doubt cast on you by people who haven't lived with an invisible illness."

She has also previously spoken about using humour to draw attention to her syndrome in a “sexy” manner. Speaking with Ability Magazine, she said, "I also would like to show disability in a sexy way. That's something that I feel really passionately about, that I've been working towards," she said.

 "People see people with disabilities as untouchable. And it's so not true. Many of my friends with cerebral palsy have wonderful sex lives, they get married, and they may be going to have babies. So, I'll keep working towards showing disability in a sexy light."

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