The Rare Medical Condition Jameela Jamil Lives With
Actor Jameela Jamil has been involved in a string of controversies over the years, but nothing was more bizarre than the time she was accused of faking illness.
"The Good Place" star, who's known for speaking out against unrealistic beauty standards she believes the likes of the Kardashians and Cardi B often reinforce, had been suspected of giving inaccurate accounts of her experiences with certain ailments. It started in early 2020 when journalist Tracie Egan Morrissey shared a series of highlights on her Instagram page detailing how Jamil supposedly faked her experiences with celiac disease, peanut allergies, a breast cancer scare, and more by giving inconsistent accounts of these incidents. Morrissey also questioned the time Jamil revealed that she had been involved in car accidents and bee-related mishaps because the stories she shared in interviews varied, per Slate.
Because of these inconsistencies, Jamil had been accused of having Münchausen syndrome, a psychological disorder where someone fakes having an illness. But the actor was quick to debunk the allegations and went on to reveal that she, indeed, had been diagnosed with something — something far beyond Münchausen's.
Jameela Jamil revealed she has Ehlers-Danlos syndrome
Jameela Jamil took to Twitter to call out people who had been wrongly accusing her of having Münchausen syndrome. She called the journalist who started it all an "unhinged idiot," because the accidents they had been questioning happened on two separate occasions. "First I'm lying about my sexuality, now I'm now being accused of munchausens? By an unhinged idiot who didn't even realize in all her 'research' that my car accident injury stories are 'different' because they were about TWO SEPARATE CAR ACCIDENTS 13 years apart?" Jamil wrote in a since-deleted tweet (via People).
In another since-deleted tweet (via USA Today), the actor shared that she has Ehlers-Danlos Syndrome, which, according to Mayo Clinic, is "a group of inherited disorders that affect your connective tissues." Jamil expressed frustration because having such a condition "means always having people doubt your illness and injuries because you look okay."
It's not the first time Jamil 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. "I am sorry it took me so long to speak publicly about my condition. I think I was afraid of being discriminated against, and I think I feel, I felt, discouraged by how little information there is about it publicly," Jamil said at the time. "It's terrifying how many doctors still haven't heard of it... 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 on mass."
Jameela Jamil on living with Ehlers-Danlos syndrome
Since Ehlers-Danlos Syndrome is a relatively unknown condition, Jameela Jamil makes it a point to raise awareness about it whenever she gets the chance. She once explained how having EDS affects her body, and how she can't even use body makeup because it just makes the condition worse.
"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, (via Women's Health). "I have a ton of stretch marks, and because I have Ehlers Danlos Syndrome, every time I cut, I scar. I refuse to have these normal human marks weaponized against me." On Instagram, she called out companies trying to sell body makeup to cover up "flaws," when, more often than not, the products do more harm than good. "It clogs pores, can make some skin conditions worse and is based on a Photoshop ideal of a woman," she wrote.
Jamil also expressed frustration over people undermining her condition because it can sometimes appear "invisible." Speaking with Parade, she explained, "It's 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."
Jameela Jamil and her advocacy
Jameela Jamil is now making it her mission to speak out for other people living with Ehlers-Danlos Syndrome because, according to the actor, the demographic is severely underrepresented.
"Often we're met not with sympathy, but doubt and mockery," Jamil shared with Parade. "That's why it's so important for me to stay loud and proud about it so we can have more representation around Ehlers-Danlos and can get some funding." In an interview with Ability Magazine, she said that, hopefully, other people living with EDS, especially the younger ones, feel uplifted because of her work. "If I end up on the cover of magazines and people can show my stretch marks and my scars and my bendy joints, I want young people to feel that at least some of their dreams can come true, too. I want them to feel represented in me," she said. "Once people know that you're sick, they just write you off, and they just hope you survive rather than expect you to thrive."
Jamil even said that she wanted to show EDS in a "sexy" manner. "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 added. "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."