Earlier this year, Jameela Jamil revealed that she lives with a rare condition called Ehlers-Danlos syndrome (EDS). The inherited condition affects connective tissue, with symptoms including an increased range of joint movement (joint hypermobility), stretchy skin and fragile skin that breaks or bruises easily.
In true Jamil fashion, she was frank yet funny about the condition in a social media post she shared in March. After uploading a video of herself on Instagram, she wrote, “I’m fine,’ before replying, “Indeed,’ to a fan who asked if she had EDS.
She then continued: “I haven’t addressed it before because people suck and say you’re doing it for attention when you talk about health problems publicly…
“But I’ve also seen how much it has meant to people seeing someone in my position with this utter ball-ache of a condition.”
She added: “And so yes I have it, I have EDS 3, and I’m so sorry if you have it too, and it doesn’t mean you can’t live your dreams, you just have to work harder than other people to keep going.”
Now, Jamil has opened up again about the issue, inviting fellow people who live with the condition to share their experiences.
Sharing a photograph of her feet, Jamil wrote: “An EDS thread. EDS is having to lie with your legs above your head every evening because of the pain and swelling from being on your feet. What is your EDS experience?”
People who related quickly shared their own stories, highlighting the realities of living with EDS.
“EDS is also doing exactly what you’re doing and why but In Washington DC. Thankful for friends who don’t really question it when i do things like this,” wrote one follower.
“EDS is angry glares when you don’t give up your seat on the subway bc you don’t ‘look disabled’. It’s pain 24/7, even in your sleep, and no position, sitting or standing, makes it end. It’s being accused of malingering for so long that you no longer trust your own experiences,” shared another.
“#EhlersDanlosSyndrome is having to wear painful, chafing, sweaty, knee-back-elbow YOU NAME IT braces. All very carefully hidden under your clothing, but necessary to in keep your ribs, knees, and elbows from dislocating and wrecking havoc on your body,” added a third.
“Breaking out in full body hives in the middle of the day for no reason. Also constant joint pain that doesn’t go away no matter what you take. Don’t forget accidentally having your wrist slip out of place while carrying groceries,” tweeted a fourth.
“EDS is lots of bruising for no reason, subluxing fingers while taking notes in class, echocardiograms and pain management. EDS is pain meds and nausea and tight muscles and fatigue and fainting and ER visits. EDS is explaining to everyone in your life what EDS is,” explained a fifth.
According to the NHS website: “EDS can affect people in different ways. For some, the condition is relatively mild, while for others their symptoms can be disabling.
“The different types of EDS are caused by faults in certain genes that make connective tissue weaker.
“Depending on the type of EDS, the faulty gene may have been inherited from 1 parent or both parents.
“Sometimes the faulty gene is not inherited, but occurs in the person for the first time.
“Some of the rare, severe types can be life threatening.”