“I’ve seen how much it has meant to people seeing someone in my position with this utter ball-ache of a condition.”
Jameela Jamil hasn’t always wanted to speak out about her diagnosis with the connective tissue disorder Ehlers-Danlos syndrome.
This isn’t because she feels “ashamed” by the disease, as she has explained in a Twitter thread today, but because she was wary of being branded an attention-seeker by speaking out about her health. “I haven’t addressed it before because people suck and say you’re doing it for attention when you talk about health problems publicly,” Jamil tweeted.
There are 13 different types of Ehlers-Danlos syndrome, a genetic disorder that impacts the connective tissue in the joints skin.
According to the NHS, it is characterised by stretchy and fragile skin and increased joint movement, instability and pain. Other symptoms include muscle fatigue, benign tissue growths, loose skin, chronic pain and recurring problems with heart valves. EDS can range from mild to severe levels of impact upon sufferers. It has no cure.
Jamil has previously not spoken publicly about her EDS diagnosis, but when asked by a fan on Instagram this week whether she had the disorder she replied “indeed”. As if often the case with anything that Jamil does, the story quickly became global news as the tabloid media jumped on it.
“Didn’t think replying “indeed” to a comment on Instagram would be considered me “speaking out” about my EDS, but I keep seeing it in the papers,” Jamil explained on Twitter.
She then clarified the reasons why she had previously kept her diagnosis private, before adding that “I’ve also seen how much it has meant to people seeing someone in my position with this utter ball-ache of a condition. 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.”
She continued: “I’m not at all ashamed of this condition, I’m very proud to have jumped the MILLION hurdles it brings, and how it complicates your health in every single way possible. And well done to you if you’re also surviving this utter f**ker of an illness.”
Jamil is one of a growing number of female celebrities using their platforms to shine a spotlight on the illnesses, diseases and disorders that they live with. This week, Selma Blair spoke openly about her recent diagnosis with MS, telling Vanity Fair that “there’s no tragedy for me. I’m happy, and if I can help anyone be comfortable in their skin, it’s more than I’ve ever done before… I don’t know if I believed in myself or had the ambition before my diagnosis. And oddly now I do.”
There’s also Modern Family star Sarah Hyland, who has a rare genetic disorder that has led to her requiring two kidney transplants over the past six years. Lena Dunham is vocal about her endometriosis and her desire to shed light on how debilitating reproductive disorders can be. And then there’s Lady Gaga, who is an advocate for her fellow sufferers of the chronic pain syndrome fibromyalgia.
When Blair was diagnosed with MS she cried. “They weren’t tears of panic,” she told Good Morning America, “they were tears of knowing I now had to give in to a body that had loss of control, and there was some relief in that.”
We know that women can suffer in silence when it comes to their health and that their chronic pain is often ignored or underplayed by the health system. Women are more likely to wait 10 or more months for a diagnosis than men, and visit a health professional multiple times before their pain is taken seriously.
It’s called the ‘health gap’, or the idea that the medical system is geared towards solving the problems of men rather than women.
Take, for example, the fact that even though 70% of chronic pain sufferers are female, 80% of the studies are conducted on men (mice and humans). Or that women having heart attacks are more likely to be misdiagnosed and even discharged from hospital – seven times more likely, in fact – because clinical understandings of heart attacks are based on the male symptoms of them and not the female ones.
Having celebrities like Blair, Gaga, Dunham, Hyland and Jamil talking openly about their health issues and medical diagnoses will raise awareness about these specific illnesses.
But it will also encourage women to talk openly about their health, how they’re feeling and what kind of pain they might be enduring. And when it comes to closing the health gap between men and women, this a truly vital thing.