Recently, different celebrities have been making their chronic conditions public via social media. Lena Dunham was motivated for a similar reason to Billie Eilish, who revealed she has Tourette syndrome, after videos came out of her doing tics, and Sia, who similarly spoke about about her Ehlers Danlos Syndrome. Dunham was photographed by paparazzi in a way that almost caught her in an aspect of her illness, revealing that something was up through photos of her with a cane in her night gown. So she did what Lena Dunham does: she was brutally honest and funny and unabashed about something personal to her and her health. She posted her two cents about life with Ehlers Danlos Syndrome on Instagram.
What is Ehlers Danlos Syndrome?
Ehlers Danlos Syndrome (EDS) is a rare (or under-diagnosed) connective tissue disorder that causing joint instability and stretchy skin. It can affect different tissue in skin, bones, blood vessels, and organs. It’s known for characteristically fragile and elastic skin that can bruise easily, and loose joints which lead to dislocation, sprains, and pain. It can also cause cardiovascular issues, such as ruptures or internal bleeding. The treatment focuses on the symptoms and preventing injury; there is no cure.
Dunham’s Story
Dunham has never been shy about being real about what others may find too intimate. In the past, she has discussed her mental health issues, weight, endometriosis, and hysterectomy. She dove right in with, in a post on instagram paired with the paparazzi’s photo, starting with saying she is not ashamed of the photo, rather with humour she wrote, “”I could lie and say it was an early Halloween look (Don’t you get it? I’m going as a con woman leaving a Florida Keys jail after being acquitted of murdering her husband, and now she’s trying to get disability license plates.)” Rather she says, this is the truth of what she struggles with from her rare disease. She discusses how as much as she needs social support, she needs physical support, “… so thank you, sweet cane!” she throws in.
She addresses something other people with rare diseases may related to: that she spent a lot of time resisting tools like this one that makes her physical health better, “insisting that a cane would ‘make things weird.’” The fear of making a rare disease more obvious and forward can be daunting, it can be easier to neglect health to keep it is the shadows. Instead, she recognizes the opposite: it makes much more sense to respect her bodies needs. She says, “it’s so much less weird to actually be able to participate than to stay in all day.” She made the post lighthearted and, confident in wearing her nightgown, writing “I mean, didn’t Bieber wear hotel slippers for like five years? Yeah, so I can wear my glamour nighty for two hours.”
Then, Dunham shows what makes her powerful, and can be relatable or inspiration for others with rare diseases. She says “And then an hour later, I’m in a meeting look tackling the job I love. That’s the two fold life of a woman with chronic illness: we still rock our dreams and goals and passions (and fashions) and we live many lives in one day. Tell me about your day!”
