Lena Dunham has long been an open book about her health struggles, both mental and physical. So when a paparazzi photo that showed her wearing a nightgown and walking with a cane surfaced over the weekend, the actress took to Instagram to set the record straight. In the post, she revealed she has been struggling with Ehlers-Danlos syndrome, a chronic disease that affects the joints and skin.
“I could choose to be embarrassed by these paparazzi pics — I mean, that’s probably the point of someone publishing them in the first place — but I’m really not,” she wrote alongside the photo, joking that she could’ve also pretended it was a Halloween costume. But she chose to share the details of her diagnosis instead.
“The truth is just: This is what life is like when I’m struggling most with chronic illness,” Dunham continued. “Ehler-Danlos syndrome flare means that I need support from more than just my friends… so thank you, sweet cane! For years, I resisted doing anything that would make my physical situation easier, insisting that a cane would ‘make things weird.’ But it’s so much less weird to actually be able to participate than to stay in bed all day. And yes, you’d better believe I’m wearing my nightgown.”
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I could choose to be embarrassed by these paparazzi pics- I mean, that’s probably the point of someone publishing them in the first place- but I’m really not. 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.) But the truth is just: This is what life is like when I’m struggling most with chronic illness. An Ehler-Danlos syndrome flare means that I need support from more than just my friends… so thank you, sweet cane! For years, I resisted doing anything that would make my physical situation easier, insisting that a cane would “make things weird.” But it’s so much less weird to actually be able to participate than to stay in bed all day. And yes, you’d better believe I’m wearing my nightgown. I was walking four feet to the car to go to the doctor and I wanted to be full cozy. I mean, didn’t Bieber wear hotel slippers for like five years? Yeah, so I can wear my glamour nighty for two hours. 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!
Dunham went on to explain that she wanted to be comfortable at her doctor’s appointment, so she chose to stay in her nightgown and slippers. “I mean, didn’t Bieber wear hotel slippers for like five years?” she joked.
But shortly after, she said that she was dressed and ready for work, noting the resilience of women with chronic illness. “An hour later, I’m in a meeting look tackling the job I love,” she told followers. “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.”
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Taking a moment to recognize all my truest homies who are dealing with chronic illness and in pain. I see you, I hear you, and I’m rooting for you every day. Even if all you can do is sip coffee, you are a rollicking success. May is #EDSAwarenessMonth, so if you have Ehlers-Danlos syndromes and hypermobility spectrum disorders, I encourage you to join The EDS Global Registry to support the research of this uncommon and unknown life-threatening illness, educate health professionals, and create EDS experts globally so that our pain is understood and honored. Link in my bio. #EhlersDanlos #EDS
Ehlers-Danlos syndrome is a group of disorders that affects connective tissues that support the skin, bones, blood vessels and other organs and tissues, according to the National Institute of Health’s Library of Medicine. It affects one n 5,000 people, the National Institute of Health notes. Sufferers often have fragile skin, bruise easily, and loose joints, though some forms have more severe symptoms.
After sharing her diagnosis, Dunham received loads of support from followers and fellow celebrities. “There’s more to life than what we look like. Keep finding your way to health!” wrote Rita Wilson. “Chronic illness is no joke. Keep doing you! You have support! You are loved!” added a fan.
Over the years, Dunham has been outspoken about her health, including everything from addiction to endometriosis to EDS, and she continues to share the realities of living with illness. She has had over 12 surgeries, including a procedure in October to remove her left ovary and a total hysterectomy to relieve severe pain caused by the endometriosis. During her recovery, Dunham said she developed a “dependency” to the anti-anxiety medication Klonopin.
“People need to understand that the only thing that really stands between anyone and success is their health, and that’s what Lena’s talking about now,” Jemima Kirke, Dunham’s Girls co-star, told People. “She’s not talking about her looks or her social life or her love life, she’s talking about the only real thing that can stand between a woman and her dreams and that’s her health. And that’s the thing that she struggles with every day.”
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