Paparazzi photos of actress Lena Dunham walking using a cane were recently released.
Rather than being embarrassed by them, Dunham chose to take the opportunity to open up about the medical condition behind the decision to use the mobility aid and educate folks about Ehlers-Danlos Syndrome's affects oher life.
Ehlers-Danlos Syndrome (also known as EDS) is one of several forms of genetic disorder the National Library of Medicine describes as:
"a group of disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues. Defects in connective tissues cause the signs and symptoms of these conditions, which range from mildly loose joints to life-threatening complications."
It is not uncommon for people with the condition to use mobility aids like canes, crutches or wheelchairs because they can make moving around in the world much less painful and can help decrease joint dislocations.
For many people, using the mobility aid can make the difference between being able to actively participate instead of being distracted by pain the whole time.
Lena shared the paparazzi photos to Instagram with a long post about how living with EDS affected her life, and how truly freeing it was to allow herself to start using a cane.
She addressed the photos—and the probable motivation of those who released them—first.
"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 said she could have tried to pass the look off as an early Halloween costume, but the heart of the matter was much more important.
"But the truth is just: This is what life is like when I'm struggling most with chronic illness."
She goes on to thank her cane for giving her the freedom to live her life, even during an EDS flare.
"An Ehler-Danlos syndrome flare means that I need support from more than just my friends... so thank you, sweet cane!"
Admitting to herself that she needed the extra support, and then allowing herself to actually use it, was a struggle for Lena.
It is a familiar story for many chronic illness sufferers in a society that largely values people based on their ability to work.
"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."
Dunham also addressed the rest of her less than traditional ensemble in the photo.
"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."
She finished with a powerful statement about the reality of life with chronic illness.
"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."
Lena is not the only celebrity who lives with EDS. "Chandelier" singer Sia and The Good Place actress Jameela Jamil also recently opened up about their experiences living with the condition.
Jamil talked about her struggles with accepting the condition and being open about it when she was awarded The Ehlers-Danlos Society's Patient Advocate of The Year award in August of this year.
"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, and still how little research is being done around this condition."
Informed, competent medical care is also often hard to find for folks living with EDS.
Jameela addressed this concern in her speech as well.
"It's terrifying how many doctors still haven't heard of it, and it's been around for a very long time. 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."
People in the public eye speaking up about what it is like for them to live with chronic illnesses goes a long way toward raising the public's awareness, and often changing opinions, about those illnesses.
Dunham is also known for her candor regarding her struggles with endometriosis, and her decision to have a total hysterectomy to treat the condition in 2017.
The book Hypermobility Without Tears: Moving Pain-Free with Hypermobility and EDS is available here.
