Lena Dunham Instagram – Until I was in my late twenties, I didn’t know that all my bendy party tricks (or the random fits of flushing which made red lipstick a gamble, or my migraines or swollen knees or fainting spells…) weren’t just quirks. They were all part of Hypermobile Ehler Danlos Syndrome, a genetic condition that means a lack of collagen in my connective tissue. This causes everything from joint pain & dislocation, poor wound healing and a plethora of seemingly random symptoms that aren’t so random at all.
Hypermobile EDS is one of 13 known forms of EDS- and while this condition is misunderstood and under-diagnosed, it’s thought to affect 1 in 5000 to 1 in 40,000 people, depending on the type.
It’s fitting that I was born in May because it’s also EDS awareness month 🙏 If you or someone you love lives with EDS, this is the time to make some noise about it. And if you meet someone dealing with unexplained challenges and pain who fits this description, encourage them to learn about their symptoms. Fact: it was actually someone who had read my writing about chronic pain & seen me on TV who encouraged me to see a specialist. That sisterly act of care changed my life.
If you have EDS, remember:
1- it’s not in your head.
2- you’re not lazy.
3- it’s alright to ask for help- there’s no shame in admitting what you can’t do.
5- You’re allowed to take advantage of disability services. The only time I’m *ever* sassy outdoors is when someone asks why I’m using the disabled bathroom.
6- It may feel like the world is passing you by, but think of the gifts you develop as a result. My creativity was born of the time I spent on my own. As a director, I work from a place of empathy that my illness gave me.
If you love someone with EDS:
1- be flexible- they’re doing their best. Don’t take it personally- fatigue, changed plans.
2- It’s ok to be overwhelmed.
3- Remember, they have a well of hard-earned empathy just waiting for you.
Offering love to everyone living with chronic pain or supporting a loved one who does. For more info check out: ehlers-danlos.com
ps scroll to see the elevator that takes me up to the set-would love to take you for a ride sometime💗 | Posted on 09/May/2024 17:44:59
