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You Know You Have Ehlers-Danlos Syndrome When...

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Ehlers-Danlos syndrome (EDS) is a condition that impacts the joints, skin, and blood vessels that can lead to translucent skin, bruises, dislocations, and more. 

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

One thing about living with a health condition is that you are very rarely alone in your struggles. For example, The Mighty is a community full of people with various health conditions who understand what it’s like to live with them. That means you’re surrounded by people who not only “get it,” but they’re able to find relatable humor in their experiences. 

The Mighty’s editorial assistant Skye, who lives with Ehlers Danlos Syndrome, posed a question to our EDS community with that in mind. She asked our community to fill in the prompt, “You know you’re an Ehlers Danlos Syndrome patient when…”

Her personal answers were:

“Maybe you’ve been sitting at the dinner table with friends when someone points out that you’re sitting with your legs intertwined in an ‘impossible’ position, or you could be on your third specialist appointment of the day and still have physical therapy that evening.  My most recent ‘You know you’re an Ehlers Danlos Syndrome patient when…’ moment happened when I squatted to play with my dog and my dad said, ‘How does a human move like that? You have frog legs!’”

Her fellow zebras understood the assignment, and came forth with their own answers to the prompt immediately.

Wait, the way I’m sitting is weird?

“I was sitting on the couch watching TV with my mom. She looks at me, ‘Uhm is that seriously comfortable?’ In my head, I’m like ‘You know the answer. I’m 33, you know me.’ I’m like ‘Yes. Yes, I very much am in my pretzel shape.’” – @Dakota0419

“Just yesterday I had a coworker ask me ‘Are you really comfortable like that?’ and I was in a full squat. Feet flat on the ground and knees to my chest. I looked up and said ‘It’s comfier than standing,” and he just shook his head and walked away.” -@Meagancsantaa

Ouch, that hurt.

“When you can put your legs behind your head but can’t hold a pencil right. When you fall asleep on the couch sideways and your spina bifida vertebra adds two extra fractures and cysts filled with spinal fluid.” – Jessica MacLean

“You know you’re an Ehlers Danlos Syndrome patient when you sleep in the butterfly stretch position and you’ve subluxated your wrist brushing your teeth.” -@Megandorriesfield852

“…When one mosquito bite turns into a whole body itch-fest!” – KJ

Did someone say bruises?

“…When you wake up with multiple unexplained bruises after a night’s sleep.” – @Moontide99 


Lead image courtesy of Mighty Staffer Skye Gailing

Originally published: June 29, 2022
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