I lived with Ehlers-Danlos syndrome (EDS), a rare connective tissue disorder, my whole life and had no idea until I was 21. The symptoms were all so random, separate, and often so seemingly inconsequential, that I never suspected they were related symptoms, just the ~quirks~ that come along with having a human body.
As soon as I received the diagnosis, I started googling it like crazy. Before that, my image of EDS consisted of the common, basic stereotypes that most people associate with the condition, if they’ve heard of it at all. I knew it has something to do with elastic skin and super flexible joints, because I had seen photos of patients in my Cell Bio textbook. My professor had described it as a the circus freak condition. Moving past the fact that that’s obviously like borderline horrible, it’s also incomplete. There are like a billion symptoms that manifest differently in everyone, and it’s hard to accurately diagnose people if you’re only looking for the classic signs.
In reality, the condition is so much more than being really double-jointed– it literally affects every organ system in the body. Since it’s so rare, it can slip under the radar easily, leaving potentially life-threatening complications to go unmonitored. If you’d like to read more in depth about Ehlers-Danlos syndrome, you can do that here.
Here are 13 times EDS showed up in my family and we had no idea:
1. Flat feet
When I was 12, the doctor told me to get in-soles for my flat arches– which, it turns out is common in EDS patients with lax tendons. Alas, I did not listen until years later, when I started suffering from plantar fasciitis and begging everyone who would listen to rub my feet. This would prove annoying, both for me and everyone I have ever shared a couch with, but did the chronic illness alarms go off? Nah.
2. Bendy eyeballs
In every picture of my mom when she’s pregnant with me or my siblings, she’s wearing these huge glasses which I had never seen before. Generally, she prefers contact lenses, and when I asked her about the giant plastic frames, it turned out to be a weird story. When she was pregnant, she found that she was suddenly no longer able to put in contacts. She went to the eye doctor who told her this was because she had incredibly flexible eyeballs that had bent out of shape during pregnancy. This is in the category of: hard to confirm that it’s related to EDS, but extremely suspicious. After she gave birth to each child, her eyes would return back to their original form. Essentially, I have a lot of weird eye stuff to look forward to.
3. This weird thing my scapula does
There’s this yoga pose called Reverse Prayer, where you put your hands behind together upright behind your back, and when I do that it literally looks like my scapulae are two bony wings about to emerge out of my skin and take flight. Obviously, I love this.
4. My elementary school talent show entry
In 5th grade, my school music class had a talent show. I mostly remember it because my long time crush, Nick G., burped the alphabet backwards and I learned what it meant to fall out of love. When it was my turn, I laid on my stomach and looped my feet behind me and around my neck. Looking back, I realize my talent was basically “having unstable joints,” but really, what’s the difference?
5. My sister’s shoulder dislocation
I have this distinct memory from when I was 6 and my family was spending the day in West Virginia on Christmas. My mom and dad were holding my four-year-old sister’s hand while she skipped between them and suddenly we heard a scream. We took her to the hospital, and the doctor popped her arm back into her shoulder socket, while I ate a chocolate Santa Claus.
Because we weren’t at home, my parents learned to pop her shoulder back in on their own as the doctors cheered them on over the phone.
There is evidence that exercise can prevent these type of injuries in people with EDS– to learn about how to work out safely, click here.
When I was 16, I started having the worst stomachache. Half an hour later, I collapsed in the middle of a major street, while a crowd formed around me. This has happened a few times since, but I’m better able to prevent it/ recognize the warning signs/ understand why it’s happening. At the time, I just thought I was experiencing spontaneous death, and used my last moments to think about a guy who hadn’t texted me back.
7. Blue lips and hands
LET ME TELL YOU about every time I was sent inside early from recess because my hands had turned blue, and I was running around the playground trying to show everyone this cool phenomenon. This inevitably concerned teachers, who sent me to sit in a classroom by myself. EDS actually causes Raynaud’s disease, which causes bodily extremities to respond severely to cold in a lot of patients.
8. Covered in bruises
Let me introduce you to game called: EDS patient with fragile blood vessels or member of a fight club?
9. Breaking nails
I can’t grow my nails out at all, because they break immediately– or worse, they bend the wrong way against a hard surface I shiver for hours. I’ve heard that Sally Hansen’s strengthening nail polish helps, or like, I don’t know, a new form of gene editing.
10. Low blood pressure
Although I get terrible head rushes when I stand up due to my EDS-caused orthostatic hypotension, there is a silver lining– a medically prescribed high salt diet.
11. Cracking joints
I will be honest with you, I love cracking knuckles, toes, shoulders, and any other joint that makes a satisfying noise. What I don’t love is the quiet rustling of all my other joints that want to crack every time I move due to a cavitation in my joint tissue, but don’t quite make it there. Think of it like you’re constantly preparing for a sneeze that never actually happens, but like every time you move your shoulder.
12. Stomach problems
I won’t go into graphic detail, but ever since I was a kid, I’ve dealt with chronic stomach pain and complications. Since I’ve struggled with this all my life, for a long time, I honestly assumed everyone curled up with a bottle of Pepto a few times a week, which I’m okay with because I kind of like Pepto. Gastrointestinal problems are often overlooked in the world of EDS, but 56% of patients experience them.
13. Constantly tired
Honestly, I could list a hundred weird symptoms, but like many other EDS patients who suffer from fatigue, I’m actually three sleepy toddlers standing on each other’s shoulders in a trench coat, bye.