I know that it’s been months since Kylie Jenner tweeted that Snapchat was over, and the company stock dropped like a billion dollars over night, but if you, like me, find yourself absentmindedly scrolling through the app’s Discover page while you lie in bed, trying to pass the time of generally being alive, you might have watched the 10-second talent show. I honestly barely register anything I see on Snapchat (mostly quasi-news stories and trendy food quizzes, I think? I don’t know.) The app’s idea, after all, is maybe the inevitable culmination of decreasing spans and instant gratification, offering sensational headlines and stimulating images that disappear within seconds. With all that said, the 10-second Snapchat talent show stuck out to me.
The premise is essentially that Snapchat users send in 10 second videos of themselves performing a weird talent, which is selected and compiled into the story that appears on my phone. While you see some people juggling or playing an instrument or balancing a fidget spinner on their nose, a lot of these talents involve tricks people do with their bodies. Some people roll their tongues into a W-shape or wiggle their ears. Other talents involve extreme flexibility– people rotating their elbows almost full circle on the table, bending their fingers back so that they touch the back of their hands, stretching the skin on their face further than most 20-year-old facial skin usually goes.
This is when alarm bells went off for me. I have talents too.
I can touch my thumb to my wrist. I can put my hands together in prayer position behind my back and make my scapula pop out. I got the highest score in the v-sit test in gym class. I could do the splits both ways. As a kid, this was my default entry in my class talent shows– I’d get up in front of everyone and lie on my stomach while I looped my feet around my shoulders.
Nobody really thought much of this, but it grossed my granny out and she asked me not to the splits in her house. My neighbor called me a contortionist but I thought he was exaggerating.
When I was 20 years old, through a kind of unrelated diagnostic journey that I won’t go into right now, I first heard the term Ehlers-Danlos syndrome (EDS).
EDS is a genetic connective tissue disorder, famous for causing joint hypermobility and hyperelastic skin. While those are the famous symptoms people associate with the condition, it can also impact organs throughout the body and causes chronic pain. It’s best to get diagnosed early, to begin taking precautions and working with a specialist and physical therapist before too much damage is done. EDS is called rare, but most people familiar with it believe that it’s actually much more common than doctors realize. However, because there’s a lack of awareness surrounding it, many people go undiagnosed and untreated or mistreated for years or lifetimes.
As I laid in bed watching strangers on my phone bend and twist and stretch their bodies in extreme ways, I felt a little worried for them. Some of the tricks they performed were literally clinical criteria on the Beighton Scale Test. Had these people heard of Ehlers-Danlos syndrome or its cousin, Hypermobility Spectrum Disorder? Had anyone mentioned it to them? Did they ever bring up that their joints were unusually flexible to the doctor? Did they know that it might be relevant– that it could be related to potential issues with their blood pressure and digestive system and heart?
I’m not saying that anyone should necessarily stop posting their bendy joints on Snapchat (although everyone should be mindful of actions that can lead to injury). While EDS symptoms can truly be a pain, I don’t really see my hypermobile joints as something I have to hide or be ashamed of– they’re just a thing. However, I am saying that if you have extremely bendy joints, it’s good to know that, while it’s far from a diagnosis on its own, it is a classic symptom of a seriously underdiagnosed condition that can affect your whole body.
There’s a very real chance that a lot of the people on the story are fine. Maybe they just have this one double-jointed trick on their thumb. Maybe their elbows are a little hypermobile, but overall, they won’t experience severe impact on their quality-of-life. I have no way of knowing. There’s also a real chance that, at least one person on the story, does experience more severe issues that they never connected to this fun party trick they can do. For some people, wiggly joints mean nothing, but for others, it’s the clue their doctors need to get them into treatment.