This is why videos like Lad Bibleâs âThis 14-Year-Old Is Basically a Human Owlâ make me want to scream!
⢠What is Ehlers-Danlos Syndrome?
⢠What Are Common Ehlers-Danlos Syndrome Symptoms?
If you havenât seen the video, it basically consists of an incredibly flexible 14-year-old contorting his body into unnatural positions. This video seems to have been made to shock people. To make people think Ew, or What on Earth? or Oh my goodness, thatâs weird. It also could, whether intentionally or not, lead to some people trying some of those moves, too. This could be dangerous. Thatâs bad enough, but not my major bug bear.
There are people like myself in this world who are zebras. We have Ehlers-Danlos syndrome, and we are that unnaturally bendy, too. When you watch that video clip, the young man doesnât appear to be in immediate pain, and seems happy to do his tricks for the camera, although I am aware this may not be the case behind the scenes (the video doesnât share his diagnosis).
However, that isnât what life is like for the majority of us with Ehlers-Danlos. We live in chronic pain. Our joints move excessively, but instead of just going back like this young boyâs did, ours often snap and dislocate, too. Itâs painful, itâs debilitating, and it is life-changing. Never mind all the co-morbidities that often come with
The video doesnât show hypermobility fairly. When you explain to people about hypermobility or EDS, itâs very common for their first words out of their mouth to be, âOh that means you can do cool stretchy tricksâ or âOh cool, youâre just bendy then.â I wish that was the case, I really do. But itâs not. Hypermobility usually isnât just bendiness alone, or cool tricks. Itâs pain, and dislocations, and surgeries, and heart, stomach, bowel and eye problems too, to name a few.
Videos like this do not help validate the suffering of those with EDS. I was in A&E once with a thumb injury, and the doctor, upon hearing I had EDS, said that I would be able to do circus tricks then! I wish EDS just meant I could do circus tricks!
Ehlers-Danlos is so much more than just âbeing bendy.â Hypermobility is so much more than âtricks.â And the sharing of this video, which does not give entire insight (or safety warning!) into these type of conditions, makes me want to scream, because itâs things like this that give people preconceptions about our condition, and unintentionally invalidate our experiences.