Why I'm Angry at the Video That Described My Disease as a 'Super-ability'

Every day I snap, crackle and pop like a Rice Krispie. I experience dislocations, subluxations, and unbearable pain. I stumble, fall and pass out. This is the reality of my Ehlers-Danlos syndrome. It is no “superpower” that my joints can twist to unimaginable directions. It is no “superpower” that my skin easily stretches, bruises and scars. It is no “superpower” that my organs have an increased chance of rupture.

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

I always am bothered when I see my illnesses portrayed in this fashion. Hundreds of times I have seen articles such as “Illnesses that give you super powers” or “Illnesses that we want.” I would never wish these conditions on my worst enemy. I live in constant agony, just pushing through to keep moving, to keep living. Recently a video about my condition went viral on Facebook. It was a video of two contortionists showing off their EDS “super-abilities,” twisting their bodies into crazy positions for the amusement for others.

I have been where they are. I have shown off my “party tricks” and wowed people with my splits as a child. I was an unbelievably flexible cheerleader and tumbler, and I used that to my advantage. While I do not regret my time as a cheerleader, I do know that if I had not participated in my sport I probably would not feel as bad as I do now. I feel for these contortionists as I watch them move their bodies to mesmerizing angles, and I believe one day they may ache like I do. I am only 15.

To be honest, I was outraged as I watched this video for the first time. This was saying my disability is an advantage and something to wish for. They made it seem like I received some desirable gift at diagnosis when I truly live with an incurable curse. I know some people with EDS do not experience joint pain like myself, so I cannot be angered at them for showing off their “gift.” What I can be angered about is its effect on others. For other EDSers, this could encourage them to show off their flexibility and use their “party tricks” in social situations. While this may be fun for some, it could cause substantial joint pain and instability that could prove to be detrimental to one’s future.

To EDSers who watched that video, I ask you please to not try these tricks at home. To the people who saw this video and believed my disease was desirable or a “superpower,” it is not. I suffer every day at the hands of my EDS and associated conditions. I live my life to my best ability, but I am severely limited. I have a future that is very unclear, and I do not have control over where I end up medically. I would not wish this on my worst enemy, so please do not wish this on yourself.

To the women in the video, keep up your contortionism if you wish, but please be cautious about how you portray our condition. Give warning to viewers, do not promote it as a “superpower,” and please do not hurt yourself. EDS requires exercising caution, and your current promotion of your bendiness could cause your disability to spiral out of control in the future.