Posted July 2, 2018

by Shannon B.

I am a young woman with an Ehlers Danlos syndrome. I wear it just like anybody else. I want to run, and dance, and laugh, and live a happy, fulfilling, energetic life. I want to try a little bit of everything, take risks, and have adventurous stories to tell. I want to graduate from university, get married, and have children of my own. And guess what? I can have it all. All of my dreams are realities I can fight for, if not quite in the same way I once might have expected.

I share the same frustrations that I am sure many other young zebras face. I become frustrated with the things that I cannot make my body do. I dislike when I fall out of high heels, or when my physiotherapist tells me that I ought to avoid the over the shoulder bags that are popular at my university. I am irritated by yoga trends that are “not a good fit” for me, and by the things I cannot carry quite the way I would like to. Was I likely to be a high achieving, medal-winning figure skating had I been born able-bodied? No, probably not, but I would have liked the opportunity to be allowed onto the ice.

There came a point in my life when I realized that this body belonged to me. I have this body, it is mine to do with it what I please, but it is also the only one I have. I can spend my life tearing it down, or letting it tear me down, or I can put up just enough resistance to work at keeping both of us upright.

With EDS, my life will not follow the typical gradient. I will need to think outside of the box, look at things differently, and reconsider exactly from which angles I will tackle the things that are important to me.

I say I want to have adventures; I can. Life itself is an adventure. I will go to beaches and wade through the water (my physiotherapist will be glad I am finally at least pretending to try the hydrotherapy she recommended years ago), go on long drives and sing with the windows rolled down (whether EDS will make my voice quiver I do not know, but it cannot strip my enthusiasm). I will visit interesting places, learn new languages and explore cultures, and view the artwork of the greats when they come to town because yes, I am a bit nerdy, and that is my idea of what constitutes an adventure. I will acknowledge that my gracelessness would have left me ill-suited to figure skating even without EDS, and that jumping out of an aeroplane does not sound like my idea of a good time anyway.

I dream of graduating university; I can. I have started study and providing I carry on putting in effort, there is nothing to suggest I cannot work in the career of my choosing. Who knows, I may find an entirely new path I want to pursue because the future is exciting and unpredictable.

I wish for a family, with children of my own, and though it currently does not seem I will have this in the typical way, it does not mean I cannot make it come true. I may well meet my soulmate tomorrow (perhaps I should wear something nice?), and I will adopt children with whom to play games and make crafts.

For now, I can stop stopping myself. I can wear the dress with the cut out at the back because the ‘S’ shape of my spine is not something to be embarrassed about. I can parade around the scars on my legs because I do not need to feel ashamed of them. I can go places, and do things I am able for, knowing I am often capable of more than I believe, and I can take the emphasis away from the ‘can’t’ moments in order to focus more clearly on the ‘can’ ones. I can be everything I want to be, if a little differently than I had imagined.

My body is the only body I have. I try to be kind to it, to look after it, to listen to it and do for it what it asks. I try to stop vilifying it for what it struggles with and start thanking it for all it is good for. I look forward to my future, not normal, not typical, not what it might have been, because I live my life with Ehlers Danlos as a part of it, and whilst sometimes difficult I know I can achieve my goals, and rest assured that my stories will never be boring.


Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.

Do you have a story to tell? Share it with us!


Categorized in: