5 Things I'm Thankful for as Someone with Ehlers-Danlos Syndrome


November is that time of the year when we all do two things: we either feel sincerely thankful for what we have in our lives, or we at least ride the social media wave of “thankful” posts. I’m not saying these things don’t come from an altruistic place. I truly believe that even if this is the only time of year you reflect on your gratitude, then you are better for it. However, I love an underdog, and as such, I am always motivated by the people who smile in the face of fear and are thankful for even the not-so-positive things in their life.

A little over two years ago I was finally diagnosed with Ehlers-Danlos syndrome, and all the fun comorbidities that come with it (like its awesome friend POTS, or postural orthostatic tachycardia syndrome, and so forth). My situation was complicated by nerve damage to my left leg and spine that came in the form of a climbing accident on Mount Rainier in 2011. Since that time, I’ve dived head-first into the world of adaptive sports and having the most awesome life possible. Recently, due to a rough patch in life, I wasn’t my normal, positive self. But a strong friend encouraged me to always find the positive, and sure enough, as soon as I did, life got a whole lot better. That is why this I’m thankful this year for five things I have experienced – all thanks to EDS.

1. I’m grateful I was diagnosed with EDS late in life. I have participated in over 50 running events, including 13 half marathons and the 48.6 mile Dopey Challenge at Disney.

2. I’m grateful for my body slowly changing and having challenges. Because I was losing some mobility, I sought out the most aggressive functional workout possible – CrossFit – and recently took second place at the national Working Wounded Games, an all-adaptive CrossFit competition.

3. I’m grateful I am no longer able to ski upright. I shredded both my ACLs (without knowing it) in 2013 as a result of EDS, and after that I took to adaptive monoskiing.  I’m in my third year with the program and was Student of the Year my first time out. I’ve also been given a grant from the Challenged Athletes Foundation to purchase my own ski rig. Had I not had EDS, I would have simply hung up the skiis because I wasn’t able to do it anymore. But because of my illness, a whole new world was opened to me.

4. I’m grateful for my bad days because they remind me how sweet life is and how much good stuff is out there. I no longer waste time, energy or moments, because I know just how precious they are.

5. I’m grateful for the people in my life who accept me just as I am. The ones who know I hike a little differently or need a certain setup at CrossFit. The ones who know I might walk a little slower but still invite me to theme parks. The people in my life who accept and love me for me, just as much as I love myself.

I’m not going to lie: life is, at times, a bumpy road to navigate with EDS. There are days I’m so exhausted or hurt so much I can’t imagine getting out of bed – but I always do. There are nights I’m blinking back tears while I type a friend. But I never give up and each push forward is a new victory. Because the best gift of all this holiday season is the life lessons EDS has given me.

There is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think.”  —A.A. Milne, “Winnie the Pooh”

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