Getting to Know Myself After My Ehlers-Danlos Diagnosis


I won’t go into details, but it’s safe to say my medical history is pretty similar to others with Ehlers-Danlos syndrome hypermobility type. Long years of orthopedic operations as a child, complications  having to do with healing, fatigue, pain… seem familiar? Yeah, me too. The only thing I didn’t know was what it was called. I wasn’t given my diagnosis until August 2015 when I was 34. Again, not an unfamiliar story for those of us with EDS.

What was new to me was the sense that, although so many questions had been answered about my myriad of medical problems since the age of 9, I was left with a massive one unanswered: who am I? Now, this may tend to stray into “cheesy” territory but my world genuinely started falling down around me post-diagnosis.

The “me” I knew was a full-time teacher, moving quickly up the ranks, well-liked, relied upon, funny at times and someone who was always able to get through any medical adversity that was thrown at her! I was also a wife, a daughter, an auntie, a friend. And now I was a diagnosis. It was both a blessing and what seemed like a seal of fate.

The following months were a blur. Adjustments at work, occupational health meetings, specialist physiotherapy appointments, splints, exercises, medication, assessments for this, assessments for that… In the chaos, the “me” I knew and liked (on the whole) crumbled. To cut a long and messy story short, after a year with my diagnosis I have had to finish the career I loved and lose and make friends, but mainly I lost my identity. 

Now this may seem “tragic” and believe me, at first I thought it was. It seemed like the worst thing in the world to lose my profession and gain a disability. I grieved for a long time, and there are days when I still do. However, with each day that goes by I realize I have been delivered a blessing – not EDS; I am not that “at one” with myself to count that as a blessing just yet! Not the disability, but the opportunity to get to know myself properly. Not myself, “the teacher.” But me. 

I can’t quite tell you who I am yet. I’m in the early days! And I’m not trying to “find” myself – we’ve met, I just need to get to know her better. I guess what I’m trying to say is, don’t let jobs or people define you. Turns out I wasn’t just a career (who knew!) and I hope it turns out I’m not just a disability. I’m thankful for my diagnosis, and not just for the validation it gave my pain and the way it feels to be inside my skin. I wasn’t going mad. I am a genetic anomaly that can seek help and treatment; knowledge is power. Yes, I’m thankful for all that, but more importantly, I’m thankful it toppled my world. I’m thankful I don’t have to keep up the fight and struggle it took to be the “me” I thought I was. I am thankful I get to start fresh. I am able to get to know myself again – and I guess it’s time to meet. Hi, me! 

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