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Getting to Know Myself After My Ehlers-Danlos Diagnosis

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

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! 

Originally published: November 9, 2016
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