IF I HAD KNOWN

Posted June 20, 2018

By Jess H.

I recently found out, through a series of seemingly unrelated minor health disasters, that I have a genetic connective tissue disorder known as Ehlers Danlos syndrome or EDS for short. EDS involves connective tissue that is missing or weakened throughout the body, affecting multiple systems in sometimes mysterious ways. It can take decades to get to the point where doctors can connect the dots and make the diagnosis, and there is no cure.

This recent discovery in my own body puts me in an interesting position from which to discuss living with disability, since I have always had EDS, but I only just found out.

Receiving the news, I was flooded with emotion – grief for possibilities that – even now in my middle age – will never be able to come to pass in this body, and worry for both myself and my children, each of which have a 50/50 chance of inheriting EDS from me. But I mostly felt relief at having a reason for all of the ways that I have been made to feel different and less than throughout my life.

Looking back through the lens of having a disability, much of the suffering that I have experienced over decades now makes sense.

Some examples: when I was in third grade and my PE coach would chase after me as I lagged behind on running laps. He would shout out – in front of the other children – that I was being lazy, that I was slow, that I was weak. In fourth grade, when I had mysterious symptoms including terrible pain in my fingers and wrists when I would write – I was told to suffer silently and get over it, to stop complaining, or when I would get rashes all over my body and the doctors gave me heavy sedatives because they could not figure out what was causing the hives. All the times that I could not breathe. When I was a child, the adults, even my trusted ones, at times, would call me weak, overly sensitive, delicate, fragile, lazy. The ways that I came to see myself as the embodiment of those descriptors from having them said to me in so many ways over so many years. And moving forward in time, having spent years healing my perception of myself through meditation – in particular self-compassion practice – and yet, still, wondering if this new bit of information – this diagnosis – will change the way I view myself, and afraid that my children – still young enough to need me – will no longer see me as strong and capable, will be embarrassed by me, disappointed in me, or slowed down by me.

I wonder how things might have been if I never found out. I wonder how life would have been different if I had known sooner. One thing I know: If I had gotten the diagnosis sooner, I would not have taken up yoga to alleviate the chronic pain and anxiety of EDS. I would not have found the practices that have kept me grounded and content through everything else life has thrown at me. I would not have become a yoga teacher – the only job that I have ever loved in my life thus far. Yoga is often contraindicated for those with EDS as, without sound connective tissue, the postures and practices can destroy the joints. Always a rebel, and always one to believe that anyone in any body can receive the benefits of yoga, I continue to practice and teach a very modified style of yoga.

As a cancer survivor, I know that people want to hear a positive take on personal stories like this one, the “yes, this bad thing happened, but I’m going to be okay,” reassurance or the “yes, I have suffered, but through the suffering, I have learned so much.” They really need you to make lemonade out of those lemons. People love a Hollywood ending or a moral to the story, but I haven’t gotten there yet.

All I’ve got, so far, are the words that continue to anchor my practice: “May all beings be safe and protected. May all beings be free from suffering. No matter what happens, may my heart be at ease.” And may this – and may I – be enough.

 

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.

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