Chris is quite a fan of mindless TV, particularly after coming home to errands and chores after an already long day at work and I’ll watch just about anything if a back massage is attached to it. And so our evening routine usually consists of Chris cooking dinner whilst I play WoW (apparently too many cooks spoil the broth and I’m banned from the kitchen), we more often than not eat upstairs in the bedroom and watch something on TV. After dinner I get a back massage and he gets to watch whatever he wants. An episode of Law and Order was on the menu recently and I was rather surprised when Ehlers-Danlos Syndrome was mentioned.

I’m not particularly interested or bothered when mainstream media selects a rare condition which in this case happens to be mine and gets it all wrong, but in this case, I was a little bothered. EDS consists of a group of heterogenous conditions with plenty of cross-over symptoms between different types, making it a particularly complex diagnosis to get. I find it difficult to watch when EDS is in the media and it’s so different from how I experience it. EDS is extremely variable and boiling it down to: “Blair’s baby was diagnosed with Ehlers Danlos syndrome. The skin is so delicate the slightest touch causes tearing. It can be fatal without constant medical care” is a little disappointing. I assume they picked the dermatosparaxis type of which less than a dozen cases have been reported world wide as it’s the type with the most pronounced skin issues, but in that case, how hard would it have been to just say so? And personally speaking, it all sounds a lot more like Epidermolysis bullosa, but I think nobody could pronounce that one and EDS just sounded better.

The fact that it was an abortion themed episode was less of an issue for me other than I felt it should have been more about the murder and less about the moral issues shrouding it, but that’s just me. Life is complicated enough without thinking about ethical dilemmas that I don’t have any first hand experience of. In between dealing with the chronic issues disability and an incurable illness creates, I try to live as happy and fulfilled a life as I can and it only gets depressing when I over-reach. It’d be nice to have a full-time job, raise a family, own a house and do all the things everybody else is doing, but it always feels like reaching for an unreachable goal and just the thought alone is tiring. I remember what it was like when I tried to keep going even when I really should’ve been stopping. It wasn’t nice or pleasant and the rewards never seemed worth the sacrifice. There are different paths one can take in life and although there are limitations, I still think that there’s always a way to find a path that you’re happy with.


One thought on “Dignity

  1. “There are different paths one can take in life and although there are limitations, I still think that there’s always a way to find a path that you’re happy with.”

    Well said, as always.

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