Ehlers Danlos Syndrome,  Relationships

My coming out story

There are many reasons I might feel anxious before I go out somewhere. Have I got enough stamina today? Is the place that I’m going to wheelchair friendly? Am I wearing enough braces? Do I have enough medication – wait, when did I last take some? What dose did I have? This particular day though, I was filled with extra trepidation because I would have to face “coming out” once again.

If you know me, this probably seems a little weird. I came out years ago. Most people in my life at the time probably attributed as much weight to it as they did my Goth phase. 15ish years later, I still wear all black and I still like men and women so… This, however, is not the kind of coming out I mean. I mean coming out as disabled.

Is that even a thing?

These were friends that I had not seen in years. Sure, we’re Facebook friends; but I still hide a lot of my illness from people. There are no photos of me in my wheelchair, anywhere. I share posts about EDS but rarely say anything personal about my experiences with it, until I began this blog I guess. It’s perfectly possible that I could be sharing those posts because someone I know or care about has EDS, as my Husband does for me. If we hadn’t seen each other in a long time, it might come as a bit of a shock to see me as I am now.

People are going to want to know what’s happened, and there are many reasons I might not want to answer this question. In this instance, we had arranged to meet up for something really special – the celebration of the new life growing in an old friend. Something positive and happy; just as the occasion of seeing lovely people again, after such a long time, was in itself. The last thing I wanted to do was whip out my good old conversation stopper: Actually, this is a really horrible illness that is systematically dismantling my life and will never get better – only worse. It’s a bit of a mood killer, right?

So what did you tell them?

I actually have a whole arsenal of responses to this question and those like it. I think this is fairly among people in similar situations, and typically British to use humour to deflect. The response I choose depends entirely on who’s asking and why I don’t want to answer them honestly. Nosey person in the supermarket that I don’t even know? Shark attack. Small child? My legs don’t work very well. This time? A few of the girls were bridesmaids at my wedding, and all of them know how obsessed with my Husband I am, so it seemed appropriate to go for the “I’m getting old” approach. It’s contagious you know, old age. You marry someone older than you and it just starts taking you over… Laugh, laugh, laugh, swift change of subject.

This of course means that I haven’t come out to them yet. The bad side of avoiding the question is that it can’t be avoided forever. Most people aren’t just nosey supermarket goers, they are people that care and have a genuine interest in your well-being. When they see that something is wrong, it’s only natural that they would want to know. But coming out is an emotional experience, and you need have the right set of circumstances to do so. I don’t want to burst into floods of tears, and some days that’s exactly what happens when I try to talk about it. I didn’t want to begin ranting about the lack of accessibility of most places and not be able to stop. Neither did I want to shift the focus from the joy of a new baby to the pain of living with a rare disease like mine.

When is the right time?

There is no right answer. Part of me wants to avoid it entirely and just point each of them in the direction of this blog, but for some reason this seems a little impersonal. I want to get it over with now as I feel it hanging over me. Also I just want to see them again as it was so nice reminiscing and catching up – we really don’t want to leave it so long before the next time. You can tell we’re grown-ups now that we say things like that, and it usually still takes years but I’m going to send them a message now and see if we can’t sort something out before Christmas.

There’s nothing I couldn’t tell this sweet bunch of ladies, I just need to be ready to broach the subject. I need to be brave; I need to be Batman.

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