This one is a bit nebulous, but it’s important, or at least it feels important to me.
Getting a diagnosis of EDS-HM in adulthood, when up to that point you’d always been fit and active and driven, is a shock. Realising that the fast, often painful, decline you’ve been in for the previous months or years is not only “not just a run of bad luck” or “a couple of injuries” but permanent and basically irreversible is terrifying. The world shrinks – Both in your expectation of what you will be able to do in future, and what you do in the present. Suddenly, that career that was supposed to take you to the Antarctic, or the Olympics, or to Hollywood gives way to working out how you can fit the job that you have around the interminable hospital appointments. Or losing your job altogether, because the pain is just too much – I’m still not sure if quitting in defeat, or waiting until you’re sacked is worse.
This would be bad enough on its own, even if the same force that was making having a stable job so difficult didn’t extend to everything else in life – The same distracting pain and crippling fatigue that makes it difficult to get to work on time makes it difficult to get to the gym, or the shops, or to sit and sew or read or even watch telly.
And, well, all of this applies to the social life as well. It’s difficult to keep long, meaningful friendships when your own life is going sideways compared to the majority of the population, and it’s even harder when physically meeting people is even more difficult; Even if you’re not one of the many hypermobile people who use a power chair (great for improving access, as long as buildings are designed for it… but most buildings aren’t designed for it), going out and meeting people is exhausting. And, well, after the twentieth time that you’ve said “no” to meeting up, most friends just stop calling. Skype helps, likewise forums and social media, but it’s still not easy.
A very wise friend, not long after I was diagnosed, pointed out to me that basically, it would make sense to consider it a process of grieving a loss. Not losing someone else, but losing the life I’d been going to have; And as much as that wasn’t something tangible, we don’t criticise people who want to grieve a miscarriage, so why is it strange to grieve, on some level, the loss of your own life?
And much like the other kind of grieving, it’s healthy to recognise it for what it is, and to set parameters on it. There’s no sense in hiding away from everything and everyone, forever, but on the other hand there’s definitely no harm in letting yourself admit that you’re upset, and giving yourself time to think through and come to terms with what it’s going to mean.
And be realistic – It may take a long time to work out what a sustainable level of activity is. At first you’ll either overshoot or undershoot; Knackering yourself every afternoon in an attempt at having something that looks like your “previous life”, or becoming terrified of the outdoors and shutting yourself away for fear of pain and fatigue and humiliation. Fear of the unknown is normal – But it’s possible to, after a while, make it all the “known”; So that you can distinguish between the pain that means “carry on” and the pain that means “stop now, this is dangerous”.
Plus, there are a lot of things which society thinks are “true” about becoming disabled which actually aren’t true at all, and it’s very easy to believe, in advance, that they’re all true and thus that life is going to be over. There are very few truthful narratives about disability in the mainstream media; Most of them focus on the idea of disability needing to be “overcome” in order to have a good life, rather than just worked around. Think of it as like living in a house with a mouse problem – You don’t need to get rid of the mice, you just need to stop them shitting in your food. Maybe this means buying some storage tins for the flour, and getting into a routine of throwing out uneaten food. It definitely doesn’t require that you move out, or devote a hundred percent of your time to eradicating every last mouse in the building.
But, until you’ve reached that point where you’re used to the mice, and can work around them with as little disruption as possible, it’s perfectly reasonable to feel a bit consumed by loss, and even beyond that point – When you find the metaphorical mouse shit in the biscuit tin, or when you get completely frustrated with always having to store the flour on a high shelf – there’s always the chance that it will creep up on you and ruin your day.
All I can say is, you’re not alone, and don’t feel that you can’t talk about it. Even if nothing else, my inbox is always open.
(Notable runners-up to be “L is for…”; Ligaments, lungs, Loeyz-Dietz Syndrome)