Being disabled is lonely. Being disabled, with a rare and easily-misunderstood condition, is possibly even more lonely.
Common thoughts and reactions, about hypermobility in general and its manifestations;
-Ooh, you’re so bendy! You must be fit, I’d love to be that bendy! But don’t do that, it looks painful.
-You can’t be tired, nothing in the description says “sleepy”, it says “bendy”. Stop swinging the lead.
-What do you mean, you can’t concentrate? You must have overdosed on your evil drugs.
I don’t look ill – Although the more that I think about that, the more that it’s meaningless. Of course I look ill. I have the unmistakeable scrawny pallor of someone who sleeps poorly and eats irregularly, my hands shake when I dig for my wallet, and I walk with a cane. I suppose I look terrible, but it’s the kind of terrible that people are more likely to ascribe to poverty and slovenliness than to genetics. By some metric, anyway, this is an invisible illness, so shortly after meeting a new person I generally have to explain what’s gone wrong and apologise at-length for lying on the floor of their nice new kitchen. It’s probably no coincidence that the new friends I’ve made since diagnosis have all been online (That, and my crippling reluctance to talk to anyone since I am uninteresting and incapable of participating in normal social niceties).
So it sort of makes sense to want to look for friendship in the pool of other hypermobile people, and I have indeed done that; I’m no more likely to get on with another zebra than I am to get on with anyone else, but that initial hurdle of “Oh, you’ve got a weird genetic illness, that’s… weird” is already past, so we can get on to finding out all the more legitimate reasons to dislike each other.
My best friend is also hypermobile – Amusingly, we didn’t meet or bond over hypermobility, we met through a shared acquaintance and ended up best friends through a shared love of opera, drinking, ambitious creativity and gently trolling our friends. I’d been symptomatic for a few months, but not really engaged with doctors, and it was the onset of his symptoms, frighteningly familiar and whose progress I could predict with worrying accuracy, that got me to seek help. Our journeys to diagnosis and through treatment spiralled around each other, and honestly having him with me on that journey helped. I knew, and I suppose still know, that any help that one of us gets, we’ll share, and that any complaint that one of us has, we can complain to the other and they’ll understand. But, crucially – He’s not this helpful because he’s hypermobile. He’s helpful because he’s someone who just really gets on well with me, and the addition of a shared experience of hypermobility means that he can help on a technical level, as well as an emotive one.
My sister (You may have gathered by now that she’s not my sister by birth) has mental health problems that overlap with mine – Similarly, we didn’t meet or bond over our shared illness, it was the sport we both loved and our respective experiences in Japan. We probably both understand the strictures that mental illness place on interaction better than someone who wasn’t mentally ill, and thus our friendship has probably weathered better than it would have if only one of us had been mentally ill (I can’t imagine a non-mentally-ill person knowing quite so instinctively that sometimes I just need to be babysat and fed infinite cups of tea), but we’re not friends because of it. Again, there are plenty of people with comparable mental issues to myself who I just don’t get on with at all, because other than a diagnosis we have nothing in common.
My partner is, other than being as short-sighted as a mole-rat, a hundred percent healthy. He’s known me since before I was even honest with myself about my mental health, never mind my physical decline into extremely premature old age, and has taken everything with admirable sangfroid. I genuinely think that he’s one in a million for having continued to treat me as a worthwhile human being, rather than fleeing in disappointment as my increasing frailty has meant that it’s either fulfilling his dreams of travelling the world, or staying with me, and not both.
I’ve met good friends on the internet, and indeed some of my dearest internet friends are also hypermobile and very open about it online, but I didn’t meet them through diagnosis – I met them through work, through forums, through sculpting, and through each other. In every case, there was something that connected us first, before “…and I’m a zebra” came into it.
But, yes, looking for new friends. The problem is that, although I know that people who are themselves disabled are more likely to have empathy with my inabilities, the overlap of “Hypermobile people who also go to hypermobility support groups” for some reason seems to draw from a pool who have very little else in common with me than the diagnosis (All more middle-class than I am, all less countercultural than I am, all straighter than I am) and people who immediately introduce themselves as hypermobile online tend to also have very little in common with me (Usually more tenderly focused on social justice than I am, often closely-wedded to internet phenomena in a way that I’m not).
The reason I feel like I need more or new friends is basically because I’m in the awful situation of feeling both lonely and claustrophobic all the time. I have three people in my life that I can turn to – That is, that are within travelling distance and that can be spoken to face-to-face – and I worry that if I keep monopolising them I’m going to wear out my welcome. I’ve gone through long periods of this year in which I’ve been terrified to talk to any of them, because I’m so aware that I’ve done nothing worth talking about in years; All of my stories are from years ago, I can’t keep up with the news or science or media, and I create no new stuff of my own to talk about. Effectively, I’m very aware that there’s only a few conversations that I can have, and that I’ve basically had all of them with all of the people that I know. I feel like it’s unfair that my friends are still having experiences (Whether that be reading a new book, making a new piece of art, going to a new place or even just having a unique interaction with a new person, like most people get every day at work) and I have nothing to add to my half of the conversation other than to say “Oh, that’s really good and/or interesting”. Thus, obviously, anxiety – Worry that they’re going to notice that I have nothing to contribute other than assent and five-year-old stories of the last time I did anything fun, which to my ears always sounds like ill-bred bragging anyway, and that I frequently get confused and tired just having a normal conversation.
So, I want more friends, so that people will see me less often and notice that I’m boring less quickly. But, making new friends is difficult and involves social energy that I just don’t have. If I don’t have the focus to sew a pair of trousers or build simple furniture, I definitely don’t have the focus to cultivate a new relationship with another human.
Honestly, I’m not going to bother. I’m increasingly the king of staring into space and being quite content to be basically in storage.