On Realising I’m Disabled

[Trigger warnings: all sorts of things, but mostly suicidal ideation]

I came to a realisation in the last couple of days — I’m disabled.

I don’t mean that I just realised that the label “disabled” fit me — I’ve been using it about myself for a couple of years — but that it actually describes me. I’ve felt for a while like I was in the category “disabled” for various reasons, but that I’m not *actually* disabled, not properly disabled like some of my friends.

But then in the last few days I’ve been thinking about how some of the normal knocks of a freelancer’s life affect me disproportionately, so much so that after a couple of rejections I’ve spent most of the week contemplating suicide (not going to act on it because I don’t want to upset my wife or parents, don’t worry), and I realised for the first time, in my gut, that things just *actually are* harder for me because of my disabilities and chronic conditions. Most of them on their own don’t seem like they’re much, but put together, they really do cause a lot of problems.

I’m autistic, which I’ve mentioned before. I also have psoriasis, which means my skin is often uncomfortable. I *also* have psoriatic arthritis, which as well as meaning I’m often in pain and can rarely stand unaided for even a couple of minutes also means I’m pretty much permanently fatigued and brain-fogged. And I’m dyspraxic. I have depression and anxiety, and hypertension (the latter mostly controlled by medicine, except when I’m stressed, which I always am). I almost certainly have delayed sleep-phase syndrome (a condition which is untreatable so for which I’ve never secured diagnosis, but which makes fitting into normal diurnal cycles near-impossible), and I *do* have sleep apnoea (which is controlled by my CPAP machine, but not completely). I have asthma (mostly under control) and insulin resistance. I have weird immune-system stuff which means I have to avoid all sorts of foods and also get all sorts of diseases.

And that’s not even counting all the weird stuff which is just stuff-my-body-does, like the way my feet are both permanently numb but *also* excruciatingly sensitive to the slightest touch (no, I don’t know how that can be the case either. It seems like something that should be logically impossible. Nevertheless).

I’m basically broken, both physically and mentally, and have been since at least 2011 or so — that was the point where the constant pressure to try to cope despite the stuff I had then (like autism and delayed sleep phase syndrome) triggered a whole bunch of the other stuff (like the hypertension and the arthritis) which has since never gone away.

But I still think of myself as basically baseline-normal. I just tend to assume that *everyone* is so completely unsuited to primate pack hierarchies that just talking to an authority figure makes their blood pressure get into imminent-stroke range, and that everyone in a day job is staggering in to work after two hours’ sleep because they couldn’t get to sleep til 6AM the night before, and that when they’re typing their hands are in agony, and…

And it’s only really this week that I’ve grokked, properly, that this is not the case. Like, I’ve known it intellectually, but I’m still used to instinctually assuming that things are about as difficult for everyone else as they are for me (or even assuming that when it comes to most things, they’re easier for me — before the arthritis I was a very, *very* fast thinker, and I’m also an allocishet white man, so in that way at least I always had a tremendous advantage over other people when it comes to things like getting jobs). And it’s only now I’m really realising that just because there’s not a single obvious thing I can point to like being in a wheelchair or having no sight, it doesn’t mean that I’m not struggling more than most people.

But… in a major way, whether I’m disabled or not *doesn’t matter*. Because I still have to do all the things that everyone else has to do. I still have to earn a living, pay a mortgage, walk the dog, and it doesn’t really matter that sometimes — a lot of the time — those things are so difficult for me that death honestly seems like an infinitely preferable option. And I still have to do all the things that I feel obliged to do — the political activism and so on.

But what that’s meant is that for the last seven years, my horizons have been getting narrower and narrower, and that’s been showing in this blog. I’ve been less able to focus, I’ve been less able to seek out new things, I’ve not socialised *at all*. I basically don’t leave the house. I go to a games night at some friends’ house one night a month, except it’s really only about one night in every three months, and other than that I just don’t see people. In the last month, the *only* in-person interactions I’ve had with anyone have been at the shop when buying food, games night (which I did attend this month), lending some musical instruments to a friend, and two trips to the comic shop. That’s a total of maybe five or six hours in a month spent with another human who isn’t my wife. And this has been a busier-than-normal month for me, a tiring, hectic, merry-go-round of a social whirl.

Yet I’ve still refused to see myself as “really” disabled, still had the disability equivalent of impostor syndrome, still convinced I’m faking it as I lie on the couch crying because I can never, no matter how I push myself, never do enough work to make myself and my wife financially secure for anything more than a month or so in advance, never have the social skills to do the self-publicist thing you need to do to have any kind of freelance career, but even more than that I can never do the stuff that’s needed for a day job (had I not switched to freelancing two years ago, I would be dead now without a hint of exaggeration).

I don’t know what to do with this revelation. There’s not even much I *can* do with it. It’s not like I can *stop* working and money will magically appear because I’m disabled, it’s not like I’ll suddenly be able to walk twenty miles at a session again like I could when I was in my early thirties before the arthritis hit. It’s not like anything at all has changed in any way.

But I thought it probably worth mentioning here. It might help explain why there have been fewer of the extended flights of imagination here in recent years (though I’m still going to post many more Good Posts, for example — there’s another six thousand words of them sat in a directory waiting to be uploaded here), but mostly, I think it just worth saying these things.

So anyway, that’s it, I’m disabled. I realise that now.

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5 Responses to On Realising I’m Disabled

  1. andrewducker says:

    What you can do is tell yourself, whenever you start pressuring yourself to deliver seventeen articles, three books, and a new British constitution, that you are disabled, and then cut yourself some slack.

    • That’s true, but the pressure for articles and books is largely the pressure of lack of financial security, rather than something I do to myself. I *have* been trying to cut myself more slack about political activism, but then I accidentally got myself elected on to the SLF council…

  2. Dear Andrew
    So sorry to hear you are going through so much pain and misery with your various illnesses. Speaking as a fellow blogger/music writer with a disability (m.e. mostly – but I have the dyspraxia too, so my sympathies!) I know how hard it is to do what we do, not just with what we do but with the daily life stuff that happens all around it. Speaking as a fan of your blog what you achieve despite your illnesses makes you officially super-human – most writers who are well couldn’t do what you do. My life got a lot easier once I acknowledged that I was ill, that I couldn’t do things that everybody around me could and that it was the new ‘normal’. I hope it is the same for you too and people give you the help you need when you reach out for it. Though it may seem odd that you can be disabled without consciously realising it I totally identify: illness is the box that you see other people fit into and with illnesses that come and go it doesn’t always feel the same applies to you. However it does: you are entitled to rest days as much as any sick person and even with so many financial pressures the odd missed deadline here and there won’t make that much difference if it helps you recover from a hard day’s writing session. Believe me I’ve learnt that the hard way round! Judging by your prodigious output you are not broken at all, you are still a writing machine with an output any well person would be proud to match. However you also have a long list of illnesses that are very much real and you very much deserve to look after yourself. You don’t need to stop, just postpone. Give yourself a break from time to time: get someone else to walk the dog, get your friends to come to you to socialise, get the benefits you’re entitled to, all the shortcuts really help. Good luck with everything and get better soon, the blogging world would be an emptier and less interesting place without you! 8>)

  3. Tam says:

    I suspect your state of mind might be more typical than you realise. For most of my adult life I’ve been fascinated by writings from the post crash 1930s, in part because there was a fascinating pessimism (and often resignation) about all aspects of life that was bracingly different from contemporary life. In recent (post credit crunch) years, I’ve been very alert to noticing some of those same patterns re-emerging, including the tendency of people to ‘blame’ themselves for changes to our wider society that many others are also being affected by but social conventions prevent them from discussing.

    Obviously there aren’t any easy answers to any of this, but as far as possible, it might help to stop thinking all of your current problems are about your own personal failings because most of them almost certainly aren’t.

    Another suggestion for the future, (although I realise you’re not in the right state of mind for it just now) might be to consider getting in touch with a charity for befriending the elderly? It can be a rewarding activity which helps put you in touch with your community and there are a lot of isolated pensioners, (particuarly blokes) who are experiencing similar anxieties to yourself and sometimes just a bit of human contact with someone unfamiliar can be enough to stop one’s mind volunteering unhelpful thoughts for at least a while.

    Best wishes and I hope things start to improve for you

  4. plok says:

    Maybe this would be a good time to mention that I frequently use you and Holly as examples to people I know who don’t see a way out, who feel trapped by circumstance and adversity, who can’t see a future at some critical moment or other. When talking to these friends in such a situation, I feel very confident that you’ll make as good an example to them as you do to me: though pretty profound adversity, you two have managed to make incremental, additive steps toward a better living condition. I don’t feel 100% okay with just straight-up playing devil’s advocate here, but…

    I mean, it’s a fact that for your wedding present the UK government handed you a big ol’ pile of TRAUMA, and said “don’t worry about opening it all at once, that’s a ten-year supply”. How could you tell them you already had enough trauma, plenty of trauma? And there are issues of health and mental health, there are pressures of expectation, there are all these things, and I always tell my friends “don’t think they got through because they just had some magical positive attitude, or because their upper lips are just so darn stiff, that’s NOT HOW THIS HAPPENED…!”

    I find it inspiring, too. You did not, in fact, drop dead at your office job, and Andrew that is a WIN, you need to put that one up on the board as a win. Holly now not only has a white cane and freakin’ citizenship, but is studying linguistics, linguistics by God, and I am still wrapping my head around how awesome that is. You don’t have an awful landlord. You have an affectionate dog. You have room enough to store all your stuff? Little things count, too. You’re a professional writer with a natural ability to work that puts the rest of us to shame. And you’re alive.

    And you probably have PTSD or something.

    I feel like if I were just to be a Pollyanna here it wouldn’t really be a respectful note to strike, so I’m deliberately not attempting any super-positivity. I am, however, trying to provide a counterweight or two? Speaking for myself, I have an enormous sympathy for you, for all the crap that makes your life hard, and also I appeciate ENORMOUSLY the things you’ve accomplished, they are all impressive things in more than one way and I think you should be very proud of them. So if realizing you’re disabled were to help you see yourself more as I see you, in that way, I think maybe I’d have to call it a good thing?

    Well, greater self-understanding is always good, probably.

    Though I confess I’d be afraid to try it, myself.

    But — obviously — that’s me!

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