I guess this is a post about autism, then

In August last year I moved house, and it was awful. We spent a few days painting the flat before we moved into it and I would manage about an hour of labour buoyed by the classic hits of Avril Lavigne and then have to dramatically collapse somewhere for another three. I’d been struggling with weird fatigue on and off for a couple of weeks (something I had, in a classic me fashion, put down to my imminent death) and by the time we were actually moving it just felt like everything was too much. I was just about getting by by eating about three times as much each day as I theoretically should have needed to, but I was still so unable to help with the actual lifting of boxes that I had to leave my parents to it and just go somewhere else. My band played a gig at the end of that week and halfway through our last rehearsal I had to lie on the floor for a while because singing was too exhausting: we cut the rehearsal short by an hour. I vividly remember the feeling that looking at things had become unbearably tiring so I kept having to close my eyes not because I was sleepy but just because I couldn’t process visual information anymore. I was getting palpitations and chest pains, and was convinced I had some kind of heart problem.

I won’t bore you with the whole story of what happened from there (I, like all sensible people would, responded to this situation by taking on more responsibility and started a job that… didn’t work out) but what I will tell you is that there is a name for what I was experiencing! It’s called burnout. You might have heard of burnout as a concept applied to people who have worked very hard for a very long time (it’s a word beloved of recently retired teachers and people in caring professions) – it’s essentially what happens when everything has been Too Much for longer than your brain and body can handle so the two of them just sort of… stop working properly. You start sleeping all the time. Going to the shop feels exhausting. You have weird physical symptoms that feel a biiiit like you might be dying. You can’t quite think straight and lose what you’re saying in the middle of saying it.

I had all these classic symptoms of burnout, but other weird stuff was happening to me as well. I couldn’t tolerate bright lights the way I had done in the past (I’d started getting migraines, which didn’t help), and I got spooked so badly by loud noises that sometimes I’d spontaneously burst into tears – it was like my brain couldn’t take in all the information the world was putting out anymore. I was suddenly much more anxious about people thinking I was stupid, which was largely because I felt like I wasn’t doing a good job at talking to them, like I suddenly didn’t really know what to say, and trying to work out what to say was exhausting. Because every interaction I had felt like an awkward conversation with a cab driver, I didn’t want to see anybody or go anywhere and I was emotionally all over the place. I was eating all the time and I couldn’t work out why, and even when that was more under control I was just eating the same things over and over again because other food didn’t feel ‘safe’. I couldn’t engage emotionally with things that felt complicated, so I could barely make decisions and as soon as things didn’t go the way I wanted I would be too overwhelmed to talk about what should happen next. My new job – serving people in a shop – felt like the hardest thing in the world, and I was happiest when I was asked to quietly unpack stock. I’d become intensely sensitive and anxious, somewhat inflexible, and socially avoidant.

It may or not surprise you, from this list of symptoms, that I’m autistic. I spent about a year prior to last September describing myself cagily as ‘probably a bit autistic’ to people close to me (I’ve since learned that’s not actually a good way of looking at autism – whether you ‘show’ more or less, you either are it or you aren’t. It’s like pregnancy that way), but in the midst of all this weirdness it became increasingly clear that 1) I was definitely autistic and 2) I was quite significantly more affected by said autism than I’d realised. I wasn’t burnt out because I’d been working too hard (in fact by most people’s estimations I’d barely been working, having spent the past year in part time study and then the summer doing fuck all) – I was burnt out because I’d spent over two decades existing in a world that didn’t particularly want to accommodate me the way I was, trying not to be the way I was and failing.

Burnout can be triggered in the short term by significant life events like graduations, breakups and house moves (ALL of which I had done in the 18 months before the Awful August), but at its core autistic burnout is the result of an autistic person spending a relatively prolonged period of time doing things or behaving in ways that exhaust them, usually in an effort to pretend at being ‘normal’. This is called masking. Once burnout hits, the mask slips and the person will mysteriously seem much more autistic than they did before, just like me. People socialised female are more likely to mask more successfully than those socialised male, which is one of the reasons why autistic girls tend to get missed in childhood, and subsequently often burn out dramatically in their late teens or early twenties.

Masking behaviours could be anything from making prolonged small talk despite feeling overwhelming anxiety about doing so, to making more eye contact than feels natural or comfortable, to learning not to react to certain sensory inputs that feel really bad. Imagine for a second that many normal things feel bad and uncomfortable, but you do them anyway because those things aren’t supposed to be hard and you have no way of understanding why they would be harder for you than everyone else – upsetting, huh? Often that is the undiagnosed autistic experience: it was certainly mine. For a lot of people masking is something they mostly only do in public, which when times are hard can lead to a kind of binary existence where at work or school an autistic person seems to be coping fairly well, but at home they are constantly melting down as an outlet for the stress of ‘passing’ all day, which might be expressed through self-harm, lack of executive function (ability to perform basic care tasks), disordered eating behaviours, explosive anger, or total shutdown and unresponsiveness. In the latter days of my job when I wasn’t coping well at all, I would mask all day and then as soon as I was out of eyeline of the shop I would be so overwhelmed by the strain of pretending that I wouldn’t be able to even get on my bus and get home, and would end up wandering around town at length in the dark, feeling distant and scared. When I was a teenager I used to get home from school and physically collapse on the floor. Not so much changes, as it turns out.

You may have got this impression but autism isn’t really the way a lot of people understand it. Most people understand autism according to the ‘functioning’ model, whereby autistics are deemed either ‘low-functioning’ (sometimes called severe) or ‘high-functioning’ (sometimes called Asperger’s), on a spectrum that stretches from ‘normal people’ to ‘very autistic’. Theoretically I’m high-functioning, because I don’t have learning difficulties and I can talk articulately and I know how to look like a person the way other people expect a person to look. In reality, though, functioning labels only really measure how autistic a person appears at a casual glance. It’s a ‘high-functioning’ behaviour to complete a full day of work and laugh at your coworkers’ jokes and chit-chat with customers, but it’s a ‘low-functioning’ behaviour to not be able to get on a bus alone – and yet both of these things were totally normal for me. And the job I was supposedly functioning well in gave me ridiculous anxiety and stress. I also absolutely routinely experience ‘catatonic meltdowns’ where I can’t move properly or speak or look at people – where essentially for a short period of time I suddenly look like a quite severely autistic person (usually in the BLOODY supermarket). These happened a lot when I was a teenager (see collapsing on the ground) and they’ve recurred this year. For these kinds of reasons some people have suggested that the autistic spectrum is actually more of an autistic wheel:

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From The Art of Autism – the post this comes from is actually really great.

So on this wheel I’d score unusually highly on language and perception, which I’m really very good at in fact partly BECAUSE I’m autistic, and pretty middling on motor skills, since mine are fairly average. Sensory tolerance and executive function, though, I’d get pretty low scores on, because I’m easily overwhelmed by heat/cold/noise/discomfort and I’m generally quite bad at practically taking care of myself. And as I’m sure you can imagine, this wheel doesn’t even nearly represent the incredibly multifaceted experience of being autistic – for instance, I’d score highly on social ability but low on social energy, if those categories were represented. I’m good at talking to people but it’s tiring as all hell and it makes me anxious. In this way it’s hard to neatly categorise people as ‘functioning well’ or ‘functioning badly’ when we function very differently at different times and in different areas of our lives and brains. And in addition, sometimes functioning well is bad for us.

I always hated school (which was ironic because I had a strong reputation as a ‘swot’) because to an unusually-functioning autistic brain school looks like a hellscape: unending social interactions. A lot of pressure to meet expectations but not always great clarity about exactly what those expectations are. Complicated social hierarchies. Crowds. Loud noises and silence, alternately. Incredibly rigid and inflexible rules which don’t allow for self-regulation or time out. Little movement allowed (we autistics love to wriggle, lemme tell you right now). Extended periods of needing to be present and to think straight. Lots of other people’s emotions to absorb, if we have that kind of brain (I do). TEENAGERS, who are the worst sheep in the world – teens en masse love conformity and fear difference. School is literally the worst place you could put a kid who needs to be careful of diminishing their unusually low-capacity ‘battery’, but it is an extremely good way to teach autistic kids to mask, for fear of the consequences of not masking. I learned to stop using long words that everyone else thought were weird and I thought were cool, to talk less, to be less enthusiastic about things, to move less and be more conscious of my body, to tolerate sounds/smells/sensations that made me want to scream, to stop being ‘weird’ in about a thousand different ways. I am still dealing with the damage that dealt me every single day.

Speaking of damage, having a group of people suddenly become your people is quite odd. Until recently I’ve not had any reason to know that by some estimations autistic people have a suicide rate 9 times greater than the average person, or to get angry that the ‘gold standard’ therapy for autistic kids in the USA is widely considered by actual autistic people to be abusive (its inventor used electric shocks and called autistics ‘not people in the psychological sense’). Finding out that you have some ownership of these collective struggles (and that in some ways they relate to your own personal struggles) is deeply upsetting. I’ve rarely felt as angry, or as broken, or as hopeless as I have learning about the very real obstacles and tragedies associated with an autism diagnosis. Autistics come up against overwhelming misunderstanding all the time, people who want to explain our own experience to us, treat us as sick and ‘cure’ us, call us broken and burdensome, dismiss our trauma and pain, wipe us from the face of the earth altogether… it’s not an easy ride. Our life expectancy is significantly lower than average. HOWEVER: there is hope, too. Understanding of autism is changing massively at the moment – my diagnosis is in fact precisely part of a wave of new understanding. And if you’re still reading this, then you’re a part of that wave of new understanding, too (yay!), because the more people who understand things like spectrums and functioning and masking and burnout, the better things will get for us. This is a very current issue, and I remain enormously hopeful that things will improve for the autistic community very soon.

Recovery, part 2

I haven’t written on this blog in a while. Over a year, in fact. This has been for a few reasons – prominent among them being that I’ve been back in uni, which has given me a lot less time and creative energy for other writing – and I don’t actually feel like I need to come back here and start updating constantly again, because I’ve got other shit to do. That being said, I’ve been doing a lot better for the last year than I was for several years before that, and given that I’ve talked in so much depth here about feeling awful, I felt like feeling not awful warranted a post.

For the last week, I’ve been sick. Really sick. Not in a worrying, hospital-visit kind of a way, but the kind of brutal cold that just doesn’t leave, that saps all your energy and makes you sad and leaves you marvelling at how much mucus the human body can contain. For a week, I’ve spent the majority of my time in bed. I’ve been glued to YouTube Let’s Play playlists and Vine compilations, I’ve been showering at 5pm or not at all, I’ve been sleeping badly at night and napping for most of the afternoon, I’ve been failing to make myself any real food, I’ve been watching the washing up pile up seemingly to the ceiling, I’ve barely gone outside, I’ve had to rearrange a number of important plans (including an exam!) which has made me very anxious, I’ve wanted nothing more than for everyone else to look after me, and I’ve been going out of my mind with boredom. It wasn’t until the other day that I realised why this all felt so familiar and so especially heinous – the last week has felt how my entire life used to feel. Like a struggle against perpetual tiredness and lack of motivation. Like I never achieve anything and I’m always just wasting time. This used to be the way of most days, only on top of all that shit I’d also be either feeling sick from how much I’d eaten or feeling weak from how little I’d eaten, and I’d be telling myself every second that I was a terrible person who didn’t deserve to be alive and that all of this was my fault.

Realising this was like a weird lightbulb moment, because it made me go: God I was sick. I’m here with this shitty cold feeling tired and awful and desperately waiting for it to finally pass, and this is almost exactly what I used to feel like constantly, for years, only it was worse, because beyond it there lurked The Darkness, always, feeling like a hole in the centre of who I was, which was scarier than any of the rest of it.

The pertinent question, especially given that this blog was supposed to be a place for people with mental illness to feel seen, is probably ‘how the fuck did I get better when I was so ill?’. I both do and don’t know the answer to that question. The answer is, mostly, a lot of hard work. I did years of therapy, of constant self-reflection, of journaling, of picking myself up after every awful day/week/month and trying again, and failing again, and repeating. Building a better relationship with myself was some of the hardest and most committed work I’ve ever done, and I think actually that was (and continues to be) the key to it: commitment. I treated myself like I was worth the effort, even though I didn’t believe I was. For years. I was horribly abusive to myself, and then I tried not to be, and failed, and tried, and maybe succeeded a little bit, and failed, and repeated. There is a theme here – I failed, a lot. And tried again. And failed again.

Looking back over this blog last week for some writing samples for a job application, I was struck by how often I was writing about things I didn’t really believe yet. Writing about forgiveness that I didn’t think I deserved, and acceptance that I didn’t feel, and letting go of expectations that I was still desperately clutching. I think what helped me, to some extent, was that I was always thinking about these things, always looking towards the next step, trying to find out how it was I wished I felt and acted and was, and then trying my very hardest to make that happen. I think what I didn’t realise when these concepts didn’t sink in right away was that this is, unfortunately, the work of years – possibly lifetimes. I’m still actively working on my mental health every day. I’ve been back in therapy sporadically since February (and boy did that make me feel like a failure, at the time) because I was feeling bad and anxious, and I’d lost sight of what I needed to do to take care of myself. I needed to be holding myself accountable again – I needed to recommit, again and again, to recovering.

It maybe doesn’t sound sunshiney and wonderful, but recovery is hard, and tiring, and takes consistent work. Doing better has not stopped being difficult, and sometimes on worse days The Darkness still feels like it’s lurking out there somewhere just waiting for me to slip up. BUT – and this is an important but – other things have stopped being difficult. I still count calories, and maybe I will forever, but I now find I can go a few weeks without incident in my eating and barely even think about it – it doesn’t feel hard to do that. I may still struggle to do the washing up every single time (it is my Everest) but I shower every morning and make phone calls and leave the house and drink enough water and those things don’t feel hard like they used to. The fact that those things are possible makes me confident that it is possible for other things to feel easier the more I practise them, too, and that one day all my self-care rituals and self-talk and checking in and setting very deliberate boundaries and making mistakes and learning bitterly from them won’t feel as hard as they do right now.

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I used to kill all of my plants, and now I don’t, and that’s progress.

If there is one thing that keeps making itself clear to me again and again, it is that you change in ways you cannot predict. Really, truly – I don’t just mean an unexpected job offer or a surprise pregnancy, events that are unpredictable, I mean you, as a person, will fundamentally change in ways that right now seem bizarre or impossible. You will want and care about and feel and believe different things. I have a relatively caring and non-abusive relationship with myself at the moment (even if it is difficult and littered with errors), which seemed like an impossibility just over a year ago. I am to some extent surrounded by different people now to those I was at that time, which also would have seemed impossible. Over time and with experience I have become less dogmatic, more nuanced, have less patience for people who see only in black and white – which doesn’t mean that I’m less political, but that I’ve found myself coming from a more empathetic place with it. I found new things I wanted that I didn’t know I would ever want: right now I’m planning how best to go about training to be a therapist. The thing about all of this is that change can be hard, and often involves loss, and that’s really truly shit. But if you keep doing the work then that change can only be for the better, and all you can do is be true to the person you’ve found yourself unexpectedly becoming, again and again. My duty of care is to the me I am right now, and I hope that in another year my future self will remember that her duty of care is not to me, but to her, in all her unexpected, unpredictable difference.

Things get better. There is light somewhere, if you keep looking. It’s important to acknowledge that recovery is hard, and fundamentally unfair, because not everyone has to do it and if you do then it’s probably because you bad lucked-out with a brain that doesn’t like serotonin or was affected by trauma outside your control. It is a practice that may or may not last a lifetime. But it is possible to feel better, and I say that to me of last spring, who was so sad, and also to me now, who is learning how not to be sad and remains hopeful that things can be better than they are right now, and that one day The Darkness will remain firmly in the bin where it belongs. And to you. It can happen, I promise.

Peace

Being scared isn’t what makes you good enough

I spent the first weekend of April on a retreat. (Yes, I have become one of those people, and I’m vaguely horrified at myself.) I stayed for three nights on the most lovely secluded Irish eco-farm, doing yoga and meditation and tramping around the woods and making things out of clay and telling stories round a campfire and being persuaded into singing for the group on a hillside (something that would normally send me into such an anxiety spiral if I wasn’t expecting it that I couldn’t even contemplate doing it). It was one of those experiences that feel important, like it was so rich in things to contemplate and absorb that it was difficult to imagine things in my life just going on the same as they had done before. I’m cured! I merrily thought, for about the 85th time. Everything is going to be happy and great from now on.

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In case you can’t imagine me in a wood, here I am in a wood.

Only then I came back, and I immediately fell into a really hard week: ‘immediately’ like ‘twenty minutes after landing back in Manchester’. I hadn’t even made it out of the airport before I was eating crisps and looking woefully into the middle distance, not hearing anything that was said to me. This particular ejection into The Pit felt especially unexpected because I’d just come away from such a lovely, straightforward long weekend – I had spent four days not stressing especially about what I was eating or worrying about how I looked or feeling scared for no reason or struggling to motivate myself. I spent four days being comparatively nice to myself, which made landing back into the middle of the nest of self-loathing that I’ve constructed for myself over many years all the more upsetting.

It took most of last week to actually get to the root of what was wrong. Other than the obvious answer – the same thing that’s been wrong for the last 4 years – there was something else, something that had made everything especially crappy and despairing precisely because I’d had such a successful time in Ireland. I spent a whole week feeling lost and distant and eating horribly before I happened to be asked the right question that sparked me monologuing for half an hour about the difference between Ireland and the rest of my life and why those differences existed (monologuing for half an hour is a patented Beth Booth Healing Technique. People who will let you monologue at them are precious). And while there are a number of practical differences between being on a retreat and not being, in fact the biggest difference by far, it became apparent, was in my head: I expected much less of myself when I was away. I was away from home and away from the internet, which meant there were certain pressures that just dropped away, yes, but it was more than that – having my days planned took away pressure to plan my own schedule and therefore to be productive. Being surrounded by people who had previously been strangers took away pressure to have a lovely time with my friends and family (one of my more ridiculous self-imposed pressures, but I spiral into anxiety if I feel like things are just okay when I’m with people I love, because I feel like they must think I’m boring or something). Being on a retreat took away pressure to be particularly funny or interesting, because as far as everyone else was concerned I was just there to do yoga and talk to trees. And, ironically, I had one of the most productive-feeling, entertaining, friendly, calm weekends I can remember. Because I wasn’t expecting that it should necessarily be any of those things.

I am all too aware that I have – and have always had – unrealistic expectations of myself. Many of us do. Challenging your own expectations is kind of therapy 101, to be honest, and something I covered a long time ago. But the funny ol’ thing about completely ingrained patterns you’ve been operating in for decades is that sometimes it takes having the same (or at least uncannily similar) realisations multiple times to actually get to the bottom of things. I first had the expectations realisation when I was first in therapy and talking about my own perfectionism. I had it again last December when I was talking through how I fill my time and how I wish I filled my time. And I had it again on Sunday afternoon (a festive Easter treat, as I’m sure you can imagine) when I realised that I’ve been holding onto certain expectations I have of myself because I fundamentally believe that without them I will be a terrible person*.

This is a kind of can’t-see-the-forest-for-the-trees level of expectation. I’ll try and explain what I mean by that; I put a lot of energy at the beginning of the year (after that December moment of clarity) into relaxing my expectations in a day to day sense. I try to have minimal expectations of what I will or won’t do on any given day. I rarely have more than two specific plans in one day, and try not to anticipate anything too much, whether that be writing or cooking or seeing people. I try to have backup plans – maybe I’ll write tomorrow, but maybe I’ll just play seven solid hours of Zelda instead (this was a frequently occurring pattern in March, when Breath of the Wild came out). The thing I didn’t notice during all this day-to-day expectation relaxing, though, was that while I might have been challenging my expectations about my activities on given days, I wasn’t at all challenging my expectations about the activity in a broader sense, as a kind of identity-level issue. So while I might not have expected myself to write on a given day, in my head not writing enough over a longer period of time would leave me ultimately unfulfilled and unhappy and boring, in a job I hated somewhere down the line, never having contributed anything of worth to the world. Which is ridiculous. But the more I thought about it, the more I realised that I have these same visions of total catastrophe attached to a failure to do any one of a number of things. I’m not waking up in the morning going ‘boy, I’m going to do 3 hours of yoga today followed by an hour of learning Welsh’ (although there was a time perhaps I would have, and then not), but failing to do enough yoga or learn enough Welsh on the broader scale would result in me gaining weight, again being unfulfilled, never being good enough to maybe teach one day, living my life never fully understanding my boyfriend, having kids whose language I didn’t speak. Every single thing I care about, I realise, I am motivating myself towards with fear. And fear is actually not a very good motivator, as well as obviously being incredibly fucking stressful.

The more scary something feels to me, the more I avoid it. And so the more expectation I have on myself to do something or else, the less likely I am to do it. The more I tell myself I’m a fraud of a musician who doesn’t play much music and so I should be playing more, the less music I play. The more I tell myself I’m boring and lazy because I don’t read enough so I should be reading more, the less I read. Instead I fall into activities that feel safe because they have no expectations associated with them. And there aren’t terribly many such activities. Mostly they all involve sitting in front of a laptop doing bugger all.

And yet I cling to these expectations that say that I should be constantly reading and doing yoga and cooking nutritious meals and learning languages and playing music and writing and having Big Laughs with my friends, because to let them go feels like accepting being somebody who does none of those things – which to me means being the worst version of myself, one who is lonely and unfulfilled and friendless and boring. But in reality, of course, all of these things are things I want. I could just as well motivate myself with that wanting, and I’d probably actually do more of them that I do now, considering I’m currently constantly running away from them because they feel scary.

I don’t have a nice concise wrap-up here. I wish I did. Like I say, this realisation of mine happened the day before yesterday – there’s only so much you can turn your life around in two days. But it feels like an important realisation to have had, and maybe an important realisation for other people. If we expected nothing of ourselves, we would still do things. We are not beings that run purely on fear. I need to make myself believe that somehow, and although at the moment I still feel at a bit of a loss as to how, I’ve had two for two not crappy days this week. I’ll take that, for now.

Peace

 

*I have to give credit to my dad for saying this to me in basically exactly these terms – about holding onto expectations because without them you’re scared you’ll be awful – on top of a fell the day before my Great Realisation. I didn’t quite process it completely then, but it hit home in a different conversation the next day. Thanks Dad.

Happy anniversary, me: the sequel

Last March I wrote what remains the most viewed post I’ve ever written on this blog about mental health – this one here – which was about approaching the 3-year anniversary of my eating disorder. It’s March again, and I’ve been keeping this blog for a bit over a year (which is pretty cool) and am also a further year deep into the Quagmire of Sad Eating Times (which is less cool), so here are some thoughts from my brain about things I’ve learned in the last twelve months.

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2016 me vs 2017 me. The THINGS I have SEEN. Image from the Huffington Post

  • We love the concept of positive thinking, but sometimes what we require is negative thinking. Sometimes we need to cry on someone about how hard things feel. Things usually feel less hard afterwards.
  • ‘Adulthood’ the way it looked when I was a kid is not so bad as it seemed to me then. I was sure that living apart from your family, many of your friends moving away, and your conversations always seeming to be ‘catching up’ rather than taking place entirely in stupid in-jokes was pretty much the worst thing that could happen. But less immediacy in your relationships does not mean you are alone, and good friendships survive and will always provide you with belly laughs.
  • In addition: most aspects of ‘adulthood’ are deceptively optional. You don’t have to move away from your family. You can live next door to them for your whole life if you want. Be a person the way that works for you.
  • Being uncomfortably honest is hard, but sometimes it’s incredibly worth it. And by uncomfortable I don’t mean being rude to someone and going ‘sorry I’m just honest, take me or leave me’, I mean telling somebody that some days you’re so scared you can hardly get out of bed. Or many people. On the internet.
  • Jalapeños remain one of life’s great joys. We should all eat delicious things that don’t stress us out, because some food at least should just be straightforwardly good. In a perfect world no food would be stressful, but ours is sadly imperfect and sometimes Cake Guilt is just a bit more than you can deal with.
  • It is important to make time to connect. The me of a few years back thought that anything that could possibly be seen as religious or spiritual was definitively Not For Me. But it’s possible to connect to that feeling of something bigger than you (a feeling I think actually probably everyone has experienced) in a way that doesn’t have to be about religion or spirituality. In fact I would argue that it’s important to. Every book you read that makes you feel something big or half hour of yoga that makes you mysteriously cry or moment you take to be grateful for something is important. Don’t sell yourself short by going through life and never connecting to the big picture.
  • People always deserve kindness. From other people, yeah fine – but most especially from themselves. Because other people aren’t always going to be kind to you, and sometimes actually other people shouldn’t have to be kind to you when you’ve hurt them, and at those times you’re the only person you’ve got to fall back on. Formulating your own opinion of yourself is important, both in the sense of seeing your strengths for what they are and of loving yourself enough to listen to other people when they tell you you’ve fucked up and doing better next time. Taking criticism and changing is an act of kindness to yourself as well as to others.
  • Ignore the people who have no actual criticism, because they just don’t like you.
  • Trying for something is more important than doing it perfectly, and that doesn’t just apply to externally judged things like work. Trying to be kind, trying to look after yourself, trying to make positive change – trying doesn’t mean you’ll always be successful, and all you can do is try again. Things aren’t immediate, nor are they linear. Keep trying.
  • There is so much to find lovely and wonderful in the world even at times when things are truly shit. It is possible to be thoroughly unhappy and still find moments of joy. It’s worth looking for them. Good TV shows and good music still get made in the bad times. Some nights you can still look up and see the stars.
  • Dye your hair. Or don’t. But find ways of presenting yourself the way you want to that aren’t to do with having the right face or body. Your face and your body are yours – decorate them. Perfect your cat eye. Get a tattoo. Life is short.
  • Sometimes things you thought could never possibly happen will actually happen. People will vote for or do terrible things. All you can do is show up for other people who are scared, because we need each other.

I wrote in March 2016 that although things with me were in some ways the worst they had ever been, I also wouldn’t go back to how they had been before if I had the chance. A year on, I stand by that sentiment. In the last year I have never stopped discovering significant-feeling new things, whether about myself or my brain or other people or the world. And although I’m sick, I also got sick in direct response to some particularly messed up ways that I was treating myself and generally processing the world, and I’m putting a ridiculous amount of energy into trying to unlearn those behaviours – I wouldn’t choose to go back to a point when I didn’t even necessarily notice them, let alone see them as harmful.

So my biggest take-away, probably, is an irritatingly cliched one: time changes things. Not necessarily for the better, but in the same way that every 7 years every cell in your body replaces itself and you are a completely new being, every X amount of time factors in your life move on and you find yourself in a completely new situation. Everything horrible now will be different in a year. I’m still not doing the best ever, and I’m still out of work and out of uni, but things have changed, and if I can trust in one thing it’s that they’ll continue to do so.

Peace

Reality is messy

Hey there. It’s been a while.

Something that happens to me a lot in one way or another is that big, difficult concepts – the kind that it’s hard to explain enough to make them fully understood, or even to verbalise in the first place – get broken down in the everyday vocabulary of my life into brief tidbits of wisdom or advice or information that by their very nature oversimplify things. As someone who interacts quite actively with a community of mental health and body positivity advocates online and who also has many real-life conversations with friends and family about mental health, you inevitably end up passing around different people’s useful (or less useful) ways of thinking about things – for example, tonight my mum was telling me about someone she had read who talks about depression as what happens when a flawed way of thinking or coping becomes too much and things break down. The thing about words like this is that however useful they may be – and they often are – they are never going to be enough. It’s one of the reasons I write this blog: you need more explanation, more words, to properly talk about these things. A soundbite, a quotable phrase, is never going to be able to explain depression, whether that’s why it happens or what it’s like to live with it or how to get it to go away.

That said, I think we forget a lot of the time that anyone who writes about their experiences of these things is always, always going to be keeping something back. Mental illness is a messy, difficult, often shameful thing. People would generally rather do many unpleasant things than talk about the reality of themselves at their most broken and vulnerable and ineffective: even inhuman, or at least that’s how it can feel. And that’s fair enough! It’s hard to talk about yourself in that way. I would like to think I am very honest about my experience of my various adventures in mental health, but I will inevitably keep things back that I don’t even necessarily realise that I am. But the important thing to note here is essentially this: even if you are reading something written by the Most Depressed Person on Earth, by the Guru of Eating Disorders, by the Poster Person of Bipolar, whatever, those words do not reflect reality. At least not completely.

Here’s what I mean: there are many people I respect the hell out of who write intelligent, insightful things about mental health. One such person who I follow on Twitter once wrote a string of tweets about how they have learned over time to notice themselves beginning to feel and do things that they associate with periods of depression, and that they have very specific ways that they deal with themselves when they notice those signs. They have very particular self-care rituals; they deliberately take time to look after themselves. This is undoubtedly a very good practice, and good advice to follow.

The thing is, though, that advice like this is rarely given with the disclaimer ‘I try to act in this way but often fail’, and even when it is we often ignore it. When we read things written by other people about looking after ourselves, about understanding our own brains, what we have to understand is that they make something that is inherently messy and full of failures sound like a straightforward process, as though it were asking ourselves what we feel like eating for tea and then cooking the appropriate thing accordingly (do I feel depressed? Then I’ll have a bubble bath, crisis averted). In reality, I, like many people, am full of good advice that I cannot for the life of me take. I use an app to track some of the habits that I know are good for me – yoga, writing things, getting up early and having a shower right away – but the funny ol’ thing about depression is that it makes dealing with itself very bloody difficult. I struggle enormously to motivate myself to do those things, and then when I have bad days after a period of failing to keep on top of those habits I tend to blame myself because I clearly haven’t been trying hard enough to be well.

‘Self-care’ as a concept is a simplification of a complicated set of behaviours and decisions that we perform to try and help ourselves to the best of our ability. I feel like self-care as a response to poor mental health is pretty widely accepted as a Good Thing – and indeed self-care is enormously important around mental health! – but when we say ‘self-care’ I think half the time we don’t really know what we mean. For me, self-care in theory means doing those habits that I track with my app. And yet it’s a rare day that I actually do them all. Does that mean that I’m not practising self-care? Well no, because self-care in practice means trying to do those things. The reality is not that self-care practices are a bandage to put on periods of difficulty to fix them, but that periods of difficulty grab hold in all kinds of sneaky ways and attempting to do the self-care that we can at the time is one useful way of trying to limit their bad effects.

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Or more accurately – I try. Maybe. Sometimes. When I’m not struggling just to be alive. Image from BHMA

Reality is messy – I think this is true in general. But when it comes to poor mental health, it is even truer. Every time somebody says something insightful about dealing with mental illness, behind that single soundbite of wisdom is probably – if they’ve walked the walk – many days of ‘failing’, many days in which they couldn’t even begin to follow their own advice. Soundbite wisdom just makes it sound like everyone else is doing okay and dealing with their poor health in healthy ways, when in reality I think often that kind of advice is a desperate attempt to mine something useful out of truly awful circumstances. When I write blogs that contain any kind of message that says ‘this is a Good Idea, maybe’, it is backed up by countless days of truly awful times. Please know that reality is always messy. And we care for ourselves the best we can, and sometimes that’s not very well.

I hope you’re doing well today, pal.

Peace

The earliest of interventions

It’s difficult to talk about early intervention, as is the theme of this year’s Eating Disorders Awareness Week, without talking about early warning signs – and it’s difficult to talk about early warning signs without talking about how our entire culture is essentially one gigantic early warning sign for eating problems.

A large part of what makes it so hard to tell when someone is suffering the early stages of an eating disorder in the world today is that their words and behaviours, from an outside perspective, are often not so very far from the norm. It is absolutely standard to refer to food in terms of morality, by which system having cake is ‘being bad’ and having a salad is ‘being good’. It is absolutely standard to be aware of the calories you consume – they print them on the front of the packaging, after all. It is absolutely standard to be avoiding at least one type of food, because you read some article on the internet that told you it was evil – anything from juice to gluten to oil to carbs to refined sugar. It is absolutely standard to know exactly how much you weigh. It is absolutely standard to fear gaining weight and want to lose weight. It is absolutely standard to compensate for an ‘indulgent’ meal by hitting the gym. It is absolutely standard to be able to list at a moment’s notice all of the parts of your body that you hate. We congratulate people’s transformations when they post about their weight loss, but we never see before and after shots of people’s weight gain, unless it’s gym gains and therefore muscle, which we deem acceptable. We laud thinness. We abhor fatness. We diet incessantly. We publish and read magazine articles about which celebrities have gained weight or have cellulite. We are constantly commenting on food choices and having our food choices commented on – “Ooh you’ve got a lot there, haha!” “No, go on, you have to have some, I made it specially.” “Are you sure that’s enough?” “It’s not her size that bothers me, it’s her health I’m worried about.” We don’t trust our inherent knowledge of what our own bodies need, or anyone else’s of what their bodies need. We don’t mind our own fucking business about what other people eat. I have been guilty of at least some of these things. We all have.

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How to deal with people who won’t stay tf in their lane.jpg

Eating disorders are unequivocally not just an internalisation of this shitty food culture, and I’m not trying to argue that they are – EDs are mental illnesses, they are serious and undeliberate, they are not choices, they are not just diets taken a bit too far. Of course, that internalisation of shitty food culture in itself can unquestionably be incredibly damaging, but it is not the same thing as an ED. But when it’s hard to tell the difference between disordered behaviours and those that are normal in a world that is equal parts obsessed with and scared of food and eating, how can we not conclude that that shitty food culture has an impact? In a theoretical world where it was always acceptable to eat what you wanted and to look however you looked, how many eating disorders would we see? Not none, but maybe not millions.

I say all of this because while it is obviously of critical importance to get ED sufferers appropriate help quickly, the earliest intervention possible, to my mind, is to dismantle the culture that fosters EDs in the first place. And while I wish I could single-handedly change our societal thinking and language around this stuff, I can’t. The only way that things will begin to change is if we, as individuals, are critical of how we talk about and approach food and call out or educate other people when they aren’t being careful with their own language.

So, this March, if you actually do care about early intervention for ED sufferers, do me a favour – be aware of the things you say and the things you hear around food. Be happy for people when they eat in a way that makes them happy, regardless of what that means for them, a little or a lot. Challenge your own ideas about weight, fatness, and dieting. Be compassionate towards the many people who live in a body they hate, and try to help them not hate it anymore. Look up some body positive online spaces, and try to learn something from them. Whether we are fostering a world in which it is harder for EDs to get their claws into us in the first place or one in which people like me recovering from EDs can feel safer in trying to accept our bodies and eventually be able to eat doughnuts without crying again, it’ll be a better one.

Peace

Taking it UNeasy (or Making Your Zero Chill Work for Good not Evil)

When I feel crap, I have this little reflexive brain circuit that engages. It’s very convincing, and it says that feeling crap means I should ‘take it easy’. In theory, taking it easy means removing pressures and being gentle with myself; in practise, it looks like me burying myself in ten blankets and doing nothing requiring any effort at all until I have somehow swaddled myself into feeling better. I eat only microwaveable foods and don only sweatpants. I read and watch Netflix and play video games and don’t leave the house. When you’re sick, after all, you take it easy. When you’re stressed you take it easy. If I’m feeling a particular form of sick and stressed, then surely I should be taking it easy, too?

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Anxious burrito is my permanent mode of being. Image from EMGN.com

Also, of course – if you’re me, anyway – you’ve spent a long time getting around to the idea that it’s actually okay and important to take it easy, and so as well as that reflexive brain circuit there’s another, more informed bit of brain going ‘Yes, good, it’s important to take it easy! Look after yourself! I am always telling other people to do this and must do it myself!’. This also makes sense. Taking it easy should by all rights make me feel better.

In reality, though, I constantly find that taking it easy actually has extremely limited use. Sitting around doing nothing in itself makes me feel crap. Being passive and unproductive doesn’t feel very convincingly like looking after myself, because I don’t actually have to do anything at all, so my ‘looking after’ is pretty half-arsed; if your friend came to you needing some care and the best you could do was put them in a warm place and tell them to stay there until they felt better, they’d probably be a little bit annoyed. And yet I continue to believe in the healing power of such classic moves as Not Showering and Sitting Around in My Dressing Gown.

Hang on a second, I hear you cry. Don’t those things you’re describing as ‘taking it easy’ sound surprisingly like… symptoms of depression? Oh boy. Yes, they do. Funny how that happens, isn’t it? In trying to relieve pressures that I perceive as being put upon me in order to make myself feel more mentally well, I am actually doing exactly the very things that my illness wants me to do. See, what’s going on in that reflexive brain circuit is actually a nice little false equivalence being used as evidence for the circuit to validate itself. Yeah, when you’re sick or stressed you take it easy… but that is because in those situations what your body or brain needs is to take is easy because you haven’t been taking it easy enough, which has resulted in sickness/stress/injury/whatever. I’ve been there loads of times in the past (when I used to actually get stuff done, oh the olden days) – as a young teenage thang I would regularly stress myself out over school work, get sick and spend a couple of days in bed. But taking it easy is not remotely the only way of taking care of yourself. If you do yourself some significant physical damage, say, and are laid up for a long time, you might have to go through physical therapy in order to get well again, which is decidedly not taking it easy; it’s taking it pretty freaking hard. But without that hard work, you will continue to feel worse in the long run.

For the Average Human, bingeing a Netflix show in the manner of one mainlining crack might be super therapeutic, because it’s what their everyday life doesn’t provide much space for – doing very little. For me, though, bingeing Netflix is something that I could, if I wanted to, do every single day – which makes it a sick behaviour, not a therapeutic one.

I’ve spent January doing yoga every day (okay, except for two days that I subsequently caught up), because the YouTube channel I follow (Yoga With Adriene, who is wonderful) is doing a 31 day programme over the course of the month and I needed to kick my own butt back into doing regular yoga so I took full advantage of that fact. The theme of yesterday’s practice was ‘discipline’. Discipline really extremely doesn’t sound like a good time fun time; it sounds like getting a detention, or being demoted. But I was reading this accompanying email that was all about how sometimes doing things you don’t want to do (yoga) is good for you (yoga) and it’s important to power through and do those things anyway (yoga), and I was really, really struck by how often actually the most helpful of all the self-care I perform requires… discipline. Crackflix needs no discipline from me, but making myself proper food does. Playing four solid hours of a video game doesn’t, but being vaguely physically active does. Napping doesn’t, but making social plans does.

The biggest problem with this is that my shit brain is extremely opposed to doing… well, most things. Mental illness saps your motivation. My mornings, for example, tend to begin with the great struggle between Girl and Hygiene. I hate showering, because my brain hates expending any and all energy and wants to lie in a heap forever. And if the reflex circuit engages before I notice what’s going on, then I can sit around for hours avoiding showering in the name of ‘taking it easy’ – usually feeling pretty bloody awful, because doing nothing is a sick behaviour, not a well one. But, heyo, you guessed it – showering makes me feel better. As pathetic as it sounds, showering is a perfect example of a self-care activity that requires discipline to carry out and is not actually ‘taking it easy’ at all. Many people have probably never thought this hard about showering in their entire lives. I have to think hard about it almost every day.

The saving grace of this ridiculous state of affairs is that, as a person, I have absolutely no chill whatsoever. Usually this is a curse: I absolutely cannot let myself off things. I cannot let things go. I cannot accept that not everyone will like me. When it comes to discipline, however, it is (for once) a blessing. If there is one thing that can carry me through the daily Battle With Hygiene (and subsequent Skirmish With Cookery and Fray With Physical Exertion) it is my obsessive weirdo brain. I might wake up every single day wanting to ‘take it easy’, but as my cortex begins its daily screeching routine it can often actually quite successfully get me onto a yoga mat by virtue of pure uptightness and inability to be calm for 3 seconds together.

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Oh hey look it’s a portrait of me. Image by ClayGrahamArt

Most people, I must admit, are not nearly so professionally useless as I am. Most people with some degree of mental ill health (not all, but most) are actually still working/studying/doing something else with themselves – some of us can carry on, some of us can’t. We’re different people. I’ve been writing stuff and making plans, sure, so it’s not like I’m doing nothing, but I don’t have any Official Responsibilities whatsoever at the current time because the ones I had were making me sicker. So while my life needs a good dose of discipline by way of my no-chill-zone brain harnessing its powers for good, most people probably need something that’s a little more of a… mixed economy. I think what’s important is actually to recognise the spaces in your life that need a little more chill, and the spaces that need a little less. A lot of people probably need a good dose of taking it easy in their work or personal lives – to let go of some unnecessary pressures they might be putting on themselves (eg. to get a First rather than simply to graduate HELLO THERE PAST ME) or to make some time for quality relaxation by reading a book in their lunch break, or by blocking themselves out time to spend alone or something. But those same people might also suffer, for example, from the weekend curse of taking-it-too-easy: not doing any of the things that will make you feel better (making real food, exercising, etc) because your brain’s reflex is to lie around doing nothing until you feel over-easy. Like an egg.

I think my point is just that actually, although it’s a really unfun word, discipline is kind of key. It takes discipline to relax sometimes when your brain is hollering at you to keep stressing about everything – trust me, for some people (and sometimes for me!) 4 hours of video gaming is an act of pure discipline. Equally, it can take discipline to do active self-care rather than just sitting around feeling useless (for which there is most definitely a place and time – I love Netflix, but sometimes it is my friend and sometimes it is my enemy). What’s important, ultimately, is being in touch enough with how you feel to know which one you need, and then engaging the least amount of chill you can muster to yell yourself into doing whichever one that is.

Also, for anyone who’s interested, I’m actually doing pretty well at the moment. January’s been a month of only 2 red circles on the calendar, thus far – 2 bad days in 22 good ones. Not too shabby odds considering in the past it’s often been 3 out of 4 days are bad.

Peace

 

(PS – I’m kidding about the yelling. Mostly. Be nice to yourself. Yell… kindly.)