Feminist Aspie

Where I’ve Been: A long whine about my brain

on December 29, 2014

Long time, no see! Again. I’m sorry for disappearing off the face of the metaphorical planet. Again. This post will basically consist of me whining about my brain. Again. Having said that, I’ve been meaning to write this post for quite a while now, and with my blogversary this Tuesday and no sign that I’ll magically be really motivated and Good At This again any time soon, I suppose there’s no time like the present! Basically, I want to try and explain from scratch some mental-health-ish problems I’ve been having, as if explaining them to my parents, because that’s my eventual aim before I leave home again next week; I struggle with finding the right words verbally at the best of times and as you can probably imagine this is a particularly hard topic to find words for, so I’m hoping that even though they’ll probably never see this post, it will help to structure everything in my own head. This is also difficult, so I’ve ended up with a really long, quite whiny post, so I apologise for that; I also wanted to offer an explanation for my constant disappearances, so I guess I’m reaching out to people here too.

When I’ve spoken to friends, I’ve called it “brainbug” just because I don’t have any more concrete terms, so it’s worth noting at this point that despite that word, I haven’t totally ruled out the possibility that it’s not a “bug” at all but rather autistic burnout or something else along autism-related lines (that’s also why I’ve used the tags I’ve used). I usually lean towards the idea that it’s something else, though, mainly because unlike autism, I see it as a Bad Horrible Thing that I’d gladly get rid of in a heartbeat. I’ve spent a while tonight planning out this post, and I think I’ve managed to split the brainbug into three main sections, although they’re all quite interlinked:

1.) The anxiety stuff. In many ways seems to be part-and-parcel of life on the spectrum. Sensory issues are a thing. Personally, I panic in crowds, I don’t handle lots of loud conflicting noises well, and the reason I couldn’t sleep on Christmas Eve was less to do with excitement of the next day and more to do with the jumpers we were all going to wear (this seems really silly to me in hindsight, because those things were actually SO comfy!). To an extent, this is not new. Yet it’s increasing, slowly but steadily over time – my anxiety and fear around this stuff has gone through the roof, even though my actual tolerance hasn’t decreased to match.

Having said that, a large portion of my issues under the “anxiety” section aren’t really to do with sensory overload at all, but are more social; I don’t know, talking to people just seems to be harder now than it was before starting university, especially when I think back to how loud, enthusiastic and at times too-brutally-honest I was when I was younger. This may or may not be due to point 2. What really scares me is that I’ve recently realised I’ve sort of accepted terrified!Me as the new, well, me – the new normal. Sometimes I make it into a running joke, and I don’t think there’s anything wrong with that, but I worry that I’m falling into the trap of pretending everything is okay when that’s not always the case.

2.) The huge sense of inadequacy. This has also gradually become my “normal”; I’ve noticed this alongside point 1, but in hindsight it may have been around in some more subtle form since, let’s say, secondary school. At the heart is a truckload of internalised ableism I somehow still haven’t managed to shift. Everyone else can cope with this, feels at ease with that, enjoys this, doesn’t enjoy that, and definitely doesn’t do those things, so why are you so weird?! Rationally, I know this isn’t fair, but at the same time, I worry incessantly about what everyone else must think of me and, sadly, that IS the way a lot of people think.

At the same time, I always feel like I’m just not cut out to be an adult (she says, at 20 years old) because the others at uni seem to find all the basic adult-ing stuff so easy and can deal with that and their studies and their much bigger social lives and their societies and their sports and their applications and all the other people are all doing so much more than me, and this is much harder to just fight away with logic because usually it’s actually true. Thinking about it tonight, a lot of this is probably fuelled by point 3.

In either case, this often leads to huge negative thought spirals. Huge spirals, and hugely negative. It’s really not healthy, and probably exacerbates point 3.

3.) The near-total lack of spare brain-energy. Again, that’s a term I’ve made up for lack of anything better – I’m not entirely sure how broadly the spoon theory can be applied and I don’t want to appropriate it from people with chronic illnesses, but think of it as an at least vaguely accurate analogy. As I said above, everyone else seems to be able to handle so much all at once, not just in terms of work/serious stuff but also things like starting new hobbies and even keeping up with loads of different TV shows and film. In contrast, I don’t seem to be able to juggle all the balls at once, and if I actively try and pick something up again, it’s at the expense of something else… and this is the part where regular readers may wonder how I hadn’t managed to notice this until recently! This is the main underlying reason why the blog keeps disappearing. The other thing I’ve been neglecting long-term is my guitar; I suppose it doesn’t help that I’m not at home very often anyway, but even when I am, it’s something I always seem to put off for no real reason other than lack of brain-energy.

In the last month or so, though, I’ve realised that during my first term abroad I’ve inadvertently “dropped” every non-essential, not-strictly-scheduled, not-time-sensitive thing, up to and including my Netflix catch-up plans even though watching TV theoretically requires virtually zero effort. I do work on time because there are deadlines. I go out with friends because we’ve set a time for it. I Skype home because I do that on two specific evenings a week. I used to blog every Wednesday afternoon but one week while I was writing, plans were changed and it really set off point 2, and this is the first time I’ve blogged since that day just because the routine was thrown off track once. I do laundry roughly every week because it needs to be done or I won’t have anything to wear. I buy food and cook it and eat it because it is literally necessary for survival, and I’m really not very good at it, but at least I am actually doing this now; there were a couple of weeks this term where even that seemed impossible, and I think it’s only since inadvertently-dropping-everything that I’ve at least felt stable again in the literally-basic-self-care department.

What I’m not doing is blogging regularly or even following the Twitter feed. Or filling in and sending off endless applications for internships – I’ve done two (one rejected, one pending) and would like to get a third done, but I’m leaving it a bit late, and I have exams next month. Or doing anything else about the fact that I have absolutely no idea what I actually want to do with my life and should probably sort that out so I can start gaining all the necessary experience. Or learning to cook more different things. Or learning other useful and/or necessary adulting stuff. Or watching Buffy the Vampire Slayer – it sounds like a silly thing to think about, but I started way back in August, am really enjoying it, and don’t understand why I can’t motivate myself to watch one episode every so often when a lot of other students can manage entire seasons in a matter of days. Even my plans to re-watch all of new Doctor Who in French slowed to a stop towards the end of series 1, and come on, that’s Doctor Who, no motivation problems there. And for what? I have less work this year than I’ve had for the last two years. I haven’t managed to get into any extra-curricular activities like those I’d been doing at my UK university. And at home, all of that goes away anyway. I don’t know where the time, or the brain-energy, is going. Putting all this together, I guess I’m concerned. It makes me feel like I can’t possibly handle being an a “proper adult” which is a huge factor behind point 2.

In the last few months – since the summer, let’s say – all this has had some other effects. I’m not really sure how to word this, but emotionally, things seem to be coming to a head much more often. This time last year, I’d say I only cried during a meltdown or (for some reason) if close family members were arguing. These days, crying sometimes happens just on my own in my room (so without any meltdown-inducing sensory input), often when talking to friends online about the brainbug, but occasionally also as a direct result of not being able to Just Deal With Things like everyone around me. It’s definitely not an autistic meltdown, because I recover pretty easily and usually feel better afterwards. I’m not even sure it’s a bad thing to be expressing emotions more often; it’s just another difference I’ve observed. In addition, thanks to my year abroad I’ve made quite a few new friends, and it’s made me think about how much I pass as neurotypical – basically, I definitely used to, but now I don’t think I do. This is absolutely definitely not a bad thing, and in some ways makes things easier, although it does fuel point 2. It does concern me that verbal communication (by which I mean “actually saying what I want to say, rather than saying something else or just dropping it”) is so much harder these days, or at least more inconsistent.

I’m not consistent – and it really makes me doubt myself. Sometimes I’m okay. I don’t mean putting-on-a-mask okay, I don’t mean pretending to be okay, I mean genuinely, really okay. And even when I’m not, sometimes I can be okay for a little while; I think I’ve spent my first term in France mainly in the “not okay” zone, and yet I’ve had so many great times, amazing experiences and memories, literally doing a year abroad, making new friends, seeing the sights, going to events, and I even successfully asked for an actual literal date for the first time. How can I do all that and have such a great time and also have all this bad head stuff going on? It doesn’t help that, as you would imagine, I often don’t want to talk about the bad stuff or find it too difficult, but will happily talk sincerely and enthusiastically about the good stuff, creating an “everything’s perfect!” mask that now looks impossible to undo. Also, so many well-meaning friends have said “we all feel like this” to comfort me and/or attempt to tackle point 2 – being students, we’re all getting our first tastes of adulthood, and there’s a whole group of us facing the same challenges of the year abroad. This makes me wonder if all of the above is actually totally normal and I’m just completely failing to cope… as in point 2. Oops.

This has been going on in various forms for about 18 months – although I’m not sure exactly – but I feel like this is the first term where it’s actually beginning to interfere with my studies and other career-stuff, as well as of course hugely interfering with my participation in feminist/social justice activism even online, which is hugely important to me, and I’m really sorry I keep abandoning the blog. It’s not for lack of trying. I’ve taken a few steps mainly to deal with the anxiety, but that’s for another post (specifically the one that’s been sitting half-finished in my drafts for a month) and, whilst very helpful for calming me down, I feel like it’s doing little to actually resolve the admittedly rather vague “problem”.

At the end of every term for the past year, I think “right, when I finish this term I seriously need to talk to people at home about this” and yet I’ve never actually done it. It’s a problem with finding words, but also with timing. There is no standard acceptable time to casually bring up that yes, uni is fantastic and I don’t regret a second of it, but also my brain hates me now and I’m quite concerned. But at the same time, at some point very soon I guess I’m going to have to bite the bullet.


13 responses to “Where I’ve Been: A long whine about my brain

  1. merelyquirky says:

    THis is so me this year. OK, 2.5 years. In November I got the nerve to request to cut back my hours, but that won’t kick in til January. My boss developed a slowly fatal illness, after which his wife took over. Through all this, the family feeling at work also died, and my stress level went through the roof…. I don’t visit friends, write to family, or even clean my house. Hopefully the upcoming 20% reduction in hours (and pay) will be worth it.

  2. I hope it’s okay to leave a really short comment on your really long thoughtful post . . .

    My first thoughts were:

    * this age/life stage is a really common one for autistic burnout/regression
    * you’re living far from home with few supports so struggling more than usual and being more fragile is probably expected
    * is it possible that depression is paying a role on some level?
    * you’re doing the things you need to do from day to day and that’s not something to take lightly
    * being kind to yourself is an important part of self-care

    And now I feel like your mom. 😉 Sorry, fragmented thoughts is the best I could come up with so I hope that doesn’t come across as too abrupt or preachy or whatever.

    I’m in a terrible place right now so I can totally relate to all that you described and how hard it can be to get from one day to the next, doing barely what needs to be done and constantly feeling behind or like you’re falling short. ❤

    • Thank you! Sorry to hear you’ve been having a hard time 😦 You’re not alone, and I’m usually at least lurking around my WordPress reader if ever you need to talk 🙂

      The depression angle is interesting, because it hadn’t entered my head at all until last week, but you’re not the first to suggest it, particularly with regard to point 3. Having said that, from my admittedly limited experience it doesn’t seem like it fits; friends and other bloggers with depression have reported a sort of emotional numbness, whereas if anything, I’ve been *more* up and down. Definitely something worth keeping an eye on, though.

      • Thanks – I’ve been in a weird place.

        I wasn’t even thinking depression (and hesitated to mention it because it’s something women get hit with a lot in place of more accurate things) until you mentioned crying a lot for reasons you didn’t seem sure of. IDK. It’s not something I have a lot of personal experience with but I thought I’d throw it out since you didn’t touch on it in the post. I hope things improve for you soon.

      • alexforshaw says:

        Some quick notes about my own experience of depression:

        * More volatile emotional state with rapid mood swings, especially sudden lows.
        * Marked increase in crying.
        * Increased anxiety.
        * Low self-esteem.
        * Lack of motivation and loss of interest in usual activities.
        * Impaired concentration.
        * Loss of appetite.
        * Disrupted sleep pattern.

        What you describe does appear to fit with depression. You might find the information and symptom checker on this page of the UK NHS’s website helpful.

      • *reads your list* Oh crap, that’s a bit scarily familiar.

  3. I relate to a lot of this, I’m sad(?) to say. I have some thoughts but I can’t really make them coherent so I’m going to do some bullet points instead:

    – It can be a Bad Horrible Thing and still be something related to being autistic. It doesn’t mean that being autistic is the *reason* you’re having a hard time, but it might mean that the interaction between being autistic and all the other factors in your life are making things difficult. In my experience, it’s generally helpful for me to consider *everything* as being at least somehow related to being autistic (but that might not be the case for you).
    – In response to your comment above – not everyone experiences depression as emotional numbness (I certainly don’t). For me, it’s more like I still have the same range of emotion as usual, but all of those emotions are moved more towards the sad end. So, when I would usually be sad, depression makes me “utterly despondent”. And when I would usually be incredibly excited, depression makes me “vaguely content”. That might not be the case for you exactly, but it’s worth thinking about how depression affects different people (and *especially* different autistic people who already have unusual emotional experiences) differently.
    – My first thoughts after reading your post were that it definitely sounds like autistic burnout to me. The general life factors are there: being at uni, having a year abroad, all that scary and difficult stuff that happens at this age, like musingsofanaspie said. And the experiences of burnout seem to match mine pretty closely: feelings of depression/sadness/crying, lacking energy and motivation to do even things you enjoy, getting anxious and tired out at a lower threshold than you used to.
    – I totally get how it’s difficult to find a way to bring this up with family. I don’t really have advice for that, because I find it equally difficult. But maybe you could try communicating with them in writing (e.g. email) first? That way you have the time to plan what you want to tell them without them interrupting or anything, but then you can later have a chance to talk about it in person (or Skype or whatever) as well.
    – My advice for burnout/depression/whatever brainbug you’re experiencing is basically just: prioritise self-care over everything else. It sounds like you’re already sort-of doing that, but sometimes it’s good to have a reminder. The order of important things should be 1. Your body (eat, drink, sleep), 2. Your brain (relax, do happy things, don’t do unpleasant things), 3. Everything else (uni, work, etc). If things get really hard, could you maybe talk to someone at uni (like a personal tutor or whatever)? Not necessarily to ask for help (although that could be good), but at least to just let them know you’re having a hard time?

    I hope it’s not annoying to be given advice – if so, feel free to ignore of course. 🙂 (also, if it’s relevant – I am actually younger than you (19), and have never been to residential uni, so feel free to tell me I have no idea what I’m talking about!)

    • Thank you! Currently, advice is welcome 😛 Re: talking to someone at uni, under any other circumstances I think that would be viable, but annoyingly, I’m having these realisation whilst on a year abroad studying at a French university, and obviously I’m less familiar with it so I have no idea where to turn for that sort of thing (and that’s assuming I’d be able to explain it in French when I’m struggling to explain it properly in my native language of English). Having said that, what I do have is a.) friends on the same course as me, and b.) friends that are older but have been on the same course as me, so that could be worth exploring. Especially with the latter, because I won’t see them face-to-face for a while it’s easier/more acceptable to do it online, whereas for family that isn’t necessarily the case – although coming to think of it, that of course changes once I go back out there. I’ve just realised I’ve been thinking in terms of “I need to have this talk while I’m here” but actually the internet is a thing so that isn’t necessarily true, and in fact I think I’d also find writing easier. Definitely something to think about.

  4. Hey FeministAspie, this is AutistLiam/YetAnotherLefty from twitter. First off, I’d like to say that things sound really hard for you right now and that’s no fun and I wish things were less hard. I’d also like to give you permission to drop and pick up the blog *whenever* you need to, we’ll miss you but we’re not more important than your well-being!

    Okay, here’s something I think someone needs to say to you and no one else seems to have yet. My friend, you are accidentally comparing what’s going on in the INSIDE of your life with the OUTSIDE of everyone else’s. I can absolutely guarantee that several of your classmates are struggling and putting effort into pretending they aren’t. Being a young adult is HARD and being an autistic young adult can be even harder. This is not some kind of failing on your part, it’s a fact of autistic life – new situations are hard for us for longer than they are for NT people.

    The situation you are in would be very stressful and difficult for *any* person, especially a young adult. Moving house, moving *country*, a university course *and* a language barrier? I am SO PROUD of you that you are managing to keep yourself fed and your course on track. That’s really great. Things could improve, yes, but you’ve managed to keep a handle on some of the basics and that’s a really good sign.

    I am not a doctor but I am an autistic and mentally ill 25 year old. Autistic burnout / regression is a very real and very common response to the new stresses of young adult life – suddenly having difficulty socialising with people is a normal part of this. You might find it harder to pass for NT for a while.

    On fearing that everyone else is thinking bad things about you: this is a common thing in depression and in social anxiety so maybe something might want to talk to a doctor or therapist about some time. In the mean time, please ask yourself: Do YOU spend much time thinking about how “weird” other people’s behaviour is or making negative assumptions about them? I bet you don’t and most people worth your time won’t either. The worst thing people are likely to think of you is likely that you’re a bit shy or that you’re having a hard time right now. Most people who aren’t your friends likely won’t even think that much – people really don’t think much at all about the strangers and acquaintances in their lives (well, NT and mentally well people certainly don’t).

    I think I had other things I wanted to say but I’ve run out of the ability to words. *sending love, solidarity and cups of your favourite hot or cold beverage*

    Feel free to message me if you want to talk about any of this stuff.

    • “In the mean time, please ask yourself: Do YOU spend much time thinking about how “weird” other people’s behaviour is or making negative assumptions about them? I bet you don’t and most people worth your time won’t either.” – I want that on a T-shirt. Okay, it’s a bit long. Maybe on a dress instead.

      Thanks! I actually am back now and so far, so good – although this is only my second full day here and I haven’t properly started uni yet, so it’s hardly the best time to judge 😛

  5. Alex says:

    As for the sometimes-OK thing, sometimes I think I’m the same, but the other way around. I complain about being unable to do things or my parents say I need help with something, then once or twice I manage to do it myself no problem.

  6. Alex says:

    As for feminist/social justice issues, I keep wondering how people manage to cope. I guess if someone asked me how I coped with being on the spectrum it would sound weird but it’s just….if a guy gets into some sort of trouble it’s blatantly obvious, whereas if a girl with no disabilities/diffabilities has to deal with periods etc. it’s hidden, so there’s this mask of perfection, and they still manage to work harder and look better and if they’re neurotypical they’ve been told to be social all their life and come across better, so men think they’re having it easier when they’re actually having it harder. But I guess people “rise to challenges”. It’s weird…yesterday I heard that Emma Watson couldn’t cope with the weight of a prosthetic baby, yet somehow the women who do have babies – such as her mother – manage to cope with it.

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