This is basically a post about me complaining and feeling a bit sorry for myself. It isn’t a very hopeful or happy vibe (so perhaps I should include a TW for depression and general feeling bad). I do, however, try to identify the source of my problems and decided to list some strategies that might help towards feeling better (for those who might be in a similar situation).
This is hard to write. Not because I am struggling with writing or anything (although actually this post is probably a bit dis-jointed or whatever… in hindsight it was probably a bit early for me to write about all this, but I felt I wanted to so… yeah I just grabbed at the fact I actually felt motivated to do something semi-productive). Actually, it is the opposite: I simply cannot stop writing at the moment. This is a good thing because it is really helping me to process my emotions and feel better – at least in the moments when I am writing. But all the pages and pages I’ve written have been for my eyes only. So I don’t really need to edit or censor anything or think about what might be interesting or relevant for others to read. I’m not really used to writing about my life or personal and emotional issues on this blog (excepting perhaps the diagnosis series). I’ve been confused about this blog for a while, about where I am going with it, about what the point of writing anything is. (Perhaps that’s just because not many people are reading – although honestly I’m not sure how much difference this would make. Perhaps it is because I feel I’m writing about the ‘wrong’ stuff?)
Anyway, I will come back to this later in a couple of posts time. First I want to write about what has happened to me.
I don’t know what concept or terminology to apply to what I’ve been experiencing the past couple of weeks. Autistic burnout, shutdown, depression, even lovesickness? Aspects of all these things probably apply. In fact, I basically meet like 90% of the symptoms for most of these things. And yet I feel none of them alone are sufficient to capture my experience. For example, from what I’ve read about one particular aspect of how I feel, the chemical processes going on my brain are not dissimilar to substance abuse – the highs, the craving, the withdrawal and recovery – something which is obviously distinct and additional to autistic shutdown or burnout.
But anyway, I think I have burnt out as a result of feeling bad. I basically just stopped. Stopped doing everything I usually do. My entire routine went out the window. I could not for the life of me construct a new routine, so I just drifted through the day trying to summon energy and motivation to fill my time in some way, struggling to decide whether or not I wanted to do something and agonising endlessly over the order in which to do things.
My executive functioning took a hit. I was still able to go through the motions of most basic self care and daily activities – like getting up, dressing, washing, cooking, eating, etc – perhaps because I am usually ok with these sort of tasks so it is hard for me to ever really lose them. I just felt awful the whole time I was doing anything and not asleep. Apart from basic self-maintenance, my only activities for about a week consisted of lying in bed, listening to music, watching YouTube and writing about how bad I felt. I didn’t talk to or see anyone for about 8 days. Gradually, I’ve been adding things back in – talking to people, going out for a walk or run, meditation, yoga. Today, I even opened up one of my autism books and read a few pages.
There was a definite trigger. A very clear one. I’m not going to go into the trigger, except to say it is related to a person. It caused me to feel amazing at first, and then to become very emotionally sick, depressed and anxious, with implications for my physical and mental state. I felt achey, nauseous, short of breath, sad, worried, despairing, regretful, panicky, tearful, distracted, jealous, unmotivated… so overall not great! Most of all I had this huge pressure over my heart area and all these confusing emotions manifesting as painful swooping and stabbing sensations in my gut and chest.
I stopped caring about everything except this person. And it was entirely unhealthy and ultimately impossible and self-defeating to be caring about this at all because it was/is a dead-end. What I cared about most in the world was a non-starter. And I felt like I could care about nothing else in its place in an attempt to replace and fill the emotional void left by its absence. Emotions became strongly physically manifest and painful, to the extent I became sick with emotion. It was not a good time.
One worrying aspect of this was that I stopped caring about my intense interest – the research and writing I am doing around autism. Apparently if this happens to an autistic person, it is a bad sign. And I can vouch that it feels pretty scary to suddenly lose all interest and motivation over something you were previously so passionate about – and to actually start to become pretty resentful about it as well. My interest around autism takes up a lot of my life. Whilst it tires me out cognitively and is often emotionally stressful as well (it is often TMI, there are so many voices, there is ableism), it is a hugely motivating force and ultimately contributes a lot to me feeling fine most of the time. I stopped doing my usual work because I couldn’t fit any more external information or emotion into my brain. I simply cannot engage as much as I want and feel I need to. There is a lot of guilt involved in this.
But then again, even if I did suddenly regain endless amounts of mental energy, I don’t think I want to go back to how much I was doing. I started to feel resentful about it all. About how much time and energy I was spending on it. Essentially, I’ve burnt out of doing my intense interest. Apparently I am having an autistic burnout consisting (in part) of burning out of focusing so intensely on autism. It was exhausting me. Despite the fact it is (/was?) what I love. Despite the fact this work suits my brain so much better than most other activities. I was doing too much, and now I need to slow down. At the moment this is taking the form of completely stopping.
For a while, I couldn’t picture myself returning. It made me feel panicky, all the backlog of stuff I want to read and write and understand. I was questioning the ultimate purpose of it all. Is this what life is really all about? Collecting information, trying to understand how and why things work or don’t work, writing it all down and trying to share it with others? Of course this work matters greatly (not necessarily what I’m doing individually, but in terms of the collective force of lots of autistic people sharing their thoughts about autism and trying to change things). But, equally, I don’t think it’s the most important thing in life.
Meaningful human connections are surely the most important thing. And unfortunately, I’ve been feeling a lot of regret and anxiety in this domain recently. I have a very small handful of meaningful connections in my life. I am and should be very grateful for this. Some people have far less. But, I am worried. I feel that I do not have enough now. And I fret about the future and what will happen to various people. I actually felt pretty contented up until recently. Then things started to change after my autism diagnosis (almost 3 years ago). I felt a stronger urge to connect more with my peers and especially with my new-found community. And now, with this recent episode, these feelings have suddenly sky-rocketed to a really intense level. Now I feel quite down about it all. The core of the issue is that I want more social connections, especially within the autistic community. I want to pay far more attention and energy to this from now on.
To maximise my chances of success, I need to shift my focus. I need to dramatically reduce what was my previous hyper-focus and basically develop a new one. This is because it is really hard for me to have too many focal points in my life to balance at once. I can basically only have one (plus self care and basic activities of daily living that have to happen). I know having multiple focuses in life is the norm for most people, and that for many autistic people too, it is a necessity or something they feel is worth the effort – to balance work and interests and social life. I’ve never been able to do this with much success. So I’m accepting this – to an extent at least – and consciously shifting my focus into a new area at the expense of another. I’m going to return to this issue in my next post.
Anyway, things are getting better – I think, and hope. It is still very early days. Just yesterday afternoon I felt probably at one of my worst points. I’m struggling to understand why I suddenly feel so bad when a few hours earlier I was relatively okay. It might have something to do with the fact I was being bombarded by a ceaseless chorus of lawnmowers, drilling, hedge trimmers, passing vehicles and other monstrosities surrounding where I live. I’m hoping it was this, because then there is at least some sort of rational – and potentially fixable – problem for why I felt so panicky. I am even more sound sensitive than usual, so this is not a good situation. It feels truly awful when all this painful noise is coming in from the outside when you already feel at your limit internally with everything and anything. It is really not okay and it’s become clearer than ever that I need to escape suburbia as soon as humanly possible.
In fact, there are a lot of things that need to change. I need to get back to normal emotionally, yes. But this does not mean I should go back to how I was living previously. The tricky thing is that I was completely fine in terms of my emotional health prior to two weeks ago. And then I really was not. Logic would dictate that I should just go back to doing whatever I was doing before since I felt fine then. But this episode of the past couple of weeks has been something of a life-changing one (or I hope it will be – I want to have learned from it). It has shaken me up in a big way, caused me to shift my perspective, and in a way I don’t think I can un-see or un-feel. Whilst I need to start feeling alright again, I also need to address the problems in my life that have come to the fore, and this means not settling back down into how things were before. Not because these things were necessarily wrong. But because I have changed.
To end on a more positive note, and in case you are also going through a tough time, I thought I’d list some of the strategies I’ve been trying to implement to feel better. It’s pretty standard stuff. But some of it really does work, at least some of the time.
– Try to remove yourself from any trigger (if there is something specific and you can identify it).
– Express your thoughts and feelings – talk to someone, talk to a camera, write stuff down, or type things up if you find that easier (and struggle with hand-writing like me). It’s okay if you don’t feel like doing this initially, but there will probably come a time when it becomes necessary and healthy.
– Research and problem solve. I felt at my most calm and positive when I was trying to understand what was wrong with me and why, and what I might be able to do about it. I researched my symptoms, read advice articles, watched videos of others experiencing similar things. I spent a long time thinking whilst staring into space trying to identify my feelings and explain them. This hasn’t made them go away, but it makes me feel more in control of them. I didn’t put pressure on myself to actually take action at this stage, but I could simply feel comforted by knowing what was going on (even if this was sometimes only vaguely) and knowing that it is in my power to do something about it when I am ready.
– If you don’t feel like talking to anyone irl, find others who you can trust online who are in a similar position to you – you could chat to them, learn from them, even watching a video can make you feel a lot less alone.
– Try to notice any negative thought patterns. Focus on thinking things that boost your self-esteem, rather than beating yourself up for what happened or for how you feel as a result. Cheesy as it sounds, make a list of reasons to be hopeful and grateful about yourself, your present situation and future.
– Look after your body – sleep, food, hygiene, exercise. These can be tough things to maintain, but if they slip away it’s only likely to make things worse. Hopefully you have people around you who can support you with some of these things if you need it.
– Remove pressure to do things when you simply don’t have the capacity to engage with them (although I realise that, unfortunately, for many there may be no choice in this – e.g. needing to go to work).
– At the same time, it will probably help if you have at least some things to do. Don’t pressure yourself to do them. But if they are things you enjoy, hopefully you will be able to do them, at least a bit. This might include easy, fun, distracting things like listening to music, watching things online, stimming, or a special interest. (If you have lost interest in your special interest I’d say at least try to engage with it a bit even if you don’t think you would enjoy it – it might help. Or try to go searching for a new one!)
– Other potentially healing things: music, nature, deep pressure, water, meditation, dancing, pets, spending time with others (in a way that suits you).
Also, things that made me feel a lot worse and which you might want to avoid if they do for you too: external noises, too much social (especially if the emotions are intense – either negative or too happy), pressure to move on from how you are feeling, pressure to do things, pressure to address things you don’t yet feel ready to, having to do certain chores like cooking, staying in bed a lot/being immobile for too long (but equally needing enough time to rest as well).
I’d love to hear from you in the comments if you feel similarly or have any feedback! 🙂