Untangling

I am closer to spring this year. We moved house in January, away from the cold, damp, densely-packed terraces and into somewhere newer, properly insulated, surrounded by trees rather than concrete. Sometimes I still feel like we’re in a nice hotel, really a bit above our means, and that it will all come to an end soon enough when our imposter status is discovered. And then I feel angry that the general state of affordable housing in this country is such that a person can feel out of place in a house just because there are no slugs in the bathroom or holes in the walls, with gales blasting under the doors, from nowhere in particular, straight through my blanket nest. I almost want to both apologise for being able to live here, and to force a few MPs to apologise for making it virtually impossible for disabled people to afford decent standards of living.

I have discovered various things this spring. For example: it is much easier to start a task, and to only sit down for the ten minutes intended between tasks, rather than finding yourself still stuck on the sofa three hours later, when you are warm. Previously, I could spend hours trying to argue myself into action, and when I did finally get myself going, it felt like trying to run up a sand dune. This I had attributed to depression, to executive dysfunction, to laziness, to, always, myself and my wonky brain. While I still often recognise the type of tiredness and deficit of fucks-to-give that is characteristic of pushing myself a bit close to burn out, and while my executives (which I persist in thinking of as little people wearing suits who are in charge of my higher cognitive functions, because it makes me laugh) still get blamed for my inability to prioritise or work sequentially, this specific issue of struggling to get started appears to have been caused by my environment. Change environment, and suddenly I am weirdly productive, albeit still approaching tasks in a rather bizarre fashion that makes my wife wince a bit.

There are parallels here with the therapy I’ve been engaged in for the last year or so. For the first time ever in my extensive history of navel gazing, I went in with a specific goal in mind: to untangle the relative contributions of trauma and autism to my general mental state. I knew from working with a previous therapist during The Supermassive Black Hole of 14/15 that I still had pretty intense reactions to certain memories, but that particular therapist turned out to be far too wedded to her own odd beliefs to be useful to me beyond helping me figure out what the fuck the star-eater at the centre of my brain was being fuelled by. Apart from having no patience for my beginning to question if I might be autistic, she’d previously come out with some impressive clangers like “antibiotics make your brain swell up” (leading to a week of panic attacks, which you’d think a therapist might have predicted in a client with health anxiety and a nasty ear infection which really needed said antibiotics), and “you don’t look like you have any problems with food now” (we all know about that one, so I won’t bother with the obvious rant). So we parted company, me in the direction of someone trained in EMDR.

My very low tolerance for quackery might seem incompatible with EMDR. It’s a truly weird therapy: basically, you hold a particular traumatic memory in mind while your therapist provides some kind of stimulation to alternate sides of your body, such as moving fingers to the left and right of your field of vision, buzzers which vibrate in your hands, headphones that click in your ears, or whatever else is available/tolerable. However weird it sounds, though, I’d heard mostly good things from people who had been through it, and I found a few meta-analyses which seemed to indicate that there was something to EMDR, even if no one was entirely sure of the nature of the thing. I had also found my only other exposure to a therapy designed to process stuck memories really helpful for the more active PTSD symptoms like nightmares and flashbacks related to being raped, but as it was on the NHS and therefore time limited, the rape was as far as we got. I’d had an awful lot of traditional talking therapies of different kinds by that point, and while these had helped me in all sorts of ways, such as building a sense of self worth and self esteem, the ability to communicate my internal experiences to others, to make sense of those experiences, to be more assertive and so on, they had made little impact on those stuck, intrusive memories. So, I thought, what the hell.

I was diagnosed with autism about six months in, and I think I can safely say that both therapy and diagnosis have helped a lot in different ways. In terms of the EMDR, the few obvious traumatic memories I had left have really lost their power. Excepting the rape, my remaining memories which felt “big T traumatic” – as in, when I thought about them it was as if I was still right there – mostly related to being inpatient ten years ago, and to a rather dramatic medical emergency during the same year. When I think about them now, I feel angry and sad that I had to go through the more avoidable aspects of those experiences, but I don’t feel like they are HAPPENING RIGHT NOW DANGER OMG.

Even more weirderer (because sometimes grammatical fuckery conveys a sense better than the proper words) working on those memories also got my brain processing some of the more subtle stuff. That medical emergency, for example, I’ve talked about on here before – but as a summary, my blood pressure dropped to the point where I spent an hour or so losing and gaining consciousness in quick succession while thinking I was about to die. It was caused by being injected with an anti-sickness drug which reacted badly with the quetiapine I was taking at the time, a combination that is now known to cause cardiovascular problems in a large minority of people. However, the doctor wasn’t taking it seriously at all – he’d seen evidence of recent self harm and medical notes showing I’d only been out of an inpatient psych stay for three months, and decided I was ‘just’ having a panic attack until he actually bothered to get a cardiac monitor. Even when he saw how low my blood pressure actually was he was unsympathetic, leaving me alone in the room with “if your heart stops the alarm will go off”. I was terrified, and I felt so humiliated. But as I worked on that memory in EMDR, and the initial terror died down, other memories which shared a similar sense of “I’m in desperate need of help, but no one is listening. I have to cope with this alone and I can’t” started coming into my mind. Things like, the rather extreme self harm I felt too embarrassed to seek help for after I was raped; being dismissed by various psychiatrists when I was desperate; trying to cope with being bullied and the subsequent stress-induced psychosis I experienced when I was 13 by myself because I was somehow unable to communicate what was going on; being inpatient and knowing that I could easily kill myself without anyone noticing until it was too late. Basically, a lot of the usual shit you get for being young and female-presenting with chronic mental health problems.

All of the above still makes me fairly irate on a semi-regular basis, especially as I see similar things happening to friends all the damn time. However, the fear and shame and injustice I used to feel when I was reminded of my own experiences has really calmed down. Now, instead of seeing those things as personal failings that I could have avoided if I had just been more in control, I can see them in context of the attitude of society towards women and mental health, the history of autism diagnostic practices, the defunding of the NHS and the overstretching of its staff, the common shame associated with growing up unaware of your own neurodiversity. I haven’t worked on this change of perspective directly, it just sort of happened. It’s like all of the highly logical things I tried to tell myself about my experiences, which I could easily apply to other people but which failed to resonate with me emotionally, suddenly just fell into place. As a result, I feel a lot more settled, less prone to being ambushed by triggers which push me into trauma-related emotional states, much quicker to notice when something is pinging one of those buttons, and more able to deal with that before it becomes a minor detour into one of the lesser indentations in spacetime attached to the outskirts of the black hole.

This is all very welcome. I have become less prone to being pulled into these sorts of states over time, especially as the rest of my life has settled down considerably in the last 5 years, and my wife has provided me with a lot of support in getting there. But I was still occasionally waking up in a completely black, self destructive mood when something had impinged on the orange blob of doom – my highly technical name for the constellation of feelings around being in a situation I feel unable to cope with, and yet having no choice but to cope with it. Trapped, hopeless, powerless, desperate, ashamed – that sense of, I can’t, but I must – and the answer was always restriction or self harm, because those were the only things that made my brain and the world feel manageable again. I can deal with those sorts of feelings much more objectively now, and I can’t even begin to say what a relief that is.

So far, so good! However, with all that untangling comes the necessity to look at what remains. That has become a process in itself, because for most of my time in and out of therapy, I’ve held on to the idea that if I could just process the trauma, I could be ‘normal’ and function in the world like anyone else. Processing the trauma has also meant accepting that this will never happen, because trauma wasn’t the only thing going on. I’m also autistic. I experience chronic stress from fairly mundane things that my nervous system is hypersensitive to, like eating, being unable to filter out background noise, navigating social interactions, dealing with unanticipated change to my routine, and so on. Self harm and imposing rigid rules and routines around food and exercise are also very common in autistic people, and I don’t think my predisposition to either is going to go away completely.

A curious balance has been reached. I am more functional than I’ve ever been. For the last two years, I’ve kept my mental health fairly stable while studying for two Masters degrees, working part time, and dealing with all the adulting that I find almost more challenging than academic work, from everyday tasks like cooking and cleaning, to moving house. I feel like I’m constantly working right at the edge of my capacity, so when something stressful comes up – certain deadlines, the house move, other life stuff that just happens – I frequently have periods of several days where I feel chaotic and overwhelmed and basically doomed, and have to scale back until my nervous system settles again. Not having posttraumatic reactions complicate that is essential, because those situations used to automatically tip over into full-scale crises when that “I can’t but I have to” button was pushed in the process of trying to deal with what might otherwise have been a few bad days due to temporary burn out. So in a way, life is easier – but it’s still very challenging, and maintaining this equilibrium requires a huge amount of self monitoring, compromise, honesty, and support.

Sometimes I feel cheated by that. I discovered the promise of psychotherapy when I was 16, and belonged to an online forum for people with eating disorders which emphasised the power of uncovering and dealing with underlying issues. This came after feeling increasingly alone and terrified from the age of about 9, when my anxiety really started getting out of hand. This is common in autistic girls, because being a bit weird is often fairly well tolerated by kids until they start getting close to puberty, when social interactions become far more complex. From that point on, it was all bullying, psychosomatic illness, dissociation, paranoia, and eventually, developing ways of coping with these which gradually took on a life of their own. So it’s no wonder that when I learned about the goals and process of therapy, I clung so hard to the idea that if I could just *deal with my issues*, I could escape all of that. To now accept that I will never be like my peers, and that aspects of their lives that I want, like a career, or children, may always require me to push myself right to the limit of my tolerance – that’s really difficult.

So this untangling of trauma and autism has made my life easier, and harder. And I am slowly working out how to live with that.

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