My particular brand of Madness TM

TW: for discussion of psychosis, hallucinations, self-harm, suicidal ideation/attempts/actual suicide (only mentions no detail), ED behaviours (no figures)

First written on 31/07/21

As my first ever post I wanted to provide a bit of context and description of what I mean when I say I am mentally ill, anorexic or Mad TM. The use of the word ‘mad’ is a particular choice made here to align with the political movement of Mad Pride which tends to posit Madness as a social justice issue and campaign regarding recognition of the material factors of Madness, social stigma and lack of treatment options. It also recognises a certain pride one can take in one’s oppression, similar to queer or black pride, as a marginalised group who are able to band together and work as a community against their oppressors. That which we have been told to be ashamed of is, in fact, our very source of strength.

I think this is complicated with mental illness for a number of reasons – chiefly that one is often trying to rid oneself of the disorder or to recover from it in some way. However, I think it is possible to recognise that one’s social marginalisation as a result of Madness continues to exist or have existed despite any subsequent ‘recovery’ and that, for many people, this ends up being a life long struggle in various guises. There are also those of us who have disabilities like autism, which will persist for our entire lives and cause us, in many respects, to be ‘read as’ Mad.

The beginning

When I was seventeen I started to have nightmares. I dreamt about a version of myself that was undead, a bruised and battered living corpse, half of her skull smashed in, bleeding but smiling. She haunted me. I was afraid to go to sleep because I knew I would see her again. This led to severe insomnia and then to intense depression. I don’t know why I had these dreams, these nightmare visions. I did not tell anyone.

These nightmares eventually began to haunt my waking life, too. I saw her, she spoke to me – other voices spoke to me, too. I saw many frightening visions, like blood seeping down the walls. I started to self-harm every day as a way to cope with this. I was also severely depressed, I felt like great weights were constantly situated on my chest, like everything was made of glass and might shatter at any moment, like everything was so intensely painful that I might die from it spontaneously. In fact, I rather hoped I would.

This feels to me like the beginning of my struggles with mental health. Before this, I cannot remember anything of that severity. I think I was lonely as a teenager. I was bullied in school and struggled with undiagnosed autism. But I had close friends to turn to and my home life was fairly stable. I will probably go into my family’s toxicity more at some point but certainly they intended to love and provide for me.

When I eventually did tell people about the self harm and depression, they freaked out. My parents, especially. They were terrified. I also told them I was gay and had a girlfriend at the same time and they did not react well to either of these things. They responded with fear, anxiety, control.

I continued to struggle as I went to university. I did seek treatment and was on a roller coaster ride of psychiatrists, psychologists, medication and found I could barely understand any of it. I attempted suicide several times and was in ‘respite’ – a dour, damp, semi-detached building where you were constantly monitored and there were no sharp knives which made cooking anything for yourself rather difficult. I was also seen by the Home Treatment team who visited me every day to give me a single dose of anti-psychotic medication and ask me if I intended to kill myself that day. I always said no.

Ups and downs

I was a very vulnerable young person. What is that word? ‘Vulnerability’. I’d like to drill down into that more in future but for this particular purpose I will say that lots of things about me led predatory men to target me. I was targetted. In particular, in my second year of university I was in a domestically violent relationship. This is not uncommon for people with pre-existing serious mental health conditions. Nor, indeed, uncommon in general.

After the relationship ended I went to study abroad. This turned out to be extremely helpful in many ways. I developed what I now understand to be PTSD and regularly had flashbacks and nightmares. I became obsessed with understanding why the fuck I had been treated like that. I found a group of women performing the Vagina Monologues by Eve Ensler and we were all survivors and we TALKED ABOUT IT. This was incredible to me and invaluable.

When I came back to the UK for my final year of university I still was struggling with a lot of sexual trauma and PTSD. I met a group of students who were occupying part of the university to protest tuition fees, education cuts and low staff wages. I met a group of people who would become my greatest loves and the support system I would come to rely on for the rest of my life.

Just after I graduated university one of my good friends committed suicide. This sent our entire community reeling but it also brought us together. I struggled with the grief, the depression. Yet, after some time I was actually doing better than before. I had friends. I had community.

I had shitty jobs. I decided to start a part-time Masters. I got a better job and became an independent domestic violence advocate. Things stabilised for me, I eventually went off the psychiatric medication I had been on since I was eighteen. I worked on political activism projects, cooperatives, movements.

At some point I decided to seek an autism diagnosis after years of struggling and at the suggestion of autistic friends. I was diagnosed at the age of 26. After the diagnosis I did not receive any further support but it did help me to understand things better and why the world felt so much sometimes and why I was weird at school and why I was so slow on the uptake sometimes. A lot of my struggles with depression were worsened by the undiagnosed autism and lack of understanding, I realised. My peer group were supportive as many of them have autism and ADHD as well. We find one another without even knowing it.

I took on a lot. A few years ago my anxiety got bad again and I made the choice to go back on anti-anxiety and anti-depressant medication. This helped somewhat. Then life, once again, threw me a huge curveball. A close friend committed suicide and I felt my whole world shatter.

Her death was deeply painful. I used substance abuse to cope. I lay listlessly trying to understand how my body could survive this much pain, it felt impossible. Everyone was hurting so much. I tried to get counselling through the university but this was cancelled due to the first COVID lock down.

Lock down. This fucked up my shit. I started private therapy online to try and deal with the grief. I started trying to do all of the coping skills I had accumulated through my many different counselling and therapy sessions. We all tried really hard to support each other. For the first six to eight months I held it together reasonably well. Rode it out, spoke to my therapist. Taught myself to garden, started a herbalism course, taught myself to read tarot cards and studied that. Did a bunch of yoga. Went on endless walks.

In the winter I was under a lot of pressure at work. I’m always worse in winter and then a more severe lock down happened and I felt so lonely. I didn’t feel I could say this because I live with a bunch of good friends but I am a very social person and this did not feel enough.

The eating disorder

It was in this period that I decided to ‘go on a diet’. My weight had been this thing I’d been meaning to address but was never a big enough priority that I would do anything too seriously to deal with it. I was, according to BMI, a little overweight. I had determined every so often to ‘eat less takeaways, do more exercise, eat healthier’. I had never, so far, monitored this particularly. I did exercise fairly regularly and eat lots of vegetables so where was the problem?

Yet, left alone with myself, the thoughts of self-hatred came to the fore and this time they focused on my body – that it was too fat, too big. I ought to lose some weight. I downloaded a weight loss app where you could track your calories, your intake and how much you’d burn through exercise. This app was to become the biggest dictator of my life, the thing that decided how much I could eat relative to the amount of exercise I had done, produced the numbers I became totally fixated on.

It did not take long before I became obsessed. I read all the research I could on how to lose weight, hyper-fixated on it in my autistic way. Because I was restricting I also became completely obsessed with staring at food but denying it to myself. I cut my calories more and more and increased my exercise further to try and create the highest deficit I could. It worked. I lost weight rapidly. But never rapidly enough.

At this point I was still seeing my private therapist online. He became concerned about these behaviours but it was not a specialism of his and he was unsure what would be helpful. He tried to convince me to see a doctor about it, just to see how this was affecting my body. I refused. I was traumatised by the treatment I had received for mental health when I was younger and did not want to engage with this again. Besides, I was still ‘too fat’.

This dance of him trying to persuade me to see a doctor or a specialist went on for some months. Eventually he wrote to my GP without me really wanting him to – professional responsibility. He said he couldn’t see me any more and I needed more specialist help. In many ways this was a wake up call, though I hated it at the time.

By the time I went to see the GP I was underweight. I wanted to lose more weight, secretly or not so secretly. But I told her and I cried and she said she’d refer me to the specialist eating disorder team but that the wait could be some months.

Shortly after this I took a holiday with some annual leave from work. I went with my partner and we struggled to manage my eating disorder behaviours – my need for strict eating times, specific ingredients, to know exactly what and when each meal would be and my refusal to eat more. My incessant need for exercise every single day, needing to go off and do it before I could relax. By then I had also started a binge cycle where I would break down and eat a large amount and then restrict heavily and exercise even more heavily the following day. Yet, being away from work felt so good.

Returning to work was hard. The doctor had offered to sign me off but I wanted to ‘see how things went’. I was on a training course, studying to become ‘qualified’ in the role I’d been doing for four years. One of the days there was training on assisting client with mental health difficulties, including eating disorders. This felt very triggering to me. On that day, a friend of mine wanted to discuss some difficulties they’d had with me withdrawing support from them at a difficult time. We went for a walk but I simply could not hear their criticism at that time. I was starving, for one, having restricted hard that day and I was also triggered by the training session. I screamed at them, swore at them and stormed off. I couldn’t believe how angry I felt, it was coursing through my veins and thick and terrible fire and smoke.

It was on this day I decided to ask to be signed off work sick. I am still signed off work at the time of writing. It helped, a lot. I am still awaiting treatment, however. I’ve been told the wait is around three months.

And now?

I have decided to recover, with or without the fucking NHS mental health ‘support’. I have decided to recover because I absolutely cannot stand it any more and there is no other way. Two of my friends have taken their own lives and both times it has completely devastated me and my community, my friends. I have seen it. I have felt it. I could never inflict it. And so there is only misery and endless suffering or there is recovery.

So far, it’s been a roller coaster of emotions, highs and lows, but I have my friends rallied around me to support me. I wanted to write about it. So here is my first post!

I’ve plans to write more on some specific topics including disability, autism, body image, anti-psychiatry, trauma and many more. This will probably also include some updates on where I’m at with recovery, if I feel like sharing this. Watch this space.

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