I think it was clapping for the NHS that made me realise I had trauma.
In hindsight of course I knew that what I’d been through was traumatic but I also minimised it, the memories were blurry, and the real stonker – it saved my life therefore I wasn’t allowed to wish it hadn’t happened, that would be wishing I was dead.
That’s the thing about mental health services and sections, they operate crudely, bluntly, they come in too late and too harshly but, by the skin of their teeth, they sometimes just about manage to do the job to the bare minimum standard and because of that remain just out of reach for the full force of a survivor’s anger.
Or that’s how it is for me.
I care deeply about the provision of free-at-point-of-use healthcare, I would never want my critiques out of context to detract from that and I most certainly don’t see the rise in private day patient programmes as the solution.
Two of the leading of these private services are lead by the two psychiatrists I’m talking about.
I was in and out of hospital for a few years age 16-21 but it’s the final, adult admission that was so much worse than any other. The hospital had a reputation, I knew before I went in that it would be better to be literally anywhere else, but illness and geography meant I didn’t have a choice.
As soon as I was admitted I begged to be transferred but patient choice was long ago thrown out the window for a sectioned psychiatric patient. It wasn’t until I read my notes years later that I really understood CCG’s and the funding backdrop.
Anosognosia is a key symptom of anorexia. You can see your weight going down, your intake going down, your behaviours damaging your relationships, life falling apart before your eyes and your mood plummeting, any rationality blurring and fragmenting and yet somehow believe that it’s not that big a deal, other people are making it a big deal, you will change, you can sort it out, if only you can find the right brand of yoghurt, if only it can be fixed by having an additional chocolate bar and slice of toast.
“I don’t need to be inpatient, just give me another change, I increased my meal plan by 100 kcal, I am better off at home” she says, weighing something ridiculous (I’m not going to say my weight, but if someone reading this is going to trigger themselves I’m sure they already know what a sectionable weight means).
So yes I was a risk to myself, had no insight or understanding of the risks of starvation and wasn’t going to consent to medical monitoring or take the action required to stabilise my risk. In the face of that, psychiatry, as well as my mother, contend that “for your own good” you need to be in hospital.
To this day I have no idea how to feel about this? Would I have died? Would I have found my own way through? Who would I be today if what happened next hadn’t had to happen? What would it mean to me if what happened didn’t have to happen, I guess I tell myself it had to be this way because of how painful it is to imagine a world that’s not so cruel.
Where hospitals places of care and restoration, nurturance and healing and not lunatic asylums by any other name, an extension of a carceral system, a place to lock away the undesirables, to delineate madness from sanity, to punish those who don’t conform and who scare the rest of them.
Anyway, I remember how scared I was when I realised the ward was locked. That I, specifically, was locked on the ward. That legally I was not allowed to leave. Legally I had no agency anymore. I was clinically determined unable to make decisions about my care, I was a risk to myself and couldn’t be trusted.
Other patients, voluntary admissions, could in theory leave, but in practice we were now all locked into this corridor of 20 beds, a meeting room, two dining rooms, two bathrooms, a kitchen and a central sofa and tv, seemingly sitting in the middle of the corridor but theoretically a communal space where we had to eat evening snack infront of a cooking show in the vortex of what happens when all the anorexias form a force field around which we orbited, getting closer and closer to that food-obsessed centrifuge.
The days were bleak. Usually waiting on tenderhooks to argue with a psychiatrist or dietician about how terrifying treatment was, how uninvolved in care planning we were, having to make desperate pleas and pitches to ward round to have leave requests or meal plans discussed and, when they did show up which they seemed to schedule with casual contempt for “I’ll see you tomorrow” agreements, hours or days later to be told you had less leave than you’d asked for, no meal plan change allowed, sorry we know best, sorry you can’t cope I guess you’ll just have to keep not coping whilst also not being allowed any freedom or social contact that might give you the means and strength to carry on, oh you’re jogging in your room now? Why would you do that? You must be causing trouble, not complying, do you want to be here forever? If you keep doing that you won’t get any leave at all.
You see, despite being sectioned on the basis of having no capacity to understand your own risk and behaviour, you are now going to be scolded, castigated, bullied, punished and have it held over you that you engage in behaviours that aren’t “helpful” or conducive to the goals we’ve set for you (“recovery”) or the goals you’ve set yourself (getting the fuck out of here asap).
Most of the trauma was in that contempt:
Being held down to be nasogastrically fed and whilst a nurse sneered “what did you think would happen”.
The transgression: I didn’t butter my toast and believed the feed would just constitute the calories of the butter, not the whole meal.
Being laughed at when I insisted not eating animals was a moral tenet and not a restrictive one – the implication, barely concealed, that an “anorexic” having ethics was risible.
I was broken by the stripping away of any identity, any interests, anything I had found my self worth in being dismissed as “illness”, any assertiveness about who I was and what mattered was obviously “the illness talking” and “now is not really the time to care about that, you don’t have those choices”.
The euphemisms in my notes state “had to be constantly reminded to sit down, which she refused to do until further staff intervention” – my memory tells me this involves being pushed into a chair, held down, sat on.
The most visceral memory: kicking and screaming and being held down by 4 nurses whilst a 5th passed an NG tube. Pleading to be allowed to just drink the fucking supplement, that it should be offered to me for drinking and being restrained instead.
In a sickening, disorientating disappointment, when I got the stack of notes from the 9 months I spent in this hospital, this incident wasn’t mentioned.
I was sure restraints would be documented by my guess is that a bit of “manhandling” – pushing young emaciated women around – wasn’t classed as restraint.
Then there was the vicarious trauma of hearing everyone else’s cries, the woman who fought back and got taken to the general psychiatric ward “until you’ve calmed down”, the women who were in and out of that ward every few months, the woman who had been there for a few years, the woman who died on leave and being told that it wasn’t really our business to be furious with the psychiatrists for not protecting her, or maybe contributing to making her life unliveable.
I was given therapy whilst on the ward, 14 sessions documented in great detail in my notes by a therapist whose stance confounds me. She found me, “defiant… confrontational…challenging…hostile…resentful…attacking… aggressive…. defensive…aloof…contemptuous”.
It didn’t seem to occur to her that the walls I put up protected me from the contempt of the staff, the disempowerment of the ward, the endless torture of having to face your greatest fear 6 times a day, deal with your mental illness and intrustive thoughts in every gap, be scolded for being ill in the place that is supposed to be knowledgeable about your illness, that you might, I don’t know, maybe be a bit cross about it all?
When I expressed distress about being on the ward, anger towards staff or other patients she encouraged me to get to know them or to take part in groups. She couldn’t hold space for me to process what was happening to or around me. And when I picked this up and didn’t bring it up again, she noted our relationship was improving.
The final therapy session before I discharged myself I cried “like a very small child” about being granted less leave than I had requested, I felt “insulted and humiliated”. I cried the tears of a trapped, lost, desperate, dehumanised, humiliated, lonely young adult, and she asked me if I was not crying as I cried as a child when my mother left me to go to work.
It made me laugh that that was the last interaction we had. As if she hadn’t heard of Ockhams razor. Or the cigar that was in fact a cigar. I was crying because the hospital was a hellhole and I knew I was not getting or going to get better. Because I knew I was leaving more “’damaged” than I entered.
My belief is that in a state of malnutrition, a physiological famine trauma, whatever the cause, our nervous systems and limbic brain is picking up information in a primitive way. We absorb relational trauma in a similar way to childhood trauma because we are regressed to our basic survival functions as we were then. When we are met with harshness we don’t need to have had a neglectful caregiver to begin to demonstrate signs of neglect and abuse.
I have had to spend so long arguing that I don’t have causative trauma preceding my anorexia. I have trauma caused BY the anorexia, and more so its treatment that happened to save my life and caused the refeeding syndrome it was meant to protect me from, that managed to end the revolving door and be my final admission.
By making the experience so awful that I discharged myself from inpatients and then outpatients and then when I relapsed never sought help and put my family through so much having to cope with me on their own as we muddled through it until I galvanised myself to address this independently.
Sometimes when I see eating disorder campaigns calling for better access to services it makes me so sad and angry, I don’t want more people to go through what I did. We need life saving interventions and anyone who needs their life saved, at whatever weight or stage these illnesses have made their lives unbearable.
But until services are not premised on a punitive ethos, to negatively condition anorexia sufferers out of the illness, I want to urge people to be careful what you wish for. Despite the layers of denial and the cognitive impairments to insight, we do know the illness no longer protects us from pain and instead causes it, we don’t need a hospitalisation driven by the desire to tell us “look where your silly little thin-fixation leads you, let this be a lesson not to lose too much weight”.
No amount of awareness raising seems to have changed the underlying assumption that madness = badness.
I feel like I should be caveating what I write with an endless stream of self-awareness. I know that I was distressed, anosognosic, rude, loud, difficult, non-compliant, disruptive, violent, symptomatic and in danger. I know that these interventions were in response to that and yet I still found them traumatising. I am not writing to present a solution – I don’t know what could or should have been done instead within the constraints on the system and the situation – my visioning for a future ideal would be a completely different system from the ground up.
The prevailing paradigm in mental health is punishment – giving the excuse as “institutionalisation”, the aim of eating disorder wards is to be so awful you keep yourself well enough to stay out. Despite many people requiring repeated admissions, the paradigm remains the same and staff admonish you get “get out and stay out”.
This is somewhat effective, I had three admissions, my third being the most horrific and that experience did motivate me to “stay out” although it meant I was left unwell and without support, too afraid and hurt to engage with services but unable to take care of myself.
It’s not overwork or bad apples that make staff cruel – of course most staff are exhausted and underpaid and some get into the job because they like power over vulnerable people, but that focus distracts from the fact that institutions are set up to dehumanise mad people, a strange mix of infantilisation (you don’t know what’s good for you, I have the power) and chastisement (why are you doing that?). You are non-compliant, resistant, you need to be trained to not get attention for your bad behaviour.
Something has to overcome the cognitive dissonance of a person sectioned, and therefore deemed not to have decision making capacity due to illness, who is then castigated for behaviours (symptoms) and treated as attention seeking, troublesome, wilfully sick, who thinks she’s special, who should take responsibility
It seems that some of this comes from not understanding mental illness, even well meaning staff ask “why are you doing this to yourself”, “why don’t you want to comply and get out” as if they don’t understand the reason people are on the ward.
Alongside punishment, or a sub-category of it, is coercion and threat, most admissions are forced or coerced, wards are locked (I don’t know why I was surprised but realising the ward was locked was a horrible shock to me) and compliance is gained with threat of worse treatment. On an eating disorders ward the ultimate threat for distress was transfer to the general psychiatric ward which occasionally patients would disappear to for 24 hours to be sedated.
Units are protected by invisibility, although OTs, dieticians, social workers and psychotherapy came onto the ward, the team was permanent and complicit. No external professionals were coming in or asking questions. Psychotherapy was particularly complicit – criticisms of the ward were psychoanalysed away from their material reality – I was told I should “get to know” other patients, “find things in common” and “get involved in activities” when I told of bullying, abuse, screams of distress, competition and loneliness. An episode of extreme distress at not being granted leave or given reasons was related to “not getting what you want” and she asked “is this like when your mum left you to go to work”.
Dehumanising patients also involved mocking us – for me my veganism was mocked (although veganism presents a conundrum in eating disorder services, and should be examined and possibly challenged, laughing at someone telling you they care about animals as if it’s not possible to have both ethics and anorexia, as if every belief is a symptom is mocking and cruel) as well as compulsive exercise (yes watching someone jog on the spot and then try to avoid detection is humourously pathetic, I know it’s a bleakly funny sight, but laughing outright at a persons distressed compulsions is also cruel).
Diet culture is endemic in ED services and a lot of comments showing anti-fat bias get made – whether about gaining “too much too fast”, determining a maintenance plan at a conservative BMI, telling patients they “won’t get fat” and so on.
I’m going round in circles here but to reiterate – dehumanising patients looked like, being mocked, being threatened (with transfer, section, tube feeding, restraint, losing leave), being endlessly reminded I was on a section and my consent was not required for tube feeding, being excluded from care planning and having unreliable, irregular meetings with the psychiatrist, being manhandled (although I remember being restrained, this remains completely undocumented in my notes. I can only conclude that it didn’t need to be written down as it wasn’t a formal restraint, just the pushing around and holding down an underweight young women who didn’t require much force to be overpowered), being shown a lack of compassion or any acknowledgement that my behaviours were a symptom and not a conscious choice or measure of my character.
A word to finish on nursing observations, 1:1 observations, on the toilet, in the shower – where your showers are timed for being too long, your bowel habits are commented on and, with new policy, nurses will wear body cams – is humiliating. It is predicated on humiliation because if you do exercise or purge whilst being observed you will either just be told “don’t do that” or restrained but mainly the threat is that if you do behaviours you won’t come off observations so the primary threat is the continuation of the humiliation and the admission and lack of leave, independence or autonomy. At no point is recovery or wellbeing mentioned.
It’s incredibly painful to speak about what happens on these locked wards. I was ill and vulnerable and left the hospital more ill and more vulnerable, at a higher weight but traumatised.
Because of this “access to services” is not what I want Beat to be asking for; services need to be transformed. I also don’t want “Accommodations for autistic patients” or any other small accommodations that make treatment less worse, not least because these won’t be applied because no one wants to make the experience less traumatising in case patients “like it” and “feel safe and cared for” and become “institutionalised”. I think this is more or less a straw man, most people want their liberty, most people who prefer hospital to independence is because of how bad life is outside not how great hospital is inside. Of course both repeated/long term admissions and proper supported living would make you a “drain on the state”, hence the system we have now. Until the idea that treatment must be horrible to prevent relapse, rather than effective is shaken then I cannot bring myself to ask for crumbs.
I believe many suicides attributed to the illness are a response to the “treatment”. Facing your worst fear 6 times a day every day under threat and coercion with little support or compassion, possibly brutally with restraint and tubes – not wanting to live whilst experiencing that every day? Yeah, I felt like that too.
It’s not much use saving someone’s life if they leave with so much trauma they don’t want to live it
I can’t remember where I found this quote but it was written: “The treatment of AN, the violence, the behaviour modification, EDUs, who services decide to let die or forced to live”.
A section and enforced inpatient stay including force-feeding with a naso-gastric tube did in fact save my life. I am ambivalent about that. I am not uncomplicatedly grateful. I will criticise the clinicians, the institution and the system. I am still here.
I am actually now a therapist and that just makes me more critical, I can understand why decisions are made and things are said because I know the prevailing beliefs both psychoanalytically and psychiatrically and institutionally in the NHS. None of this makes it OK.
I don’t actually want to see a world where no one has anorexia, it’s an illness that is like 80% genetic in cause and has been around and documented for many hundreds of years and possibly has always been within human genetic diversity. Arguing for eliminating it would be eugenicist. I want us to be held, supported, fed and allowed to explore a meaningful life without being subjected to violence and correction.
I don’t want to see my experiences “formulated” – the diagnosis of anorexia nervosa is very accurate for me, it describes most of the compulsions, fears and delusions I experience accurately, when I experience them very intensely I say “I don’t feel well” because I see them as symptoms of a chronic illness, I do not agree that “madness is a sane response to an insane world” in my life – I have a brain that was predisposed to, and then developed, an incredibly strong fear or food.
It’s kind of just bad luck, but it’s also who I am so I don’t see it firmly as good/bad although it certainly makes my life quite difficult, now I live with it and manage the trauma I endured in its “treatment”.