I spent nearly 20 years of my life (over half my life), as a ‘Revolving Door Patient’, swinging between admissions to psychiatric wards, hung on a barbed wire rope, choked around my neck. This is what it felt like — being strangled by barbed wire. I experienced ‘tactile hallucinations’ of being throttled. It was hard to breathe. I would hear voices demanding my destruction, telling me I was a ‘bad person’, I ‘deserved to die’. I would panic, scream, and concord — to the voices, not the ‘treatment’.
These sensations were partially caused partially by the damage on my brain (following a TBI), and also by malnutrition. I was very underweight for many many years — wrecking my bones, and my mind. I did not think I was ‘thin’, quite the opposite. I thought I was obese, and did not deserve or need treatment. ‘Give it to someone else, who is actually ill,’ I would say to the clinicians. ‘I am just a bad person, I deserve to die. That is what he (the voice, whom I named ‘Darkness Clings’) says. I agree.’
I had to go through some very unfortunate incidents during my long period of illness. In effect, much of my ‘treatment’ added to my already terrible experiences of trauma.
But, eventually, I was admitted to Cotswold House Ward, in Oxford. Here I found the ‘CBT-ED’ model of care, which was radically different to anywhere else I have ever been. My experience of this model was holistic—it incorporated and relieved all parts of my complex, co-morbid ED. My psychologist moulded and nuanced the CBT-ED model around my individual needs, strengths and weakness. Interactions with members of the multi-disciplinary team and attending groups enabled me to use my art, painting and poetry to express my most difficult issues, about trauma, abuse, dissociation and amnesia. In this way, it felt as though I was guiding and informing my own recovery.
Now, I cherish my recovery, and I’m working with the very trust that enabled me to thrive with it. The aim is to share and apply the CBT-ED model, which helped me so much, in hospitals across the South of England. This involves confronting the biggest problem faced by healthcare for ED — not only the impenetrable exertions posed by the NHS, but also opening a whole cultural shift in attitudes towards eating disorders, in the UK.
Admissions to EDUs are lengthy, it’s very easy to become institutionalised. Wards are often locked; every moment of the day and night is ordered and controlled by staff. It often feels like being in a prison. Prisoners apparently reoffend at a rate of 60 per cent (for short-term prisoners, in the UK); there is a similar rate of relapse and hospitalisation for patients in EDUs.
I know it well. In previous admissions, I have been discharged when totally unstable, and nowhere near ‘recovery’. I was terrified of weight gain, or being anywhere near ‘normal’ (not that I had any idea what this was). Various consultants fed this attitude, by offering such a low target weight so it appeared that having a BMI of, say, 14, was fine, normal, even. I’d be discharged.
The only guarantee was relapse. The illness was a comfort. It’s easier to be detained, locked up inside the hospital bubble, than “living” (whatever that is) in the real world. I became institutionalised, caught inside the yo-yo of discharge, relapse, restrict, self-harm, dramatic weight loss, suicide attempt, being sectioned, admitted to acute psychiatric ward, refuse food, water, medication (everything), rapid physical deterioration, chronic psychosis (amidst everything else), admitted to EDU, remain here for four to five months, put on a paltry amount of weight, continue self-harming (they made it a policy to ignore my self-harm), discharged (disturbed, disturbingly underweight), and the whole circuit went round again.
Until, finally, I learnt that I did not have to be locked, detained inside this eternal, institutionalised cycle. There was a way out – not to die, but to make a new life for myself, by opening a revolutionary new spectrum called recovery, which I had never dreamed of existing, so proximate, before.
Now, I am an advocate, campaigner, writer, arts in health researcher. I am also training to be a Peer Support Worker, with the view to work with the Trust who helped me get well. I am determined to open treatment possibilities for people who have eating disorders. I want to use my own recovery to show people that it is possible to live a happy, pain-free and colourful life — without the illness.
I want to connect stories of recovery — to find out what works, where, why and how. Will you join my crusade/campaign for better treatment?
Please send me a message, see ‘Contact’ on the left hand side of this page.