2001, Specialist Eating Disorder Admission: SEDU A
I went to see an eating disorders psychiatrist in a hospital in England. Before long I was admitted as an inpatient in a specialist eating disorders unit (SEDU) A. This was the first of over 30 psychiatric admissions. Rather than healing my budding and severely destructive illness, my time in this hospital taught me how to be a ‘proper’ anorexic.
Being surrounded by other eating disorders patients in a confined space provided much needed empathy, in my time of sheer isolation. But the longer I stayed, the worse I got. I had to eat, so I put on weight, but physiological improvement did not help the voices and the strange sensations I still had. Meanwhile, I learnt new behaviours. Continuous foot tapping, thumb sucking, avoiding food (chucking away, hiding, refusing), new forms of self-harm, absconding; all these behaviours were unremitting attempts to ask for help. I could not deal with the situation in my head/brain/mind/body, which was exacerbated in this excruciating environment.
Being an inpatient took me away from my home life. Being sucked into a world of ‘treatment’ was agonizing, but the illness had caught hold of me. It would not let me go. I had lost the control I was using the eating disorder to attain.
This is why I put up so much resistance to the programme. I was Lorna, the “difficult patient”. I refused to eat and would not comply with their regulations. The nurses would try to be sympathetic, but they said that they could not help me if I would not help myself. They said that perhaps I did not want to be well; I was not ready.
Before long I discharged myself (against medical advice) and went back to the farm where I lived. I may have put on some weight, but this soon came off, and nothing was resolved. On the contrary, I had learned tips on how to be more ill. I was sucked into a disordered mind-set, which warped all my strength and determination and sent it the wrong way. I could not get out of the danger. I plunged into it, even further.
2003-7, SEDU B admissions, England
I then had numerous admissions to local general medical and acute psychiatric wards, following massive overdoses, self-harm, and stopping eating and drinking. During one admission to an acute ward, I took 2 major overdoses, tried (almost successfully) to jump off a bridge. My consultant responded to these “behaviours” by writing to my GP, saying I should not be in hospital, he was discharging me immediately (with no follow up care) and I would not be readmitted, since I was “attention seeking”.
In 2003 I found myself admitted to another eating disorders unit (SEDU B) in England. I remained detained, as a revolving door patient, going back in and out of hospital.
My presentation flummoxed my new consultant, and all the medical team. They said I was “treatment resistant”, I needed “long-term hospitalisation”. They decided I should have Electroconvulsive Therapy – as a last resort. I agreed to do this only because I was told that ECT could kill me (which I thought I wanted). After doing some research, I asked my consultant why they were advising me to have ECT, when it would apparently cause further brain damage – did I not have enough damage to my brain, already?
In SEDU B, I was detained, restrained and sedated and they ‘treated’ the consequences of my brain injury by electric shocks. I have no memory of this revolting, terrifying experience, nor can I remember anything for a very long time either side of it. I was shocked until they decided that they did not think it was really working. With a confused brain and disintegrating mind, this ‘treatment’ was stopped. By this point, my memory problems had deteriorated even further, I was twisted, even more deeply disturbed and depressed. Electric shocks had clearly exacerbated the existing damage to my brain.
This is my consultant from SEDU B’s version of events and my case, from around this time. In a discharge summary (I was being sent to a local acute psych ward), they said:
Miss Collins is known with a long-standing history of depression, atypical probably organic psychosis with auditory hallucination. However no passive phenomena and also secondary to all this, severe eating disorder, anorexia nervosa, there is also brain-induced personality change and amnesia, as well as chronic severe self-harming behaviour and suicidal ideation.
This all began in 2000 when Miss Collins fell from the horse injuring her head. Subsequently she developed anorexia nervosa for the first time in her life, but before this she was a very high functioning student and an equestrian. A number of MRIs and EEGs were done which showed multiple lesions in temporal lobes and right frontal lobe. She has had numerous separate admissions for the above reasons, as well as a course of ECT. The first time when ECT was administered it was quite helpful but subsequently she failed to show any benefits there from. She has been resistant to all therapy including recent admission in February when she was commenced on Clozaril treatment. This had to be stopped due to bone marrow suppression. She subsequently stopped eating and drinking which, as mentioned, necessitated her admission to the General Medical Ward.
She has also tried to commit suicide four times in the past. In 2003 she took two OD’s whilst in hospital, and she also tried to jump off a bridge. There was also an OD in 2004. as well as most recently trying to kill herself by stopping the food and the fluids both for 29 and 25 days respectively.
It was confusing and damaging to be passed around the different wards. There was no treatment. I soon went back to SEDU B. Admissions here took the form of lengthy inpatient stays, with long periods of bed rest and tube feeding Ensure, with a few groups. I recall just one group, where we patients sat in a circle, in deadly silence, for one hour. The therapist was apparently waiting for someone to say something, but nobody dared speak. We just shook our feet, sucked our thumbs, stared at the floor, and avoided all eye contact.
At some point, I was discharged from inpatient and moved to a half-way house, attending a different part of the hospital as a day patient. This allowed me to falsify my weight very effectively, and intensify my efforts at acting ‘well’, until I was discharged.
I was water loading and falsifying my Target Weight by 4 kg, so it wasn’t real. Everything was a façade. Nobody suspected. In each admission, my height was different. I bent my knees, so calculations were skewed.
I was a serial self-harmer. I scored ‘DNR’ and ‘DIE’ on my body, although nobody understood these messages.
During one admission here, I was detained under Section Three. My notes describe my ‘Presenting problem’ as: ‘Severe anorexia to both solids and fluids which necessitated approximately two weeks of IV fluids at General Medical Ward. Also, persistent and extremely disturbing anxiety provoked partially by a demon-like voice in the head, which causes the patient to be very depressed, self-destructive and suicidal.’
During this admission, my consultant referred me to attend CBT groups. I agreed to do this because I thought it would mean I could be discharged sooner. As my notes say:
Lorna continues to attend as a day-patient although extremely reluctantly. She is very angry about having to be here, as she no longer believes that she requires intervention. Her days in the programme have been reduced from two and a half days to two days weekly. Lorna is very pleased about this. At her request to XXXX, she no longer attends CBT groups. Lorna feels that they no longer hold any value for her. She has expressed the same sentiment about EDU specific groups and makes it clear that she only attends because she does not want non-compliance to delay her final discharge from the service. Group therapists feedback that she rarely engages and that when she does, it is either very superficial or to express her anger or disinterest.
These CBT groups involved sitting in a circle and learning how to practise generalised, ‘healthy’ behaviours, to counteract the illness. This was unhelpful because it did not seem relevant to my own, particular situation. It was very different to the CBT I eventually had in my final admission (ICBTE), which was individualised specifically towards my illness, building on my strengths.
In SEDU B, I accrued a number of diagnoses, including: psychotic depression, personality change, personality disorder, severe anorexia, treatment resistant schizophrenia, schizoaffective disorder (from a second opinion) and rumination. My medication was changed multiple times, although at one point they stopped all antipsychotic medication after I had a seriously bad reaction to clozapine (something to do with white blood count and bone marrow). After this, my consultant took the view that no pills were ever going to cure me, I needed therapy.
I continued to have 1:1 therapy with a therapist I trusted – this was the only part of my treatment I really engaged with. This therapy was from a humanistic and existential model. I was encouraged to leave my old life behind, where I had become so desperately unwell, and start afresh.
During one admission, at the end of my 6 months of Section 3 the psychiatrists extended my section for a further 6 months. Disgusted by my containment, and by now demoralised, I found a lawyer to represent me and contested my section. This led to a formal tribunal, where I had the opportunity to fight for my fundamental right, as a living human being, to make a decision about my own life.
I wrote a speech that I would deliver to the court, explaining that I now had insight into my illness and would not run away from it as in previous episodes. The doctors and nurses’ argument, against me, stated that I was an extreme danger to myself and if taken off the section would “immediately relapse”, with a “very high risk of suicide”. They even talked about a need to keep me sectioned “for life”. I would never be free. I should be incarcerated for the rest of my life.
However, I got off my section. Eventually I was discharged, and I decided to start a new life for myself, as my therapist had advised. I decided to disown my family when I moved elsewhere in England to study. In hindsight, although I did not realise this at the time, I made this decision to have no further contact with my parents because I was still very unwell.
2007–2016 – admissions to SEDU C (England)
I lived in this city for several years, to study for my Masters and Doctorate of Philosophy. During this time, I was extremely unwell and hospitalised for lengthy periods, numerous times. It was extremely hard to receive the right kind of help. I was told I wasn’t ill/thin enough to be admitted to the SEDU. This meant I was usually detained in an acute ward in a general psychiatric hospital, in the context of a suicide attempt or severe self-harm.
On the acute ward, my key nurse told me, “You are much better here, they make you eat lots and put on weight at the SEDU. You won’t have to eat much here.” This nurse continued to ‘advise’ me. I recall her saying, “I suggest you eat carrots or powder soup when you are discharged. That way you won’t have too many calories. You can weigh everything on some scales – they sell them in Tesco’s next door.”
I was a bit confused by all this. I inevitably deteriorated (rapidly, alarmingly), until I met SEDU criteria, passed the exam, so to speak and, about to die from malnutrition, was accepted into the specialist eating disorders ward (SEDU C), for the first time.
Anorexia was my primary diagnosis, but I had multiple co-morbidities. During this time, I lived in a hazy bubble of uprising, strange and damning hallucinations. Other people couldn’t see what I could see. I was the only person who knew what was real. (Or so I thought.) I heard the man telling me to kill myself; I was damned. The only constant was self-construction. I had tactile hallucinations of lubricated barbed wire throttling me. I could hardly breathe.
My consultant on this ward managed multiple admissions over the next nine years. They diagnosed me with schizoaffective disorder, borderline personality disorder and severe and enduring eating disorder. She also did many tests on my brain and the consequences of the traumatic brain injury. This showed that I had severe memory impairment. I had scans and EEG and all the memory tests, which illustrated extremely serious (permanent) damage to my brain and consequent cognitive malfunction.
But nothing was done about this. I was discharged, with no ‘real’ progress, still underweight, and with no support. At this point, I had no contact with my family, no next of kin, very few friends. I was left to my own devices. Disaster.
I would stop eating and drinking entirely and collapse. I halved my body weight. The air disintegrated, as I disintegrated. I could see fractal patterns in particles. Colours made sounds, so I could hear noises when looking. I would stare into space, watching the curtailment of consciousness and the ensuing chaos of existence. It was as though I was watching a play, being performed in front of me. The characters in this play were odd and beguiling patterns, shapes, colours, sounds and solid particles touching me.
I was at death’s door. When you are at such a dangerous weight your perceptions are skewed and you can’t think straight. Once again, my brain was acutely dehydrated and starved. This exacerbated my original problems from the head injury. My memory became even worse; it was so hard to compose thoughts or concentrate. I kept self-harming. I recall my key nurse calmly asking me to let him know when I was going to kill myself, so he would be aware.
Eventually, I discovered something that helped me: painting. In hospital, I would paint all day, every day, to source relief from my pain. Painting eased the wounds because it allowed me to concentrate on something else. It set me free. My paintings allowed me to express myself in some other means than my wounds. The abstract images I created embodied my feelings and gave me a voice other than self-injury. I could show the ward doctor the paintings and he could then understand my illness, since I would paint how I felt.
I flitted in and out of hospital, whilst trying to research my doctoral thesis. My PhD was called Making Sense. I wanted to find out and understand how and why art has a restorative and healing function. French philosophers, however obscure, helped me to think about difficult ideas. Their existentialist ideas also, simultaneously, contributed towards my madness.
I had a (short) period of Cognitive Analytic Therapy during one admission. This involved making a map of my illness. I was unable to see the point of this exercise. Then it was finished, with no follow up.
Paris
I finished my PhD and got a job as a lecturer in Paris at the Sorbonne University. I was very excited about this new chapter of my life. It was a great opportunity to be teaching at such a prestigious university, and I went towards this new epic at full throttle.
However, my time in Paris was littered by further hospital admissions in various mental institutions. I enjoyed my work but I was not at all well. My health disintegrated, to the extent that I had to return to England and be admitted to SEDU C, several times.
The worst part was being detained in Paris. It’s so difficult to explain what happened, since my past has eroded and I have no living memory of this time. I just remember screaming, wailing, and running down the streets of Paris at night, with blood dripping down my arms. I was then detained at a very old mental institution in the outskirts of the city.
The nurses could not handle me. They forced me to take Valium 6 times a day. They tied me down to a bed in a white, padded cell. They sedated me, stuck a nasogastric tube up my nose, attached me to a machine and force-fed me. It could not get any worse.
Dumbfounded by my behaviour and symptoms, the doctors in France simply doped and ignored me. I stayed in hospital over Christmas, and then they sent me back to England (SEDU C), where I had been helped before.
Soon, things got much worse. I discharged myself from SEDU C and rushed back to Paris. My weight was life-threateningly low. I was right on the edge of existence. My brain (starved, dehydrated) could not function properly. I had strange, increasingly violent hallucinations, which I would try to hide from by focussing on incessant and paranoid obsessions about food and my weight. I tried to teach at the Sorbonne, but kept collapsing.
Soon my manager gave me some money and told me to get in a taxi and go back to hospital. Since I was hardly able to stand up, and melting in sheer floods of tearful, lonely agony, I followed his instructions. This episode began the next phase of my successive, longstanding detainments.
What happened next, in the ancient lunatic asylum in Paris, is unsayable
In my desperation, I rang my parents, I made a crucial and imperative action for my recovery. Having been apart from my family for so long, it was a big decision. I just said that I was sorry for all the pain I had caused in my separation from them. I loved them. I needed them. Please help me.
They did. My mother and father drove to the hospital in Paris and spoke to my consultant. I had to go to court to sort out my compulsory admission. Making a case for my rights to leave the institution, in a foreign language, against my own horrific history and injurious behaviour, was a monumental challenge. But the French doctors agreed that if my parents took me straight to A&E in England, where I could go to a ward which would be able to help me, then they would release me from my section.
Back in England
My parents took me to the emergency department, where I was admitted in a general psych and eventually taken back to SEDU C. I was sedated and put on a lot of medication.
I put on a bit of weight, but the men in my command hallucinations were still telling me to destroy myself. I was given elastic bands and ice, which I used to injure myself quite badly. But the nurses were told to ‘ignore’ my self-harm. I had bloody, blue arms and legs, but nothing was done. They would escort me down to A&E, when necessary. It seemed like nobody cared and I did not matter. Self-harm was a method of communication, but nobody was listening. Maybe I did not exist – only the men telling me to destroy myself were real. After several very scary incidents, ending up losing X litres of blood in A&E, I was told that if I continued to hurt myself, I would be expelled from this ward and sent back to the locked ward, where I would be sedated even further.
One day, I decided to stop self-harming. Cold turkey. At this moment, I was resolved to find other coping mechanisms. I used my painting and art to help me express myself. This worked well, for a short period of time.
I was discharged from the SEDU C. I had another few crazy, violent admissions to an acute ward. Then I moved to a house on the edge of the farm, where my parents live – as though I had gone in a full circle.
This meant I was now under the care of Oxford Health NHS Trust.
Mental health unit admissions, 2016-17
I was still unwell; I did some scary things. Nobody understood me. I had a few admissions to an acute psychiatric ward. I remember in one admission they put me on 1–1 observations, because they were so alarmed by the self-harm I had done and my risk. This meant I had a nurse by my side 24/7 for 2 weeks, and then I was abruptly discharged. My consultant said they could not ‘cure’ me, nor help me in hospital.
I descended into my peril. By now I had, again, stopped eating and drinking. I was sunk within my SEED, which everyone in the medical circle seemed to be ignoring.
Integrated CBTE Cotswold House SEDU, 2017-18
In the end, I had an assessment at Cotswold House SEDU. There were two options: the massive, fatal overdose I had ready to swallow, or a miracle. But I was admitted to Cotswold House, where they helped me make my own miracle: recovery.
The I-CBTE treatment model [1, 2] was a crucial part of my recovery. My psychologist, David, was very perceptive, sympathetic and compassionate towards my particular situation. He was able to mould and nuance a version of the I-CBTE model around my needs and in/capacities. As a result, I used my art (painting and poetry) to express the most difficult issues, about trauma, abuse, dissociation and amnesia. David would ask me to paint what I could not speak about. I was able to go away and paint a picture (abstract or figurative), which opened the unmentionables. We then discussed this painting, and approached the topic from a creative angle, which made it more possible to process. In this way I managed to start dealing with the most difficult roots of my illness. I had never had the opportunity to do this before. It was a crucial turning point in my recovery.
Every member of the multi-disciplinary team at Cotswold House contributed towards my treatment. I could speak to someone on each shift about how I was doing. In this way, I built trust with the team, as they all said the same thing, which supported my recovery journey.
I learnt that suicide and self-harm are not the only coping mechanisms. I learnt to create new, living ways to cope. I was encouraged and supported to imagine and build an identity for Lorna, without any of the accrued disorders. A new me – who could I be?
During previous admissions to other wards, I managed to convince the doctors that I did not need to put on much weight at all. The physicians then entertained this idea, and I never got to a healthy weight. I did not even know what a healthy weight was. The breakthrough came at Cotswold House, where I realised that if any kind of future or life was possible, I needed to put on a lot more weight and be this new thing – a ‘healthy weight’. I learned that doing this would allow my body to heal and it would give me the chance to finally live well. Suddenly, I had options: not just the eating disorder, but a future.
For the first time, all the pieces in the puzzle were put together. Things made sense. My medication was changed, which made a big difference. With weight gain, my body healed. My brain was always going to be damaged, but with knowledge and understanding, I could learn new ways to cope with its deficits. The groups in this SEDU were different to those I had attended in other hospitals, since they provided information and activities that I could apply and use to relieve my specific, complex illness. The groups helped me to work out what was wrong and how to make a better life for myself. All the nurses and therapists sang from the same hymn sheet, so to speak; this was a team approach to reinforce recovery. Everyone was supporting me to get better, using different methods and approaches. These, plaited together, weaved a model of care from which I could start to build my brand-new life.
This treatment changed my world view, in a positive sense. I have always been a highly competitive, ambitious and impatient person. I come from a background where holding very high standards is important. In my illness, constantly seeking these high (unattainable) standards became a critical and destructive force against myself. At Cotswold House, I learned that there are many negative consequences of pursuing high standards. I could conversely gain many benefits if I lessened my standards or broke up bigger goals into smaller chunks, rewarding myself for achieving or just doing little things along the way. I-CBTE helped me learn practical ways to reconfigure perfectionism and change my outlook in a positive way. I still have high standards; I do my best. But I know that mistakes happen and nothing is perfect. My recovery has shown me that at the end of the day, as long as I enjoy myself and do what I can, any mistake I make or a disappointing result is always a learning experience, contributing towards my ongoing development and happiness.
The I-CBTE model taught me all this. It worked for me because it was built on my strengths and flexible to my particular situation. Being focused on the here and now, it allowed me to build skills and strategies, so I could move forward in a healthy way, without being stuck in the trauma of my past.
Ongoing treatment in the community, 2018–2020
I was discharged from Cotswold House in 2018, and then I received care in the community – I-CBTE therapy, dietary support and a consultant. My I-CBTE therapy included elements that were shaped specifically for my needs, with trauma-informed, compassion-focused and mindfulness approaches. My new therapist was extremely kind and empathetic. Her practical support, her listening and her presence allowed me to test out new coping mechanisms and cope with my body finding its own ‘natural’ set weight, which was higher than I felt I could accept.
I received therapy until I learned how to be my own therapist. In this time, I accrued a bundle of go-to resources to help me deal with life’s continual ups-and-downs. By the time my weight settled, the numbers did not matter anymore. I stopped weighing myself – I had so many more important things to focus on. I was discharged from eating disorders services. My recovery grew stronger every day.
For many years, my eating disorder provided a (flawed) coping mechanism for the mental health difficulties I was having. After decades of unsuccessful treatment, the holistic, expansive care I received in Oxford helped me learn new, successful coping mechanisms for these difficulties. I will always have a damaged brain, which leaves me vulnerable, and what has happened to me over the years still affects me. But I am able to separate this from the eating disorder.
Long-term outcomes
I have been out of hospital for 6 1/2 years. I no longer have an eating disorder (severe or otherwise), I have made a full recovery. The life I have built for myself is astonishingly creative. I feel that I have hardly even started, there is so much more to say and do.
My story of recovery from a SEED demonstrates that it is possible to recover from a highly complex illness and live a meaningful, successful life, against all the odds. I always used to say to myself “Anything is possible”, especially when any notion of recovery or life seemed impossible to me. This mantra gave me hope, which provided me with a burning flame of energy when my body had no energy, and a boost of positivity, when I felt so deeply depressed. At my worst, I would say to myself, if it can’t get any worse, things can only get better. Life starts here.
I became a butterfly: I grew from being the cumbersome caterpillar, locked into their cramped cocoon, into a beautiful being with wings, who can fly wherever she wishes.
In other words, I did get better, thanks to eventually finding the treatment model that tuned into my strengths and allowed me to build a brand-new version of myself; that home-made miracle: recovery.
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