I throw the bread. It misses the nurse and lands in the metal sink with a pathetic thud. I run out of the kitchen, through a door labelled “quiet room” and kick a beanbag. I kick it again and again, until all I can see is the red fabric and white wall blurring into pink. I want to smash something, I want to break things until I collapse with exhaustion and never wake up.
But psychiatric hospitals are built to stop people like me doing that. No door handles or light fittings; no sharp objects or windows that open more than an inch. It is March 2017. I used to have a job, a life. Now, I am a 32-year-old woman who isn’t allowed to be alone with a pair of scissors.
A clatter at the door. Staff here wear lanyards attached to name badges and bunches of keys to doors we can’t enter; you hear them coming. Caroline is one of the nurses in charge, and has worked in eating disorders here at the Maudsley hospital in London since before anyone really knew what they were. I tell her about the bread, and how the nurse was making me butter it, and that I haven’t buttered anything in 15 years, and how I’m so ashamed. I know she was only trying to help.
“This is not about a sandwich,” Caroline says.
I am convinced the butter is somehow seeping into my body, fat cells multiplying inside my thighs. “I’ve failed at every single thing in my life and now I’m failing at this,” I say.
“Jenny,” Caroline says. “The only successful anorexic is a dead one.”
I’m not quite sure where it all began, my eating disorder. Nor the marching orders in my head that told me again and again that I wasn’t good enough. I do remember going to the toilet at infant school and seeing myself in the mirror, my stomach curved like a road hump underneath my green school dress. I wasn’t much older than four. I turned sideways and watched the effect of sucking it in, and was disgusted at the difference. I hated my flesh; I wanted to be all bone.
I was loud and chatty and good at school – slim, yes, but not worryingly so. Then, in the mid-90s, the economy tanked and my family were made homeless. I was 10. We had lived in a cramped studio flat; my parents slept on the sofa, my brother and I had bunk beds. The court gave us 24 hours’ notice to shove everything we could into boxes before the repossession took place. I watched from the window as the bailiffs took the television away.
The council found us a room in a homeless hostel. At the time, Kemptown in Brighton was where you went to buy drugs or sex. The walls were splattered with blood; there were used needles on the brown sofa; burned tinfoil and brillo pads clung to the carpet. After I walked in on a man injecting heroin in the shared bathroom, I stopped going to the toilet. I stopped eating, too.
Did I starve myself because I grew up poor? Of course not. People do not starve themselves because they are wealthy, either. But my family were victims of a rigged system, as their parents had been before them. Mental health problems sift through generations; anger gets magnified. I did the only thing I could: I tried to take control.
As I moved into my teenage years and my 20s, periods of depression and disordered eating would come and go, resurfacing at times of loss, heartbreak or overwhelm. To begin with, restricting what I ate made me feel invincible: if I could conquer this basic human need then I wouldn’t need anything or anyone. There would be a brief period of elevation. Bliss, even. I carried kitchen scales in my handbag. I hid, stole and lied about food. My life was propped up by the safety of rules and rituals.
People around me worried, of course, which I suppose is what I wanted: my weight expressed my feelings so that I didn’t have to. It was during my 20s, when I was living independently, that things took a sustained downturn. If anyone asked, I would say I liked exercising, and that eating “healthily” made me feel good. Often, concern masked a sick fascination. “How do you not get hungry?” a girl at a party asked me. “How many calories a day do you eat?” asked the HR manager at my work, just after I told her I was about to be admitted to the Maudsley. She asked, she said, because she was getting married later in the year and her jeans were getting a bit tight.
At some point, you either starve to death or your body will overrule you. I remember the exact moment that happened: dinner at a friend’s house, when I was 28. I had picked at the vegetables on offer. I went into the kitchen alone and there it was: a tray of shortbread. I had “given up” sugar two years previously. Each crystal glistened under the halogen lights. I picked up three pieces and shoved them into my mouth. The rest is a blur.
To this day, few things scare me more than binge eating. It is like being possessed. You are at war with yourself and you are losing. Your body is fighting to live. Supermarkets and cafes and cornershops lie waiting to yank you inside, to the food, because that is all you can think about: food, food, food. It is 5am, and you are on the night bus to a 24-hour supermarket to replace the food you stole from your housemates before they wake up and find out. By daybreak you are at the swimming pool, and you swim length after length until it is time to go to work. And so it goes: binge, restrict, binge, restrict.
The irony with binge eating is you start to look a little better: you gain weight, and so people think you are thriving. And on the outside, my life was a success. I’d had two careers – one in politics, one in media – by the time I was 27. I worked as a staffer on a music magazine. I was out all the time: at gigs, festivals, on a plane, at another airport, on a train. I barely remember eating a meal in those years.
But the shame around my bingeing meant that I lied. Gradually I stopped seeing people, terrified that even the slightest deviation from my strict regime would trigger another episode. They got worse: I wouldn’t remember where I had been. I dissociated. There were nights in police cars, in A&E, being escorted out of train stations screaming and crying by security guards. I told friends I was working, that I had a deadline; I told work I had family issues.
I went to my GP long before the bingeing episodes, when I started blacking out. She asked me how many calories there were in a carrot. I told her. “You see, you know what to eat,” she said, before telling me to find a private therapist, which I couldn’t afford. My behaviour and low BMI at that time more than exceeded the diagnostic criteria for anorexia nervosa. She never even bothered to check.
My GP watched over my decline for two years before referring me to the local mental health team. It was more than six months before I got an appointment. I went on to have multiple psychiatric assessments, all months apart, where they would write things like, “Jennifer was wearing shoes and a coat, and was dressed appropriately for the weather,” or “The client displayed objective episodes of tearfulness.” The diagnoses thrown around ranged from bipolar disorder to borderline personality disorder to schizophrenia to bulimia (none of which were accurate). I was finally referred to a psychiatrist at St Ann’s hospital in London, who diagnosed me with atypical anorexia. The consultant psychiatrist laughed when I told her how I lived. “Pheweeee,” she whistled. “You do have an eating disorder, don’t you?!” She said she would see me once every six weeks until they had space for me in outpatient treatment, which would be in eight months.
I was 31 by then. My living situation was complicated. I moved around a lot, eventually ending up in another part of London, in a different trust from St Ann’s. My psychiatrist referred me to my new local hospital, the Maudsley. But the NHS trust running it didn’t take direct referrals. So I found myself at the back of the queue again, paying 10p per sheet to photocopy my psychiatric reports in the corner shop because my new GP surgery couldn’t access them; sitting in front of men asking me the same questions about how I got here. I was treated not as an ill person in need, but rather an applicant for a job, hoping to be deemed good enough. Or, in my case, mad and thin enough.
I was assigned a mental health care coordinator called Paul, who told me that I had a “good figure” and he didn’t know what I was worrying about. I asked to see someone else and this was refused. I was referred upwards to a psychiatrist who peered over his glasses while he skimmed my reports. “Women like you,” he said, “want it all. You want the good career, you want to be thin. You can’t have it all.” He put me on the maximum dose of a mood stabiliser I later found out I didn’t need. He wrote in my report that he would not make the referral to the Maudsley, because these services were “reserved for individuals with more serious cases”. This was a fiction. I was given the number of a local NHS emergency mental health line that I rang one night, suicidal, thinking I might be able to plead my case. It went through to an answerphone message saying they were understaffed and there was nobody available.
I rang Paul every day for weeks to be told he was too busy to talk. Eventually, he called me back. I said I was frightened; that I was spending hours a day in the supermarket staring at food. The knives in the kitchen drawer moved when I looked at them. I was scared to leave the house in case I jumped under a train. He said he didn’t want to hear that kind of talk and hung up. I screamed and threw all the glasses in the cupboard against the wall. The neighbours called the police; three weeks later, my landlord evicted me.
In the throes of this, I met my new GP, Dr Stephens. I had arrived for my appointment on the wrong day; she was the on-call doctor and agreed to see me. It was only when I sat down that I realised my hands were cut and bruised from the glass, and I was shaking. “She must think I’m mental,” I thought, looking at her nice dress and pearl earrings. But I talked and she listened. To be heard was a small thing, but so huge. She raised a care quality alert, a report of a systematic failure to care for a patient, signed me off work and made me an appointment every week until “you get the help you so obviously need”.
It took nine months for the referral from St Ann’s to reach the eating disorders unit at the Maudsley. My first appointment there was rushed through – the receptionist couldn’t believe how long the referral had taken; she thought it was a printing mistake. When I arrived for my assessment, Dr Kern, the consultant psychiatrist there, seemed to know all about me already.
She knew about the wads of tissue in my pocket encasing spat-out muesli. She knew I took my scales everywhere. She knew how violently I hated myself and my body.
The choice she gave me was this: come voluntarily now to our full-time intensive daycare programme, and you’ll be able to sleep in your own bed every night. Or suffer a bit longer, and you might not have a choice in when or where you are admitted. For me, the choice was between a chance of survival or death. I agreed to start as soon as they had a place for me.
Established in 1923, the Maudsley is the younger sister of the Bethlem Royal Hospital, the old Bedlam asylum. The eating disorders unit sits above the female acute ward, which is where women who are about to be sectioned arrive. Wrapping the windows and doors of that ward is a cage, a 10ft high and 15ft wide green wire coop. Sometimes, patients manage to open the door and stand in the open air within it. Some cry, some yell: to be let out, to bring down the government, or just to say hello. (One hot day, a woman takes her top and bra off and yells for half an hour before staff notice and she is brought inside.) Our unit is quieter but I don’t feel any different from the people shouting on the steps: it seems natural to scream when you have lost your mind.
The intensive daycare treatment programme at the Maudsley is one of very few in the country: only 30% of NHS trusts have them, despite evidence that they are effective, and much less expensive than inpatient admissions. Inpatient care is designed as a last resort to stop you dying; daycare is designed to help you live.
You are in the unit 10am to 4pm, Monday to Friday, so working around treatment is not an option, even if you had the mental energy to do so. If you are lucky, you will have sick pay, or financial help from your family. If not, you will be navigating the Universal Credit system, too. There are about 12 of us, men and women, young and old, bulimics, anorexics, binge eaters, or a combination of the three. I am not the only one who has waited years for treatment; nor am I the only one who has experienced homelessness. Most of us have complex mental health issues. Some have waited very little time at all. This, it turns out, is because they have had assessments privately. I spend a long time very angry about this but, in truth, if I had a few thousand quid, or a generous insurance package, would I have hesitated?
Two nurses and two occupational therapists work with us full-time. There is also a dietician, a consultant psychiatrist, and a cast of psychologists and psychotherapists who help out at mealtimes and run therapy groups on managing perfectionism, tolerating difficult emotions, cooking and dietetics. We are taken food shopping. We have blood tests and weigh-ins every week.
We start the day with a morning snack; lunch is a full meal and pudding; there is another snack in the afternoon. We are supervised while eating – staff are hawk-like, checking nobody is smearing butter into their hair or pouring yoghurt down their legs to avoid eating it. There are no napkins at the table (to stop us spitting food into them); no talking about weight, diet or calories at the table; only one cup of water (so we don’t “waterload” to stave off hunger); everything on our plates is to be finished within a set timeframe.
Outside of treatment, we can see friends, but I find I don’t much want to. My friends are working, holidaying, living. I am unemployed, being told to scrape my yoghurt pot properly, trying to build a footpath back to sanity.
The staff here are brilliant but the assault on your eating disorder is relentless. You eat and you sit and you tolerate. You are supervised going to the toilet. Some of us sit and do jigsaws, others do colouring in. The newer patients cry or fidget or write furiously in diaries, as Capital FM fizzes in the background.
The programme is strict. Most of us have weight targets to reach. If you don’t meet them, staff will offer help. If you continually fall short, you will be given a warning. If you still don’t comply, you will be sent home on a “week of reflection”. Any more missteps, and it’s a discharge. Some people have come from inpatient services and struggle: daycare is a commitment to building a new way of living and coping. It takes time, in my case decades, to reach that place. It is devastating watching people get discharged early.
There are other reasons why staff are so strict: your place in daycare is dependent on funding from the Clinical Commissioning Group (CCG) in your borough. As your treatment is signed off in chunks, you feel constantly on the edge of a funding decision. The nurses know the CCGs that are notorious for delaying funding. One of my fellow patients is only granted money for part of the treatment; they are denied the cost of one-on-one therapy. The rest of us offer up some of our sessions to pay for theirs, but it isn’t allowed. The patient, our friend, attempts to take their own life some weeks later.
After 11 weeks in the unit, I am sent home for a week of reflection. I have not been gaining weight. I think of my bones, which a scan has told me bear the early signs of osteoporosis, and the life I am heading for: walking with a stick, stuck in the 15ft cage that is my mind. It is the cruelest trick my eating disorder has played on me yet: sabotaging my chance of recovery. And so I recommit. I follow my meal plan. I tolerate the horror of gaining weight.
Recovery is a word we use a lot. For me, it means finding a way to replace what my eating disorder gives me: security, a reason and a purpose. Towards the end of my year in hospital, we do a group therapy model called Tree of Life. I eye-roll, of course. Everyone draws a tree, even the staff. The roots are your background, the trunk your qualities, the branches your hopes and dreams, the leaves the people in your life. More metaphors are summoned: the storms that could uproot or damage your tree, such as bereavement, heartbreak, homelessness. In the last session, we work out what our mental illness represents. Japanese knotweed, I say: an uninvited, highly adaptive invader that, left unchecked, could strangle the tree. There is, I realise, no getting rid of it; the only solution is daily uprooting, attention and care.
The day I am discharged, it snows. It feels apt. The ground is laid, white and untampered, waiting for me to choose where I want to go. I am lucky, and grateful, to be alive.
Things have changed since my discharge. The Maudsley’s eating disorder service now takes direct referrals from GPs in the area. The offices of the mental health assessment service in which Paul worked is now a wine bar and “wellness” space. Nice guidance on eating disorder treatment now recommends four weeks as a maximum wait time. In 2017, a parliamentary inquiry into “avoidable deaths” from eating disorders pushed for urgent reforms in care, including better GP training and transition between services. Its follow-up report in June 2019 welcomed some changes made by the government, but concluded that “lives will continue to be lost under the status quo”. Progress, the cross-party group concluded, is dangerously slow.
Covid has, like so many things, shaken eating disorder services, reducing capacity and stretching waiting lists. There are still people being denied treatment because of their BMI or postcode. More people than ever, in particular black people, are being hospitalised because they are failed or misdiagnosed early on. This must change.
I won’t pretend my life is perfect now. I am still coming to terms with my new body weight and shape. I tolerate it, but a lot of the time I hate it. I still suffer from depression, and have episodes that can leave me catatonic for weeks. I take medication. I do therapy. I have to work on being well every day.
I sometimes wonder why I responded to treatment; I suppose there is a part of me that wanted to live. It is easier to be vivid and alive when you are not starving. I took up painting; I volunteer at a food bank; I put energy into my family and brilliant friends – some of whom gave me a place to live when I needed it, others who told me that I was still here when I thought I had gone. There is no way to thank them, or the staff who cared for me, enough.
Hospital pulled me out of the sea and gave me a tightrope to walk on. Every time I eat the thing the anorexic voice inside tells me not to, or go to the dinner I am terrified of, every time I butter the toast or skip my run because it is raining, the tightrope turns to a plank, which turns to a bridge. And I hope to keep going until there is a whole terrain underneath me, keeping me steady, so that if I fall, I will get up again.
• In the UK, Beat can be contacted on 0808-801-0677. In the US, the National Eating Disorders Association is on 800-931-2237. In Australia, the Butterfly Foundation is at 1800 33 4673. Other international helplines can be found at Eating Disorder Hope
• In the UK and Ireland, Samaritans can be contacted on 116 123 or email [email protected] or [email protected]. In the US, the National Suicide Prevention Lifeline is 800-273-8255. In Australia, the crisis support service Lifeline is 13 11 14. Other international helplines can be found at www.befrienders.org