Published 24 September 2009, doi:10.1136/bmj.b3800
Cite this as: BMJ 2009;339:b3800

Practice

A patient’s journey

Anorexia nervosa

¹ Department of Psychiatry, Oxford University Warneford Hospital, Oxford OX3 7JX, ² Cotswold House Specialist Eating Disorders Service, Warneford Hospital

Rebecca was diagnosed with anorexia nervosa at age 15 but is now a qualified doctor who is able to maintain a healthy weight, manage her workload, and engage in normal relationships

I was recently asked to sum up my experience of anorexia nervosa in one sentence—actually, I can do it in just one word—isolation. This may seem surprising, but when you have spent a decade fighting an illness that forces you to go against the natural instinct to protect yourself, and that creates a life so constrained by rules that it is impossible to live normally, you feel completely alone. Anorexia makes you change your view of yourself, always to one that is highly negative. Reversing this is a challenge, and one that is easily underestimated. I have had to rise to this challenge while at medical school, and now that I have finished my training I have begun to reflect on how anorexia has affected me and how lucky I have been to overcome it. I wrote the following while I was very ill in hospital. It gives an insight into the pervasive nature of anorexia and why it has the highest mortality of any psychiatric condition:

"I am stuck in a black hole I have dug for myself. It is entirely my fault. I am fat, useless and hopeless. I want to get better, but it is hard to make positive decisions when the anorexic thoughts are making me obey their rules. Some describe the anorexia as a gremlin on their shoulder, but I think it’s more like something infiltrating my mind, putting in negative thoughts whenever there is a momentary gap. The ‘voice’ isn’t like a hallucination though, as the thoughts are like any others I might have, and I know that they are my own. The problem is that the urges not to eat, to stay thin and feel safe penetrate every waking moment. I have no respite; it is an endless bloody battle in which I am always on the losing side."

The news

I was a typical victim of anorexia—a high achieving, perfectionist, middle class teenager to whom no one would have thought it would happen. But it did; a gradual two year descent into severe food restriction, overexercise, deviance, and my own little anorexic world. I was 15 years’ old and extremely weak by the time a diagnosis was made, and it was the first time I had heard of anorexia nervosa. When I received the news it had little effect on me—I was so entrenched in the desire to lose weight and stay inside the "safe" place that anorexia had provided that I couldn’t see beyond the next meal, let alone consider my prognosis. I was in complete denial, insisting that nothing was wrong. For my family it was an enormous shock, not just the diagnosis of a mental illness, but the feeling of helplessness at not being able to feed their own child.

An opportunity missed

I had first visited my general practitioner several months previously because I was concerned that my periods had stopped. He was very approachable and suggested I start the oral contraceptive. I left feeling confused, but dutifully redeemed the prescription and started the pill. I was extremely underweight, so it was unfortunate that the diagnosis was missed, because the anorexia was gradually getting worse. Anorexia commonly presents as amenorrhoea, constipation, or chronic fatigue. Because patients with eating disorders lack insight into their condition and early diagnosis is associated with a good prognosis, doctors should always keep these conditions in mind.

Later that year I was referred as an emergency to the adolescent mental health services. There my parents and I were seen by a psychologist, who made the diagnosis and offered us advice on home refeeding and family therapy sessions. This is standard management of an adolescent with anorexia, but my experience makes me feel that direct referral to a specialist eating disorders team would have been much more helpful. Because of the lack of inpatient facilities in my area, my family was left to manage the situation at home. My parents’ perseverance against the stubbornness and deviousness born of anorexia allowed me to reach a safe weight, but I received no help in tackling the causes behind my illness. My family had been assured that my recovery hinged on weight gain (true), with the suggestion that this would be sufficient for me to regain full health (false). When I left home for university I quickly relapsed, which was upsetting for my family. I think it is important to make it clear that recovering from an eating disorder is extremely difficult, and to warn the family of the risk of relapse.

A clinician’s perspective The eating disorders charity, Beat, estimates that more than 1.1 million people in the United Kingdom have an eating disorder. Of these, 10% are struggling with anorexia nervosa, which has the highest mortality of any psychiatric disorder in people under the age of 65. Although an average general practice will have just two patients with anorexia, the frequent lengthy consultations and cross specialty liaison needed to provide optimum management means they represent a great burden in terms of time and worry. People with anorexia may not want to recover. Although they want to be rid of their symptoms, their illness can give them a sense of control over their life, thus providing predictability and an identity. The idea of giving it up seems terrifying—like suggesting a mother give up her newborn baby to avoid the low mood associated with endless sleepless nights. For many patients this means that the first stage of treatment has to make them want to change, and their resistance can be frustrating for those trying to help—be they family or professionals. It is crucial that patients are not dismissed as being trivial by focusing on weight and shape to measure self worth. Anorexia poses a considerable risk to physical and psychological health, so both aspects must be tackled together to optimise the chances of success. The physical manifestations of anorexia are classically those of starvation, but other behaviours—vomiting, taking laxatives, and overexercising—may also be presenting features. In a patient with osteoporotic fractures, subfertility, and an incompetent lower oesophageal sphincter, many specialties may be involved. A high index of suspicion by all doctors and good communication with the referring psychiatrist or general practitioner are essential. The greatest challenge for a person with anorexia is to acknowledge the condition and develop insight. I have treated Becky for five years and have seen her at many different stages of her illness. Being in Oxford, she has had access to a specialist service that can offer patients intensive treatments and support until they are ready to change. In areas where specialist services are not available, stretched primary care trusts must decide whether to send patients out of area for expensive treatments that may not work. This inevitably occurs when life is threatened—long inpatient stays then seem the only option, because local facilities cannot provide "step-down" day patient or outpatient care. Unfortunately, the nature of anorexia means that this cycle may be repeated many times. As Becky points out, refeeding is merely the beginning, and guidelines from the National Institute for Health and Clinical Excellence recommend that psychological follow-up continues for at least one year after discharge. The current NHS emphasis on time limited treatments therefore makes appropriate treatment of anorexia challenging. Often patients are simply discharged back to the general practitioner, who not surprisingly feels abandoned with a very ill patient. Severe anorexia is a difficult illness to treat in a health service with limited resources. However, with specialist help given over an adequate time, it is possible for the patient to recover and, like Becky, return to a normal and productive life. Nicky Boughton Nicky.Boughton{at}obmh.nhs.uk

The usual course of anorexia

My illness has followed a course typical of anorexia—a slow development into the full blown clinical syndrome, followed by several relapses despite extensive treatment. Prognosis is usually quoted as the "rule of thirds"—a third fully recover, a third partially recover, and another third have chronic problems. Recovery is slow—it usually takes three to six years. I have had multiple courses of cognitive behavioural therapy and received day patient and inpatient care. As an inpatient I was put on a specialist programme combining refeeding with intensive therapy designed to reduce eating disordered behaviours and improve self esteem. With each course of treatment I made steps towards recovery, but each time I quickly relapsed, because I refused to admit that to succeed I needed to leave the illness completely behind. I believed initially that weight gain would make the "voice" go away, and I know it can happen, but for me it hasn’t. I still have the disordered thoughts, but I try not to act on them, and they are gradually weakening. I always tell others that no hospital or specialist can cure them—they can help initiate changes, but the legwork is done at home, day after day, by resisting the anorexia until you gradually start to win the battle (box).

What has helped and not helped me fight anorexia Helpful Having a supportive general practitioner in recent years Seeing the same (excellent) psychologist—who has not given up hope in me despite several relapses—throughout my inpatient and outpatient treatment Learning to trust that my treatment team will not allow me to "get fat" and that their advice is only for my benefit My family learning about eating disorders, so they can understand my struggles Building up my self esteem—friends and family are important for this, especially in the competitive environment of medical school Realising that the anorexia won’t just disappear, that I have to ignore it until it gradually backs down Becoming involved with the eating disorders charity, Beat, and helping others who have eating disorders Broadening my world beyond my career—playing in a band again and doing gentle exercise Not helpful Late diagnosis because the general practitioner was not "on the ball" Lack of specialist treatment when I was a teenager People telling me just to start eating again and to stop being so stubborn Not admitting there is a problem and burying my head in the sand Being abandoned by most of my peers Struggling with the stigma associated with the "size zero" culture and having a mental illness Some doctors seeing mental illness in a negative light

Making the journey alone

When I was deeply entrenched in anorexia, it was difficult to motivate myself to do anything. My concurrent depression heightened this problem, and I struggled to meet the commitments needed to progress through medical school. It has taken me eight years to complete my training, during which time my friends have qualified and left me behind. Dropping behind my peers has worsened my feeling of inferiority, and I found it difficult to fit into a new year group. This made me feel very alone, and the safety of anorexia beckoned strongly. I have found that most people ignore the anorexia completely, pretending it isn’t there—this is especially true of clinicians. Those friends that have stuck by me have provided invaluable support and helped me adapt to my changed circumstances. My relationship with my family has been very strained at times, because it is hard to cope with someone who seems to be making such self destructive choices.

The future

After 10 years, I have finally reached the stage where I can maintain a healthy weight, manage my clinical commitments, and engage in normal relationships. I am by no means completely cured of anorexia—I still fight it daily and feel enormously fat and inferior—but I have turned the corner. Recently, I fractured my patella from a fall, a painful reminder that I have been left with osteoporosis, a common consequence of malnutrition.

No one knows exactly why an eating disorder develops, but when you have endured one the answer becomes irrelevant. I have started putting large amounts of time into raising awareness of the dangers of anorexia—especially among other doctors—both as an aid to my recovery and to prevent others from having to face such an isolating experience.

Web based resources for patients and health professionals Beat (www.b-eat.co.uk)—The leading UK charity providing information, help, and support for people affected by eating disorders, particularly anorexia and bulimia nervosa National Eating Disorders Association (www.nationaleatingdisorders.org)—US charity that provides education, resources, and support to people with eating disorders Bodywhys (www.bodywhys.ie)—The National Eating Disorder Association of Ireland offers support, information, and understanding for people with eating disorders, their families, and friends Institute of Psychiatry (www.iop.kcl.ac.uk/sites/edu)—Website developed by the eating disorders research team at the Institute of Psychiatry in London. It has resources for patients and carers, plus the latest results of research in the field Something Fishy (www.somethingfishy.org)—Website with extensive resources, bulletin boards, and chat facilities aimed at promoting recovery from any eating disorder. It also has a useful treatment finder, with worldwide coverage

Cite this as: BMJ 2009;339:b3800

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This is one of a series of occasional articles by patients about their experiences that offer lessons to doctors. The BMJ welcomes contributions to the series. Please contact Peter Lapsley (plapsley{at}bmj.com) for guidance.

Contributors: RM wrote the main text of the article, and NB wrote the clinician’s perspective box.

Competing interests: None declared.

Provenance and peer review: Not commissioned; not externally peer reviewed.

(Accepted 4 March 2009)

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