Young people can recover from eating disorders, but help needs to be given quickly
22 July 2021
For people with eating disorders to have the best chance of recovery, it is vital that we keep a sustained focus on early intervention.
In 2012, I was 19. After nearly two decades of fixating on academic success, I had gained a place at my dream university and was studying a subject I thought I loved. I had wonderful friends, a music scholarship, and was on the rowing team. I had finally extricated myself from an unhealthy relationship, signed up to run a half marathon for charity and was going to volunteer at the London Olympics.
Unfortunately, I was also utterly miserable and completely obsessed with food: listing what I was consuming, reading restaurant menus, watching what other people ate, crying about the fact that I would never again be able to eat certain foods that I loved. I felt that I was a failure, and the only way I could stop being a failure was to be as thin as possible.
Things got very bad, very quickly. Before the end of the first academic year I had to leave the university that I had worked so hard to get into and move back in with my parents. By the time the Olympic Opening Ceremony took place in July, I had been admitted to hospital for treatment as an inpatient. A team of clinical psychologists, nurses, occupational therapists, and a psychiatrist told me what I would eat, watched me eat it, monitored my trips to the toilet and weighed me. I went from complete independence to complete dependence and constant surveillance in a matter of months.
Of course, there was also a lot of psychological therapy to help me dig up the roots of the problems I was having and devise strategies to cope with life’s challenges without resorting to self-destruction. A person’s ability to focus on these deeply personal and complicated matters, however, is severely compromised when their body is physically starving. I wasn’t able to make much psychological progress until after I was discharged from inpatient care.
The right treatment at the right time
I was so lucky to receive this treatment and I am completely convinced that it saved my life. During the few months that I was at home, the pressure on my parents and siblings was immense, with every day a seemingly never-ending battle. Luckily for everyone involved, they were (relatively) quickly relieved by a team of experts. I was only able to access care so quickly due to a compassionate and knowledgeable GP and the fact that a close family friend is a clinical psychologist who advised my parents that early intervention was the key to recovery. It turns out that he was correct.
A year after being discharged from hospital, I returned to university and continued accessing support as an outpatient for several years. Nearly a decade later I still have bad days, but I also live a full, independent life. I have a relationship, a pet, friends, hobbies and a fulfilling job. I don’t think that I will ever ‘love my body’ or feel completely comfortable ordering food in a restaurant, but my history is something that sits in the background of my life. I have measures in place to keep it at bay (you will never hear me talk about calories or see me buy a women’s magazine). It does not define my life.
Eating disorders have the highest mortality rate of any mental illness, yet many people do not receive treatment until they have deteriorated significantly, often over several years.
What are eating disorders?
For a long time, popular culture has portrayed eating disorders as predominantly affecting white, affluent young girls, characterised by extreme thinness. However, this belies the reality of the situation: anyone, regardless of age, gender, ethnicity or background, can develop an eating disorder. While some people with an eating disorder are of low weight, a disorder can be present at any weight. It is the way in which thoughts and feelings about food affect your life that matters, not the weight that you are on a given day.
Anorexia nervosa and bulimia nervosa are probably the best-known eating disorders, but others include binge eating disorder, avoidant restrictive food intake disorder and other specified feeding or eating disorders. They appear to be connected to other complex conditions, including depression, obsessive compulsive disorder, anxiety and autism.
What is the problem with how eating disorders are currently treated?
Eating disorders have the highest mortality rate of any mental illness. This is due to the severe physical effects of sustained malnutrition (affecting people of all weights), as well as the elevated risk of suicidal thoughts and attempts. Despite these serious consequences, many people do not receive treatment until they have deteriorated significantly, often over several years. In the UK, waiting lists are long and have doubled during the COVID-19 pandemic.
Of course, you will only be on a waiting list if your eating disorder is recognised, and this is far from a given. Research from 2016 showed that only around a third of cases in Europe are detected by healthcare professionals. This is further complicated by the fact that many people with eating disorders are ambivalent towards treatment, if not actively resistant to it. One of the many distressing facets of these diseases is their tendency to convince you that you do not need or deserve help. For many people, that feeling is further strengthened when they pluck up the courage to ask for help, only to be told by medical professionals that their weight is not low enough to require treatment.
Even if you can access treatment, what is offered in the first instance is not sufficiently intensive for many people’s needs. When food is the source of your distress, you are going to face your fear multiple times every day. Weekly or twice-weekly appointments with a therapist are often not enough, especially if the illness has already spent years infiltrating your life. The sooner effective, appropriate treatment begins, the more likely a person is to make a sustainable recovery.
What is early intervention?
Early intervention pathways for the treatment of eating disorders are supported by the Royal College of Psychiatrists and have been adopted as one of the programmes of work by the Academic Health Science Networks in England. The thinking behind early intervention is that the longer a brain operates in a certain way, the more entrenched those ways of thinking become. Bringing early intervention into eating disorder treatment was initially proposed following the success of similar models in psychosis care.
In recent years, researchers and clinicians have established a staged model of eating disorder progression and severity. This moves from ‘high eating disorder risk’, characterised by body dissatisfaction and dieting, through ‘early stage illness’, where symptoms have been present for less than three years and changes to the brain, body and behaviour are still thought to be highly malleable. The last two stages, ‘full-stage illness’ and ‘severe and enduring illness’, are when the condition is more resistant to treatment, and disability and mortality become more likely.
Any treatment before the three-year point falls under the category of early intervention.
The thinking behind early intervention is that the longer a brain operates in a certain way, the more entrenched those ways of thinking become.
Focus on ‘emerging adulthood’
My experience of developing symptoms at a point of transition in my life, when I was moving from school to university, is not at all uncommon. In fact, experts refer to a phenomenon of ‘eating disorders in emerging adulthood’ affecting people between the ages of 18 and 25.
Emerging adults are the focus of a service designed in London in 2014 and since expanded to 18 sites across England. First Episode Rapid Early Intervention for Eating Disorders (FREED) offers rapid access to evidence-based treatment for people aged 18 to 25 who have had symptoms for three years or less. Anyone referred to FREED has their first assessment within two weeks, with treatment starting as soon as possible thereafter.
Outcomes have been very positive, with patients less likely to require intensive day-care or inpatient treatment than those who received standard care, and over half of young people with anorexia reaching a healthy weight within a year. While weight is far from the be-all and end-all of recovery, people have also reported valuing rapid access to treatment, a focus on life beyond the eating disorder, building a support network for the future and being taught helpful therapeutic techniques that they can draw on in the future, all part of the approach pioneered by FREED.
What does the future hold?
The growing commitment to early intervention in eating disorders in England and the success of FREED are grounds for optimism. As someone who was pulled out of a very deep hole by early intervention, I am so heartened by the idea that other young people who find themselves in a similar situation will have somewhere to turn.
As with so much of the health system, early intervention in eating disorders is threatened by the COVID-19 pandemic. In February 2021, psychiatrists in the UK warned that they are bracing for a ‘tsunami’ of new referrals. Eating disorders are thriving under enforced isolation of lockdowns, increasing focus on obesity in public health messaging, and a sense of uncertainty and loss of control, especially among people at transitional stages of their lives. People are delaying seeking help for even longer than usual, owing to fears of overburdening a stretched health system that they may consider themselves unworthy of accessing.
It is incredibly important that the momentum behind early intervention in eating disorders continues beyond the pandemic, if we are to avoid a whole new generation of young people missing out on a far higher chance of recovery.