Eating disorders remain poorly understood by health services and the general public, say young people in a research study published on Youthealthtalk.org to mark National Eating Disorders Awareness Week (11-17 February 2013). Common myths about the illness, say participants, have prevented them from getting the treatment and support they need. The research was completed by the Health Experiences Research Group, University of Oxford and the new section on Youthhealthtalk.org shows video and audio interviews with some 40 young people who speak openly and frankly about the experience of living with and recovering from an eating disorder.
Over 1.6 million people in the UK are affected by eating disorders and the majority are aged 12-20. Eating disorders are complex mental health problems and deal with emotions, characterised by negative thoughts, perfectionism, obsessiveness, cycles of control and self-punishment as well as low self-esteem, depression and often self-harm. Eating disorders can affect anyone and, at worst, can be fatal, with anorexia nervosa having the highest mortality of all psychiatric conditions in adolescence. They most commonly develop during adolescence, are long term and one third of those diagnosed become chronic.
Key findings from the research showed that young people found it hard to make the first contact with health services. Often, once in touch with a health care provider, even after years of struggling in silence, they had to fight to get appropriate support. Some thought they were a burden – others felt they were not always taken seriously. One of the key findings showed that entry criteria to health support services were often weight-based which excluded people above a certain BMI (including people with bulimia nervosa and people with other types of eating disorders). This in turn could make young people feel inadequate and guilty, and consequently could push them to restrict food intake to try to lose more weight, thereby exacerbating their illness.
Jasmin (19) says: “I had a problem with a doctor who said, ’Well you haven’t lost any weight and you look fine‘ I felt she was quite insensitive about the situation just because I looked fine - it almost made me feel like I needed to lose weight and then go back to the doctor for her to take me seriously.”
Young people interviewed had come across deep-rooted misconceptions about eating disorders among some health services and general public, which had prevented them from seeking help and getting the treatment and support they needed. This also made it harder for them to realise/accept that they could have an eating disorder.
In particular, young men with eating disorders felt isolated and alienated because of their gender. Young men are thought to represent as much as 25% of those with eating disorders, much higher than previously acknowledged and on the increase. The young men interviewed felt that there was a lack of awareness among health professionals to accurately and readily diagnose them. Young men themselves did not know that they could have an eating disorder. They often suffered heightened experiences of isolation in a peer environment (hospital wards, clinics, peer support groups) as the sole male patient.
Craig (25) said: “When I got a little bit better my family just made the point that I looked better. They just said, ‘Oh you look healthier’ and then it’s been ignored since then. So it’s still kind of very much a taboo subject. Nobody knows how to deal with it.”
Sam Thomas, the founder and director of the UK’s only charity for eating disorders in men, Men Get Eating Disorders Too, says: “Men of all ages, backgrounds and sexualities can get affected by eating disorders, and we really need to challenge those almost secondary stereotypes. The primary one being about gender, the secondary one is that men with eating disorders are either young or gay and it’s not the case at all. Eating disorders are indiscriminate, full stop.” Sam also shares his experiences on the website.
Funded by Comic Relief, the research comprised video interviews with 39 young men and women aged 16-27 across the UK. The young people interviewed had experience of a range of different eating disorders, including anorexia nervosa, bulimia nervosa, binge eating disorder, EDNOS (eating disorder not otherwise specified), Ed-DMT1 (‘diabulimia’) and non-diagnosed disordered eating.
Ulla Räisänen, senior researcher at the University of Oxford, who was responsible for conducting the study, says: “Eating disorders are common and many go undiagnosed for a very long time. This is a real problem as the longer eating disorders are left untreated, the more serious they can become and the harder it can be to treat them. That is why it is paramount that we increase awareness of the issues and get rid of the barriers that young people face. We need to make it easy for them to speak up and get help, so that we can show young people they are not alone.”
Leanne Thorndyke, Head of Communications at eating disorders charity, Beat, says: “It’s great that Youthealthtalk.org is launching a new module on eating disorders and addressing this serious mental illness. Often sufferers feel very alone or isolated so the video clips on the website from a young person’s perspective will prove very useful to many people. We know that the sooner someone gets the help they need, the more likely they are to make a full recovery.”
The interviews on Youthealthtalk.org cover early signs and symptoms, how/where to get help, experiences of hospital treatment, thought patterns and eating disorders, impact on social life, education and family and how it feels to recover.