The beginning of an eating disorder
People described how their problems often developed gradually over a few years. Sometimes the development was slow with 'on/off' periods and then something would trigger...
It is common for people to think of eating disorders as being about weight, or wanting to be ‘thin’. This is incorrect. Eating disorders are more complex and involve relationships between emotions, coping, eating, control and obsessions. This lack of understanding could make it harder for people, or those around them, to realise early they were developing an eating disorder (see ‘Myths about eating disorders‘).
Young people we spoke with said that it often took them a long time to realise that something was wrong. They didn’t necessarily think that the changes in their eating and behaviour could mean that they may be developing an eating disorder. People often thought that they were just eating more healthily or dieting “like everyone else’, or that restricting (limiting the food they ate) or bingeing (eating excessively) and purging (ridding themselves of food they had eaten) was ‘normal’ and ‘just something I did to cope’. Some people thought that having an eating disorder meant being severely underweight and didn’t think that they were ‘thin enough’ to have an eating disorder. Sometimes, the first thing that people noticed were the changes in their mood. They thought they could be experiencing depression but didn’t connect it with an eating disorder. In particular, men said that they’d never realised that men could have eating disorders. Overall people had very little previous knowledge about eating disorders, especially of the wide range of different types and levels of intensity
People with anorexia nervosa we spoke with often described thinking that they couldn’t possibly have anorexia as it was something that was ‘severe’ and ‘rare’. They associated anorexia nervosa purely with extremely low weight. They never felt ill, or thin enough, to believe they had a real problem.
People’s ideas of a healthy diet or how much weight they had lost could be very different to those of other people around them. Katherine said she knew her behaviour was ‘irrational’ but she thought she couldn’t be ill with anorexia nervosa as long as she was at least eating something, particularly what she thought were healthy foods.,
Some people said they knew all along their behaviour was ‘abnormal’ but didn’t have a name for it. Sam knew his behaviour was a problem but he didn’t want to let go of it:
‘There was definitely clearly a problem because it created a significant barrier for me for everything that I wanted to do or wanted to achieve. Absolutely I knew that it was creating problems at the time. It was just very difficult because you know at the same time, you know I can’t live without it ‘cos I wouldn’t be able to cope, so that it was very much a conflict.’ Sam
It was often other people, like friends, family or a teacher, who first noticed something was going wrong and tried to encourage young people to get help. Some said that their friends were so concerned about their weight loss they threatened to ‘force feed’ them. Francesca’s friends showed her a video of a woman with anorexia nervosa urging her to realise what she was doing the same but said she was ‘totally oblivious’ to it. Rebekah’s friends kept telling her she was too thin, but she just ‘saw this fat person in the mirror’. Fiona-Grace couldn’t see her weight loss as a problem because she always felt the need to lose more:
“I just thought people were crazy. I actually thought they were crazy and I told them that and I said that saying to me that I have an eating disorder is like saying that the grass is pink.’ Fiona-Grace
When confronted by a parent or a friend about their eating, people could become very emotional and deny everything.
Alongside changing moods and patterns of eating, people often felt a strong need to hide their behaviours from others. If people felt forced to open up, it could sometimes lead them to become more secretive about their eating disorder. Sometimes people felt that everyone around them knew there was a problem but nobody said anything; ‘it wasn’t discussed’.
(For more see ‘Parents & Family‘).
Talking to someone else about the possibility that something might be wrong could be very difficult. Often people didn’t try to get help for a long time – this could be several months or even years after developing an eating disorder. They said they didn’t want to be ‘a burden’ or ‘waste’ a GP’s time. They described not wanting to bring attention to themselves, feeling that they weren’t ‘thin’ enough to have a problem or not feeling like they deserved medical attention or treatment. Some simply didn’t know who to talk to. People had concerns about confidentiality; if they had kept their eating disorder behaviours a secret from everyone, they worried whether they could talk to a teacher or doctor without their parents finding out. Bad experiences in the past, such as not being able to trust a doctor, could put them off too.
Often people had mixed thoughts about seeking help; while they wanted the help, they were so deeply involved with the eating disorder that they were, in fact, scared to let go of it. Some people said they didn’t want to admit being ill or that they didn’t actually want to get better.
It is important to remember that despite how hard it was to accept that help was needed and decide to get help, all of the people we spoke to were glad that they did receive help. It was often a positive turning point.
People decided to see a professional for a number of reasons: they had become concerned about physical symptoms (such as weight loss, problems with circulation, pains, loss of sensation, insomnia or loss of periods), or because they were increasingly low and depressed. Some said they had simply had enough of the eating disorder taking over their lives and wanted help. Eva describes herself after she ‘went over the line’:
‘I wasn’t myself anymore, I wasn’t comfortable in social situations. I was really quiet and withdrawn. I didn’t like being around people anymore and I felt like crying all the time.’ -Eva
People also said they wanted to seek help for the sake of loved ones because they knew their parents or friends were upset and felt guilty about it. Felicity said she wasn’t concerned about what she was doing to herself but more about its impact on people around her. Katie remembered being on holiday when she saw her dad crying and how it made her feel:
‘There were times on that holiday when my dad had been crying and stuff and my dad never cries. Crying because they were worried about me and so that was hard and made me feel guilty.’ Katie
People also just wanted some reassurance or went along to please their parents.
The first time people chose to talk to someone other than their friends or family they went to see their family doctor, or another GP, a school nurse/counsellor, a private counsellor, a psychologist or a teacher. Often it was a worried parent who made the appointment and some people said they felt ‘forced’ to go along. While some preferred to go alone to the appointment, others preferred to bring someone with them for support, often a friend.
People’s experiences of their first contact with a professional were extremely varied. They described positive outcomes with professionals who took them seriously and were experienced in dealing with the complexity of eating disorders without the sole focus being on their weight. They were given good and detailed information about eating disorders support and referred to other services. Just talking to a professional could be a big relief. Emily felt excited after she first saw a GP and thought it was ’empowering’. Charlotte said talking to a GP “lifted a weight off her shoulders”.
Some people felt there was lack of understanding and knowledge of eating disorders among the professionals. They felt there was too much focus on the way they looked, for example their weight or BMI (Body Mass Index), and not enough on their mental wellbeing. Some young women said they were told that they were just naturally ‘skinny’ or it was ‘a teenage phase’ or that ‘all girls diet’. Some left the appointment with no other advice or action plan than to just start eating more. Elizabeth remembers the hospital telling her parents just ‘to go home and put some dinner on the table’.
Some people felt that they weren’t taken seriously because they didn’t fit what people expected to see in someone with anorexia. These included men, people who were overweight or those who were both bingeing and purging. Some said being ‘brushed off’ was a relief at the time because they felt it proved that they weren’t actually ill but many others described feeling upset, angry, humiliated and patronised. Those who were reluctant to go to their doctor in the first place said they’d ‘fobbed off’ the doctor because they didn’t want ‘to be found out’. However others were shocked or surprised to be told they might have an eating disorder as they didn’t feel that they were ‘the type’ to have them.
Sometimes finding a good doctor took time and determination. Those who had a more negative first experience went back to see the GP again a few times, or made an appointment with another GP.
Read more about the next steps and treatment options in ‘Staying in hospital‘, ‘Talking therapies‘ and ‘Coping with an eating disorder and self-help‘.
People described how their problems often developed gradually over a few years. Sometimes the development was slow with 'on/off' periods and then something would trigger...
Eating disorders are usually diagnosed by a specialist in mental health - such as a psychiatrist -but also by a GP. The diagnosis is made...