Eating disorders

Getting the diagnosis

Eating disorders are usually diagnosed by a specialist in mental health - such as a psychiatrist -but also by a GP. The diagnosis is made following a full assessment of psychological and physical wellbeing, as well as specific eating disorder symptoms. The criteria for making a diagnosis cover physical health, attitudes to weight, body shape and eating, and behaviour. Sometimes an assessment can involve medical tests to look at physical health and rule out other causes of the symptoms. Tests include blood tests to check fluid and nutritional levels, an ECG (Electrocardiograph) to examine heart function and bone densitometry to assess bone density. The main eating disorders such as anorexia nervosa, bulimia nervosa or EDNOS (Eating Disorder Not Otherwise Specified) have different symptoms and diagnostic criteria. Sometimes the diagnosis can change over time from one eating disorder to another for example from anorexia nervosa to bulimia nervosa. 

Being given a diagnosis
Looking back, people we spoke with didn’t remember well the process of being diagnosed. This could be because they were not clearly told about the diagnosis or the diagnosis was discussed with their parents, rather than with them directly. Reaching a diagnosis wasn’t always a clear and straightforward process. Often the doctor had taken their medical history, talked to the young person or their family or given them questionnaires to fill in. These questionnaires typically included questions about food and eating habits, relationship to food and behavioural patterns associated with eating disorders. People often remembered being weighed which could cause considerable distress. Many services understand this and discuss this with the patient and help them make a choice about how they wish to be weighed (e.g. backwards so they don’t see the weight) and allow them to decide if they want to know the weight or not.

Some people refused to be weighed or tried to produce a false weight.

Although many people spoke about having had a diagnosis, others didn’t have one or weren’t even sure if they had been diagnosed. Often the diagnosis had been made by their GP or a psychiatrist at CAMHS (Child and Adolescent Mental Health Service). Sometimes the doctor had suggested a diagnosis on the first consultation but others talked about the process taking months, or even years, before they were officially given an eating disorder diagnosis.
 
People found out about their diagnosis in a number of ways. Some people had the diagnosis explained to them by a doctor but others only found out through reading their medical notes. Maria thought the professionals avoided mentioning the diagnosis in order to “pacify” her. Some said they guessed they must have been diagnosed because they were referred to specialist eating disorder services.
 
Reactions to diagnosis
People’s views about the importance of diagnosis and its impact on their lives varied. Getting a diagnosis could be a very emotional experience. Being diagnosed could have practical benefits or affect  how people viewed themselves.

Some of those we interviewed felt that being given an official diagnosis supported their experiences. Being diagnosed proved to them – and others – that “something was wrong”, “there was a name for it”, “I wasn’t crazy”. Katherine had felt labelled as “as an inconvenient person” when her behaviour was in fact caused by having anorexia nervosa. It was a relief to realise that a habit people had struggled to understand or had kept a secret was actually “a real thing” and there were other people experiencing the same. Having a diagnosis could also take away some of the guilt people felt over upsetting others as they realised it wasn’t their fault and that they were ill.
Other people, at first, described feeling shock, upset and fear. For some, the diagnosis was completely unexpected and they were unprepared that they had “something so serious”. Steph was scared that she would “lose the eating disorder”. Feelings of sadness and upset could be worse if people felt they weren’t given enough or the right information about the diagnosis and the steps that could follow. They often only had unhelpful ideas about what an eating disorder meant.

Many said that they didn't beleive the diagnosis and rejected it, in some cases for years. They said that they never thought they could have an eating disorder; it was something that other people had. They felt their behaviour wasn’t that bad and some who were diagnosed with anorexia nervosa thought that if they ate something (however little) they couldn’t have it. People described thinking a diagnosis was just “ridiculous”, “a complete overreaction” or others “making a big deal”. Laura said she preferred to think of having “eating problems” rather than a diagnosed illness and Nico, who had never been diagnosed, said he identified more with having “eating problems”.
Some people were worried about being “labelled” with a mental health problem and that it would define them as a person, especially in other people’s eyes. Diagnosis could also cause embarrassment. Elena felt embarrassed that she was “stupid” about food and felt she ought to be able to just be normal and Andrew said anorexia nervosa diagnosis made him feel like “a weakling”. In such cases, the diagnosis could initially increase feelings of low self-esteem and incidents of self-punishing behaviours.
Being diagnosed with an eating disorder could have practical benefits and some people emphasised that for them it was simply a way to access the help they wanted. Sara described the diagnosis as “a ticky box to access help”. Before Francesca started university, she contacted the university’s disability office to get support with housing and studies:
 
“The most important bit and to be recognised is that [an eating disorder] is an illness with as much right as anything else.” Francesca
 
Sometimes the diagnosis came as a no surprise; people had expected it. They, or sometimes their parents, had figured it out through doing research online. People also described feeling indifferent about the diagnosis or that they were too ill or “numb” to take anything in.
Multiple diagnoses
The exact diagnosis could change over time, from one eating disorder to another, or from one subtype to another. Sometimes an initial suspicion was clinically confirmed much later on.
People we spoke with sometimes had other mental health problems in addition to an eating disorder; for example clinical depression or bi-polar disorder, OCD (obsessive compulsive disorder) and borderline personality disorder. Charlotte was diagnosed with ME (chronic fatigue syndrome) which complicated the anorexia nervosa diagnosis. Andrew didn’t have a clear-cut diagnosis:
Some had not been diagnosed, or at least weren’t aware of having a diagnosis. Others were waiting to access further specialist services. A few people hadn’t been in contact with services to an extent that they would have received a diagnosis.

Last reviewed July 2015.
Last updated July 2015.

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