Getting an eating dirsorder 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 OSFED – Other Specified Feeding and Eating Disorders (previously know as 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.

Sara describes going for the assessment with the psychiatrist. She felt nervous but she knew she…

Age at interview 20

Gender Female

Age at diagnosis 16

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There was a long referral time to see a psychiatrist to get a referral so basically, it was just going to psychiatrist to get an assessment. And at that point I, I went with my Mum, no I didn’t, I went with my CPN. Just on my own because it was probably for the best that she wasn’t in the room at the same time and it was, it was with my CPN so when, when I was still at home and before I was hospitalised. And it went into normal assessment things and it was quite daunting but I already kind of knew what was going on. I’d accepted the fact that this is my, [laughs] my line in life which is kind of how, how I saw it, so I just went in there to answer the questions and to get a ticky box just so that I could get the help that I needed really because there was such a long waiting list for inpatient and inpatient was what I needed. I needed to be taken out of my home environment to really reflect on things and to actually get better because, as much as my family helped, they can kind of hinder at the same time because they are so emotionally involved so it, it, it didn’t really bother me at all.

I really didn’t feel anything towards it although on the morning before I went, I ate two bowls of cereal. That might not be a big thing but I ate one bowl of cereal a day and I ate two before I went to this appointment which was like at 9 o’clock in the morning and I got told off at something silly by my CPN because my Mum [laughs], she just said, You can’t let her eat two bowls of cereal before this because I was under the impression that I was gonna be weighed at this meeting [laughs] so obviously I was like, just make it look good.

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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.

Rob described the mixed emotions about diagnosis. It proved that he wasn’t intrinsically broken…

Age at interview 17

Gender Male

Age at diagnosis 14

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I think also my dad did know he had had identified, although I didn’t know this at the time, that I had anorexia by, he went on the Beat website and there was a list of signs and symptoms most of which I was feeling at that point I think.

So I think that it was definitely a kind of mixed emotions really in that in that sense because it was it was actually positive for me to have something to be able to give a name because it was something that it meant that I wasn’t like intrinsically broken, you know, I wasn’t kind of wrong as a person. There were other people had been through similar experiences and that by extension there was something that somebody could do to help the situation. You know, I could work at it but at, you know, on the other hand, there was this this kind of illness that I didn’t know very much about and it’s very kind of was very serious diagnosis. But obviously, I knew that I had had a very difficult relationship with food at that point, and not just food but everything else by extension in in my life. So I knew that there was something although I wouldn’t have previously identified it as anorexia.

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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.

Jamie broke down when he was told he had anorexia nervosa.

Age at interview 19

Gender Male

Age at diagnosis 14

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I didn’t really understand what was really going on. But like I started, when they sort of explained to me I just started crying because I just, I just didn’t realise what I was doing to myself. And to that it makes you realise, I was like, What? I’m doing that I just didn’t, it was just like the realisation of what I was actually doing cos to me it didn’t seem like anything. Oh I’m just selling my lunch. didn’t really seem like much. But to be put like in the context they put it, I was like, Oh Cos I just didn’t, cos I was only like 14.

And to find something like that is just like a shock. I was like, okay; I just didn’t really understand what was going on. And it’s like sort of a bit of a weird feeling to, thing to understand. It was just like What I was just like, Uh A realisation was just like you just didn’t, I didn’t quite know what to think.

And did they mention eating disorders do you remember, or did they actually give you a diagnosis at that point?

They said there was like, mentioned there was like something wrong like I was having trouble eating and they referred me to, like, not a, sort of like a clinic but not like an in-patient clinic to get like counselling and that, but they didn’t say, they didn’t like say, Oh yeah, Anorexic Or something like that. It waited, I got in the car with my Mum and I turned around and said, Does that mean I’m anorexic And she said, Yeah And I just went and I just lost, I completely broke down cos I just didn’t, putting that name to it sort of like shocked that, and I was like, I just didn’t, that’s just not what I thought I was doing. I just did not put that to what I was doing.

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Sara wished she had been given more information about the diagnosis and treatment.

Age at interview 20

Gender Female

Age at diagnosis 16

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Were you given then, with the diagnosis, information or were you given information at a later stage at any point?

No, I, my CPN was really good, she explained every single step of the way but the psychiatrist wasn’t and anybody above that really just kind of made their decision and didn’t really offer much information on, on what my condition could involve because, it did, it did evolve into borderline OCD and depression. I understood the depression and how that worked but to kind of struggle with an OCD as well and to kind of see how they are all interlinked, it’s only now that because I’ve got so much more knowledge of, of, of mental health issues just in general, that you kind of do learn to understand, kind of understand.

It would have been nice to, not a leaflet, but just to be sat down and kind of explained what’s going on and how we normally deal with this, just to make sure that you get better. Like just to kind of, not an example, but this is our plans because I really did feel like, I’m here now but where am I going and what does this mean for me now that I have this diagnosis? It, it was kind of explained in the sense of now we’re going to try and get you into hospital but not explained in the sense that I didn’t know I was gonna have to have a nasal-gastric tube put down. I didn’t know that there was the possibility of a section and I didn’t really understand why I couldn’t control how much I was eating. So I mean it would be really, it would have been really nice to get some more information on that in a more verbal sense rather than a leaflet kind of sense just to kind of get a grip on the situation that I was in because it’s really hard to kind of centre yourself when you’re in that situation.

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Many said that they didn’t believe 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’.

Annabelle thought it was laughable she could have anorexia and even her GP told her she was just…

Age at interview 22

Gender Female

Age at diagnosis 14

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And the GP asked me these questions and I said, No, no, no I haven’t got anything wrong with my eating. I’m fine, like Don’t be ridiculous. So he said, No she’s fine, she’s just, just a petite girl. There’s a difference between having an eating disorder and being petite, and naturally slim. So I sort of went away, and would be like, Told you so. And this happened a couple more times, and my Mum just got so fed up because she could see clearly that something was wrong. So she took me to, she took me to a different GP and the GP immediately said, I can’t believe she hasn’t been diagnosed before. Like definitely without a doubt you know your daughter is anorexic. And I, at the time, just thought it was laughable. I thought that you know, I’ve read about anorexic people in magazines and like, I’m not one of those. I’m not; it’s not that extreme you know. It’s not like I ate nothing, I eat something and you know I, I just, I didn’t, I didn’t think it could happen to me.

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Elene felt like a phoney when she was diagnosed with bulimia nervosa. She felt guilty for her…

Age at interview 20

Gender Female

Age at diagnosis 15

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I felt kind of like a phoney that I was faking it or something and that like I felt like yeah, I felt like really guilty that like my parents were like having to, you know, like take time off work to like take me to these appointments when I was like actually, just faking it and nothing was wrong with me. Which is ridiculous but I did really feel like that. And I was also really embarrassed like just because it seems such a stupid thing. Like I can remember like having, you know, like having to sit there and plan out a meal, like a day’s meals like it just seemed so stupid and embarrassing like. So I can remember feeling really embarrassed about it and but embarrassing that it was unnecessary even though like I was, obviously, like unable to like continue as I was.

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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.

Suzanne said that getting a firm diagnosis of EDNOS was a relief as she had strongly suspected it…

Age at interview 16

Gender Female

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I went there [GP’s] and we chatted and she asked me all these questions about how I feel about my body, and this stuff, and I could have lied and said, Yeah I feel great But there was little point so I answered her as truthfully as I could. And that’s when she said there was a high probability that I had an eating disorder. And I asked her, High Probability or do I actually have an eating disorder So she got out the list of questions, I answered yes to all of them, and she said, Yeah you have an eating disorder

And I was thinking to myself, Well I knew that because I’d taken all the online tests out of curiosity. I accidentally stumbled across one on the website that I’m a member of. And I’d taken quite a few different ones, cos I got bored and I felt like doing it and I always scored at a very high risk of an eating disorder, or high risk. So it was kind of obvious but it was just nice to have the GP and a professional tell me, so it wasn’t in my imagination.

Yeah because you said it was a relief?

Yeah. it’s because there was always that chance, even though I scored high on all these tests, there was still that chance, no matter how tiny, that it’s my imagination, I’m just being silly, you know, what’s the test to prove it, I should get diagnosed by a professional. And it was such a relief and also I felt a tiny bit smug knowing that I’d managed to diagnose myself. I was like Yeah, I knew it I knew it, I just felt smug knowing that I was right and that I wasn’t crazy.

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Hannah Z felt upset when her GP diagnosed her although she says deep down she always knew there…

Age at interview 18

Gender Female

Age at diagnosis 14

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I was really scared, like I didn’t want to get on the scales. I didn’t want to do anything like that. When he referred me I was sort of like, Oh my gosh like, it’s now all gonna stop And I kind of thought, like I kind of thought, part of my mind was, I kind of want this help’ and the other half was just like, No you have to kind of carry on, you can’t let them get involved in stuff like that. Yeah.

So at some level, you were aware of that?

Yeah

I think I always was like deep down, like it’s kind of strange because sometimes it was like half my mind that was, didn’t want help and then sometimes it was a quarter of my mind that didn’t want help, it was just a really, like, it changed all the time.

Was there anywhere at that point that you did go for help or, you know, any sort of, I don’t know, peer support or anything like, was there anywhere at that point that you kind of found any?

No [laugh].

So it was just on your own?

Yeah

Mm, like you said you wanted it to be your own thing?

Yeah

So did this doctor then, this GP, did he diagnose you already or was it just after the referral?

It was before the referral, he’d been
So it was him?

Yeah, he diagnosed me. But I think he kind of diagnosed me on the basis of my weight instead of like my mindset, kind of thing. So yeah and, so then he referred me on the basis of that and then it was an eating disorder obviously but yeah.

And how did you feel about the diagnosis when you heard it at first from him?

Well, he gave me all them leaflets and he was like just, he was kind of like, take it all in and everything and I was just like, No I’m not gonna take it all in like you’re diagnosing me with like something so serious and I just thought, nah, it’s not, it’s not true at all. And like, I wanted, I kept on saying that and deep down I obviously knew that it probably was that but I just wanted to put up this kind of wall and just say no, it wasn’t that.

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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.

Jasmin’s diagnosis changed from bulimia nervosa to a purging type of anorexia nervosa.

Age at interview 19

Gender Female

Age at diagnosis 17

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At the time I thought I had Bulimia and I think that’s what the doctor, I’m sure mentioned, might have mentioned that but it was, and to be honest I never really got told what I was diagnosed with until about a year later. Because on my forms they put Bulimia, I think that’s cos when I went, from the time to, from my assessment because it was then Christmas it was a while before I then started having treatment and in that time I gained weight so it kind of took me out of the Anorexia part so when they diagnosed me they put down Bulimia but when I, we had Family Therapy for a bit, I think my Mum and Dad asked about what I’d been diagnosed with and he said it was the purging type of Anorexia, which I hadn’t known, but so it was yeah it was the dietician that diagnosed me properly.

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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:

Andrew’s behaviour had traits of anorexia nervosa and bulimia nervosa. He was also clinically…

Age at interview 19

Gender Male

Age at diagnosis 18

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And they basically were saying well it’s all psychological, the throwing up of food, you know it’s your brain telling you to do this. I suppose I went there for a while, didn’t really seem to be helping at all. I was getting more and more down, not really putting on the weight. didn’t feel it was helping cos basically I was just getting told that it was just in my head, and you need to overcome this. it’s easy. It was easy for you to sit there and say that to me but quite a bit harder in practice.

So this time last year I pretty much to the day I was diagnosed with an eating disorder but they couldn’t set it as one, because you know I was anorexic, I was obsessed with food, not eating. I was also bulimic because I was throwing up whatever I ate. And the psychotherapist diagnosed me with clinical depression and bi-polar disorder.

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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.

Talking therapies

When people are diagnosed with an eating disorder they are often offered some type of counselling or therapy. These 'talking therapies' are offered to help people...