Eating disorders and obesity when you have type 1 diabetes

TRIGGER WARNING: This section talks about eating disorders, clinical obesity, negative body image and suicidal thoughts, which may be upsetting to some people.

When young people were first diagnosed with type 1 diabetes, some were told they had to accept that they were no longer free to eat exactly when and what they fancied. Some may have been so young that they could accept having all decisions about food and eating made for them. For teenage diabetics the relationship to food can often be more difficult. Teenagers on fixed-dose regimes talked about how they minded having to take snacks between meals to fit in with their insulin routine and were sometimes self-conscious about their enforced healthy diet, which tended to exclude them from the freedom their friends seem to have over what they eat.

“When you are diabetic everything revolves around food” – Interview 29

For the most part young diabetics learn to deal with these difficulties and food does not take centre stage in their lives. But in a few cases young people find that their relationship with food dominates their lives and may develop into medical conditions such as clinical obesity and eating disorders such as bulimia and anorexia. On this page, young people talk about their experiences of how their diabetes has been tied up with their eating problems.

The beginning of eating problems

The young people we talked to said that in childhood they had ‘well-controlled’ diabetes, but now, looking back, they realise the ways in which they felt different from their peers. They were on fixed dose regimes which meant they had to eat snacks at times when no one else did, particularly before PE; they found themselves unable to eat what other children ate at birthday parties, or they felt really upset when an insensitive teacher sent them to the toilet to do their insulin injections.

Young women indicated that their eating problems began gradually in their late teenage years but 2 of them knew that they had issues about eating by the time they were 12 years old. Young women described becoming very self-conscious about their bodies and their weight and said that that was the onset of their eating disorders. They began to focus on losing weight and being thin. Above all they all felt the need to fit in with their peer group.

One young woman said that ironically one main factor that contributed to her developing an eating disorder was her newly-found sense of freedom when she changed her insulin regimen and started taking fast-acting insulin that she could inject according to how much she ate. In hindsight she thinks that she would have benefited from more direct medical supervision at that time but there was very little available (see also ‘What makes a good consultation with the care team’).

Describes how restrictive her insulin routine was and how it became a problem when she reached…

Age at interview 27

Gender Female

Age at diagnosis 7

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One clinically obese young man blames his changing eating habits as he began to eat the wrong type of food and not doing any exercise. He said that he has never stopped taking his insulin but added that when he was clinically obese he was taking additional insulin to cope with his eating extra food. (See more experiences of being overweight or obese.)

Two years ago he was eighteen stone and said he got to it through eating too much of the wrong…

Age at interview 23

Gender Male

Age at diagnosis 7

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Running high blood sugars to lose weight and how it affects you

Initially some young women started to adjust their insulin dosage to what they were eating and started on a diet to lose weight. They then began binge-eating and purposefully vomiting and experiencing fluctuations in their blood glucose levels. Several of the young women we talked to said that it did not take them long to figure out that they would lose weight if they started to miss some of their insulin injections, but the weight-loss was mostly water loss initially. All these teenagers were aware of the damage they were inflicting on themselves but initially thought that it was something they could control: ‘I will do it until I reach the weight I want’. But in reality the thoughts that come with an eating disorder are so overpowering – wanting to be thin; ‘insulin will make me fat’ – that their behaviours were ruled by these thoughts and not by common sense. They remember lying and becoming deceitful in order to hide their eating disorder from parents and medical team.

Talks about why she stopped taking her insulin regularly, how she felt as a result of it and the…

Age at interview 19

Gender Female

Age at diagnosis 14

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She started food binging and missing insulin injections. Thought she could misuse insulin till…

Age at interview 20

Gender Female

Age at diagnosis 2

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When people began to skip injections as a regular practice they found that their blood glucose levels went high and as a result they felt ill, unable to concentrate and even in constant pain. In short they were living with the symptoms of undiagnosed diabetes. The pain that these young women experienced was not just physical but also emotional; they were depressed, they had low self-esteem and one even felt suicidal. But depression and thoughts of suicide are not unique to those skipping insulin. The young man who was clinically obese but didn’t skip insulin also had these kind of thoughts.

Describes how her binge-starve and not doing insulin injections started and how she felt…

Age at interview 27

Gender Female

Age at diagnosis 7

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Says that such things as being overweight, breaking up with his girlfriend and having low self…

Age at interview 23

Gender Male

Age at diagnosis 7

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The experience of an eating disorder did not just affect the individual, it also affected their parents and the relationships young people had with them. The young people we talked to said that it was very hard to see their parents suffer and they felt immensely guilty to be putting them through all that. Most of the young people said that their parents have been their main source of support, their ‘rock’.

Every time her HbA1C test result was high her parents knew she was misleading them & not doing…

Age at interview 19

Gender Female

Age at diagnosis 14

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Seeking help for eating problems

“You reach a point in which you understand that if you do not seek help you will die”–Interview 32

A few of the young women we talked to experienced what they called a ‘wakeup call’. They basically reached a point where they realised that they needed help or they would eventually die as a result of what they were doing. They said that ‘no one will be able to help you unless you accept you have a serious problem that needs solving’. For them this was their turning point. The young people we talked wanted to emphasise that you are not alone and that there are people that will help you. As advice to others the young people also said that you may have to look around to get the help that is right for you, and that this is very important.

One young woman found her diabetes care team to be unhelpful but she had the support she needed from her GP. In another case a girl was glad that her consultant was ‘quite direct’ and made her understand the risks she was taking as well as requesting psychological help for her in the city where she was studying. The young man affected by clinical obesity sought the advice of a private consultant and attended counselling sessions.

Her consultant made her realise that if she continued ‘misusing insulin she would be dead within a year.

Age at interview 20

Gender Female

Age at diagnosis 2

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Explains about the diet that has helped him to lose weight and the benefits of seeing a counsellor.

Age at interview 23

Gender Male

Age at diagnosis 7

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Recovering from an eating disorder

One thing that young people emphasised was that recovery from an eating disorder and not taking insulin is a very, very slow process and that there are going to be times in which they felt frustrated and miserable. Also they might feel physically ill and ‘terrified’ to start taking insulin again. The young women we talked to spoke of taking small steps at a time; they said that the psychologist or psychiatrist will help you to deal with those negative thoughts that you have about your body and that you will develop coping mechanisms to help you deal with stressful life situations. Recovering, as one of the young women put it, is ‘one step forward and one step back’ because there almost sure to be relapses. But at the same time the better they began to feel physically and emotionally the more determine they are/were to continue with their treatment.

She emphasises that overcoming an eating disorder is a very long & difficult process, that there…

Age at interview 19

Gender Female

Age at diagnosis 14

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She explains that her therapy consisted of taking small steps at a time. Says that when she lost…

Age at interview 27

Gender Female

Age at diagnosis 7

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She is taking her insulin more regularly again. Having treatment for her eating disorder and…

Age at interview 20

Gender Female

Age at diagnosis 2

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Here you can find out more about young people’s experiences of eating disorders.

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