Exploring the experiences of a patient with Type 1 diabetes and diabulimia: a narrative analysis

Problem

‘Diabulimia’ is a term referring to an eating disorder in which a person with Type 1 diabetes (T1D) restricts their insulin in order to lose weight. Consequences of diabulimia include blindness, limb loss, heart disease and kidney failure due to prolonged high blood sugar levels. It can even be fatal, with a significantly greater risk of mortality in patients with T1D and diabulimia compared to those with T1D alone. The prevalence of diabulimia is high and increasing, with research showing that it affects up to 60% of people with T1D. Despite becoming well-documented in the media, it is not currently recognised as a formal medical diagnosis; therefore, many healthcare professionals lack awareness and understanding of this condition. Current research about diabulimia predominantly focuses on defining diabulimia, its complications and possible treatment methods. However, there is little research focusing on patient experience of living with the condition. Therefore, this study aims to explore a patient’s first-hand experience of diabulimia through analysis of an online narrative.

Approach

An online search of first-person patient narratives authored by people with T1D and diabulimia was conducted. From 100 search results, 16 narratives were identified, and one was selected in order to analyse it in sufficient depth. Subsequently, a narrative analysis was carried out on the selected journal article.

Findings

The challenges of living with diabulimia were identified, including its harmful impact on not just the patient’s physical health, but also their mental health. Physical effects included complications related to dangerously high blood sugar levels, and effects on mental health were severe enough to prompt suicidal thoughts. Additionally, the lack of awareness of clinicians towards this condition could contribute to the perpetuation of the patient’s diabulimia, causing harm to the patient. This lack of awareness manifested itself in a number of ways: failure to recognise the onset and symptoms of diabulimia in patients, use of stigmatising language, and a lack of sensitivity when discussing topics such as weight in patients at risk of developing or with diabulimia.

Consequences

Online patient narratives are a useful source of qualitative data that can provide deeper insight into patient experience. Results of this narrative analysis, although not generalisable, may highlight implications for practice. Primary care providers have a key role to play in the prevention and recognition of diabulimia in their patients. Therefore, appropriate awareness and knowledge of this condition is necessary. The lack of awareness of clinicians and its negative impact on patients with diabulimia appeared to be a prevalent theme across the other narratives identified. Thus, further research in this area is warranted. Findings from this study may encourage systemic change in areas such as formal recognition, screening, awareness and use of non-stigmatising language by general practitioners.