It is already common knowledge that living with type 1 diabetes can be challenging and life changing but it is now understood that 1 in 3 people with type 1 diabetes develop an eating disorder.

Type 1 diabetes requires those with the condition to monitor what they eat and check-ups that involve checking their weight.

These necessities can obviously be problematic for people who are susceptible to developing an eating disorder.

When people with type 1 diabetes decide to limit or stop taking their insulin to prevent them from putting on weight, it is described as T1DE (type 1 diabetes and disordered eating). “Diabulimia” can result in fatal consequences.

28-year-old Ariella Thomason was diagnosed with diabetes at 21 years old. She battled bulimia for numerous years as a teenager. When her body reacted to the insulin she was taking to control her blood sugar, it reignited these anxieties revolving around her body image.

Ariella explained: “Most people lose an awful lot of weight and I’d lost some weight. When you’re diagnosed and you start taking insulin, your body suddenly goes, ‘oh, my God, I have food’. And it stores everything as fat and it stores water.

“I did put on a lot of weight quite quickly after diagnosis and that was something that I then struggled with on and off for years.”

She continued: “When you go through eating disorder therapy… I was taught to not fixate on food, and there I was three months later with a lifelong health condition that forces me to fixate on food, and that’s a really difficult thing to balance, I think.”

Now, Ariella has a healthier relationship with food and insulin treatment but it is suspected that others are suffering from the same issues but are going unnoticed.

The dangers of limiting or stopping insulin

The pancreas produces a hormone called insulin to help our body use glucose for energy and manage our blood sugar levels. If the pancreas stops or is unable to produce the hormone, insulin needs to be injected to prevent high blood sugar levels (hyperglycaemia).

A long period of time without insulin, and therefore high blood sugar, can cause permanent damage to the nerves in hands and feet (peripheral neuropathy), permanent damage to eyes and sight loss (diabetic retinopathy) and life-threatening conditions such as organ damage and diabetic ketoacidosis.

Hillary Nathan from the diabetes charity JDRF UK said: “The most severe form of eating disorder for people with type one is when insulin is emitted.

“That reduction or the emission of the correct levels of insulin over time can also lead to a lot of organ damage, site loss, limb loss, kidney failure. So the consequences can be both in the moment and they can be lifelong.”

Addressing the issue and finding support

To address the issue and provide support, NHS England are rolling out numerous T1DE services throughout the country which combine diabetes and mental health services.

Sarah Alicea from NHS England explained: “At the moment, there is a whole sort of spectrum of disordered eating and type one diabetes, and I don’t think we’re picking up all the different presentations that we could be.”

She added: “So I think there’s some work to be done in that area to really find out how many people actually do experience this and how we can best support them.”

There is currently a parliamentary inquiry underway to assess the scale of type 1 diabetes and eating disorders and improve our understanding of the link between them.

The inquiry could help set a national consensus on the support and treatment available to those affected, like Ariella.

Umairah Malik, from Beat, an eating disorder charity, said: “For people with type 1 diabetes there can be an increased risk.

“That can be for the need to frequently monitor weight and glucose levels, needing to read food labels carefully, things like the focus on food and weight and intake during medical appointments. All of which leads to an increased focus on those things – your body, your food, your weight.

“Alongside that, things like the negative stigma and the misconceptions people have around diabetes can contribute to why someone might develop T1DE.”

According to Umairah, the key to helping people recover is understanding that anyone can be affected by eating disorders and that they all deserve sufficient support.

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