I stopped diabetes meds to be thin like Corries Summer – now Im visually impaired

A current storyline on Coronation Street has raised awareness of a little-known eating disorder called diabulimia.

In the ITV soap, Summer Spellman, played by Harriet Bibby, has type 1 diabetes, but has been cutting back on her insulin medication to lose weight.

As a teenager, Lynsey Choules, now 29, went through a similar experience, and it had devastating consequences for her health.

"I can't remember life without diabetes. I was diagnosed aged six. I was thirsty all the time and Mum recognised the symptoms. But it wasn't until I was 13 that I really started to struggle with it.

As a teenager, you compare yourself to others and diabetes makes you different. It's a condition that can be overwhelming – you never get a break from it. At boarding school, I didn't want to stick out, so I went into avoidance mode.

People with type 1 diabetes need insulin before every meal, as well as daily (your 'background insulin'). I started to take smaller doses until eventually I stopped taking any before food.

All I'd have was my background insulin, which I've since been told was probably just enough to keep me alive.

By 14, I realised not taking my insulin meant I lost weight, so I thought, "Well, I can't do insulin because I'll put on weight."

Coronation Street spoiler sees Summer suffer life-threatening diabetic coma in police cell

I've never had a normal relationship with food. As a child, I never liked eating in front of other people and I still don't. Diabetes takes the joy out of food because life revolves around working out what to eat to manage your blood glucose levels.

You have to take insulin before eating, and if you don't finish your food, you end up with too much insulin in your body and your blood sugar plummets – then you have to eat more to raise your blood sugar level again.

I never spoke to anyone about stopping insulin. Mum would warn me about diabetic complications if I didn't take enough, but it didn't sink in. Teachers commented on how well I handled my diabetes – I was a high achiever like Summer in Coronation Street, and I hid what was really going on.

They'd weigh me regularly at the school health centre because they were worried I was getting thinner, but no one ever made the link that I was losing weight on purpose. My BMI never caused concern for my doctor, but in old photos, my legs look like skinny chicken legs.

I didn't realise I had diabulimia.

I didn't know it was an eating disorder. And while a lot of my refusal to take my insulin was weight-related, I was also suffering from "diabetes burnout". My way of controlling my diabetes was to not bother – then I couldn't be criticised for not getting it right.

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When I was 18, I was transferred to an adult diabetes clinic, and that was horrible. I was told off for not looking after myself and treated like a naughty child – the word 'non-compliant' was said a lot, and there was no consideration for my mental health. I began avoiding clinic appointments altogether.

At university, I lived the typical student party lifestyle, still only taking the minimum level of insulin. This was when the effects seriously caught up with me. I was depressed, tired, thirsty and irritable.

Eventually, I was admitted to hospital with ketoacidosis, caused by not having enough insulin. It was one of the worst experiences of my life. I couldn't move and was drifting in and out of consciousness. I really thought I was going to die.

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Later, I developed a problem with my eyes, which was very traumatic. Things looked distorted, like looking through a goldfish bowl. I was in denial for a few weeks but eventually panicked and went to A&E.

A specialist said they needed to operate in the next two days to save my vision as I had damage to both retinas. I had three operations – the first two were under local anaesthetic, but I had a panic attack before the third one, so they gave me a general anaesthetic.

I'm now registered as visually impaired. My peripheral vision is affected and I see black marks across my central vision. But I'm very lucky to have sight in my left eye – the surgeon said it was one of the closest things she's seen to a miracle. However, I'll never be able to drive and, as a trainee accountant, I've had to have quite a few workplace adjustments put in place.

I felt so guilty and upset that I'd done this to myself, but it was a turning point. I saw another specialist who, for the first time, was very understanding. Then, a dietitian at my clinic spotted what I'd been doing, and I finally got some support.

I joined a young adults panel at Diabetes UK and it was so nice to rant together about diabetes. I realised my mental health was not okay, and that I wasn't alone. I'm now on a programme for type 1 diabetes sufferers with disordered eating. It focuses on CBT and psychological support, which has helped me deal with my emotions and reorder my thoughts about diabetes.

I feel sad when I look back because this never needed to happen. There was no conversation about mental health, it was just "make sure you do your injections four times a day". Injecting yourself is the easy part of diabetes. It's having to think about everything – and the huge number of decisions you have to make in a day – that's so difficult.

I'd be lying if I said I didn't struggle any more. I still have body image issues, but I've been working really hard on prioritising my diabetes and learning to live alongside it rather than working against it."

What is Diabulimia?

Diabulimia is an eating disorder in someone with type 1 diabetes. They reduce or stop taking their insulin to lose weight, which can have life-threatening consequences. People with diabulimia don't necessarily make themselves sick like people with bulimia – the purging is removing the insulin, rather than vomiting. Around four in 10 women and one in 10 men with type 1 diabetes reduce their insulin to lose weight.

What happens if someone with type 1 diabetes doesn't get enough insulin?

Their blood sugar levels quickly build up and they go into a hyperglycaemic state, where any calories pass straight through the body and out in their urine. This leads to dramatic weight loss. Without enough insulin, DKA (diabetic ketoacidocis) can occur. This is a life-threatening complication of type 1 diabetes where the body starts to use fat for energy and causes chemicals called ketones to be released which, when built up, cause the blood to become acidic.

'I've had some heavy storylines'

OK! exclusively spoke to Harriet Bibby who plays Summer in Coronation Street. She said:

“When Summer was diagnosed with diabetes, I shocked myself at how little I knew about it, I just didn't realise quite how intrusive it is. And when I learnt about the eating disorder that can coexist with diabetes, I realised, ‘well, of course, that would happen’.

There’s so much focus on food if you’re diabetic, as well as body image and anything else that young girls might be dealing with.

“Things can happen really fast on soaps, but there have been hints of a strange relationship with food for Summer for a while and I think that was important that it didn't all just happen at once. It's been a gradual buildup; there's the focus on food, and the people she sees on Instagram and those surrounding her – she was comparing herself to Daisy when she got a crush on Daniel – plus she puts a lot of pressure on herself to maintain being the smart friend and the smart daughter who needs to do well.

Summer is also a bit of a control freak and, when you're diagnosed with a condition like diabetes, it can appear to be quite uncontrollable. Her way of controlling it is to ignore the fact she's got it, while trying to convince everyone around her that she’s got it under control.

“I’ve had some heavy storylines; she can't really seem to catch a break. One of the most challenging things for me is that a lot of the time in the world of Corrie, the characters have antagonists and fight with each other but, for Summer, it's all internal. She starts to hate herself and it's horrible to think that there are people out there who are really struggling with this – who will look in the mirror and just not like anything they see.”

For further information and help, visit diabetes.org.uk, call 0345 123 2399 (Mon-Fri, 9am-6pm) or email [email protected]

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