Claire's Story part 2 - T1DE: Still drifting, but treading water

‘I felt like there was nowhere to go that could treat me…

‘It took me about five years to get my eating disorder consultant into the same room as my diabetic nurse. Five years for anyone to grasp the fact that these two problems were so interlinked for me and that one could not be tackled without the other.’

The words above are taken from a Beat blog I wrote back in 2018. I look back now through a blur, a thick fog. I fail to recall specific dates or the order of crucial moments that made up the trajectory of my life. Some of it feels like a dream, but more so, my brain was numb and dumbed down. What I do know is that I am still here surviving, and that is something. So I am told anyway, by those people who have stuck by and supported me through thick and thin, friends that I treasure dearly.

I wish I could tell you I had overcome my eating disorder, defied the odds despite those treatment barriers. However, the truth is, I still struggle just as much at present. 25 years later, and now classed as ‘chronic’ or a SEED (Severe and Enduring Eating disorder) patient. It’s difficult not to feel like a disappointment and a let down, because I’ve tried, god knows I have tried to get out, but I just haven’t been able to make it there.

‘Drifting Between Services’ only skimmed the surface of what T1DE is and why it is so important to be aware of. I was the first person to have a blog about T1DE at Beat, and despite its commonality, type 1 diabetes with an eating disorder was barely heard of, let alone reported on. If mentioned, it was referred to as ‘Diabulimia’, a gimmicky and misleading label coined by the media and most commonly used to describe the practice of insulin omission for weight-loss purposes.

T1DE instead encompasses type 1 diabetes and any disordered eating, whether this may include insulin-omitting behaviours, as well as anorexia or bulimia nervosa. T1DE-trained clinicians are becoming more common, many of whom practice in specialist hospital units. The first of these in the UK was King's College Hospital in London, where I have been a patient.

A debate held in 2022 in the House of Commons, led by Theresa May and George Howarth on failings in T1DE treatment, has also led to great progress and has thus far been the most ground-breaking parliamentary enquiry to date. A comprehensive report was produced as a result, outlining crucial changes that needed to improve T1DE care. As someone with lived experience, I spoke during the debate on my personal struggles with T1DE. I was also asked to take part due to my role as blogger, content writer and social media manager for the charity DWED (Diabetics With Eating Disorders).

However, change has taken an extremely long and frustrating time, and is ultimately far from where it needs to be. T1DE patients are still having to put up with shoddy healthcare that can often make them even more unwell. There is a devastatingly vast number of preventable, unnecessary and unfair deaths from T1DE happening far too frequently, with insufficient research or statistical data to prove as such.

DWED was founded in 2009, and we did our damn hardest to spread the word of T1DE as far as we could, right up until we officially closed in 2019. This means new content is no longer being produced. However, our website still features all of our past resources, with all members-only materials and healthcare professional member materials also publicly accessible. Please read the following closing statement written by DWED’s founder and director Dr. Jacquelline Alan. Jacq is now working directly with T1DE patients as a Clinical Academic Psychologist. I must say this woman is amazing, and I am so proud of her and all she has achieved.

Despite all the blood, sweat and tears we put in for a decade, T1DE is yet to be recognised in either the International Classification of Diseases (ICD) or the Diagnostic and Statistical Manual of Mental Disorders (DSM). Instead, if is merely added in under the criteria for bulimia nervosa as a means of purging. This Is wholly absurd and unacceptable. I reiterate this is yet another thing that is COSTING LIVES. I have been to too many funerals.

World Diabetes Day is all about diminishing stigma and about being real. I am afraid that my story has no neat ending. I now struggle with many medical complications as a result of my eating disorder after prolonged uncontrolled and usually high blood sugar readings, as well as wild swings from hyper to hypoglycaemic levels. Many of these are common in individuals who have long-term type 1 diabetes with T1DE often causing them earlier in life.

These conditions include liver and kidney (nephropathy), as well as gastroparesis, neuropathy and most significantly, proliferative retinopathy, which means I am registered as partially sighted. My favourite hobbies and distractions have always been reading and writing. However, I have not been able to finish a book for years and writing this article is very much a challenge as I strain to see the screen and correct errors; I have undoubtedly missed a few. I desperately long to reverse time and somehow stop myself from ending up at this point.

While it is great to see T1DE highlighted elsewhere by other charities, including Diabetes UK, DWED volunteers spent so long screaming into an echo chamber and not being heard. Some of us made it to freedom or some degree of such, while some of us fell by the wayside; those casualties that we remember and continue to fight for, as well as fighting ourselves to keep putting one foot in front of the other for every second of each day.

This blog is in memory of the ones we have lost. The ones we shouldn’t have lost.

To read part one of Claire's blog, head here: Claire's blog: T1DE - Drifting Between Services.

If you need support for T1DE, contact our Helpline and head to our T1DE webpage to find out more, and help available to you. Remember, you are not alone.