The Harsh Reality: The Lack of Adequate Treatment for Eating Disorders and Type 1 Diabetes

 

Living with Type 1 diabetes is a relentless challenge in itself, but when combined with an eating disorder, it becomes a harrowing battle for survival. Despite the severity of these intertwined conditions, the availability and quality of treatment remain woefully inadequate. It is a disheartening reality that many of us face—a reality where our cries for help often go unanswered.

The NHS is supposed to be our lifeline, and even though it remains underfunded and understaffed it frequently falls short in understanding and addressing the unique needs of individuals with both Type 1 diabetes and eating disorders. These conditions are not mutually exclusive; they interact in complex and dangerous ways. However, this intersection is often overlooked by medical professionals, leaving patients to navigate their treatment alone.

The stigma surrounding both conditions exacerbates the problem. Society and even healthcare providers such as GP, often reduce eating disorders to mere issues of vanity or willpower, failing to recognise them as severe mental illnesses. Similarly, the challenges of managing Type 1 diabetes are frequently underestimated. This dual ignorance results in a lack of comprehensive care that addresses both the physical and mental health aspects of struggling with these two conditions. 

One of the most glaring issues is the scarcity of specialised treatment programs that cater to those with both Type 1 diabetes and eating disorders. The few programs that do exist often only deal with a very narrow definition of Type 1 Disorder Eating (T1DE) mainly insulin omission, have geographical limitations or a limited amount of specially trained staff to provide the support that is needed. This leaves many patients without treatment options. 

For those lucky enough to access treatment, the experience is often disappointing. Standard eating disorder treatment programs are not equipped to handle the intricacies of managing diabetes, while diabetes care teams may lack the expertise to address eating disorders. This fragmented approach results in patients falling through the cracks, receiving incomplete or ineffective care.

Body Mass Index (BMI) is often used as a gatekeeper for accessing eating disorder treatment. This metric is fundamentally flawed, especially for individuals with Type 1 diabetes who may not fit the typical profile of an eating disorder patient. Many of us are denied treatment because our BMI does not fall within the arbitrary criteria, despite our severe struggles with food and insulin management. This gatekeeping ignores the reality that eating disorders can affect individuals of any size and that the need for help should be determined by the severity of the disorder, not a number on a scale.

The lack of adequate treatment takes a significant emotional toll. Living with both conditions is isolating and exhausting. The constant fear of judgment, the battle against misinformation, and the struggle to find competent care can lead to feelings of hopelessness and despair. Many of us are left feeling invisible and unheard, our pain dismissed because we do not fit the typical definitions of someone with a Eating Disorder.

It is unacceptable that in today’s world, those of us living with Type 1 diabetes and eating disorders must fight so hard to receive the care we need. We deserve better. We need healthcare providers to be educated about the intersection of these conditions and to offer integrated, compassionate care. We need more specialised treatment programs that are accessible and are not solely based on one T1DE definition. We need a system that prioritises our health and well-being over arbitrary metrics like BMI.

To those in positions of power within the NHS: listen to our voices. Understand that our needs are unique and urgent. Invest in training for staff, fund more specialised treatment programs, and remove the barriers that prevent us from accessing care. We are not asking for special treatment; we are asking for the chance to live healthy, fulfilling lives.

To my fellow warriors battling these dual conditions: you are not alone. Your struggles are valid, and your fight is seen. Continue to advocate for yourself and for others. Share your stories, raise your voice, and demand the care you deserve. Together, we can push for a future where no one has to face these challenges without the support they need.

The Invisible Struggle: Navigating Life with a Larger Body, Type 1 Diabetes, and an Eating Disorder

Trigger Warning: This post discusses eating disorders , Stigma and mental health struggles.

For many, the term "eating disorder" conjures up images of extreme thinness or an obsession with food. However, these disorders are far more complex than a simple fixation on weight or diet. Eating disorders are often misunderstood because they can manifest in individuals who don’t fit the stereotypical image of someone with an eating disorder. Society's fixation on weight can obscure the reality that these disorders are about much more than numbers on a scale. They are about control, self-worth, trauma, and emotional pain. To reduce them to mere weight issues is to overlook the profound psychological struggles that underpin them. I wanted to share my experiences of living in a larger body, managing Type 1 diabetes, and battling an eating disorder. 

I hesitated at first when thinking about writing this post because I wanted to ensure I had something meaningful to say something that could help others feel less alone, not just another story that would go unread. While thinking how i was going to write this blog i kept constantly coming back to the same question over and over again Who decided that people in larger bodies could not have an eating disorders? Weight often becomes a barrier to receiving appropriate or timely care, forcing us to wait until we reach crisis point before anyone pays attention. The stigma and misunderstanding surrounding eating disorders can make it incredibly difficult for those affected to seek help. For individuals in larger bodies, the challenge is even greater. They are quite often praised for losing weight, even if the methods they’re using are harmful and unsustainable. Healthcare professionals may overlook their symptoms, attributing them to a lack of willpower rather than recognising them as signs of a serious mental illness. One HCP during a Eating Disorder Assessment made a comment to me that "I should be happy I was now a "normal weight" and not obese". This comment stung, It invalidated my struggle and perpetuated the harmful myth that eating disorders only affect those who are underweight. 

I first want to say my experience with Type 1 Disordered Eating (T1DE) is unique to me; no two stories are the same. While there may be common elements that run through everyone’s stories, each person has the right to speak their truth, and my truth is being in a bigger body while suffering with a Eating disorder has left me feeling that i do not deserve to get better.

So where does my journey with T1DE start? 

During 2019 a year where i got married, went travelling to the other side of the world, was offered weight lost surgery by my health care team as i was 'obese' and got a promotion at work that demanded me to work all hours of the day without much reward. I began to deal with the ever building whirlwind that was my life by missing meals, running before work, during my lunch break and weighing myself every day, I started to see the numbers fall, I felt pleased with myself one more day, another drop in weight. It became a little competition I was having with myself, and one I was winning. However it didn't take long before I was in trouble but i hide my struggles from my wife, my work colleagues my health care team as I believed that no one would think I was struggling with a eating disoerder because I was in a bigger body. 

As the Eating Disorder started to wrap its tight hold around me I started to take less and less insulin. “I can’t do this anymore,” i screamed as I threw my insulin pump at the wall. I knew the risks, but at that moment, I didn’t care. Within three days, my wife was rushing me to A&E in the back of an Uber due to Diabetic Ketoacidosis (DKA). This was my first DKA admission ever. I was not only in physical pain my heart trying to break out of my chest, unable to breathe, my mouth like sandpaper, and my stomach feeling like it had been punched repeatedly but also mentally disoriented. I was physically there, but my mind was somewhere else, confused about what was happening to my body. I couldn't catch up with my thoughts, but my head was screaming, "DANGER", don’t let them put that stuff into you, it’s poison, it will harm you." you would rather be skinny than healthy. 

Over the coming months i began to realise the more weight i lost the better i felt, nothing felt as good as being skinner did. I wanted to lose more, faster, quicker but the longer this went on, the more hospital admissions followed and the more my mind started to question  what else can i do to loose more weight. I believed that what i was doing was what i needed to do to survive.  

In my own journey, I’ve experienced the isolation and pain of living with an eating disorder in a larger body. I’ve felt the sting of judgment and the frustration of not being taken seriously. I reached out to the Eating Disorder Community and those who have struggled with T1DE and, one common theme i kept hearing over and over again as i collected stories from other was how a lot of people with Eating Disorder are trying their absolute hardest to recover while feeling like there is no place for them to belong or no appropriate treatment available. One of my main struggle has been that being in a bigger body makes you feel invisible.  I am still on my recovery journey, and this isn’t a guide on how to get better I wish I had one. Managing Type 1 diabetes adds another layer of complexity to recovery. Recovery is a winding path with many ups and downs. Some days are filled with determination and progress, while others are marked by setbacks and doubt. But each step forward, no matter how small, is a victory although to some it will never be enough.

If you’re struggling with an eating disorder, know that you are not alone. Your pain is valid, speak your truth, and remember that you are deserving of care and compassion, no matter your size. For me that started with being in a room full of people who was walking this journey too and they reminded me that each day of choosing health and self-compassion is a testament to the resilience of the human spirit and by addressing the barriers that people in larger bodies face, we can move forward towards a more comprehensive and compassionate approach to eating disorder treatment for all individuals, regardless of body size. 

You will be Found

For those people who know me, know I am mad about musicals. So for my first blog post I thought it was rather apt to use a song title from one of my favourite musical as a way of saying something i feel is quite important.  

“You will be found” is from Dear Even Hendon, and I should quickly say Spoiler Alert it revolves around a teenager who has severe social anxiety. He writes letters to himself in order to build up his confidence. One day, his letter ends up in the hands of a student named Connor Murphy, who takes his own life, and while the musical is about friendship, love, grief, & of course the battles faced with Mental Health there is an important message that runs through out and that is ‘you are never alone’ 

So I hear you asking why are you talking about this song in particular in a blog that’s suppose to be about you Cranky Pancreas? 

Well… 

This song reminds me of the diabeties community. In what ever form you interact with it or how long you have been apart of it. You will always find a group of people who will surround you with understand, friendship and a little bit of madness. Which is the best kind of support there is there can never be to many mad ideas to solve a problem especially when diabeties is involved. Sometimes the most random solution is the only solution that works i have found over the years. 

The community is a place where people need no explanation as to why you’re up at 3am eating the entire contents of your fridge, or why going on holiday is like a polar expedition or why you write INSULIN on a notepad and stick it on the back of the front door just to ensure you remember the important juice before leaving the house. Whether it’s to share in your celebration or to remind you that having diabeties is HARD. There is always someone holding out a hand to help. That in my opinion is something beautiful. 

One thing i have learnt over the last 21 years of having this condition is diabeties give you an extended ‘family’ and like family you dont have to like everyone but you should indeed respect that everyone has a place within that family and deserves a seat at the table. 

Sometimes i feel like to be in the community i have to be someone 'Special' have completed some grand challenge or done something amazing but thats not true at all. I am not an elite athlete, or have a massive online following I don’t run marathons, climb mountains, or cycle around the world. I am just me, Kat, a person who loves building Lego, who is a dog and cat mum, who needs music blaring through her earphones to survive and is a wearing of the most awesome dungarees.  But what i have come to realise is I still have a voice, and what i have to say is important. I can contribute to the community in my own way. You don’t have feel like unless loads of people know of you, you are not valued by a community who know what it feels like to feel unseen. 

Last week was diabeties Awareness week and while the messages that come out were mainly positive about how you can be and do anything you want to, that having diabeties, does not define who you are but i have to say its a major part of you, it changes you as a person. Whether for better or for worse you are changed. Remember diabeties is relentless, you are doing the job of an organ, keeping yourself alive. That in itself is wonderful. 

I just want to say when you feel like nobody is there, when you feel that nothing is working that things cant get better your community will ALWAYS be there in what ever shape or form you need them. 

 

You Will Be Found. 

Thanks for stopping by 

Kat x