Trigger Warning: This blog contains discussions around eating disorder behaviours, mental health, and language used by healthcare professionals. These are my personal experiences and reflections. This post is not intended as an attack on any individual or organisation but as an expression of the deep frustration and helplessness that I—and many others—feel.
I’ve struggled with how to begin this post, not because I didn’t have anything to say, but because this topic is deeply personal. It’s one of those things you don’t want to talk about—but not talking about it makes everything worse. So, here I am, diving into a conversation that desperately needs to be had.
Recently, people in the Type 1 Diabetes (T1D) community have been receiving devastating news: many are being discharged from T1DE (Type 1 Diabetes with Disordered Eating) services due to a lack of funding, and in some cases, the services are closing altogether. This is a shocking and harsh reminder that healthcare is too often dictated by budgets and bottom lines rather than the needs of the people it’s supposed to serve.
I’ve also heard stories of others being denied access to treatment because they don’t meet the rigid criteria for what a T1DE diagnosis entails. For many, insulin omission is just a small part of their eating disorder, not the whole picture. Yet T1DE services often can’t support those whose symptoms go beyond insulin omission. Meanwhile, traditional eating disorder services tend to turn away patients who are in a “normal” weight range due to limited resources and strict guidelines.
So, what happens to those who fall between the cracks? They stay there. Passed from one service to another like a problem no one wants to deal with. They’re told they’re not “ill enough” or don’t need help “just yet,” because their behaviors don’t fit the available treatments. These people are left in no man’s land, stuck in their illness far longer than necessary—and in some cases, they never find their way out.
I’m not naive. I understand that the NHS is stretched thin and that difficult decisions have to be made. Red tape is everywhere, and career advancement often means more than patient care. But the fact remains: people are dying from eating disorders complicated by Type 1 diabetes, and this shouldn’t be happening in 2024.
I consider myself fortunate to have access to both a T1DE team and an Eating Disorder Service, but this came at a tremendous personal cost. I had to lose a significant amount of weight to be deemed “sick enough” for treatment from my local Eating Disorder team. Now, on top of my T1DE diagnosis (often referred to as diabulimia), I also have a diagnosis of anorexia and am on the verge of being admitted to an Eating Disorder Unit.
In the T1D and eating disorder community, there’s often this unspoken assumption that the responsibility for recovery falls entirely on the patient. You’re expected to be ready, to trust the healthcare professionals (HCPs) who make you feel like your very existence is wrong. We’re told to “go with our gut,” to trust our instincts. But what happens when the very instincts we’re being told to ignore are the ones we’ve relied on for survival? What do you do when you’re told that everything you thought was healthy is actually killing you, one step at a time?
Since 2020, when my T1DE began to rear its ugly head during the COVID pandemic, I’ve been fighting for adequate treatment—not just for myself but for others who struggle with this awful complication of diabetes. I’ve been told that to be a “good diabetic,” food is something that must be policed, not enjoyed, and that it’s better to be underweight than overweight.
I want to send a message to all healthcare professionals, whether you work in diabetes or not: your language matters, every single day of the year. Whether it’s a check-up with a GP, an appointment with a dentist, or a follow-up with a Diabetes Specialist Nurse (DSN), the words you use can have an impact far greater than you realise.
We’re all aware that resources are scarce and research is underfunded, but what about the people who are left feeling hopeless? The ones convinced that the only way out of the hell they’re living in is an early death—or worse, taking their own life? This isn’t okay. No one should ever feel that suicide is the only option. Yet, for many battling T1DE, that’s the grim reality.
At a recent parliamentary inquiry supported by Breakthrough T1D UK (JDRF) into T1DE, I had the honor of meeting the parents of Megan Davison. Megan took her own life after struggling with T1DE, and it wasn’t until a second inquest—one her parents fought tirelessly for—that T1DE was acknowledged as a major factor in her death. Sadly, Megan’s story is not unique. People have been dying from T1DE-related complications for years, across the world. So why are we pulling funding for treatments that could save lives? It’s like stopping funding for cancer treatments.
Sitting in that room, listening to others share their stories—of being refused care, told they weren’t “sick enough,” or battered from fighting for treatment—I realized something: T1DE is like an infection that spreads, consuming every part of your life. You’re lost in the chaos, with no one reaching out a hand to help. The six people who shared their stories that day are warriors. They survived, despite the odds. But what about the hundreds—thousands—who don’t?
There’s an uncomfortable truth that many of us feel but rarely say aloud: to the system, we cost too much money. I recently read a quote from a diabetes consultant: “Those of us who battle T1DE cost the NHS too much money through DKA admissions, complications, and the sheer time it takes to treat us. It feels like, in the eyes of the system, our lives just aren’t worth the expense.” As harsh as this sounds, this is how thousands of people feel every single day.
But we do matter. Every life matters. And it’s time we start demanding better. It’s time we stop accepting funding cuts and budget constraints as valid reasons to let people die. It’s time we start valuing the lives of those with T1DE just as much as anyone else’s. Because at the end of the day, every single one of us deserves the chance to live, to hope to be heard, and to recover.
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