Type One Disordered Eating (T1DE): Awareness Without Action Is not Enough

Awareness is powerful but only if it leads to action. Right now, more people are beginning to recognise Type One Disordered Eating (T1DE), a serious mental health concern affecting individuals with Type 1 Diabetes (T1D). But recognition alone is not enough. Without meaningful change without better diagnosis, treatment, and support awareness becomes just another conversation, while those struggling with T1DE continue to suffer in silence.

What Is Type One Disordered Eating?
T1DE is a condition where individuals with Type 1 Diabetes intentionally manipulate insulin doses, food intake, or both to influence their weight, appearance, or blood sugar levels. It can take forms such as insulin omission, extreme food restriction or purging behaviour. Managing diabetes is already a daily challenge, but when combined with disordered eating, it becomes a life-threatening battle one that is often misunderstood by both medical professionals and the public.

Despite its serious impact on both physical and mental health, T1DE remains unrecognised as an official diagnosis in major mental health handbooks like the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders) or ICD-11 (International Classification of Diseases). This lack of recognition creates barriers to effective treatment and leaves many without the support they desperately need.

If we don't act now to change this, how many more people will continue to be dismissed, misdiagnosed, or left to struggle alone?

The Value of lived experience
Many people with T1DE feel isolated or misunderstood. They often face stigma both from the diabetes community, where strict control is emphasised, and the eating disorder community, where insulin-related behaviours may not be well understood. Recognising T1DE as a distinct condition would validate their experiences, helping them feel seen, heard, and taken seriously.

Research Advancements
The lack of formal diagnostic criteria has slowed progress in understanding and treating T1DE. Recognition would drive more research into the causes and risk factors of T1DE.

• Prevention strategies to reduce its occurrence.
• Effective treatment methods tailored specifically for T1DE patients.
• More research means better treatments, better education, and ultimately, better outcomes.

Reduction in Life-Threatening Risks
T1DE is not just about disordered eating it has severe, life-threatening consequences. The combination of untreated diabetes and an eating disorder increases the risk of:

• Diabetic ketoacidosis (DKA) a potentially fatal complication caused by lack of insulin.
• Severe blood sugar fluctuations, leading to long-term organ damage.
• Higher rates of hospitalisation and mortality.

With early identification and intervention, we can save lives.

Barriers to Recognition: Why Has T1DE Not Been Acknowledged?
One of the biggest reasons T1DE remains unrecognized is its complexity. It overlaps with existing conditions such as eating disorders, diabetes-related distress, and anxiety disorders, making it difficult to categorise. Additionally, healthcare systems often separate mental and physical health, leading to gaps in treatment and understanding.
But ignoring T1DE does not make it go away it only makes it harder for those suffering to get the help they need.

A Call to Action: Awareness Must Lead to Change
Its time for action. Raising awareness is important, but we need more than conversations We need real change. Heres how we can make that happen:
Advocate for Awareness Share stories, host educational events, and amplify the voices of those affected by T1DE.

• Push for Medical Recognition Support efforts to include T1DE in diagnostic handbooks like the DSM and ICD.
• Encourage Interdisciplinary Collaboration Foster partnerships between endocrinologists, mental health professionals, and dietitian's to develop comprehensive treatment approaches.
• Support Research Fund and participate in studies that explore the impact of T1DE and effective interventions.

Conclusion: This Is a Matter of Life and Death
Type One Disordered Eating is a hidden crisis within the Type 1 Diabetes community. Its lack of recognition as an official diagnosis prevents progress, blocks treatment, and leaves people suffering alone. By formally acknowledging T1DE, we can create better resources, reduce stigma, and ultimately save lives.

This is not just about awareness it is about action. It’s about demanding change. It’s about making sure that those living with T1DE don't have to fight this battle alone.
Now is the time to push forward. Now is the time to make T1DE a recognised, treatable, and understood condition. Let’s turn awareness into action because lives depend on it.

When Recovery Feels Like a Race You’re Losing: The Weight of Blame and Diabetic Burnout in Eating Disorder Recovery.

I wish I could put into words what it feels like to fight two relentless battles at once—one against my own mind, the other against my own body. But how do you explain a war that never stops? How do you make people understand what it’s like to wake up every day already drowning, already suffocating, already exhausted before you’ve even moved?

Living with an eating disorder is hell. Living with Type 1 diabetes is a constant, unforgiving demand. Living with both? It’s a life where every moment is a battleground, where survival is an act of defiance. And the worst part isn’t just the physical toll—it’s the blame you feel from all sides. The silent, crushing weight of expectation. The way people look at you, their frustration leaking through their carefully worded concerns. As if I’m not trying hard enough. As if I could just snap my fingers and be better. As if I’m choosing this.

“Why aren’t you better yet?”

It’s a question that infects the air, even when no one says it aloud. I see it in the flickering disappointment in people's  eyes, in the tightening of their mouths when i cant complete the meal that is put in front of me, when my blood sugars spiral from the chaos of restriction, of binging, of fighting to exist in a body I do not trust. I hear it in the exhausted sighs of those who love me, their concern twisting into something sharper—something that cuts. And I feel it in my own bones, in the sickening weight of my own guilt, pressing me down, suffocating me until I can barely breathe.

But what people do not understand is recovery is a battle, it is a storm, a brutal, endless storm that drowns you, that drags you under just as you think you’ve found solid ground. It’s battling the voice that whispers I don’t deserve food, while another voice warns me that without it, my blood sugar will plummet. It’s the paralysing terror of insulin, because insulin means weight gain, and weight gain means failure. It’s the sheer exhaustion of fighting this war when I don’t know how to win it. 

As well as trying to recover from my eating disorder i still have a chronic illness to fight and thats where Diabeties burnout comes knocking. Because when you’re pouring every bit of energy into proving you’re “recovering fast enough” for everyone else, something must give. And for me, that something is often my diabetes management.

I stop looking at my blood sugars on my sensor because the numbers feel like another failure, another metric proving I am not enough. I forget to bolus on my pump because, honestly, some days I just don’t care. I let my sugars run high because the thought of counting carbs feels overwhelming, because sometimes insulin feels like my enemy, because sometimes I just don’t have the fight in me.

And then the cycle tightens its grip. High blood sugar makes me feel sluggish, sick, weighed down with exhaustion. It makes me irritable. It makes me hate my body even more. And that hatred feeds the eating disorder, which fuels the burnout, which fuels the guilt, which fuels the shame, which fuels the blame.

They tell me I need to try harder. That I need to want recovery more. That I need to take responsibility. That I should just eat, just take my insulin, just do better.

But no one sees how much I’m already trying. No one sees the nights I lie awake, my body screaming for rest while my mind screams louder. No one sees the mornings I force myself to check my sugars, even though I’m terrified of what they’ll say. No one sees how much energy it takes just to keep breathing when every part of me wants to disappear.

I wish they did. I wish they understood that blame doesn’t heal. That shame doesn’t inspire. That you cannot force someone to recover through guilt. That healing takes time—agonising, painful time. More time than anyone wants it to, more time than I want it to.

One of the biggest barriers to recovery is the culture of blame that exists within health care services. Instead of compassion, so many of us are met with skepticism, with cold clinical detachment. If you’re not gaining weight fast enough, you’re “not compliant.” If you’re struggling to eat, you’re being “difficult.” If you dont take your insulin you must be suicidal. There is no space for fear, no patience for trauma, no recognition of the mental torment that comes with this illness. Just rules. Just charts. Just rigid expectations that reduce us to numbers and progress reports, to successes and failures.

And then there are the expectations of HCP's themselves—the unspoken demand that you must recover on their timeline, that you must fit into their rigid definitions of what “getting better” looks like. If you don’t make progress fast enough, you’re labeled as resistant. If you express fear or distress over food or taking your insulin, they see you as uncooperative rather than terrified. If you’re not dangerously underweight, your disorder is downplayed. Their approach can feel more like a checklist than care—are you eating enough? Gaining weight? Taking your insulin? Hitting your targets? Good, then you must be fine. But I am not fine. The numbers may shift, but the torment inside my head remains. Recovery isn’t just about weight. It’s about rewiring an entire way of thinking, of learning to exist in a body I have spent years at war with. And that takes time—time that the system doesn’t want to give me.

Losing weight during treatment is seen as the ultimate failure. It doesn’t matter if you weren’t underweight to begin with—if the number on the scale drops, alarms go off. The reaction is immediate: accusations of relapse, threats of hospitalisation, the unspoken message that you are doing recovery “wrong.” But no one asks why. No one considers the constant stress, the anxiety, the toll that battling both an eating disorder and diabetes takes on a person. They see the weight loss and assume intentional restriction, non-compliance, defiance. But sometimes, my body reacts to stress in ways even I can’t predict. Sometimes, the pressure to recover while perfectly managing my diabetes becomes too much, and my body rebels. And instead of receiving support, I receive judgment. Instead of understanding, I receive fear. And it only fuels the guilt that is already eating me alive.

Completing a meal plan in day patient treatment is often seen as a simple task—just eat the food and you’ll get better. But it’s not that simple. There’s the overwhelming guilt of eating, the fear of fullness, the terror of weight gain. There’s the shame of sitting in a room full of people, eating when every fibre of your being is screaming at you not to. There’s the exhaustion from constantly fighting your own thoughts, from feeling like every bite is a betrayal of the disorder that has, for so long, felt like your identity. And for those of us with diabetes, there’s an extra layer of fear—what if this meal spikes my blood sugar? What if I calculate the insulin wrong? What if I gain weight too fast? Every meal becomes a battlefield, every bite a fight against demons no one else can see. And when you struggle, instead of understanding, you’re met with blame. Instead of support, you’re met with disappointment. And it makes you wonder—if I can’t even do this right, what’s the point of trying at all?

I don’t need to be told to try harder. I need patience. I need understanding. I need space to heal, without feeling like I am failing every second that I’m not “better” yet.

Because I want to get better. I really do. But I cannot recover just to make other people comfortable. I must recover for me. And that means being allowed the space, time and support to do so.