When Eating Disorder Day Patient Treatment Ends and You’re Not Ready (And You’re Still Managing Type 1 Diabetes Every Damn Day)

I don’t know how to explain what it feels like when your told that the intense day patient eating disorder treatment is coming to an end before you feel ready—because sometimes, it doesn’t even feel like you got the intense treatment you actually needed in the first place.

I had to fight to be taken seriously. Because I wasn’t thin enough. Because my BMI didn’t scream “emergency.” Because I looked “functional.” Because I was still showing up to work, for my relationship, to my life—barely, but no one saw the barely part.

And when you live with an eating disorder and Type 1 diabetes, that mask becomes even easier to wear. Because of course I’m tracking my food. Of course I’m weighing things. Of course I’m hyper-aware of every carb, every bite, every blood sugar spike. It’s not disordered—it’s just “good diabetes management,” right?

But inside, it was destroying me.

Recovery for me doesn’t look like freedom from numbers. It means I have to keep doing the one thing that breaks my brain every day: eat, dose, track, repeat. There’s no “let go” button. No break. No pause. Diabetes demands vigilance, and my eating disorder hijacked that and ran with it.

And now, day patient treatment is coming to an end. Not because I’m healed. Not because the war in my head has quieted. But because my time ran out. My allotted time in NHS Treatment ran out. The program said I plateaued. Or maybe they just had someone sicker—someone thinner—waiting for my spot.

They don’t say it like that, but that’s what it feels like.

And I’m left here, still counting carbs and bargaining with food. Still wrestling with the voice that tells me insulin makes me gain weight, that eating is weakness, that I’d be “better” if I just needed less support.

There’s no room in the system for someone like me. Someone who looks “okay.”
Someone who isn’t underweight but is unwell. Someone who’s managing a chronic illness that requires the very behaviours they’re trying to recover from.

And I am so, so tired.

Tired of being brave. Tired of smiling through appointments where they congratulate me for “good control” without asking what it costs. Tired of managing an illness that punishes you when you don’t eat—and a brain that punishes you when you do.

There’s grief in all of this. Grief for the treatment I fought to get, and then had to leave before it could really work. Grief for the way I was made to feel like I had to be on the edge of death just to deserve help. Grief for the body I live in, with its insulin, numbers and constant negotiations.
But underneath that grief, there’s also something else.

There’s the part of me that still shows up. That still doses. That still eats—sometimes even when it feels impossible. That still wants something better than this.
If you’re here too—still in the thick of it, still living in a body that demands everything while your brain fights back—you’re not alone.

You shouldn’t have had to earn your place in treatment.
You shouldn’t have to be thin to be taken seriously.
You shouldn’t have to choose between diabetes management and mental health.

You deserved more.
You still do.

And even if you’re not “better” yet, you are not a failure.
You are surviving something unthinkably hard.
And that is enough for today.

I Am More Than Just My Data Remembering the Person First.

As someone living with diabetes, I understand that the data you see as a healthcare professional (HCP) is important. My insulin pump downloads, blood glucose readings, Time In Range (TIR), and HbA1c levels provide a snapshot of how well I’m managing my health. This data sometimes reflects my best efforts, while other times, despite everything, it will reflect when my levels stubbornly refuse to cooperate. However Living with diabetes is like constantly walking a tightrope and I want to remind you that I am more than just the numbers you see on those reports. 

So do you as a HCP recognise the Human behind the Data that you see in front of you?

For anyone managing diabetes, the routine of checking blood sugar levels is a daily, hourly ritual in some cases. A low or high reading can trigger a cascade of emotions: frustration, anxiety, or even guilt. It’s easy to fall into the trap of letting these numbers define you. This becomes ingrained in us by our health care teams that we are just numbers. The "better" the numbers the "better" we are doing apparently. i think at some point we all wish that this was the case. 

When you look at my data, you see trends, patterns, and sometimes inconsistencies. You see numbers that might suggest I’ve had a bad day, that I missed a meal or two, or maybe overcorrected a low. What you don’t see are the reasons behind those numbers. You don’t see the stress of a difficult day at work, the joy of an unexpected outing, or the anxiety of trying to balance everything that life throws at me, including my Eating Disorder.  

Those numbers don’t capture the moments when I’ve tried my best and still ended up with a result that doesn’t reflect my effort. They don’t show the countless decisions I make daily to manage my diabetes, many of which go beyond what any graph or chart can illustrate. It does not map the hours of exercise i have done to feel like i deserve to eat that slice of bread or the anxiety of taking too much insulin gives me when i do not want to take my insulin at all. These are things that you as HCPs do not see. 

Living with diabetes is a constant balancing act. It’s about making choices every moment of every day—choices that sometimes lead to perfect readings, and other times to numbers that frustrate me. The metrics you see are important, but they don’t tell the full story of the struggle, the determination, or the triumphs I experience.

There are days when I follow all the rules, and my blood sugar still doesn’t cooperate. There are nights when I’m up adjusting my insulin, just trying to get a good night’s sleep. And there are moments of victory when I manage to enjoy a meal without worrying about the aftermath. This is very rare but has happened over the 20 years ive had T1D. But there is an Emotional Toll of Diabetes Management. 

The numbers that you as a HCP see also don’t convey the emotional toll of living with diabetes. The constant vigilance, the fear of complications, the frustration when things don’t go as planned—all of this takes a toll on my mental and emotional health. These are aspects of my life that no download can capture but are just as important as the data you see.

Every time I review my insulin pump data, I feel a mix of emotions—hope that I’ve done well, fear of judgment, and sometimes even a sense of defeat. It’s not just about numbers; it’s about my life, my well-being, and my journey with a chronic condition that I didn’t choose but have to live with every day. There is so much more to living a healthy life with diabetes than what can be measured. Managing diabetes is about balance, not perfection. I need you to see beyond the numbers and recognise the person behind them. I need you to understand that while data is critical for managing my diabetes, empathy and support are just as crucial. I need you to listen to my experiences, understand my challenges, and work with me to find solutions that fit my life—not just the data.

When we discuss my insulin pump downloads, I hope we can do so in a way that respects the complexity of living with diabetes. Let’s talk about the numbers, yes, but let’s also talk about how I’m feeling, what’s working for me, and what isn’t. Let’s collaborate on a plan that considers not just the metrics but also my quality of life.

There is a call for trying to find a balance within diabeties care. While it's essential to keep an eye on your numbers, it’s just as important to avoid obsessing over the numbers. Recognise the patterns that help you feel your best, and don’t let a single reading ruin your day. Your health is a long game, and it’s made up of countless small decisions, not just the result of one moment.

Celebrate the victories that have nothing to do with numbers—like cooking a meal with family or friends, taking time for self-care, or just getting through a tough day. These are the things that define you, not the fluctuations in your blood sugar.

At the end of the day, I am more than just the numbers you see on your screen. I am a person living with diabetes, doing the best I can to navigate this condition while also living my life to the fullest. My value is not defined by my blood sugar levels, insulin usage, or time in range (TIR).My worth is in the way I face each day with courage, and hope.

So, as you review my insulin pump downloads, I ask you to remember that while the numbers are important, they are just one part of a much bigger picture. I am more than the data you analyse—I am a whole, complex individual, deserving of care, compassion, and understanding.

Take back the narrative from the numbers is important. Your life story is rich and complex, filled with moments of joy, love, challenge, and growth. Diabetes is a part of that story, but it isn’t the whole story. You are a PERSON first and a PERSON with diabetes second.

So the next time you see a number on your meter or CGM, take a deep breath and remember: you are more than that number. You are a whole, vibrant, and valuable person, and your worth goes far beyond what any data can measure.

Here are some final thoughts, Living with diabetes is a journey, is a partnership between patient and healthcare professional. Please remember that while my downloads provide valuable insights, they don’t define me. I am more than just the numbers—you see a patient, but I hope you also see a person.  Keep focusing on the bigger picture—your overall health, happiness, and well-being. Remember that you are a powerful individual, and your story is about much more than just a meter reading. Take pride in the person you are, beyond the numbers. Keep going, keep living, and keep being you.

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.