Diabetes Awareness Month may be over, However we cant stop Advocating for Better Care for people who experience Type 1 Diabetes and Eating Disorders

As we have come to another end of Diabetes Awareness Month. I wanted to write some of my reflections about what the month of November means to me. 
  
Every November, the world lights up in blue for Diabetes Awareness Month — a time for education, reflection, and community. For me, it’s also a time to take a deep breath, look back at my own journey, and speak honestly about something many people don’t talk about enough: T1DE — Type 1 Diabetes and Eating Disorders.

Because while diabetes is already a 24/7 job, living with T1DE means carrying an invisible weight on top of it. 

The Hidden Struggle Behind the Numbers

When I was first diagnosed with Type 1 diabetes, everything in my life became about numbers: blood glucose readings, insulin units, carb counts. I wanted to do everything “right.” But no one tells you how overwhelming that constant mental maths can be — or how easy it is for those numbers to start defining your worth.

Over time, the pressure to stay “in range” mixed with a deep fear of gaining weight, eating “wrong,” or losing control. I began to tie my identity to my blood sugars and my body image. That’s when I found myself facing something I didn’t even know had a name — T1DE.
It’s a quiet, consuming battle. Skipping insulin. Restricting food. Feeling guilty for every bite.
And all the while, pretending everything’s fine because from the outside, diabetes already looks “managed.” But inside, it’s chaos. It’s exhaustion. It’s shame.

Breaking the Silence

For years, I didn’t have the words to explain what was happening to me. I thought I was alone. It wasn’t until I stumbled upon the term “T1DE” that I realised this wasn’t just me — that others were struggling too, trying to survive in a world where diabetes management and body image collide in painful ways.

So this Diabetes Awareness Month, I wanted to shine a light on this hidden side of living with Type 1. Because awareness isn’t only about insulin and glucose levels — it’s about mental health, self-compassion, and healing.

We need to talk about T1DE. We need to talk about how easily food, insulin, and numbers can become tangled with emotion. And we need to make it safe for people to say, “I’m struggling.”

Awareness Means Understanding

When I talk about T1DE, I’m not looking for sympathy — I’m looking for understanding. I want healthcare professionals to know the signs. I want families to ask gentle questions instead of assuming. And I want anyone who feels trapped in this cycle to know they’re not broken or weak.

Living with T1D is already a full-time job. Living with T1DE is like doing that job with your heart in constant conflict with your mind. Awareness means recognising that mental health is part of diabetes care. It means treating the person, not just the pancreas.

Finding Hope and Healing

Recovery isn’t linear. Some days, I still struggle. But I’ve learned that healing starts with honesty — with saying out loud what I used to hide. It starts with support, therapy, community, and compassion — both from others and from myself.

This November, when I saw the blue lights and the #DiabetesAwareness posts, I reminded myself:

Awareness is more than information — it’s connection. It’s courage.

T1DE may be part of my story, but it no longer defines it.

My Call to Action: Turning Awareness Into Change

If you’ve read this far, thank you — that means you care, and that’s where change begins.
Here’s some of the things we can continue to do to raise awareness of T1DE. 

💙 Start the conversation. Talk about T1DE. Ask questions. Share this post. Help break the silence that keeps so many people isolated.

💙 Educate yourself. Learn the warning signs of T1DE — skipped insulin doses, sudden weight changes, fear of eating, or secrecy around diabetes care. Awareness saves lives.

💙 Advocate for mental health care in diabetes clinics. Support organisations and professionals working to make mental and physical health equal priorities.

💙 Offer compassion, not judgment. Whether someone’s numbers are “perfect” or not, remember they’re human. We all are.

💙 If you’re struggling: Please know you are not alone. Reach out — to your doctor, a loved one, or an eating disorder helpline. Speaking up is the bravest first step toward healing.

Together, we can make T1DE more than a hashtag. We can make it a movement — one rooted in empathy, understanding, and hope.

Because awareness starts the conversation, but compassion changes lives.

The Harm Caused in Treatment for Type 1 Diabetes and Eating Disorders (T1DE)

Living with Type 1 diabetes (T1D) is already a delicate balancing act. Add an eating disorder (ED) into the equation, and the complexities multiply. This intersection, often referred to as T1DE (Type 1 Diabetes with Eating Disorders), presents unique challenges that many healthcare systems fail to address effectively.

While treatment programs are designed to help, they often miss the mark, leaving patients feeling misunderstood, unsupported, or even harmed. For those navigating T1DE, the stakes are high: inadequate care can exacerbate both the eating disorder and diabetes, leading to long-term physical and emotional consequences.

It’s time to shine a light on the harm caused by traditional treatment approaches and advocate for more nuanced, compassionate care for those living with T1DE.

The Overlap of T1D and Eating Disorders

People with Type 1 diabetes are at higher risk of developing eating disorders compared to the general population. The constant focus on food, numbers, and weight management—integral to diabetes care—can fuel disordered eating patterns. For some, this manifests as insulin restricted to lose weight. Others may engage in binge eating, restrictive eating, or other behaviours tied to body image and control.

This intersection creates a dangerous cycle:

• Skipping Insulin: Leads to dangerously high blood sugar levels, ketoacidosis, and long-term complications.
• Bingeing or Restricting: Causes erratic blood glucose levels, emotional distress, and increased risk of physical harm.
• Shame and Stigma: Surrounding both the eating disorder and diabetes can prevent individuals from seeking help.

Treatment is essential—but it often falls short.

The Harm Caused by Inadequate Treatment

Traditional eating disorder and diabetes care often fail to address the unique needs of those with T1DE. Here’s how:

1. Overemphasis on Weight and Numbers

Both diabetes management and eating disorder recovery frequently focus on metrics:

• Diabetes care emphasises blood sugar readings, A1C levels, and weight.
• Eating disorder treatment often centers on weight restoration or achieving a "healthy" BMI.

For someone with T1DE, this dual focus can be overwhelming and harmful. Being constantly weighed or monitored can reinforce disordered eating behaviours and deepen the fear of weight gain. Patients may feel reduced to numbers rather than treated as whole individuals.

2. Lack of Specialised Knowledge

Many healthcare providers lack training in managing T1DE. Diabetes specialists may overlook the psychological aspects of disordered eating, while eating disorder clinicians may not fully understand the complexities of diabetes care. This gap leaves patients caught in the middle, feeling misunderstood or unsupported by both sides.

For example:

• A diabetes team might focus solely on insulin adherence, ignoring the emotional reasons behind insulin omission.
• An eating disorder team might suggest avoiding carbs—a strategy disastrous for someone with T1D.

3. Shame-Based Approaches

Unintentional but harmful language is all too common in treatment settings. Statements like “You’re not taking care of yourself” or “Why would you skip insulin?” can reinforce feelings of failure and guilt. This shame-based approach often deepens the secrecy and isolation that fuel disordered eating behaviors.

4. Rigid Treatment Protocols

Many eating disorder programs are not equipped to handle the medical demands of diabetes, such as managing blood sugar fluctuations or administering insulin. Conversely, diabetes care often lacks the flexibility to address the psychological needs of eating disorder recovery. 

Patients with T1DE are frequently excluded from eating disorder programs due to their medical needs or discharged early from diabetes care for being “noncompliant,” when in reality, they need integrated support.

5. Overlooking Mental Health

The mental health aspects of T1DE—such as anxiety, depression, and trauma—are often sidelined in favor of physical health. This imbalance leaves patients feeling unsupported in addressing the underlying factors driving their eating disorder.

The Emotional Toll

Beyond the physical risks, inadequate treatment for T1DE takes a significant emotional toll. Patients often report:

• Feeling Blamed: When their condition doesn’t improve, even though T1DE is complex and requires nuanced care.
• Loss of Trust in Healthcare Teams: After being dismissed or misunderstood by those who were supposed to help.
• Hopelessness: When treatment feels more like punishment than a path to healing.

This emotional distress can lead to avoidance of medical care, worsening both diabetes and the eating disorder.

Toward Better Treatment for T1DE

To truly support those living with T1DE, we need a fundamental shift in how care is delivered. Here’s what effective treatment could look like:

1. Integrated, Multidisciplinary Teams

Care for T1DE requires collaboration between diabetes specialists, eating disorder clinicians, mental health professionals, and dietitian. Patients need a team that works together to address both the physical and emotional aspects of their condition.

2. Trauma-Informed Care

Recognise that many individuals with T1DE carry trauma—whether from their illness, past treatment experiences, or life circumstances. Treatment should prioritise empathy, safety, and empowerment, avoiding shame-based tactics or rigid protocols.

3. Patient-Centered Approaches

Every person with T1DE is unique, and their treatment should reflect that. Involve patients in creating individualised care plans that honor their needs, fears, and goals.

4. Focus Beyond the Numbers

Shift the emphasis away from weight, blood sugar readings, or A1C levels as the sole markers of progress. Celebrate improvements in emotional well-being, coping skills, and quality of life as equally valid indicators of recovery.

5. Education and Advocacy

Healthcare providers need better training to understand the nuances of T1DE. Patients and their families also need resources to navigate the system and advocate for comprehensive care.

A Call for Compassion

Living with T1DE is one of the most challenging experiences a person can face, and treatment should offer hope, not harm. It’s time to move beyond outdated models of care and create systems that honor the complexity of this condition.

To those navigating T1DE: You are not alone. Your struggles are valid, and your needs deserve to be met with understanding and compassion. Recovery is possible—but only when the systems meant to help truly start to listen.

Let’s work toward a world where no one with T1DE feels failed by the care they seek.

Split in Two: When You Have Type 1 Diabetes and an Eating Disorder—and the System Only Sees Half of You

This piece addresses body image, disordered eating, and chronic illness. If you find this subject triggering, please take care of yourself and consider stepping away or reaching out to a friend or professional.

This isn’t just about illness. It’s about being torn between two kinds of care one that listens, and one that demands silence.

When you live with Type 1 diabetes, you’re told your body is complicated but capable.
You’re given choices, Monitors, Technology, A team. You’re taught how to listen to your body, adjust, and live.

However when you also live with an eating disorder, treatment looks very different. You’re told your body is dangerous. You’re given a meal plan and rules. You’re watched. Judged. Controlled. You’re taught that trust in your body is delusional, and compliance is the only cure.

I am one of those people who live in that split.
And let me tell you—it doesn’t just hurt.
It shatters you.

Two conditions. Two treatments. One body.

So lets break this down a little more into the difference in support i have received for my physical health vs the treatment i have received for my mental health.  

With diabetes, my care team checks in & asks questions like:

“How are you feeling?" 

"Are your insulin ratios still working for you?" 

"Let’s adjust if needed.”
“We know everyone’s body responds differently. You know your body the best.”

With my eating disorder, What I hear from my team is:

“You just have to follow the plan"

"You don’t need to understand it.

 "Just do it.”

"You need to try harder, have to be more motivated"  

“You’re not thinking clearly. We’ll decide what’s best for you.”

Do you see/feel that difference?
One says: We trust you.
The other says: You are the problem.

But what happens when they collide?
Try eating when every meal spikes your blood sugar but your treatment plan says “just push through.”

Try managing insulin when your body image screams that every correction is “too much.”

Try recovering when every single aspect of your medical life is already about food, numbers, control and now, recovery wants more of it.

Try navigating a system where one team helps you co-create a plan for your survival and the other that strips you of your autonomy in the name of saving you.

The result?

You disappear.
You become “difficult.”
“High risk.”
“Non-compliant.”

A liability in the eyes of systems too rigid to hold complexity.

But here’s the thing: I’m not resisting treatment. I’m resisting harm.

I’m resisting a plan that ignores the daily insulin, the carb counting, the emergency juice boxes.
A plan that demands blind trust in food, when I’ve spent years being taught to micromanage every gram of it. I’m resisting a system that asks me to let go of control when control is literally what keeps me alive. There is nothing healing about being told that your survival mechanisms make you unwell.

Diabetes made me a fighter. It taught me how to advocate, plan, adapt.
Eating Disorder treatment told me I had to forget all of that to be “recovered.” It’s like having a body that’s already complicated, only to be told: “That’s too complex for us to handle here.”

So they simplify you. Flatten you. Force you into a model made for someone else’s story.
And when it doesn’t work? They say you failed, that you do not want to get better. When really the treatment models that the Eating Disorder system uses was never designed for someone like you.

But I don’t want to choose between parts of myself. I want to be treated as a whole.

I want recovery that says:
• Yes, you’re diabetic.
• Yes, you have an eating disorder.
• Yes, this is messy and complex—but your body still deserves care that fits.

I want a therapist who doesn’t flinch when I talk about blood sugars. A dietitian who understands that some days food is medicine and some days food feels like poison. A system that sees my fear not as defiance, but as a signal: “There’s more to this story.”
I want what every patient deserves: a care plan that doesn’t ask me to choose between staying alive and being free. Because when you live with both diabetes and and a eating disorder, you walk a tightrope every day. One hand holding insulin. One hand battling your own mind. No safety net. No room for error. 

And all I’m asking is: Stop pretending a one-size-fits-all treatment approach/plan is enough for someone holding this much weight. 

To the systems, the clinicians, the gatekeepers of healing: If your treatment model can’t hold someone like me, then it’s not a treatment model it’s a cage.
And I didn’t fight this long just to be locked in another one. If you’re someone walking this road too: I see you. You are not “too much.” You are not broken. You are carrying more than most can imagine. You deserve care that treats all of you—not just the parts that fit the manual.