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.
