The True Cost of Having T1DE That No One Talks About

Living with Type 1 diabetes (T1D) is a complex and demanding journey. When an eating disorder is added to the equation—referred to as Type 1 Diabetes with Disordered Eating (T1DE)—the challenges become exponentially greater. While much is said about the physical and medical aspects of managing T1D, the true cost of T1DE is often overlooked. This cost is multifaceted, affecting not just the body, but also the mind, relationships, and overall quality of life.

There are many COSTS to T1DE some more spoken about than others here are a few i would like to talk about. Firstly i want to talk about the Emotional and Psychological Toll. The emotional and psychological burden of T1DE is profound.

• Constant Fear and Anxiety: Managing T1D requires constant vigilance, and when disordered eating behaviours are added, the fear of losing control intensifies. Every meal becomes a battleground, and the anxiety over blood sugar levels, weight, and body image can be paralysing.
• Guilt and Shame: Individuals with T1DE often experience intense guilt—guilt for eating, guilt for taking insulin, guilt for not being "perfect" in their diabetes management. This is compounded by shame, particularly when society and HCPs fail to understand the complexity of their struggle.
• Depression and Isolation: The mental strain of T1DE can lead to depression and feelings of hopelessness. Many people with T1DE feel isolated, believing that no one understands what they’re going through, which can push them further into their disordered behaviours.

Next is the Physical Health Consequences. The physical toll of T1DE extends beyond the typical complications of diabetes.

• Long-Term Complications: Insulin manipulation or omission, a common behaviour in T1DE, can lead to severe complications such as diabetic ketoacidosis (DKA), neuropathy, retinopathy, and kidney damage. These complications can shorten life expectancy and significantly reduce quality of life.
• Nutritional Deficiencies: Disordered eating patterns can lead to malnutrition, which exacerbates the physical stress on the body. Over time, this can weaken the immune system, impair wound healing, and contribute to further complications.
• Chronic Fatigue and Weakness: The combination of fluctuating blood sugar levels and inadequate nutrition can lead to chronic fatigue, making daily activities a struggle and reducing the ability to engage in normal life.

Another consideration is the Financial Burden/cost of T1DE, this is significant and often underestimated.

• Lost Income: The emotional and physical toll of T1DE can make it difficult to maintain regular employment. Frequent doctor appointments, sick days, and hospitalisations can result in lost income.

There is also the impact on Relationships both personal and professional. T1DE doesn’t just affect the individual; it also takes a toll on relationships with family, friends, partners, and work colleagues.

• Strain on Family Dynamics: Family members may struggle to understand the complexity of T1DE, leading to frustration, misunderstandings, and tension. The constant worry about their loved one's health can also cause emotional burnout.
• Isolation from Friends and Social Activities: Social events often revolve around food, which can be anxiety-inducing for someone with T1DE. This can lead to social withdrawal, further deepening the sense of isolation and loneliness.
• Relationship Stress: Romantic relationships can suffer as partners may feel helpless, frustrated, or even resentful. The secrecy and guilt associated with disordered eating behaviours can create emotional distance and mistrust.

Another aspect is the difficulty with Cognitive and Academic/Work Performance. T1DE can also impact cognitive function, affecting academic and work performance.

• Difficulty Concentrating: Fluctuating blood sugar levels can lead to brain fog, making it difficult to concentrate or make decisions. This can affect academic performance or job productivity.
• Memory Issues: Poorly managed diabetes and nutritional deficiencies can lead to memory problems, making it harder to retain information or learn new skills.
• Missed Opportunities: The need to prioritise health over other aspects of life can lead to missed opportunities in education, career advancement, or personal growth.

Finally there is the Loss of Joy and Passion. One of the most profound yet unspoken costs of T1DE is the loss of joy and passion in life.

• Hobbies and Interests Fade: The overwhelming focus on managing T1D and the disordered eating can cause people to lose interest in hobbies and activities that once brought them joy.
• A Life Consumed by Numbers: Life becomes consumed by counting carbs, monitoring blood sugar, and managing insulin, leaving little room for spontaneity or enjoyment.
• Disconnection from Self: T1DE can create a disconnect between the individual and their true self, as their identity becomes entangled with their illness.

The true cost of T1DE goes far beyond the physical and financial aspects—it permeates every corner of a person’s life, affecting their mental health, relationships, career, and overall sense of self. It’s a burden that many carry in silence, often feeling misunderstood and unsupported. Acknowledging these hidden costs is the first step towards providing more comprehensive care and support for those living with this dual diagnosis. It's essential to approach T1DE with empathy, understanding, and a commitment to addressing not just the physical, but also the emotional and psychological needs of those affected.