A new paper co-authored by Diabetes Action Canada’s (DAC) Linxi Mytkolli argues that diabetes distress may not fully capture the emotional reality of living with diabetes. Instead, that loss and grief are also central, and often overlooked, parts of the experience.  

For decades, the concept of diabetes distress has helped clinicians and researchers better understand the emotional burden of living with diabetes without stigmatization.

But according to the newly published paper in Frontiers in Clinical Diabetes and Healthcare, “Living with what is lost: reframing emotional life with diabetes through an integrative perspective on loss and grief,” there is more to the story.

📖 Read the full paper here

Not only are those living with diabetes navigating burnout, fear of complications, and the demands of self-management, but they are also managing a quieter, more cumulative, and harder emotion to overcome: grief. 

Grief is not tied to a single event, but rather connected to the ongoing experiences of loss that can come with chronic illness, like trust in one’s body, certainty about the future, and a sense of identity. 

While diabetes distress has become an important and widely used framework, the paper examines the emotional burden, frustration, and self-management pressures that those with diabetes face.

The paper introduces a new way of thinking about emotional life with diabetes by applying the Integrative Process Model of Loss and Grief (IPM) to diabetes care and lived experience.

What the researchers wanted to learn

The researchers wanted to explore whether the current language used in diabetes care fully reflects the emotional realities of living with diabetes over time.

While diabetes distress has become an important and widely used framework, the authors argue that it primarily focuses on emotional burden, frustration, and self-management pressures.

What it may miss are the slower, more existential experiences that can unfold across years of living with diabetes:

• Changes in identity
• Loss of bodily trust
• Altered relationships
• Shrinking possibilities
• Ongoing adaptation to uncertainty

To explore this, the team applied the Integrative Process Model of Loss and Grief, a framework originally developed in bereavement research, to the experience of living with diabetes.

The model looks at grief across five interconnected dimensions:

• Physical
• Emotional
• Cognitive
• Social
• Spiritual

Rather than viewing grief as a temporary response to a single event, the model recognizes that people can experience ongoing and cumulative forms of loss that require continual adaptation.

What the study found

The paper is a conceptual analysis rather than a clinical trial, but it brings together decades of diabetes distress research, grief theory, and lived experience to propose a broader understanding of emotional health in diabetes care.

The authors describe how diabetes can affect nearly every part of a person’s life:

• Physically, through constant vigilance and fear of complications
• Emotionally, through burnout, guilt, shame, and exhaustion
• Cognitively, through relentless planning and mental load
• Socially, through stigma, misunderstanding, and isolation
• Spiritually, through questions about meaning, identity, and the future

Importantly, the paper argues that these experiences are not signs of weakness or failure. They are understandable human responses to living with an incurable and demanding chronic condition.

One of the most striking moments in the paper comes from co-author Mytkolli, who reflected during a presentation at the Advanced Technologies & Treatments for Diabetes conference in 2025.

“I grieve my body, I grieve a system that was not built for me. I grieve the future I have to reimagine constantly. Patient engagement is grief work.”

The paper also highlights how these experiences are shaped by broader systems and inequities. In particular, the authors note that for many people, especially those living with type 2 diabetes, emotional burden can be compounded by stigma, food insecurity, limited healthcare access, racism, and social exclusion.

Why this matters

This paper matters because it pushes the conversation about diabetes beyond numbers, targets, and even distress scores.

It offers language for experiences that many people living with diabetes already know intimately but may struggle to describe.

By reframing diabetes through the lens of grief and adaptation, the paper challenges healthcare systems to think differently about emotional support. Instead of viewing difficult emotions as problems to “fix,” the authors encourage clinicians and systems to recognize them as natural responses to ongoing change and uncertainty.

That distinction matters.

It can help reduce stigma, create more compassionate clinical conversations, and support care that recognizes the full human experience of living with diabetes, not just its biomedical markers.

The paper also reinforces a growing recognition within diabetes care that emotional well-being is deeply connected to outcomes, engagement, and quality of life. Emotional burden does not sit outside diabetes care; it is part of it.

For Diabetes Action Canada, the work also reflects a broader commitment to patient partnership and person-centred care. The paper draws directly from grief-literate approaches developed within DAC’s patient engagement initiatives, including co-design methods that recognize emotional labour, vulnerability, reflection, and meaning-making as essential parts of collaboration.

Looking ahead

The authors are clear that this work is not about replacing diabetes distress frameworks or introducing another screening tool.

Instead, they are calling for a broader and more compassionate understanding of emotional life with diabetes – one that creates space for conversations about loss, adaptation, uncertainty, and identity alongside traditional clinical care.

That opens important opportunities for diabetes care, implementation, and patient engagement.

A grief-informed perspective could help healthcare professionals better recognize emotional strain that may otherwise go unspoken. It could support more person-centred conversations in routine care, improve how systems respond to burnout and disengagement, and create safer spaces for people to talk openly about what living with diabetes actually feels like over time.

The paper also points toward practical opportunities to embed grief-literate approaches into patient engagement, education, and implementation work, including the kinds of co-design and partnership models that DAC has helped champion nationally.

Ultimately, the authors argue that acknowledging grief is not about pessimism. It is about making room for the full human experience of chronic illness, and creating care systems that respond with greater understanding, dignity, and connection.