Diabetes Distress
Living with diabetes is about far more than managing blood-glucose numbers, medications, and clinic visits. For many people, it involves a constant emotional load — worry, frustration, guilt, fear, and exhaustion — that is often unseen and unspoken. This invisible weight has a name: diabetes distress.
In recent years, diabetes distress has become a recognised and measurable part of living with diabetes, distinct from but related to depression and anxiety. Understanding it — and knowing how to reduce it — can make a real difference to quality of life and diabetes outcomes.
History of Diabetes Distress
From “Diabetes Burnout” to “Diabetes Distress”: How the Concept Evolved
Before the term diabetes distress entered academic research, clinicians and psychologists used another phrase that resonated deeply with people living with diabetes — “diabetes burnout.”
This term was popularised in the 1990s by Dr William Polonsky, one of the pioneers of behavioural diabetes care. He used burnout to describe the emotional exhaustion, frustration, and demoralisation that come from the never-ending self-management demands of diabetes. People felt they were “doing everything right” yet still struggling, and many reached a point where they simply felt they couldn’t keep up.
As research interest grew in the psychosocial aspects of diabetes, the field sought a more structured and measurable way to capture this experience. In the mid-1990s, researchers such as Dr Larry Fisher, Dr Patti Ellis, and others began using the term diabetes distress — defining it as the emotional burden and worries specific to living with and managing diabetes.
This shift didn’t reject the burnout concept — it formalised it. Diabetes distress became the term used in research and clinical guidelines because it could be systematically assessed and tracked using validated tools like the Diabetes Distress Scale (DDS) and the Problem Areas in Diabetes (PAID) questionnaire.
In everyday conversation, though, many people still describe what they feel as burnout. The two terms refer to the same lived experience: the exhaustion, frustration, and emotional fatigue that come from the constant effort of living with diabetes.
When Diabetes Distress Was First Recognised
Although emotional responses to chronic illness have long been recognised, it was only in the 1990s that diabetes researchers began systematically studying diabetes-specific emotional strain.
Early studies found that while some people with diabetes met criteria for depression, many others did not — yet still experienced deep emotional exhaustion, self-blame, and worry about their diabetes. These individuals didn’t fit standard psychiatric labels, but their emotional distress clearly affected their self-care and wellbeing.
This recognition led to the formalisation of the concept of diabetes distress — a condition distinct from depression, yet with powerful effects on diabetes management and outcomes. Since then, more than two decades of research have confirmed its importance and prevalence.
How Common Is Diabetes Distress?
Prevalence varies depending on how and where it’s measured, but the evidence is remarkably consistent: diabetes distress is common.
Overall frequency
Large surveys and meta-analyses suggest that between 25% and 50% of people with diabetes experience moderate to high levels of diabetes distress at any given time. In the United States, national surveillance in 2021 reported that more than half of adults with diabetes had at least some distress, with around 7% experiencing severe levels.
Type 1 vs Type 2 diabetes
Both groups are affected, but the intensity differs:
- Type 1 diabetes (T1D): Around 25–40% experience high or severe distress. The constant, hands-on nature of T1D management — insulin dosing, carbohydrate counting, glucose monitoring — makes the emotional burden heavier.
- Type 2 diabetes (T2D): Distress is also common, affecting roughly 15–30%, and is highest among those using insulin or complex regimens.
A helpful rule of thumb drawn from multiple studies:
➡ 1 in 4 people with type 1 diabetes,
➡ 1 in 5 with insulin-treated type 2, and
➡ 1 in 6 with non-insulin-treated type 2 experience significant diabetes distress.
Who is most at risk?
Higher rates of distress are seen among:
- Younger adults and adolescents
- Women
- People with more complex treatment regimens
- Those experiencing unstable glucose levels or recent complications
- People facing financial strain, social disadvantage, or limited support
- Anyone who feels blamed or misunderstood by healthcare providers
Why Diabetes Distress Matters
Diabetes distress isn’t just “normal stress” — it has tangible effects on both emotional wellbeing and physical health.
- It affects self-management
When distress is high, motivation and capacity to manage daily diabetes tasks decline. People may skip glucose checks, delay insulin doses, or disengage from clinic care. Studies consistently show that higher diabetes distress is linked with higher HbA1c levels and less consistent self-care.
- It overlaps with — but is not the same as — depression
Diabetes distress and depression can look similar but are distinct. Someone can feel demoralised and overwhelmed by diabetes without meeting the criteria for a clinical mood disorder.
The distinction is important: diabetes distress requires diabetes-focused support, not necessarily antidepressant medication.
- It can become chronic
Distress often fluctuates with life events, treatment changes, or complications. For some, it becomes a persistent background feeling — a sense that diabetes is always “too much.” Recognising and addressing it early can prevent long-term burnout and disengagement.
What Drives Diabetes Distress?
Research and patient stories highlight several recurring drivers:
- The relentless regimen
Managing diabetes involves hundreds of daily decisions — food choices, glucose checks, insulin doses, exercise, and problem-solving. Even small mistakes can have immediate consequences. The sheer constancy of this work is exhausting.
- Fear of complications
Many people live with an ongoing, quiet anxiety about the future — vision loss, kidney disease, nerve damage, heart problems. These fears can be motivating but are often draining and guilt-inducing.
- Feeling judged or misunderstood
Comments like “Should you be eating that?” or “You should just try harder” can sting. Social stigma and misunderstanding, even from well-meaning family or clinicians, add to emotional burden.
- Healthcare interactions
Feeling rushed, blamed, or unheard in appointments — or struggling with fragmented care — can heighten distress. Empathetic, person-centred communication reduces it dramatically.
- Financial and social stressors
The cost of medications, devices, and healthy food; job insecurity; transport barriers; and unstable housing can all make diabetes management harder and more stressful.
- Emotional reactions to numbers
Many people tie their self-worth to glucose readings. Seeing “bad” numbers can trigger guilt or shame, even when fluctuations are outside their control.
Understanding these drivers helps target support — practical, emotional, or systemic — where it’s most needed.
How Diabetes Distress Is Identified
Clinicians now have tools to detect diabetes distress early:
- Diabetes Distress Scale (DDS): Measures distress in four areas — emotional burden, regimen distress, interpersonal distress, and physician distress.
- Problem Areas in Diabetes (PAID): A longer, well-validated questionnaire covering a wide range of diabetes-related worries.
Even a simple, empathetic question such as “How is living with diabetes feeling for you lately?” can open the door to recognition and support.
What Helps: Coping and Reducing Diabetes Distress
There’s no single solution, but evidence points to several effective strategies — from personal coping skills to system-level support.
- Acknowledge and normalise it
Recognising that distress is common and understandable reduces shame. Naming it — “I’m feeling diabetes burnout” or “I’m struggling with diabetes distress” — is often the first step toward relief.
- Problem-solving and practical coaching
Diabetes educators, nurses, and clinicians can help people identify specific challenges (e.g., timing insulin around shift work, travel, or family meals) and find realistic solutions. Breaking problems down into small, achievable steps restores confidence and control.
- Cognitive-behavioural therapy (CBT)
CBT adapted for diabetes helps reframe unhelpful thoughts — for example, replacing “I failed because my blood sugars are high” with “These readings help me learn what’s going on.”
Numerous studies show that diabetes-focused CBT can significantly reduce distress and improve self-management.
- Peer and group support
Talking with others who “get it” can be transformative. Peer groups, online communities, or structured programmes (like DESMOND or DAFNE in some regions) provide validation, encouragement, and shared learning.
- Simplifying the regimen
When safe and possible, clinicians can simplify insulin schedules, adjust targets, or introduce technology (such as continuous glucose monitoring or hybrid closed-loop systems) to ease daily workload.
- Integrated care
Embedding mental-health professionals within diabetes clinics or building strong referral links ensures timely, relevant support. Integrated behavioural health approaches have been shown to improve both emotional wellbeing and glycaemic outcomes.
- Addressing financial and social needs
Support might include connecting people with cost-saving options for supplies, community social services, or transport assistance. Practical help reduces one of the biggest real-world drivers of distress.
- Healthy coping practices
Mindfulness, relaxation techniques, physical activity, creative hobbies, journalling, or time in nature can all help. Even brief daily practices — deep breathing, gratitude, or reframing self-talk — can restore a sense of calm and perspective.
Personal Action Plan
for People Experiencing Diabetes Distress
- Name it – Recognise that feeling emotionally tired of diabetes is normal and shared by many.
- Identify your triggers – What’s hardest right now: daily routines, numbers, complications, relationships, or finances?
- Take one small step – Choose one achievable action this week: schedule a walk, ask your nurse for a review, or take a tech break from alarms for a few hours.
- Talk about it – Share with your diabetes team, a peer, friend, or counsellor.
- Reframe perfectionism – Diabetes isn’t about getting every number “right”; it’s about learning, adjusting, and living well.
- Seek tailored help – If distress persists, ask for referral to a psychologist experienced in diabetes care.
Diabetes distress — sometimes still called diabetes burnout — is a real, common, and treatable part of living with diabetes. It doesn’t mean weakness or failure; it reflects the ongoing effort required to manage a demanding condition.
Recognising distress as legitimate shifts the focus from blame to support. By talking about it openly, screening for it routinely, and offering practical and psychological help, we can make diabetes care more humane and effective.
The goal isn’t just to lower blood glucose — it’s to lighten the emotional load so people can live fuller, more balanced lives with diabetes.
Page updated October 2025
| DIABETES AND MENTAL HEALTH |
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| Healthy Thinking |
| Coping with Stress |
| Diabetes Distress |
| Anxiety and Depression |
| Disordered Eating and Diabetes |
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