Diabetes Distress

Diabetes distress is the emotional distress of living with T1D and the burden of relentless daily self-management and the prospect of its long-term complications (8,9). The daily routine of checking blood sugar, taking insulin, planning meals, and dealing with the unpredictability of diabetes can feel overwhelming. Over time, this stress can build up, leading to diabetes distress, a feeling of frustration, burnout, or exhaustion from managing diabetes every single day, which may lead to sub-optimal diabetes self-management, HbA1c, and impaired general well-being. 

Studies show that diabetes distress affects 30 to 50% of people living with T1D, highlighting just how common it is among those managing the condition (10–12).

Diabetes distress is different from depression, though the two can feel similar. It is more common than depression and can make diabetes management feel even harder. If you are feeling drained, unmotivated, or stuck in a cycle of frustration with your diabetes, you are not alone, and there are ways to manage it.

Diabetes Distress can present itself in various ways; some of the signs to look out for include:  

1. Sub-optimal HbA1c or unstable blood glucose levels  

2. Not attending clinical appointments  

3. Reduced engagement with diabetes self-care tasks (e.g. less frequent monitoring of blood glucose) 

4. Ineffective coping strategies for managing stress

5. Multiple negative life stressors or chronic stress distinct from diabetes  

6. Impaired relationships with health professionals, partners, family, or friends 

7. Displaying passive or aggressive behaviour during healthcare consultations

There are currently different scales used to identify diabetes distress. The most widely used are the Problem Areas in Diabetes Scale (PAID) and the Diabetes Distress Scale (DDS) (13,14).

PAID is a psychometrically robust questionnaire standardized for the first time in adults with T1D. It includes 20 questions, each rated on a 5-point scale from “not a problem” to “serious problem. Scores of each item are summed, considering a total score ≥ 40 points a significant distress (13).  Other variations of PAID also exists such as the 5-iterm short version (PAID-5) (15). Additionally, PAID-T (teenagers) and PAID-C (children), as well as their correspondent parent versions (P-PAID-T and P-PAID-C, respectively) also exist for specific subgroups (16,17).

Similarly to PAID, DDS assesses diabetes-related stress through 17 items on a 6-point scale. It provides a total distress score and four subscales: emotional burden, physician-related distress, regimen-related distress, and interpersonal distress. A mean score of 3 or higher indicates significant distress (14). 

Diabetes UK offers recommendations for patients to help with diabetes distress (18).  Firstly, it is important to recognise that experiencing diabetes distress is common. Managing T1D is challenging, and no one has a perfect relationship with it.

1.      Be kind to yourself

It is important to let go of high expectations on blood test results and set smaller, more realistic goals. It can also be helpful to avoid using phrases like 'good' or 'bad' blood sugar, making you feel like you have done something wrong.  Take time for yourself to help you relax.

2.     Talk About How You Feel

Talking to family and friends about feelings and support needs is recommended. Connecting with others with T1D through groups and online forums can also provide advice and encouragement.

3.     Take A Break

Taking occasional breaks from T1D management, whether for a few hours or a day, can be beneficial. While care should not be entirely neglected, adjusting targets or monitoring frequency may help reduce stress. Consulting a healthcare team before making changes is essential to ensure continued support.

4.     Get Support from Healthcare Professionals

The healthcare team is there to support patients both physically and emotionally in managing diabetes. If someone is experiencing diabetes-related stress, they should discuss it with their team. Together, they can help adjust routines or recommend an educational course. For additional support, they may consider speaking with a mental health specialist or exploring services like the Improving Access to Psychological Therapies (IAPT) program in England.