T1D and mental well-being
Information to help you navigate T1D and mental health.
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Type 1 Diabetes (T1D) is an autoimmune condition in which the body mistakenly attacks and destroys the cells in your pancreas that produce insulin (1).
Insulin is a hormone that helps move sugar (glucose) from the bloodstream into cells, where it is used for energy. Without enough insulin, glucose builds up in the blood, leading to high blood sugar levels (hyperglycaemia) (1).
Managing blood sugar levels is important because, over time, high blood sugar can lead to complications affecting the heart, kidneys, eyes, and feet (2).
As of 2022, more than 9 million people are living with T1D, including 1.52 million under the age of 20 years old (3).
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Managing T1D is very demanding and complex. It requires constant blood glucose monitoring, insulin dosing, regular physical activity, and adherence to a healthy diet (4). However, T1D is not just about physical health, it also affects emotions, relationships, and mental well-being (5).
Many people with T1D experience Diabetes Distress, Anxiety, or Depression (5). In fact, studies show that people with diabetes are 2 to 3 times more likely to experience depression than those without (6). When mental health struggles arise, they can make diabetes management even harder, creating a frustrating cycle that impacts overall well-being (7).
Recognising the importance of emotional well-being, organisations like the American Diabetes Association, Diabetes UK, and NICE recommend that healthcare providers assess and address the mental health needs of people with diabetes (8).
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Despite the existence of numerous guidelines recognising mental health impact of T1D, many people still don’t get the emotional support they need. Psychological challenges like Diabetes distress, anxiety, and depression, often go unnoticed and untreated in routine healthcare making managing the condition even harder (8).
Adolescents with T1D are especially vulnerable to mental health challenges. This elevated risk highlights the important need to address the mental wellbeing of people with T1D. Targeted interventions and heightened awareness within the healthcare system are essential to ensure that mental health issues are adequately recognised and managed (8).
About Diabetes Distress
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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.
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Diabetes Distress can present itself in various ways; some of the signs to look out for include:
Sub-optimal HbA1c or unstable blood glucose levels
Not attending clinical appointments
Reduced engagement with diabetes self-care tasks (e.g. less frequent monitoring of blood glucose)
Ineffective coping strategies for managing stress
Multiple negative life stressors or chronic stress distinct from diabetes
Impaired relationships with health professionals, partners, family, or friends
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).
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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.
Information about depression
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Depression is a medical condition that causes a persistent feeling of sadness and a loss of interest in activities once enjoyed. It can interfere with daily functioning at work and home, including managing diabetes effectively (19).
Major depression/clinical depression
Major depression is typically indicated when an individual exhibits five or more of the following symptoms over a two-week period (8):
Persistent depressed mood or loss of interest/pleasure in regular activities
Significant weight loss or gain
Insomnia or excessive sleep
Lack of energy
Difficulty concentrating
Indecisiveness
Feeling of worthlessness
Excessive or inappropriate guilt
Recurrent thoughts of death/suicide
Mild depression/subthreshold or minor depression
Mild depression is characterised by symptoms that do not meet the full diagnostic criteria for major depression (8). Although less severe, it still affects the individual and warrants clinical attention. If left untreated, mild depression has the potential to progress into major depression (8).
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One in five people with type 1 diabetes are affected by moderate to severe depression symptoms (8). Amongst children and adolescents it is found to affect one in three people (20). Only 25% to 50% of people with diabetes and depression receive a diagnosis and treatment. However, therapy, medication, or a combination of both is typically highly effective. Without treatment, depression tends to worsen rather than improve (21).
The exact causes of depression in individuals with diabetes remain unclear, though they may be linked to the chronic nature of the condition and its complex management. Depressive symptoms in people with T1D are associated with several adverse medical and psychological outcomes, including (8):
Sub-optimal diabetes management (e.g., less frequent blood glucose monitoring, reduced physical activity, unhealthy eating habits, and smoking)
Elevated HbA1c levels and increased risk of hypo- and hyperglycemia
Higher prevalence and earlier onset of complications and disabilities
Increased risk of diabetes distress and elevated anxiety symptoms
Reduced quality of life and impaired social functioning
Increased personal, familial, and healthcare system costs
Greater risk of premature mortality
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There are several validated depression questionnaires available for use in primary care to assess and monitor depressive symptoms (22) .
The PHQ-9 (Patient Health Questionnaire-9) is a nine-item, self-administered scale based on DSM-5 criteria. It classifies symptoms on a scale from 0 (not at all) to 3 (nearly every day), with a maximum total score of 27 (23).
The HADS (Hospital Anxiety and Depression Scale) is a 14-item self-administered scale, with seven questions each for depression and anxiety (24). Each subscale has a maximum score of 21, with scores of 8–10 indicating mild depression, 11–14 moderate, and 15–21 severe.
The BDI-II (Beck Depression Inventory-II) is a 21-item, self-administered scale that follows DSM-5 criteria (25). Each question is rated from 0 to 3, with a total score ranging from 0 to 63. Scores of 14–19 indicate mild depression, 20–28 moderate, and 29–63 severe (25)
Information about anxiety and fear of hypoglycaemia
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Anxiety can be defined as a fear-based mental state, normally felt as a discomforting emotional state accompanied with physical sensations in the body (26). Anxiety is a normal reaction to stress. Mild levels of anxiety can be beneficial in some situations. It can alert us to dangers and help us prepare and pay attention (27). Anxiety disorders differ from normal feelings of nervousness or anxiousness and involve excessive fear or anxiety. Anxiety disorders are the most common of mental disorders (27).
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An anxiety disorder, also known as clinical anxiety, is a psychological condition characterised by persistent and excessive anxiety and worry. According to Diabetes UK (2019), this disorder is accompanied by a range of symptoms, including (28):
Emotional: Feelings of unease, worry, irritability, or panic, including panic attacks.
Cognitive: Thoughts of inadequacy or difficulty concentrating.
Behavioural: Aggression, restlessness, fidgeting, or avoidance.
Physical: Symptoms such as rapid heartbeat, trembling, dizziness, sweating, or nausea.
Anxiety symptoms are prevalent among youth with T1D, with an estimated 13% to 21.3% screening positive at some point during childhood or adolescence (29). They include excessive worry and unnecessary anxiety for numerous activities with symptoms being present and continuous for a minimum of 6 months. Other somatic symptoms include heart palpitations, excessive perspiration and crying (26).
Unlike non-clinical anxiety, which is a typical response to stress or perceived threats, an anxiety disorder disrupts daily functioning and causes significant distress. It is not attributed to substance use (e.g., medication), medical conditions (e.g., hyperthyroidism), or other mental health issues (e.g., depression).
Anxiety disorders can take many forms including:
Generalised Anxiety Disorder (GAD): Characterised by intense, excessive, and persistent worries about multiple aspects of life.
Social Anxiety Disorder: Involves an intense and excessive fear of being scrutinised or judged by others, leading to avoidance of social situations.
Panic Disorder: Marked by recurrent, unpredictable, and severe panic attacks.
Specific Phobia: Defined by an intense and irrational fear of specific everyday objects or situations, such as spiders, blood, or injections.
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Fear of Hypoglycaemia is an intense and specific fear related to the risk and occurrence of low blood glucose, hypoglycaemia (30). Hypoglycaemia, a common side effect of glucose-lowering medications such as insulin, occurs when there is an excess of medication relative to available blood glucose (30). If not detected and managed promptly, glucose levels can continue to decline, leading to severe hypoglycaemia.
People with T1D often experience significant anxiety about hypoglycaemia. This may include losing consciousness in public, sustaining injuries, experiencing embarrassment, and, in extreme cases, the rare possibility of sudden death.
Higher fear of hypoglycaemia is associated with lower quality of life, impaired wellbeing and psychological distress (31). This may result in compensatory behaviours to prevent future hypoglycaemia episodes, including insufficient insulin dosing, increased snacking, and reduced engagement in diabetes management (31).