This leaflet is provided by Diabetes UK, the leading charity that cares for, connects with and campaigns on behalf of every person affected by, or at risk of diabetes.
On the face of it, caring for diabetes should be straightforward - take medication, eat a healthy diet, and exercise. However, those living with diabetes know the real story - it is incredibly demanding - practically, physically, and emotionally. Whilst we know that living with any of the long-term conditions puts an individual at greater risk of developing low mood and depression, those with diabetes have an additional risk of experiencing diabetes 'burnout'. Also called 'diabetes distress', burnout is a distinct yet related issue.
Diabetes burnout occurs when a person (with type 1 or 2), feels 'overwhelmed by diabetes and the frustrating burden of diabetes self-care'. Symptoms of burnout include:
- Feeling overwhelmed and defeated by diabetes.
- Feeling angry about diabetes, frustrated by the self-care regime and/or having strong negative feelings about diabetes.
- Feeling that diabetes is controlling your life.
- Worrying about not taking care of diabetes well enough, yet unable to make a change.
- Avoiding diabetes-related tasks that might give feedback about the consequences of poor control.
- Experiencing caregivers and health professionals as unable to truly understand.
- Feeling alone and isolated with diabetes.
Diabetes burnout is different from depression. Burnout is a rational response to the demands of living with a long-term illness. It is not a 'disorder', but rather, quite a natural response. Whilst depression leads a person to have negative thoughts about themselves, others and hopelessness about the future; burnout centres on feelings focused specifically on diabetes, and the person may not seem particularly low to the outside observer.
People who have been managing their diabetes for long periods are more prone to burnout, and it can happen at any age. It is likely to happen for many reasons:
- For some, it may be a natural reaction to caring for diabetes for a long time.
- It may coincide with a particularly demanding life period - eg, relationship difficulties, family stress, bereavement etc. When these events happen, diabetes may quite naturally be perceived as the least important of all the competing demands of life.
- It may occur when someone else who they know with diabetes dies, leading to thoughts like, "If they had diabetes and died, what's the point in trying?".
- Receiving the news of a complication, while for some people can lead to a renewed motivation for self-care, for others can lead to a hopelessness.
Burnout results in being less likely to engage in self-care tasks, therefore blood glucose control is likely to be affected. Avoidance of health appointments is common, due to a reluctance to be observed or monitored.
Health care professionals do not always recognise burnout and this may be for a number of reasons:
- Diabetes distress is a relatively 'new' concept so not all clinicians are aware of it.
- Diabetes is managed medically, and when conversations focus solely on the biomedical outcomes, talking about emotions can be challenging. It takes trust in a clinician to be able to talk openly.
- Appointments are time limited and you both may avoid talking about psychological outcomes, as there is a perception that there is no time.
- Clinicians vary in their perception of their confidence/skill to support people with emotional issues.
Burnout can respond very well to support from a psychologist or an appropriately trained clinician. There are also many self-help actions that can be taken, both to overcome and reduce your likelihood of experiencing burnout.
Ways to avoid diabetes burnout
- Give yourself permission to feel 'negative' emotions like frustration and anger towards diabetes - they are a healthy response to its demands.
- Look after yourself when you are going through a stressful life event. Diabetes control may need to be deprioritised for a time, until life has returned to 'normal'. Consider what is the minimum you need to do to care for your health.
- Strive for balance in your life - your diabetes health is important, but so are your social relationships, rest and play. Try to give time to each.
- Aim for realistic goals rather than perfectionistic standards. Being kind to yourself helps.
- Think of one self-care task you are avoiding that you could do today, and congratulate or reward yourself for doing it.
- Talk to your diabetes professional. If you are unsure if they will understand, show them this article. Talking therapies can help. Ask your doctor about a referral.
- Talking about your experiences of diabetes to others who understand can help. Contact Diabetes UK Careline on 0345 123 2399, Monday to Friday, 9am-7pm.
- Diabetes UK 'Diabetes and Mood' Information Prescription
- Diabetes UK Careline
- Diabetes UK Peer Support
- William Polonsky 'Diabetes Burnout' (1999) American Diabetes Association
- Jen Nash, 'Diabetes and Wellbeing' (2014) Wiley Blackwell, West Sussex.
- Jen Nash, 'When Diabetes Gets You Down' (2015)
Content used with permission from the Diabetes UK - Emotional Issues. Copyright for this leaflet is with Diabetes UK.