Do you feel that you have been working so hard at trying to manage your diabetes, but are not getting better results and your frustration is mounting? You more than likely have diabetes burnout.
Not a sign of weakness
If your glucose readings are not improving and you start getting exasperated, this is the first subtle sign of diabetes burnout1. Diabetes is, by analogy, “a full-time job you didn’t want, and can’t quit.”
Author, Joan Williams Hoover, developed the term diabetes burnout. She says, “Few things generate burnout like the awful frustration of having followed instructions and done everything just right and still be failing to get diabetes under control. At those times, it seems no use to continue to try2.”
Diabetes burnout is not a sign of weakness, it is about being strong for too long.
How common is diabetes burnout?
A national survey in the USA showed that 21% of Type 1 diabetes and 41% of Type 2 diabetes using insulin reported that they never checked their blood glucose outside of hospital or healthcare settings due to burnout and denial3.
Recognising diabetes burnout
The more positive answers (yes) to the list of the underlying feelings you have, the greater the chance of diabetes burnout:
- Are you feeling overwhelmed and defeated by diabetes?
- Are you feeling angry about your diabetes?
- Do you feel diabetes controls your life?
- Do you feel alone and that nobody understands?
- Do you feel ashamed and keep your diabetes a secret?
- Do you worry about not taking care of your glucose levels well enough but also feel hopeless and unable to change them?
- Do you feel guilty and frightened by poor control?
- Do you feel exhausted with decreased capacity of action?
- Do you feel proper self-management is not worth the effort?
- Do you admit to chronically poor glucose control and self-care?
- Do you avoid glucose control or doctor appointments?
- Do you think about diabetes as little as possible?
Relational diabetes burnout
Diabetes burnout occurs not only in diabetic patients but also in their partners and families, especially parents with young diabetic children.
Sometimes the concept of diabetes burnout is also seen in the healthcare provider responsible for caring for these patients. They are usually people that need everything to be perfect in every situation. They also like to be absolutely certain of all circumstances. With diabetes, this is not always possible.
Preventing diabetes burnout
There are numerous ways but here are seven steps to try:
- Accept and name how you feel. “I am tired of being a diabetic.” Allow yourself to feel this way. State how you are feeling without trying to change it. Once you accept how you are feeling, you will feel better.
- Take care of yourself. Do something every day that does not involve diabetes. This will allow you to feel cared for. Do some yoga, or walk in your garden, have a cup of tea and read, or connect with a friend. Do whatever works for you.
- Practise self-compassion. Tell yourself, “Today, I am going to believe that doing my best is enough.”
- Be kind to yourself. Do not judge or be critical of yourself.
- View your diabetes as part of being human. See it as your shadow and not a full-time job.
- Live in the moment. Focus on the present. Do not think bad thoughts. Notice when your thoughts turn into worries and box them and focus on the present.
- Remind yourself that you are not the only person with diabetes. Worldwide the diabetes population in 2016 was 415 million with up to 50% still undiagnosed.
It is important to talk to your healthcare professional about these feelings.
Take a diabetes vacation
I often suggest to my patients to take a diabetes vacation. This can be anything from testing only twice a day instead of six times per day to taking a pump vacation and go back to syringes, or stop using your continuous glucose monitor (CGM) for a while. This should be well structured, safe and not too long as to be detrimental to your health. It should, however, give you some relief from the stress that can be caused by too many alarms, numbers and electronics. This method is usually highly successful. It will help you to realise what you thought was bad is very convenient.
I also suggest that you have a ‘cheat day’ once every two weeks, where you indulge in whatever food you like but give insulin accordingly. Know that small changes lead to big differences.
The question ‘why can’t we eat everything we like every day and only carb count’ usually pops up. The reason is quite simple: insulin is an anabolic hormone and will cause huge amounts of weight gain if you overindulge in carbohydrates daily.
How do people on insulin in diabetes trials stay motivated?
Probably, the best example is the Diabetes Control and Complications Trial (DCCT) that was conducted from 1982 to 1993. The trial was designed to test the glucose hypothesis of Type 1 diabetes and determine whether the complications could be prevented or delayed with glucose control.
It was a controlled clinical trial with 1441 participants with Type 1 diabetes. The investigators developed two arms in the study. In the first arm, called the intensive arm, the subjects had normal to near-normal glucose control. In the second arm, glucose control was according to conventional therapy at the time, aimed to achieve asymptomatic glucose control.
The participants in the intensive arm were recently asked how they managed to maintain near-normal blood glucose levels for this period and stay motivated. The factor that helped them the most was ‘nondirective support’. The staff worked with the participants in a friendly, respectful manner with frequent contacts, helping them to make their own decisions rather than telling them what to do3.
This is the core of good diabetes management. Teamwork is important with the diabetic in the role as captain of the ship. The role of the healthcare professional should be to supply new information and help with analysis of diabetes data. The discussion should be continuous and be positive.
The 3 R approach of diabetes burnout
- Recognise – watching out for the warning signs of burnout.
- Reverse – undo the damage by managing stress and seeking support.
- Resilience – build flexibility to stress by taking care of physical and emotional health4.
Understand that diabetes is a way of life. It is not life. Acknowledge it as part of you in the same way you would acknowledge your shadow. Follow the rules of the game as close as possible. We all make mistakes and sooner or later you’ll receive a yellow card during the game. Try and avoid it as far as possible. Recognise it as a metabolic disturbance and not a disease but also realise that it can become a disease when good glucose control and lifestyle is not followed.
If the burden seems too heavy to carry seek help. Take into consideration that the association between diabetes and depression is high. Talk to a psychologist, this may help alleviate the symptoms and lessen the burden.
Appreciate that you are unique and can do this with the help of your support team of family, friends and healthcare professionals.
- Guzman, S. ‘Tools to face the psychological demands of diabetes.’ http://www.behavioraldiabetesinstitute.org
- Polonski, W; Diabetes burnout. What to do when you can’t take it anymore.’ American diabetes Association
- Culman M, Guja C ‘Diabetes burnout –review’ Proc Rom Acad, Series B, 2016,18 (1) p25-30