Dealing with Diabetes Distress
What is Diabetes Distress?
Diabetes can be a difficult and demanding disease. The daily ongoing demands of managing type 1 diabetes (T1D) as well as any diabetes emergencies, development of complications, health issues, or even changes in your treatment plan like changing insulins or starting a new continuous glucose monitor (CGM), can add to the emotional burden of diabetes. This emotional burden of having diabetes and managing it often leads to significant diabetes distress.
Diabetes distress is defined as a range of emotional responses to living with and managing diabetes. Symptoms can include feeling overwhelmed with the burden of managing diabetes; fear and worries about complications and/or them progressing or having a severe low; feeling defeated, discouraged, and maybe burned out when you are not meeting your blood sugar goals despite your best efforts to manage them. Experiencing diabetes distress is a normal reaction to living diabetes – a common problem that affects one-third to nearly one-half of adults and adolescents with diabetes. Diabetes distress can not only affect the person living with diabetes, but also many family members including parents and partners experience it.
Diabetes Distress or Depression?
There are no vacations or breaks from type 1 diabetes and managing it can become hard and frustrating, especially when the results are not what you would like. Studies have shown that a majority of people living with diabetes experience worries, fears and negative feelings, which can lead to diabetes distress. Diabetes distress differs from major depressive disorder in many ways, but the two conditions often overlap and share some similar symptoms. Because of the similarities, diabetes distress can be misdiagnosed as depression, which can lead to individuals receiving the wrong treatment for it. This misdiagnosis is also due, in part, to the similarity of common depressive symptoms with symptoms related to high A1cs like fatigue, weight loss, and issues with sleeping.
Compared with major depressive disorder, diabetes distress:
- Is diagnosed in people with diabetes
- Is not considered to be a psychiatric disorder
- Is far more common than depression
- Shares some similar symptoms but does not meet the criteria for major depressive disorder
- Is unlikely to respond to medications like depression does
- Is often directly linked to poor glycemic management and poor self-care (even at low levels of distress)
Dealing with Diabetes Distress
It is important to learn how to cope with your feeling of distress, worry, and burn out and/or get some help from your health care team. Here are some tips:
- Acknowledge your feelings. It is normal to have feelings- sometimes they are positive and sometimes they are negative. Almost everyone with diabetes has felt frustrated or stressed from time to time about it. But when feelings get overwhelming and last more than a week or two, it may signal that you need help to deal with your diabetes so that you can feel better.
- Talk with your diabetes care team. Getting help from your diabetes health care team (doctor, nurse, diabetes educator, psychologist, or social worker) is important to treating diabetes distress. This is important because the condition can continue for a long time, making you feel bad, and get worse over time. Your diabetes health care team can help you by assessing your diabetes distress and develop a management plan to address some challenges you are having. They may also refer you to a another health care provider that can help you with your diabetes distress – this could be to problem problem-solve insurance and cost of medication, getting additional diabetes education, and/or to talk with a mental health provider who can help you cope with your feelings of diabetes distress.
- Get support. Talk with your family and friends and tell them how you have been feeling. Be honest about your feelings and tell your loved ones how they could help you (most people don’t know what they can do – and maybe you just want someone to listen to you vent). If you feel uncomfortable talking to family or friends, you may want to join a support group at your local hospital or search the online community for support. Sometimes talking to other people with type 1 diabetes who understand what you are going through can help and offer a different type of support than friends and family. People with diabetes who get support do better- both in managing their diabetes and how they feel and their quality of life.
- Set realistic expectations for yourself. There is a lot to do to manage your diabetes which can be overwhelming. Taking one thing at a time, in small doable steps, can lead to big improvements. No one can do everything at once Set small goals for yourself like “check my blood sugar 4 times today” and then once you are doing that set another small goal like, “walk 10 minutes a day two times a week.” Once you achieve one goal, add another small goal or increase the frequency of your goal. Your diabetes treatment team can help you set these goals.
- Take time to do things you enjoy and reward yourself. Give yourself a reward when you meet your goals. This should be something you enjoy — watching a movie, hiking, playing a game, or spending time with friends (it does not need to cost money). It is important each day to spend time doing something you enjoy and having some “me” time as well as rewarding yourself for meeting your diabetes goals.
Tips for Living Well with Diabetes
Realistic expectations and practical strategies are key to managing the emotional side of diabetes. Remember we aren’t “controlling” diabetes, we are managing it the best we can. And, if we could “control” diabetes…we wouldn’t have a problem! We are not a pancreas so our management of diabetes won’t be perfect – we are doing the best we can!
One thing that can help is to change the way you think about your blood sugar. Rather than getting angry or upset, look at your blood glucose results as information to help you decide what to do next. Don’t spend time punishing yourself over a high number. Use what you know to plan ahead and make positive adjustments and figure out what to do in the future. Using words like “high” and “low” when referring to your blood glucose instead of “good” and “bad” can help.
How to Ask for Support
If things are not going well with your type 1 diabetes, ask for support. If your diabetes management is off track, then there are likely other problems getting in the way. These problems may be related to your type 1 diabetes, such as a need for a management change, or they might be unrelated to your disease, such as depression or issues at work. Ultimately, you need to give yourself a break to identify and tackle the problems and get support. Talking to other people who understand is very important. And always remember, JDRF is here to help with its personal support.