"In the face of a complex, demanding, and often confusing set of self-care directives, patients may become frustrated, angry, overwhelmed, and/or discouraged. Diabetes-related conflict with loved ones may develop, and relationships with healthcare providers may become strained. The risk of depression is elevated. As a result, motivation for self-care may be impaired."
Diabetes distress and burnout
“Diabetes distress is what some people feel when they’re overwhelmed by the relentlessness of diabetes. This can lead to diabetes burnout.” Consequently, you as the caregiver can experience this, as well.
Your loved one having diabetes, rather than diabetes having them, involves great effort on their part every day, every week, every month, every year, year after year. They may reach a point where they are exhausted, frustrated, or even angry because, despite their best efforts, they may not see the results they want - or more accurately, that is expected of them - and may develop health problems related to diabetes despite their hard work. This upset is diabetes distress.
When distress persists for long enough, your loved one may slip into unhealthy habits, even after years of good management. This is diabetes burnout.
Signs your loved one may be experiencing diabetes burnout:
Persistent anger over having to manage diabetes
Constant worry about diabetes self-care but no motivation to make changes
Stopping blood sugar checks
Frequent unhealthy food choices
Repeatedly expressing feelings of being alone in their diabetes (no one is like them, no one understands them, no one has as much trouble as they do)
Not the same as depression
Diabetes distress and burnout are different from each other, and both are wholly separate from depression, with only a minor overlap.
That is not to suggest that depression may not also be present in your loved one, though to provide appropriate and personalized treatment, providers should make the clinical distinction between distress, burnout, and depression before planning care.
For further discussion on this topic, check out the Helpful Guide Distinguishing Diabetes Distress, Diabetes Burnout, and Depression.
What can I do to help?
Foremost, understand that the lived experience of diabetes is a very personal one. There are thoughts, feelings, and sensations occurring regularly within a person with diabetes that another person doesn't understand, even others who have diabetes. So, with that, also understand that despite your best caregiving efforts, you cannot singlehandedly prevent your loved one from developing distress and burnout. Distress and burnout are no one's fault, not yours or theirs. It happens.
If you recognize one or more signs that your loved one may be experiencing diabetes distress or burnout, there are many things you can do to help.
Remind your loved one that blood sugar levels are just a number, just a piece of data, and not a reflection of who they are or how much effort they have put into self-care. Blood sugar checks are also not a pass-fail system!
Remind them to be kind to themselves and let go of high expectations, especially those that have been thrust on them rather than embraced by them. No one has a perfect relationship with diabetes.
Remind them to take a break. Talk to qualified healthcare professionals about when and how your loved one can spend less time and energy on their diabetes. Not ignoring it completely, but being able to relax daily targets or reduce the number of blood checks sometimes.
Encourage them to talk about how they feel, whether their feelings are diabetes-related or not. Remind them that they are still a whole person and not just this condition and that they are allowed to indulge in thoughts and feelings not centered on diabetes.
Involve their healthcare team, who may have surprising suggestions and alternatives for shaking distress and recovering from burnout.
Encourage your loved one to connect to people who will get them. Support communities can seem unnecessary and even intimidating at first, though dozens of studies and surveys show that once engaged, people with diabetes not only have improved glycemic management but also find a real kinship with one another and share a lot.