By Allison Blass
Anyone who has had diabetes for, oh, a day, knows how challenging it can be. Whether you are a parent, friend, or someone with diabetes like me, the disease is a never-ending source of demands, confusion, and frustration. Most people eventually feel a sense of “diabetes burnout” (a term coined by diabetes psychologist Dr. William Polonsky) from having dealt with the literal and figurative ups and downs of the disease. “The thing that contributes to being burned out the most is when people feel alone with diabetes,” says Dr. Polonsky. “Obviously they have family and friends and a doctor, but if they feel like no one gets it, then they don’t feel like anyone understands or is rooting for them.” Another burden is caused by the “expectations” and high standards of self-care that family, medical professionals or even you put on yourself. But the fact is, no one is perfect. “Sometimes people burn out because their expectations are unreasonable, and they just feel like failures,” says Dr. Polonsky. “Perfectionism traps patients, family members and health care providers in a vicious cycle of unrealistic expectations, which blames the person.” He recommends that patients work to achieve open communication and explain their feelings to the person imposing such expectations. “They need guidance from you about how to help,” he explains. “They’ll respond when you say, ‘I know you mean well, but what you do isn’t helping.'”
With all the factors to coordinate and priorities to meet, it helps to develop a reasonable diabetes management “workload.” This includes identifying specific obstacles or struggles, then sitting down with your family and healthcare team to develop a realistic action plan for achieving your goals.
Although the person with diabetes suffers the greatest burden of the disease, parents, spouses, or other caregivers can also feel burned out. Both children and parents also can suffer from the awkwardness of social situations–I have seen and experienced this often over the years. Teens end up feeling frustrated and tired because “no one understands.” Diabetes goes against everything a teen wants to be. Being a teen is about conforming with peers, looking like them, hanging around with them, and doing the same things they do. When you have to count carbohydrates, check blood sugar and take injections, it can be humiliating if you’re the only one.
Support is a great way to overcome diabetes burnout, and support groups can be found through your local clinic or JDRF chapter. If there is no support group near you, start one! Choose a central location, perhaps your JDRF chapter office or a room at the clinic. Hang fliers and ask the clinic or chapter staff to invite people.
At the meeting, you can talk about the issues that are important to you, whether it’s diabetes technology, research, or emotional issues. Make it a regular event at the same location and you will soon see your group grow as more people hear about it.
A great thing about support is that you can share information and troubleshoot with others. Asking questions is the best way to learn about diabetes. It is encouraging during challenging times to have someone who can smile, nod and say, “I know exactly what you mean.” It can give you strength when you are faced with pressure and uncertainty to know that you are not the only one.
Dr. Polonsky’s book, Diabetes Burnout: What To Do When You Can’t Take it Anymore, explains in detail how you can work to overcome burnout. Living with diabetes is challenging, but it also gives you the opportunity to find your inner strength. That strength comes from having the right resources and the right people beside you.
You are not alone.
To find additional support online: Try the Online Diabetes Support Team, TypeOneNation, Children with Diabetes, or The Diabetes OC, a new web site that lists blogs by parents and adults with diabetes.