If you are a parent of a child, teen, or young adult with Type 1 diabetes, you have likely found yourself in one of the following situations:
• It is late at night, and you realize you forgot to call for a refill on your child’s insulin prescription. The pharmacy is closed, and you need the refill tonight.
• Yesterday, your child’s blood glucose level was 140 mg/dl before lunch. You gave him his insulin, and he ate his meal. Three hours later his blood glucose level was 130 mg/dl. Today, he had the same blood glucose before lunch, took the same amount of insulin, and ate the same meal, but his blood glucose afterward was 320 mg/dl.
• Your child had low blood glucose readings all evening long, so you checked his blood glucose every hour throughout the night. You napped a little bit between checks, but at most slept two hours. Now it’s morning, and you’re facing a full day.
In any of these situations, it would be normal to feel panicked, confused, frustrated, or completely worn out. Thoughts running through your mind might include, “Diabetes is wearing me out,” “This shouldn’t be this hard,” or “I feel like I do the same thing over and over again, but we’re not getting anywhere.” If you have said these things or felt these feelings, those are good signs that you are experiencing diabetes burnout.
At the core of diabetes burnout is a feeling of doing the same thing over and over again and being frustrated that it is not producing the desired outcome. When a person has diabetes, there are a lot of “things” that must be repeated over and over again, such as checking blood glucose levels, administering insulin, and coordinating the timing of insulin with food and physical activity. Most of these tasks are carried out for the desired outcomes of maintaining near-normal blood glucose levels, preventing hypoglycemia, and preserving long-term health.
However, if the desired outcomes are not reached or seem out of reach, having to constantly and repeatedly perform diabetes management tasks can feel more and more burdensome and eventually lead to burnout. When parents experience diabetes burnout, it not only makes it harder to find the energy to do all they need to do for their child’s diabetes management, but it may also generate poor communication patterns, conflict about diabetes, and feelings of depression.
The fact that parents of kids with diabetes experience burnout is perhaps not a surprise. Although ultimately rewarding, raising a child can be exhausting, all-consuming, and just generally hard. Pair all of that with managing your child’s diabetes, and it can sometimes feel overwhelming. We have heard from parents that “parenting a child with diabetes is like having two full-time day jobs plus pulling the graveyard shift!”
Many parents feel burned out, but diabetes burnout is not a personality trait, or something that sticks around forever. It is an emotional state: something that you will sometimes experience and at other times be free of. There will be times when you feel completely burned out, and other times when you feel on top of all the things diabetes requires. The key is knowing the signs of burnout so you can keep the state of diabetes burnout as short as possible.
Each parent–child relationship is unique, and some parents may notice only one of the signs described here, while others may notice them all. However, the more warning signs you are feeling, the more likely you are experiencing or nearing diabetes burnout, and the more you would benefit from bringing up these feelings with a family member, friend, partner, or health-care professional. While there may be other signs of diabetes burnout besides those listed here, the following are some of the common ones:
• Aspects of diabetes management are slipping through the cracks.
• You feel isolated or have trouble getting the support you need.
• You are experiencing a lot of guilt or feeling blamed.
• You are annoyed that your child’s diabetes management is not perfect.
Management is slipping. Most parents experiencing diabetes burnout begin to notice that the pieces of the routine that normally happen are slowly deteriorating. Perhaps you flip back through your logbooks, whether paper or electronic, and realize you have missed logging a couple of meals or even days — and you cannot come up with any good reason they are missing. Or maybe you start to guess at the number of grams of carbohydrate instead of reading package labels or weighing foods you would normally weigh. This is very much out of the norm for you. Or perhaps you notice a pattern of forgetting to refill prescriptions in advance.
All of these things will happen on occasion, and as isolated events, they are not too worrisome. However, if you start to notice that things like this are becoming common occurrences, it may be time to consider diabetes burnout.
Isolation and lack of support. Another common sign of diabetes burnout that parents can feel is isolation. Does this story from a mother of an 8-year-old with Type 1 diabetes sound familiar? This mother said she felt that she was the only one in the family who was responsible for her daughter’s diabetes. “Everyone takes turns walking the dog. We have a schedule of who does dishes every night. We all have to work or go to school. But I’m the only one waking up three times a night to check if she’s low; I’m the only one looking at what she eats. And when things aren’t going well, I’m the one who gets blamed!”
There are two things of note in her statement. First, she feels alone in taking care of her daughter’s diabetes. When you feel alone and unsupported, you are much more likely to become overwhelmed. As a parent of a child with diabetes, you know that these things have to get done and will, but this mother also knew that she could help her daughter even more if she had some help for herself. We are all better helpers to others when we feel supported, appreciated, and not overwhelmed. Second, she ends by saying that she is also feeling unfairly blamed.
Guilt and blame. Guilt and blame are complex and have many layers as they relate to diabetes care and burnout. As a parent, you may feel tired of managing all the components of care. The mother described earlier started to feel overwhelmed, could not entirely keep up, and then starting feeling guilty that her child’s diabetes outcomes were not as great as she would have liked. She also felt blamed for not doing a better job. It is a vicious cycle.
If you attempt to counter your feelings by telling yourself you shouldn’t complain because your child can never get a break from diabetes either, you may feel even worse. That’s why it’s better to talk about these frustrations, feelings of being overwhelmed, and particularly any guilt you are feeling. Guilt and blame will not help you or your child, so it is critical to find ways to overcome these feelings.
Perfectionism. Something else that fosters the development of diabetes burnout, and consequently serves as a sign that burnout is on the horizon, is when parents have to have perfection. This usually plays out by aiming for blood glucose levels that are always in a very tight range, and constantly searching for the reasons for “bad” blood glucose levels. Don’t get us wrong: We are advocates of intensive diabetes management and help families find ways to carry out the behaviors needed to achieve the safest and healthiest control of diabetes possible. However, aiming for perfection typically leads to frustration, disappointment, and ultimately diabetes burnout.
The problem with aiming for perfection is that so many things go into achieving optimal control, and you can’t control all of them. Diabetes management is not always predictable. The cause for a high blood glucose level today may not be the same cause of the high blood glucose level tomorrow. When you set out to have all perfect blood glucose levels or that perfect A1C level, you can set yourself up for feeling like a failure. Anything that falls short of perfect, even if it is the best you and your family can do at that time, may cause guilt and blame and diabetes burnout.
Now that you know the signs of diabetes burnout, the next step is to get help battling it. The following are three strategies that will help:
Stop black-and-white thinking. If you set up a system where aspects of diabetes management, such as checking blood glucose levels and eating, are done in either a good way or a bad way, you have fallen into black-and-white thinking. Having this kind of thinking will lead you to constantly feel that you are not doing enough, that you have to work harder, and that you may not ever achieve your goal. If you do not achieve “good,” you have failed.
Instead of thinking this way, give yourself a reality check (and a break), and recognize the effort you and your child are making to manage your child’s diabetes. Focus on the effort, not just the outcome.
Then try not to use the words “good” and “bad” when referring to blood glucose levels; instead, refer to them as “high,” “low,” or “in-range.”
Apply this type of thinking to food choices, too: Your child eating a food that is not the healthiest food option does not automatically turn a meal from good to bad.
Being held captive by black-and-white thinking is sure to foster and sustain parental diabetes burnout. Fight the urge to engage in that way of thinking.
Treat blood glucose levels as data. A great deal of diabetes burnout is related to blood glucose monitoring. The problem can be that monitoring is not done when it should be, that the numbers are too high too much of the time, or that you suspect there was a way to prevent the low or high level that just happened. And certainly, burnout is driven by thinking of blood glucose levels as good or bad. As noted before, this is the trap of black-and-white thinking.
But there is another problem here: “Good” and “bad” have emotions attached to them, and as parents, you often react more to the emotion than to the number. You have to be able to look at a blood glucose level of 350 mg/dl and say, “This is higher than we’d like, so let’s figure out what to do to fix it and then focus on trying to prevent it from happening again.”
Screaming, criticizing, or being angry will not make that blood glucose level go down any quicker. Treat it as a piece of information, do not emotionally react to it, and solve the problem with the diabetes knowledge and skills you have.
Get the support you need. You will feel better, you will be better at managing your child’s diabetes, and you will spend more time enjoying your family if you find ways to get support. This should involve diabetes-specific supports and supports in general. For example, you might call a friend to help with child care on the weekends, arrange a visit to the grandparents for the kids, or treat yourself to a special mini-break like an afternoon movie, a massage, a yoga class, or simply having quiet time to yourself.
In addition, talk to others about your frustrations as well as the joys you feel about being a parent. You will immediately find out that others are in the same boat and feel similarly. Remember that feelings of guilt and the subsequent blame you assign are not helpful; they can lead to feelings of resentment or of wanting to give up, neither of which helps you care for your child with diabetes.
As a parent of a child with diabetes — whether that child is 8, 15, or 22 — you are critical to the success and health of your child. You have a hard job, one that may feel thankless at times. But take a moment to pat yourself on the back for all the hard work you do and have done so far.
Then use the strategies listed here to help you perform better in that job by keeping diabetes burnout in check. By adjusting the ways you think about diabetes management, setting realistic expectations, and getting the support you need, you and your child can achieve success with diabetes and its management.
If you feel you need extra support, seeking out a psychologist or other professional counselor is always an option. This area of psychology is usually referred to as behavioral medicine and/or pediatric health psychology. There are a number of ways to get connected to a behavioral medicine specialist. One is to ask your child’s pediatrician or endocrinologist for a referral; his office may maintain a list of therapists they refer to, either within the clinic or outside the clinic. Another is to check whether your health insurance company can give you a list of behavioral medicine providers in your area. You can also search for therapists who work with children on such websites as www.goodtherapy.org, www.psychologytoday.com, or http://locator.apa.org. (For more burnout resources, click here.)
Finally, keep up the hard work, and feel confident that you are doing your best and making a positive difference in your child’s life with diabetes.
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