Several years ago, I worked with a woman who was the mother of a very small child with type 1 diabetes. Her daughter had been diagnosed very young, around age 3 or 4, and this meant that managing the condition fell almost exclusively on her and her husband. Once she found out that I had type 1 diabetes, I became her “go-to” person for processing the stress, the joys, and the ups and downs of managing her child’s condition. As anyone with diabetes knows, there’s a “shorthand” language between people that understand the disease that’s simply not possible when talking to someone without any knowledge of the daily ins and outs of management. To the outside world, diabetes is usually thought of as a restriction on “eating too much sugar.” The subtleties of insulin-ratio management, blood sugar monitoring, meal planning and the like aren’t everyday knowledge.
What is type 1 diabetes?
Type 1 diabetes is an autoimmune disorder in which the immune system attacks and destroys the insulin-producing beta cells in the pancreas. As a result, the pancreas produces little or no insulin. Type 1 diabetes is also characterized by the presence of certain autoantibodies against insulin or other components of the insulin-producing system such as glutamic acid decarboxylase (GAD), tyrosine phosphatase, and/or islet cells.
When the body does not have enough insulin to use the glucose that is in the bloodstream for fuel, it begins breaking down fat reserves for energy. However, the breakdown of fat creates acidic by-products called ketones, which accumulate in the blood. If enough ketones accumulate in the blood, they can cause a potentially life-threatening chemical imbalance known as ketoacidosis.
Type 1 diabetes often develops in children, although it can occur at any age. Symptoms include unusual thirst, a need to urinate frequently, unexplained weight loss, blurry vision, and a feeling of being tired constantly. Such symptoms tend to be acute.
Diabetes is diagnosed in one of three ways – a fasting plasma glucose test, an oral glucose tolerance test, or a random plasma glucose test – all of which involve drawing blood to measure the amount of glucose in it.
One day, we were talking about diabetes burnout. It had been a particularly tough week for her and her and husband, as her daughter’s blood sugars had been all over the map. And naturally her daughter, as a very young child, had been going through reactions of her own against the interventions that her parents knew were necessary. This meant that my poor colleague was being hit twice — first by the erratic blood sugars (that we all know cause stress), and then by the fact that the emotional reactions of her daughter were coming out toward her and her husband. As she put it, she had to be the stable rock in not just one storm (her daughter’s blood sugars), but two storms (the blood sugars, and then her daughter’s emotional reactions TO them!).
Through all of this, my colleague and her husband had coined a term to describe the experience of caring for someone else with diabetes. They called themselves “type 3 diabetics.” I loved that term! It summed up what I think many parents or other people in caretaker roles must go through. As my colleague put it, having a child with diabetes is really like having it yourself! And in some ways, it was much harder, because all she could do was watch from the sideline. She had very little DIRECT control over the situation.
This isn’t an issue that goes away with age, either. I remember talking to another parent and daughter years ago. I met with them because a mutual friend recognized that both the teenage daughter who HAD diabetes and her father, who spent about 23.5 hours a day obsessively WORRYING about his daughter’s diabetes, were severely burned out. This mutual friend had seen me adjusting to life with diabetes, and thought I might be able to help these two.
I won’t go into the details of their situation, but the short story was this: The daughter’s blood sugars were all over the place. She was frustrated and didn’t know what to do. Her father was scared to death for his daughter’s safety. The result was that her father became more and more restrictive — no going out with friends if blood sugars weren’t stable, severely early curfew, extremely tight control over food intake. The daughter naturally reacted to the rules with irritation, but she was also unbelievably worried about those erratic numbers herself. Needless to say, it was a toxic situation on almost every level. We talked for a while, and I gave the best advice I could think of at the time.
People usually talk about “avoiding” burnout. I don’t know that “avoiding” caretaker burnout is possible. I don’t know that avoiding burnout as an individual WITH diabetes is possible. What is possible is minimizing and managing the feeling of burnout. And the most important factors that I have seen, which were really highlighted in the contrast between the two examples above, are education and stress management. The colleague I knew at work and her husband were VERY educated on diabetes — they understood how the disease works. They understood the unpredictable nature of it. And so while they felt burnt out by it on occasion just like anyone else would, they were still very effective caretakers even in the midst of feeling frustrated.
The father and daughter, however, were suffering from a lack of knowledge. They were both frustrated, and neither of them knew what to do or really understood the disease in depth. And so all of that frustration ended up being channeled in directions that weren’t helpful — like the overly restrictive rules that only really served to frustrate both sides and didn’t really address the issues that were causing the erratic numbers.
Diabetes is hard to live with, and it can be even harder for the person responsible for someone ELSE’S diabetes. So if you’re a caretaker feeling overwhelmed, remember to educate yourself — knowledge really is power, and can help minimize the stress. And of course, remember to use the tools you already have to relieve stress. You know the airplane safety speech — “put on your mask before helping others.” The same is true here — work on your stress first (meditate, exercise, pursue hobbies, whatever helps YOU de-stress), THEN help your loved one handle his or hers.