“What I hate most about diabetes,” Marilyn told a support group I was speaking at, “is that it’s so much work. It takes too much of my time and concentration. It’s boring! I’m tired of it. I want some time off.”
I could relate to Marilyn’s complaint. I know I get bored with the pain, the struggling to walk, the frequent trips to the bathroom, jumpy legs, and other symptoms that come with my multiple sclerosis (MS). I get tired of having to turn down invitations because they’re too physically demanding or not accessible enough. But at least I don’t have to focus on my condition as much as people with diabetes do.
In my book The Art of Getting Well, I said all chronic conditions create similar challenges — slowing down, getting help, accepting limitations, facing death. But they also have differences — arthritis requires more patience, to put up with the pain. MS needs more flexibility, because it throws different symptoms at you all the time. Diabetes requires a tremendous amount of discipline. As Marilyn said, it’s so much work!
According to William Polonsky, PhD, CDE, diabetes self-management is like balancing a three-way teeter-totter. You have to match your food intake with your physical activity with your medicines. That balancing act is hard enough, but there’s much more, isn’t there? Care for your feet and gums, check your blood sugar regularly, see doctors way too often, etc. And reduce stress, of course!
I asked Marilyn’s group what they found boring about diabetes. There was no shortage of answers. “All the carb counting and package reading,” said a man with Type 1. “Why can’t I just sit down once and enjoy food without worrying about it?”
“Insomnia is so-o-o boring,” said a woman with Type 2. “Just lying there in bed for hours, praying for some sleep. I know I should get up and do something, but I’m tired and don’t have anything to do that won’t wake me up more.”
And so on. A number of people mentioned needle sticks. Others talked about frustration with their glucose numbers, or neuropathic pain in their feet. “I never thought of pain as boring,” said a woman named Joan. “But it’s very tiresome. Whatever else I’m doing, it’s always there. For me to forget the pain, something really good has to be going on.”
Another woman just moaned, “Fatigue…Can’t do anything…Boring.”
Joan Williams Hoover coined the term “diabetes burnout” to describe that feeling of “I just can’t take this anymore.” He says that burnout times are when self-management slips and blood sugar levels go up. So you start to feel more tired, and that feeling makes you more depressed. It’s a vicious cycle.
So I asked the support group what they usually did to deal with diabetes boredom and burnout. They had some good ideas: “see friends,” “get involved in a project,” and “play with my dog” were three of them. The diabetes educator running the group took us to a Joslin Diabetes Center’s Web page for more ideas. I hadn’t realized she could just pull the page up on her iPhone or Droid or whatever it was called, but she was able to show it to us right there at the meeting.
Joslin says: Don’t be a perfectionist: Forgive yourself for occasional glucose fluctuations. Identify barriers — make a list of obstacles in your life that are preventing you from taking good care. Then “engage in solving these problems one by one.”
Get some support: Tell people exactly what you consider to be helpful, and what isn’t helpful (such as being nagged about your diet.) Consider the positive benefits of control — not just avoiding complications, but ways you can feel and function better right now. “Make the benefits…relevant to your own hobbies and interests.”
I thought that those ideas might be helpful for avoiding burnout, but might not do much for boredom. So my question to you is, what would you advise Marilyn? What can she (and all of us) do about being bored with diabetes and with self-management? What do you do?
As this blog entry is being posted, I should be speaking to diabetes educators at the AADE meeting in Las Vegas about sex and diabetes. I’ll be reporting on the conference for the next few weeks.