December 22, 2004
Behavior, Daily Care
Question from Idaho, USA:
My daughter has had type 1 diabetes for nearly 6 years. She is 16 and a highly motivated honor student. She gets straight As and takes a lot of Advanced Placement and honors courses. She goes through phases where she just doesn’t take care of her diabetes and is very angry when found out.
At 16, I believe she needs to be independent in her care; she doesn’t want us involved except, of course, to keep her insulin and test strips supplies up to date. We try to stay on the sideline as supportive, but not controlling, parents. Her A1c bounces between 7 and 9. Certainly 7 is acceptable, but the 8 to 9’s I view as denial. I am struggling to help her find a reason and motivation to take care of herself. Do you have any suggestions on books or strategy? I am afraid. The kids who had type 1 diabetes when I was a kid all died very young, blind and with kidney disease. The technology is so terrific today she doesn’t need to face those same complications. We’ve worked with counselors, but she hates to go. Clearly, we have not found the person who can her find her stride and acceptance of the necessary routine she needs to adopt.
Diabetes has never been a “do it yourself” disease, and I don’t see any new technology or approaches that will make is a “do it yourself” disease any time in the near future. Not even adults living with diabetes who are doing well, are motivated, and are happy can do so without some support from people who love them. So, the concept of being “independent” with diabetes is not realistic for anyone who hopes to maintain motivation and enthusiasm for a chronic disease that never goes away and from which you can never take a vacation. The challenge for those who live with older teenagers and young adults with diabetes is finding ways to give the support needed without having your loved one feel like they are a failure, or incompetent or that they are not being responsible enough.
I strongly recommend you sit down with your daughter and work together to decide what things you can do that would be helpful to her and supportive of her. Be sure that she knows you are not being critical, but that, instead, you recognize how difficult it is to live with a disease that never takes a break. Give her praise for the times when she is able to do everything she’s asked to do with respect to her diabetes care and ask her to tell you how she is able to manage those days so very well. Where does she draw her enthusiasm and strength to make those days work so well? Ask her what the most difficult aspects of living with diabetes are. Listen to her responses carefully, as they may not be what you expect. Ask her what kinds of things make the difficult days so difficult, and then ask her what she thinks you may be able to do to help her get through those difficult days.
The key is to develop a partnership with your daughter such that she lets you know what tasks she needs you to do for her when she’s having a more difficult time with the diabetes regimen. Talking about long-term complications will only frighten her, not motivate her. That might also prevent her from asking you for help if she expects a lecture from you about what she “should” be doing.
You both might benefit from reading the book Diabetes Burnout by William Polonsky, that is published by the ADA.
Good luck in working with your daughter to develop a new way of working together as a team to help care for her diabetes. The fact that she has managed to obtain A1c’s in the 7’s as a teenager is remarkable, and an accomplishment that you both should be proud of.