This post is the second installment in the really cool, really wide-reaching DBlog week. The prompt was: write a letter. To your disease, to your endo, to someone. Since it’s not my disease, I’m writing it from the parent’s POV.
Dear Endo Teams far and wide:
First of all, thank you for choosing this career path. I know it’s not easy. We are a needy (for good reason) patient base. We need you all hours of the day and night and need you through many transitions and changes. I know you don’t make a fortune the way some other medical professionals do, so thank you for caring enough to choose this field.
With that, an idea and a request: How about creating a new type of diabetes center or area of expertise: transitional diabetes? I’d love to see entire practices, or at least divisions of practices, completely dedicated to, say, PWD from 15 to 23 or so. The endos, CDEs, social workers and nutritionists would all be focused entirely on the challenges of this time in life, and would work to help PWD and their families through these years.
Because for the most part, we have that for itty-bitties with diabetes (and gosh, there really is no time a family can need personalized support more than then). We have that for women pursuing and going through pregnancy (and gosh, there really is not time a PWD and her family can need personalized support more than then). We need it for this “transitional period” too because . . . yeah: there really is no time a PWD and their family can need personalized support more than then.
We had wonderful, wonderful professional support through my daughter’s first decade with diabetes. We are lucky enough to live pretty close to some top choices in diabetes centers in the world (at least in my opinion, tee hee) and settled into one right off the bat, staying with them for years and years. They helped us be a rock star patient family. But as the teen years came, so did the struggles. I wrote about it here and as you can see by the many comments after, our experience was not unique. We also noticed in that time that while our team did their best and truly cared, the issues that face a teen with diabetes and the crazy psychology around teens in general were not something a lot of practices had a firm grasp on.
Finally, my daughter decided she wanted to move to an adult endo. She said she was feeling weird about the toys in the waiting room and the little kids all around her (which made me visualize Ross of “Friends” in the waiting room at his pedi when he was 30 years old; she had a point I guess). I’ll admit it: I was sad. I wanted to hold onto those early years when our team knew just what to do and it worked well. I wanted to hold onto a child I could call the shots with too (but reality strikes: Kids grow up. And even the best intentioned kids can struggle with D at this age). We found a world-respected adult endo who had room for her and it’s gone well with him. She has lowered her a1c remarkably and is doing well with self-care in college. Victory. But I have to think: a transition to that would have been nice.
What if you can find a way to kind of “nationalize” the concept of focused care for this transitional period in a person’s life? There must be some practices out there that have figured it out. If you can help teens and their families navigate it better, won’t you be bettering chances for less complications down the road? And won’t you simply be making this all easier to take?
Not an easy task. We ask so much of you all, and here I am asking more. But needy we are. I’d love to see better resources; more focused care and an overall better few years for other families than it was for ours.
Mom of a Young Woman With Diabetes