I've Been There.
What would make a new diabetes diagnosis easier for people?
The question has been rattling around in my head for a couple of months now. Two events triggered it. First, a friend's 8 year old relative was diagnosed. That event brought up all kinds of memories for me, and thoughts about what it must be like for them to enter this strange new world. Also this winter, my dad was hospitalized for a very different type of issue, orthopedic in nature, but we had the familiar experience of being in a medical setting where people were speaking a language they knew well and with which we were unfamiliar; and of being in a situation in which many aspects of life changed in a heartbeat with a long adjustment to follow.
In the first few days after his hospital admission, my dad talked often about both staff and friends who had shared their experiences with his particular diagnosis. A doctor had experienced the same injury and told of his recovery. A friend said it took him at least six months to get back to normal. A therapist knew someone who had benefitted from a particular kind of treatment. There were, of course, conversations with the professionals about scan results, and medication options. There were prognosis trajectories to be understood and discharge plans to weigh. But in the end, it seemed particularly important to the patient to hear the stories of people who had been in his shoes.
We were very fortunate that my daughter was first treated for diabetes at an excellent hospital and that we were able to return there for her ongoing care with an exceptionally knowledgeable team. But what do I remember of that week and of the weeks following? I remember talking with the nurse on the unit who had diabetes and who said many reassuring things. I remember every little word of practical and emotionally encouraging wisdom from our first CDE who also happened to have diabetes. I remember being incredibly reluctant to attend a local support group and then feeling incredibly comforted once I got there.
Several years ago, an eight year old girl we love was diagnosed. The day after she returned home from the hospital, we were there. We did not bring reading materials (well maybe a Calorie King book). We did not discuss meter brands, or insulin to carb ratios. We brought a set of colorful measuring cups, Clifford juice boxes, sugar-free jello jigglers and ourselves. And we sat in their living room with them and listened. And we told them our stories. We let them know we'd been in their shoes. They could see we'd made it out of the woods.
There are few more comforting words than, "I've been there," especially when they're followed by, "and I promise it will get better." This kind of support happens sporadically, with JDRF's bags of hope and with other, more local programs, but somehow even though we were at a major hospital in a big city, we were not formally hooked up with any peer to peer support upon my daughter's diagnosis. How could that kind of reassurance become a bigger part of more people's stories?