I enrolled in the T1D Exchange Clinic Registry a while back. I haven't been asked to do much for it aside from filling out a little packet and agreeing to become part of the program. Until this week, when I got an emailed survey.
A survey? That could potentially help patients with Type 1 diabetes? I'm in.
Except, hoo boy, were some of the questions doozies.
Um. I don't think my diabetes is placing a burden on my family. I mean, sure, it's a pain in the ass. But so is L's sleep schedule and I don't consider that a "burden" - I consider that life with an eight-month-old baby. Similarly, my diabetes is time-consuming, it takes a toll on my body, it's a helluva lot of work and stress...but it's not a burden on my family. I was offended that there was no "I don't think my diabetes is a burden on my family" option in the multiple choice.
And then there was this gem:
Eat something I shouldn't? Whatchoo talkin' 'bout? As long as I eat healthy food in moderation - like EVERYONE IN AMERICA should be doing - I can eat whatever I want, as long as account for it with an insulin bolus. The days of food exchanges and NPH peaks are well over for yours truly. Speaking of which....
An eating plan? I thought that died with the food exchange system. Have these people never heard of carb counting or Humalog?
And don't get me started on the mental and relationship health questions - no, survey people, I do not often consider divorcing my partner. (First question in that section, I kid you not.)
On the whole, I'm thrilled to help out and I can only hope my clicking helps someone somewhere kick this disease to the curb. (Or, heck, even just help some fellow PWD avoid complications or feel better on a day to day basis. I'm not greedy.) But the questions on the survey make me wonder who wrote the thing - it's part of a program affiliated with some of the top diabetes centers in the country. You'd think they'd have had some input over the language used.