I spent some time with some fellow T1 folks last week during a focus group for a diabetes product. It’s always fun to be with fellow ‘betics, even if you’re a bunch of total strangers being asked bizarre questions like “If your diabetes starred in a movie, what genre of movie would it be?” (Seriously that was a question. I chose romantic comedy. Why? Because that question makes no sense so neither did my answer).
There was a woman in the group who shared her diabetes story with us, and it was truly heartbreaking. She was diagnosed in her early 20s with Type 1, and her parents and extended family not only don’t understand diabetes, they don’t accept it. They chastize her for seizure-inducing lows, tell her she’s not taking care of herself, that she eats the wrong things, and must clearly be screwing up her medications if she’s having so many problems. In reality she is an intelligent woman who is well-versed in carb-counting and insulin titration, and wears a CGM when she can afford it because she suffers from severe hypoglycemia unawareness. My heart just broke for her, because even the most understanding of loved ones can have a hard time wrapping their brain around this crazy disease. Then to be told it’s all your fault and shunned from the family because of it is just the worst kind of ignorance.
Then the topic changed a bit, and the woman changed her tone as well. She said she couldn’t stand the fact that “all these Type 2s who weigh 350 pounds and sit around in a motorized wheelchair because they’re lazy” take away from her disease and the fact that she has very different needs. Specicially, her point was around insurance companies not understanding that she needed 10 test strips a day because she was a Type 1, and that she felt her needs were confused “these lazy Type 2s.”
Um. Yikes. The moderator of the program quickly shut her down, saying there’s a lot of reasons contributing to all that and that was a different discussion for a different day. You can say that again. I just sat there and looked at the woman, wondering how someone who had been so deeply discriminated against for her disease could be so deeply biased and marginalizing to another group of people. If there’s one thing I’ve learned from years of people making assumptions about diabetes, it’s that those assumptions never feel good, and it’s better to admit you don’t know about something and ask questions (if appropriate) then assume you know everything about anything.
Because I sure don’t. The experience was a good reminder that we all have to watch the way we phrase things. And all of us Type 1s need to remember that no one wants any type of diabetes – 1 or 2. They all suck. Type 2 is an incredibly complex disease involving more than a dozen hormones, centrally mediated brain signals, our environment and our genes. It’s not as simple as workout more = no diabetes.
I think the only universal principle that can be applied to diabetes or any disease you don’t have is this: seek first to understand.