Let me kick this off by saying: Type 1 isn’t normal. My 32-year-old friend with T1D has kidney disease because of years of living with diabulimia. My 46-year-old friend, who had to ration his insulin in his 20s because he couldn’t afford it, is now going blind. My 38-year-old friend has her mom sleep in the same bed with her if her husband is away on a business trip. Why? Because she doesn’t wake up from severe hypos that have almost killed her. And she wears a CGM.
I’m going to repeat, this disease isn’t “normal.” When we’re diagnosed, and we are shocked, exhausted, and most of all scared, we’re often told: “You can lead a normal life if you keep yourself healthy.” It’s only reinforced by the images beamed into our living rooms of Shiny, Happy People thriving with diabetes because they’re using the products advertised. It’s more like the other REM song: “Everybody Hurts.”
But the reality is (or can be) much different. Having a sweaty disorienting hypo at 3 AM — and bruising my head on my nightstand looking for sugar — isn’t normal. Being hospitalized with DKA because an insulin pump failed isn’t normal. I don’t need to give you a laundry list of why this disease is hard, impossible at times.
What upset me today was reading yet another well-meaning story of a PWD saying: “This disease has never stopped me from doing anything.” You are a fortunate person, I think to myself, and I wonder how long you’ve lived with T1D. Then it strikes me: The more we normalize this disease, the less likely it will be cured. Or at least cured in a hurry. Who wants to cure a disease that on the outside looks so manageable, even healthy? Who wants to cure a disease where a baseline of “normal” can be reached?
I am not discounting the thousands of researchers who are dedicating their lives to curing this disease. After all, we’re making a film about their efforts. Nor am I discounting the hundreds of thousands of people who speak out, walk, bike, run and host fundraising events. I am speaking to us… the people who have T1D. Even if the disease is easy to manage for you, think of the others who aren’t doing so well. There are people behind those scary T1D stats. And they are suffering. And they need to be heard.
We can unify our voices, and be stronger for it. Let’s change the ambivalent messaging around this disease, and get it cured..Now.