Long before I was diagnosed with diabetes, when my only diagnoses were about the function of my brain, I used to say that people should try curing fatal things like diabetes, and leave us alone.
But now I have a diagnosis of diabetes, and I can't stand the cure rhetoric. The I've had xxxx shots and xxxxx finger pricks and xxx site changes. This does not represent me. Yes, I've had at least a thousand shots and I'll hand thousands, maybe tens of thousands more. Yes my fingers sting, yes my limbs bruise. NO this is not suffering. No, this is not what needs a cure.
We need change not because little fingers bleed, not because skin is punctured, not because we "deserve" to be normal, not because children should be children. Because guess what? You coach it right and kids are proud of blood, learning great skills from doing shots, learning about "normal". This is just disability.
We need change because diabetes is a death sentence, albeit one with two lawyers and appeals to supreme courts and a long delay from sentencing to death. We need change not for kids with diabetes but for kids who are diabetes orphans. We need social change for the teenager who's ashamed for guys to see her pump; we need a cure to deal with the teenager who's dead in bed.
To me, having to take shots is like having to eat; no big deal, though often an annoyance. Monitoring blood sugar is not particularly tragic, any more than coloring is. It is time consuming. Going hypo is a little more problematic because of getting weepy, and going hyper makes me lethargic. These are livable, nontragic annoyances, disabilities maybe.
I wear my other disabilities as a part of who I am and what has built me to where I am. Diabetes too is something I wear out and proud, as a disability.
But diabetes, unlike the rest of my disabilities, is also a disease to me, because unlike my other disabilities, which change the way in which I live my life, diabetes has the potential to end my life.
I would consider diabetes cured if shots gave me perfect blood sugar control and the complication rates were nil or close to it. I would consider diabetes cured if I could wear a pump plus CGMS that could control my blood sugar entirely, even if I had to calibrate it and do site change.
The tragedy of diabetes is in DKA, ESRD, heart attacks, dead in bed, car accidents from hypoglycemia, brain aneurysms.
Dealing with diabetes day to day is not a tragedy. Dealing with diabetic complications is.