Every World Diabetes Day, November 14, I can’t help but reflect on both my relative good fortune in living with this chronic illness, and the tremendous toll it takes on me and people like me on a daily basis. It’s a curious mixture of humbling gratitude, especially for my terrific support network, and blinding frustration. It’s simultaneously wanting to set the perfect table for everyone, and wanting to flip that table.
Life with diabetes is a constant string of “it’s better than it was, but it’s still not good enough.” And for some people, it’s worse than it was - I remind you again that insulin prices in the US have risen more than 1200% since the 1990s, and many people have died trying to ration a life-saving drug with an original patent that was sold for $1 because the scientist refused to profit off it. Many people in many countries do not have insulin access at all. Insulin isn’t free in Canada, where I live, either. I am fortunate enough to have insurance. It’s still not good enough.
This year, for the first time, I have a continuous glucose monitor that gives a ton of information on a minute-by-minute basis, and sometimes helps me make decisions. It’s a marvel. But it’s not a cure, and information overload is a thing; I had to turn some notifications off entirely because I once received over 100 notifications in a single day, shattering my concentration every three minutes over something that only time and patience were going to fix. It’s better than it was.
Diabetes is all about numbers. The price of insulin, other medication, and technology. Calculations, made constantly, every day. Lows. Highs. The moral value of compliance endocrinologists attach to the number on a 3-month A1C test, as if it tells the whole story. The over 40 different factors that go into what affects blood glucose levels. Weight (hard to lose, unless you aren’t taking enough insulin, and then people will compliment your appearance even if it’s caused by your body ceasing to function).
The redundant boxes of supplies you drag on a trip out of fear something will go wrong. The number of times something does go wrong, and you have no redundant supplies, and you have to MacGuyver your way out of danger with a syringe and a paper clip. The pounds of plastic garbage you generate every month due to all the one-use technology (another number) and its packaging, and the weight of the guilt you feel.
The several deep breaths you take before responding to a nurse who asks you if you’ve ever had a blood sugar out of range in the past six months, or asks what your blood sugar is right now, like that’s some sort of unique revelation. (My blood sugar is tested 288 times a day.)
The hours of self-advocacy you have to do just to combat the incredible amount of misinformation out there, or even just to stop people without diabetes from making “diabeetus” jokes to your face. The number of times someone tries, in a really well-meaning way, to use diabetes as a contrast to advocate for another illness (“nobody would deny someone with diabetes insulin, or tell them it’s their fault”), and you agree with their advocacy, but you want to yell because people with diabetes are denied medication ALL THE TIME and told the condition is their fault.
The number of productive hours you lose to highs and lows. The number of times you dust yourself off and start again.
It’s still not good enough.
It’s better than it was. It’s better than it was.
It’s better than it was 101 years ago, when the only cure was starving to death before diabetes got you first. It’s better than when people had to boil their own urine. It’s better than when an insulin pump was a machine the size of a backpack, before we had synthetic, rapid-acting insulin, back when it took a whole minute to get a glucose reading, when my carb count book had two whole pages on some very basic packaged “ethnic food,” and for everything else of any interest, you were on your own.
It’s better than it was before an alarm would wake you up and not let you sleep through a dangerous low that might be your last. It’s better than it was, now that there are systems and checks and technologies and insulin resistance-lowering medications, and now that it’s an illness almost invisible to everyone around you, and now that a Jonas brother is on television constantly telling you that you can Live! Your! Dream! with the Dexcom G6.
I am, I guess. Living my dream with the Dexcom G6.
And I feel absolutely churlish and unsporting when I say: It’s still not good enough.
Even for me, who has insurance, a great job, a devoted spouse, amazing friends and family, and access to most things. It’s still not good enough.
It’s World Diabetes Day. I have Type One diabetes. And I am in a better position than most people with diabetes, and it’s still not good enough.
Thank you so much for taking the time to read this, if you did. It means a lot to me. Consider supporting organizations like T1 International, if you’re able, to help advocate for those with less access to technology, medication, and support.
It’s not good enough, but we can make it better.
And even if diabetes isn’t good enough, well…I can be. Good enough.
Both today, World Diabetes Day, and every other day.
