Today's Prompt: Sensationalize. Say WHAT!? What’s the most ridiculous thing you’ve heard about health or your condition? Where did you hear it and what did you think?
There's nothing I would rather write about LESS than cure claims. They don't deserve much chatter. And they piss me off. Not to mention that I've written on this prompt before two years ago.
My community had a recent "upset" (that's a nice word for it) when one of our respected members claimed to have insider knowledge that the cure might be at hand.
Spoiler alert: It was bullshit.
Some of us who have played this game for a while knew it was going to be bullshit. We braced for the aftermath. But others didn't. People wept. Genuinely wept. And it got so unnecessarily ugly.
The "end" has been in sight for NINETY YEARS. I'm not joking. The earliest news articles about the discovery of insulin in the spring of 1923 touted that scientists had figured it out - insulin was the cure.
Then FORTY years ago, scientists figured out how to cure diabetes in mice via transplant of islet cells! So, really, in humans it would be any day now. Whew. That's a relief. We can wait 5-10 years. 15. 20. Okay, so it's like 30, 40 now, but who's counting. Off by a hair. Islet transplants are still where researchers are spending their energy. We'll have it. Just, um, I'm sure, it's probably 5, well, I mean, after FDA approval, surely at least, you have to consider red tape and all, so maybe like 10 years out.
I was diagnosed 23 years ago. My pediatric endocrinologist looked at me, a 10 year old girl in a hospital gown just coming out of a coma, and told me point blank "They've been saying a cure is 5-10 years out for many years now. Who knows - maybe they're right? But you more than likely need to learn to live with this disease for the rest of your life."
Listen folks, I won't stop you from believing. Hoping. And I desperately don't want you to stop funding research. Every bit of research gets us closer to 'functional' treatments like insulin pumps that work with continuous glucose monitors.
But when you are brand new to this game and want to chide me for giving up?
Sister, you have just found the way to press my biggest button. You had best take a step back.
I meet these women in forums for parents of type 1s where I lurk. One recently told all the other parents how she was going to cure her daughter with a restrictive diet. That she'd cured her other child with behavioral/developmental problems through diet. And that she wasn't willing to "sit back and take" the diagnosis like the rest of the parents.
My first thought: These are the parents you hear about in the news. The holistic ones. The faith healers. The ones with the dead kids.
And then I met one.
There we were, myself and a small gathering of moms of type 1s, enjoying some decadent snacks, chatting around a kitchen island during a moms' night out. I was the odd one out being the PWD and not the parent of one. Talk centered around athletic activities and pumps and campouts and blood sugar checks. It was friendly, lovely.
I found myself split off in conversation with a woman none of us had ever met before. She had a daughter who'd had diabetes for a year or two. But despite being a couple years in, she seemed to have a really outdated understanding of type one. She didn't think I was allowed to eat the cake in front of me because it had sugar. She had never heard of an insulin pump or a cgms. I was a little taken aback at how little she knew with a type one at home, but hey, we were all there at the beginning once. I felt it incumbent on me to clue her in.
Then she began to tell me about how a man at her church had been cured of his type 1 through his faith.
"No, I'm sorry, that didn't happen," I said. There was no mistaking my tone.
She began to stroke my arm and stand a little too close. "You may not want to believe it, but I believe it. I believe that God does miraculous things and that he healed that man."
"No, I believe you misunderstood that man. He did not have type one diabetes if he no longer needs or takes insulin. He was likely a type two on insulin and was able to stop taking it."
She stroked my upper arm, longer, harder. With both hands. It was like she was inside my skin. "No, no, I really do believe it. The Lord will heal you. You just have to believe."
I was among friends who were believers of various faiths. In a Christian friend's home. With a Muslim friend standing on the other side of me. This was neither the time nor the company for me to declare my personal thoughts on any of her assertions about faith and Jesus.
But my thoughts on diabetes are more than personal. More than a matter of perspective. It's goddamned science. It's fact. And you don't get to have your own science.
I yanked my arm from underneath her heavy petting and growled "STOP TOUCHING ME" through clenched teeth. I shook her off - literally and figuratively - and continued trying to press my point that this was a dangerous game to play with her daughter's head and that it was a horribly insensitive point to try to make in a room full of mothers who, I dunno, I guess just don't love the Lord as much as that random guy who didn't make national news with his miracle cure.
I removed myself from the conversation enraged. I'm sure she could hear me ranting and shouting to the other moms as she said her polite goodbyes to our hostess in the foyer. I drove home in the night shaking with fury.
You don't tell people that diabetes - of ANY type - is in our lives because we don't try hard enough. Because we don't want to rid ourselves of it. Because we don't eat the right things or pray to the right gods or because we buy into the Big Pharma schemes. Who are you to claim that degree of insight into a disease so few doctors and researchers even understand?
And you don't dangle the C word in front of us like you're clairvoyant and we're just blinded by a lack of imagination. I will smash the crap out of your crystal ball. And probably use the shards to check my blood sugar.