Through The Eyes of Women: Christel Marchand Aprigliano, Diabetes Community Activist
Long-time community diabetes activist, diabetes policy advocate and blogger, mother and wife, Christel Marchand Aprigliano believes that to live optimally with a chronic illness, you have to have support from friends, family and peers who live with the day to day, moment to moment challenge of facing something that never goes away.
Usually I write a blog about the phenomenal women I have the privilege of interviewing. As I was preparing for my interview with Christel, I came across a hypothetical letter she wrote to her younger self, when she was first diagnosed with Type I Diabetes at age 12. Here it is:
You knew what the doctor would say when she stood in the doorway of the examining room, staring at the expedited lab work. The checklist in Time magazine you’d read in class a week earlier gave you all the clues. (And sweetie, you really should have been studying.) You’d mentally checked every box next to the symptoms that warned “you might have diabetes.”
Now it’s confirmed, but you have no idea what that really means. Mom and Dad do, however, so the crying and whispering to each other are justified. You all will never be the same.
Sorry about all that candy that you won’t be able to eat, left in the pastel Easter basket and soon to be thrown away while you’re at Joslin Clinic. It’s a big bummer to be diagnosed the day after Easter. I’ll let you in on a secret: Years from now, you will enjoy chocolate and candy in small quantities. Not that sugar-free junk that is a waste of carbohydrates and only makes your stomach sound like a garbage disposal, but the good stuff.
It’s going to be rough for a while. You and your parents are on the steepest learning curve you’ll ever experience. There’s an expression: “drinking from a fire hose.” You’ll have your lips wrapped around that hose for a good, long time. You, Mom, and Dad will sit in classes with other shell-shocked patients and parents, wondering if the universe will collapse under the weight of all that knowledge.
Eventually, you’ll get into the swing of things, and it will feel as if everything is almost back to normal, except for the shots and the testing and the measuring and weighing of every tiny morsel of food. I’m telling you now: It’s not. It’s not normal, and even 30 years from now it won’t be. But I am here to tell you that it gets better.
Here are important things to know:
That lady you will meet in the patient lobby at Joslin Clinic with the backpack thingy? It’s called an insulin pump. It gives you freedom: to eat when you want, sleep in, take extra insulin when you need it and less when you don’t. Pumps will get a lot smaller over the next 30 years, and you will wonder how you ever lived without one. You will wait until 1999 to get a pump, but it will be worth it.
People who give you that pitying look or tell you horrific stories about someone they know with diabetes? You will quickly school them, but you will be nice about it. You’ll smile when you tell them the difference between type 1 and type 2 diabetes (or whatever they’re called, because the names keep changing) and that you know a lot of people who are healthy with this disease. Smile even though you want to kick them in the teeth.
You will “diagnose” four people in the next 30 years, because they come to you asking questions about their symptoms. (Sorry, you are not a doctor. Remember that fear of needles and blood? Never goes away.) They will come to you because eventually you will not be afraid to tell the world you have diabetes. There will be a time in your teens when you want to keep it a secret. There will be a time when you lie about your blood sugars to your parents and your doctors. You will regret that later. You will also regret a lot of other things, including that one night … . Oh, never mind. You’ll find out.
Food will be an issue for you. You know how much you like pizza and bagels? They are not your friends. Neither is tequila. I’m warning you now, but you won’t heed most of this. Thirty years from now, you will try to keep your blood sugars in range when you eat these items, but you still won’t have it figured out. (Although you will get close. Dual wave bolus. Yeah, you have no idea what I mean, but that’s OK.)
Complications will happen to you, but you will consider yourself lucky that they are “fixable” ones. You will also consider yourself invincible for a while, which is perhaps why the complications will develop in the first place. You will feel guilty for what you do—and don’t do—and you will hate yourself. Love yourself. Please. You have one body and you’ll need to love it as much as possible for the rest of a long (crossing fingers) life.
Why? Because someday (and I’m not telling you when, because there has to be some mystery), you will meet a funny, sweet, and sexy man who thinks that you are also funny, sweet, and sexy. And he won’t care that you have a chronic illness. He will stick by you when you are sick and watch over you when you are low. I’ll give you a hint: It’s not that guy you currently have a crush on. He’ll become a loser who uses steroids. Eewww. Second hint: It’s not Michael J. Fox. He’ll still be hot, and he’ll have his own health issues one day.
Diabetes technology will get better, but you won’t think it happens fast enough. Lancets will hurt for a long time, needles won’t get shorter for years, and some technology will downright fail. But life will improve, and there will be great things on the horizon.
When someone tells you a cure is only “five to 10 years away,” just nod. You will believe this for five years. You will believe this for 10 years. You will stop believing, but you will never stop hoping. And that’s what will keep millions of us going in our darkest hours: hope.
You don’t know any other people with diabetes right now. You’ll meet some at Joslin, but you won’t get close to anyone. There are camps, but your parents will want you to not feel different, so they’ll send you to camps with “healthy” kids. To this day, I have no idea how you survived—and I’m talking about the bugs. You hate them. You still do.
But one day, you will know a lot of people with diabetes. You will meet them via computer (not the one Dad uses for work in the basement that you play Zork and Adventure on and create simple Basic programs with). You will meet them in person. They will welcome you into their homes and their lives. You will laugh with them and cry with them. You will share your deepest fears, and they will not placate you or blow you off, because they will have the same fears. They will become part of your family. Embrace that. I only wish you had found them sooner.
Thirty years from now, you will sit in front of a computer, staring out into a rainy afternoon, grateful to be who you are and wishing you could have heard all this after your first insulin injection in the ER. I’m not sure it would have helped, but it couldn’t have hurt.
And the one thing I really wish you knew?
That class you will take at Joslin, where they will tell you that someday you can have a successful pregnancy?
They will be right.
All my love,
[This story originally appeared here.]