It’s Diabetes Blog Week Day 5. Today’s topic is: “What is one thing you would tell someone who doesn’t have diabetes about living with diabetes?”
There are so many things I would like to tell people without diabetes about life with diabetes: Insulin is a not a cure for diabetes. Insulin is not just taking a shot and being fine. Diabetes in any form can only be treated, not reversed or cured. Hypoglycemia pulls you out of your being into a realm that’s like a nightmare, where you shake and sweat, feel confused and don’t recognize yourself. And there is no guarantee the nightmare will end with you alive. Living with type 1 diabetes means you constantly think about it, not in abstract way, but minute to minute…
Could someone who does not have type 1 diabetes or who is not a parent of a child with diabetes understand that? Can one really imagine what it’s like to role play as a critical organ?
While it may not be possible for the world to understand what it’s like to live with type 1 diabetes, everyone should be educated about its symptoms and the symptoms of hypoglycemia. Just as nearly all parents know that fever and spots are signs of chicken pox, they should know that thirst and weight loss are signs of type 1 diabetes. Teachers should know that the child who constantly needs to go to the bathroom might have undiagnosed diabetes. In my school health classes we learned (poorly) what to do in certain emergency situations. Hypoglycemia was never mentioned. Why not?
I spend a lot time dreaming up ways to get this information to the masses. I have a lot of ideas I hope to be able to implement. But if I had to choose one thing to tell the world about diabetes it would be, “I can’t.”
I can’t eat without an injection of insulin.
I can’t go to sleep without worrying that I won’t wake up.
I can’t leave home without a glucose meter, insulin, and some form of sugar.
I can’t sleep through the night because I need to check my blood sugar.
I can’t accurately mimic a pancreas.
I can’t prevent my children from getting diabetes.
I can’t ever rest.
I can’t eat a single bite of food peacefully until there’s a cure for diabetes.
I’ve written about this before and I hope that you understand I’m not being antagonistic. I do believe that with people with diabetes can do anything they want (with great effort). My suggestion is to put our pride aside and approach diabetes advocacy from a different angle. It’s not that we shouldn’t be proud. We should be so proud. We work hard to keep ourselves alive. How will the world understand just how hard it is, though, and understand how badly we need a cure for diabetes, a vaccine to prevent diabetes, and in the meantime, an artificial pancreas, if we continue to insist we are the same as everyone else?
Since the discovery of insulin 90 years ago, people with diabetes have been treading water. If you prove you can tread indefinitely and no one thinks you’re about to sink, why will anyone help?
(Note to parents of children with diabetes. I am not suggesting you should tell your children they can’t do things. I’m trying to think of new ways to call attention to the needs of people with diabetes. I’m on your side. 100%.)
I think diabetes should have a name changed like auto immune diabetes. I think this will bring more awareness the the disease as well. People always seem to thanks only about type 2(type 2 should also be changed to insulin resistance diabetes). Also by adding the word auto immune people have a different thought process about the disease itself. This may even get more funding from people as they will come to realize it is not a life style disease where all a person has to do is eat better and exercise.
It makes me sad, too, Kathy. Thanks to all of you for the thoughtful comments.
This post makes me so sad, but it is so important to say these things. I believe that having diabetes makes you strong, but it also keeps you silent, and sometimes at the vey moment(s) when you need to be complaining or asking for help.
I’ve decided that if my islets ever give out and I would have to go back to my “old life”, I will complain more and not be quite so brave. Its ok to stop working if you don’t feel well, or very smart. And nothing to feel ashamed or inferior about either.
Love how you embedded the repeating line…I can’t…really smacks it home…
Thanks, this says what so many of us think everyday, only to be told “Cheer up … at least you don’t have something worse … like cancer!” My response is always: cancer is awful, but it is not chronic — eventually it ends (sometimes it goes away, sometimes the end is death, but in both cases, it’s an end). The same thing cannot be said about diabetes or any other chronic disease for that matter. I tell people:
“Don’t say such things, you know not what you are saying!”
Great Post :)”people with diabetes have been treading water. If you prove you can tread indefinitely and no one thinks you’re about to sink, why will anyone help?” Totally agree 100%
You make a really good point! Why fix something if it isn’t broken, so to speak. Thanks for saying that so well.
what steve said. he always says it best. :)
On we on yours, Jessica. 100%. Thank you.