It is amazing how being surrounded by people who understand your struggle can do so much to improve your life. I have spent so many years as a type I diabetic and never realized how lonely I felt until I joined a social media site just for diabetics. I knew I was frustrated, but not that I felt alone.
Yes, those of you who know me are thinking. “But, but, you have five other family members who are type I’s…”
I do, but four of them are long gone and the one that is left is my complete opposite and so, in honesty I have spent my life avoiding commiserating with him about our diabetes woes. My brother and I have both been type I’s for many, many years. My brother was diagnosed in 1983 and I was diagnosed in 1987. We are so very different. My brother has always been so good at self-control and self-discipline, which are two very good traits to have with diabetes. He was always the one with good A1c results, and he has very few complications from diabetes, even today.
I, on the other hand, have always lacked self-control and self-discipline. I very rarely have good A1c results and am now suffering from a whole menagerie of serious complications of diabetes.
So, growing up I felt constantly shamed. It was the most difficult, exhausting, depressing, never ending struggle to control my blood-glucose levels. To balance diet, exercise, and medication has always been a daunting and near impossible task. And it’s not a matter of just doing it, but having to do it non-stop, forever, never a break!
To look at my brother and see how well he did at it…I just felt like such a huge failure. So I never talked to him about it. Talking about our diabetes was a taboo for me. Don’t face the shame, don’t admit how hard it is and how much struggle there is. Because he has it easy, it just comes naturally to him.
As we grew up I learned differently. It never was easy for him, he just had better self-control and a different psychology about the matter. But the fact remained that I felt like a failure next to him. So I always kept my distance.
It wasn’t just my brother’s good behavior that made me feel like I was the worst diabetic on the face of the earth. My doctors made sure to make me feel bad as well. To them it’s all numbers and science. They were constantly upset that I didn’t (not “couldn’t”) keep my numbers down. To them “Keep your blood-glucose levels within the good range.” And “Balance diet, exercise, and medication.” Is just how to do it. They don’t seem to understand how very daunting that is. They don’t have to live it.
It’s not easy! It’s difficult! VERY,VERY,VERY difficult! It’s not just food, activity, and medication! There are so many other factors that complicate it. Stress, hormonal changes, life schedule changes, it seems that everything has an effect one way or the other on blood-glucose levels. It is a constant moment- to- moment battle that never ends.
It takes its toll on your body, mind, and emotions…and no one understands the weight of it all.
I’ve spent my life feeling alone in this struggle, and I didn’t even realize I felt that way. I was angry, and sad. I don’t know how many times I’ve talked to non-diabetics about being a type I and heard something like this in response:
“My so-and-so was diagnosed with diabetes and he just exercised and ate healthy and it went away. So it’s not that bad.”
I want to respond with, “FUCK YOU!”
But I remain calm and start to explain that I am type I and THERE IS NO CURE! THERE IS NOTHING I CAN DO TO GET RID OF IT, IT IS HERE FOREVER!
But then I remind myself that it would take an entire semester of educational classes to explain to these people the difference between types of diabetes and how type I works.
So I continued to struggle alone. Even the people closest to me, the very supportive people like my mom and husband just don’t completely get it. They can comprehend the struggle because they see it in me every day. But they still don’t feel the depth and weight of it.
Yes, I did attend diabetes group meetings. Where diabetics in my area get together to talk about life with diabetes. But I found that the vast majority of these people were senior-citizens with type II. And the very few type I’s were either newly diagnosed or very closed-up and stand offish. So I found no help there. I could have talked to the newly diagnosed and offered help to them because they most certainly were going through what I was, but I felt at this time like such a failure that I couldn’t do any good for them. Which brings me to my point….
I eventually stumbled across a social media site called TuDiabetes.org, where diabetics and family of diabetics can go to find support, information, and friendship with other diabetics. I thought I would join up and see what it was all about. I am so glad I did. As soon as I became a member I was greeted by so many kind people. They all were so open and honest with their struggle, experiences, and knowledge. They immediately made me feel like I finally belonged somewhere.
But most importantly I finally realized I’m not alone. There are so many type I’s that feel exactly like I do. They struggle just as much as I do and have the same problems as me. It’s not easy for them either!
I’m not a failure. I’m not the worst diabetic on earth. I’m an average diabetic who is fighting the battle, not alone, but with many, many others.