As a parent of a child living with Type 1 diabetes I find that whenever I mention that my son has Type 1 diabetes I am bombarded with knowing nods by unknowing people.
Over the last couple of days with the inception of my son’s official school career I have had to tell many people that he lives with Type 1 diabetes, and it is then that I get the nod. The problem with ‘the nod’ is that there is usually nothing behind it other than misconceptions, untruths, myths and sometimes outright lies.
Many people in this world know someone with Type 2 diabetes, a great deal less know someone living with Type 1. It is this disparity that allows for the misconceptions to be laid and the nod to be given. When I tell people my son has Type 1 diabetes they immediately think they know what I am talking about. The think he can’t eat sugar, he tests his blood glucose once and a while, and with a little time his glucose will be controlled. Wrong. Wrong. Wrong.
People with Type 1 diabetes can eat sugar. In fact, sugar is in almost everything. We count total carbohydrates and cover each carb with a certain amount of insulin. Yes, he does test his sugar, but it is over 10 times a day. Not when he feels like it, not just when he wakes up, and he can never ever forget to check his sugar or he runs the risk of getting very sick or worse. And by no means will time help control his sugar levels. Maintaining even blood glucose levels is a 24 hour 7 day a week job. How long he has had diabetes had no effect on his sugar levels. Every day is a new day. A new hurdle. A new circumstance. A new set of numbers.
The nod requires me to explain my son’s disease. I cannot let people think he gets off as easy as some people in this world. I will not leave until the nodder knows that my son checks his sugar as much as he does. I always make sure the nodder understands that any and all things can negatively affect his sugar levels. Stress, food, excitement, sports, sleepiness are just a few of the things than can affect sugar levels. And to top it off, they can affect it differently each day. One day stress may make my son’s sugar go low, and the next it may make his sugar go high.
The nod sometimes implies that they know someone who had Type 1 diabetes but has since been cured. This is the lie that I must rectify. Type 1 diabetes has no cure. Not now. Not then. Not ever. Regardless of what they have been told, and now falsely believe, no one has ever been cured of Type 1 diabetes.
I know there are many people out there that do not understand Type 1 diabetes. I understand that and I understand why. I also understand that it is my responsibility to all people living with Type 1 diabetes to educate as many nodders as I can.
It’s a dirty job, but someone has to do it.
As A parent of a child living with Type 1 Diabetes for the last 11 yrs i still get the so called nodders and good meaning people who really know nothing about what it is like to live with this 24/7. she is sixteen in Dec and is doing most of it by herself but you never really let go do you.
Lisa,
Thanks again for writing. While I never mention names or exact situations in my blog, I alluded to this being a school issue in the second paragraph. I appreciate your insight and I do hope you keep reading.
Leslie
I definitely did not get that from your post. I guess I have been lucky – my experiences with teachers have been very open to listening, and following directions, asking questions, and calling whenever they have issues. I have never had someone dismiss the detail of care that he needs because he will just grow out of it, or its not that bad. I am sad for you and your child if the teachers and others who care for him when you cannot are really that unwilling to listen to you.
Lisa,
I totally agree with you. I don’t actually talk to people about my son and his diabetes unless they are in direct relation to my son’s care. I certainly don’t talk to people about my family whom I don’t know either. The main point of this particular post is people that are taking care of my son when he is in school. They are the people that are required to keep him safe, and if their misconceptions about his disease get in the way then it is my job to educate. My son is in by no way sick, or sickly. A regular follower of this blog knows that in our home diabetes is what it is, but by no means does it mean my son is sick. Along those lines, we don’t even refer to my son as a ‘type 1 child’ which implies that he is nothing but his disease. Thanks for writing and I hope you keep reading.
Leslie
Thanks Janet and Linds. I really appreciate you reading and commenting. I hope one day someone reads this that will help me in my effort to educate the masses. For now I am happy when one person can use it to teach someone in their life. Thanks again!!
Leslie
I am also a parent of a type I child – and I also used to get really riled up when people didnt understand, or if I thought they were drawing parallels between my son’s condition and that affecting middle age couch surfers (another potentially unfair generalization). But soon, with the passage of time, I came to realize that I need to worry about those people who are charged with caring with my son, to make those people aware of what was needed to happen to keep him safe, and to make sure that he is learning how to deal with his situation as matter of factly and simply as possible. I personally dont think that sounding all alarms with people just politely listening to me discuss my family, and potentially reinforcing to my son that he is SICK and living at death’s door, is particularly healthy for my son, or me. If there are ill-informed people out there who have no actual impact on my family, I guess I dont have the energy worry about whether or not they know if he can diet and exercise his way out of this or not. They are not relevant and I have bigger fish to fry. My two cents….
It is a dirty, filthy job, and one that you, nor any parent or adult living with type 1 diabetes should have to do. Someday, your education efforst are going to pay off, and I truly believe that it will happen sooner rather than later. Well said Leslie.
Perfect, Perfect, Perfect. My favorite is when the nodders say something stupid in front of my son about how someone they know died from diabetes. Love that….