There has been a lot of discussion in our parents group on Facebook in the last few days about how to make children with type 1 diabetes eat when they refuse to, and generally do what they need to manage their diabetes. Some of the comments have been heartwarming and show great understanding of the nature of children and young people, as well as the nature of diabetes. Other comments speak more of the very genuine and valid distress of a parent with an aching heart for their child, with perhaps less thought about what it might be like for the child.
What we need to remember is that children and young people are dealing with all of the normal transitions of life, or growing up. They fall in love, get their hearts broken, want to fit in. They worry about how they look, what they will do in life, how they will cope. They are charged with the task of rebellion, of testing the boundaries of life, as all young people are, it is how we grow as a society. Young people are risk takers, they dance on the edge of danger and find out how hard it is to fall. They create new ideas, new worlds. They have to get through school, university, get a job, leave home. All the time layered with their diabetes.
It is their diabetes. They don’t get a break, not even for a moment.
Kids with diabetes don’t try to manipulate you. They are not naughty. They are simply dealing with a very grown up challenge, well before they should have to. And they are still your beautiful child. Teens will challenge you, whether they have diabetes or not. And it is our job as parents to work through this with them. Not to blame, but to love. To teach, to support, to encourage and to care.
It got me thinking about how families are affected by diabetes and how sometimes, parents and kids need to stand in each others shoes for a moment to see what it is like for the other side.
So, to kick off, here is a letter I just wrote as my 16 year old self, to my parents. I will write one from the parents perspective soon.
Dear Mum and Dad
I know you think I hate you but I don’t. I do hate diabetes, my life and myself. Sometimes I want to die. I don’t want to be different from everyone else. How is anyone supposed to want me, to love me, when I have this disease? I feel broken. Dirty. Alone.
I can never escape diabetes. You can. I know you worry about me all the time, but it is MY diabetes and worrying about it and living it are totally different. I am going to be the sucker left with it once I am gone from you. You get to take a break. I can’t. I figure it is my body and I should be able to do whatever the hell I like. Even if I end up sick. And you won’t be there forever for me. I have to work it out myself. I am it….
Sometimes I want to run away, not really from you, but from myself. I find myself behaving in a terrible way, but I just can’t stop. I want people to see past the diabetes, the brokenness of me, and just see a pretty girl. Someone worth loving. I feel so fat, so ugly, so unwanted. How can any boy want ME?
There are times where I want to crawl into your bed, like I did when I was a little girl and snuggle up between you, but I can’t. I want everything to go back to normal, like it was before diabetes. So I try to make it that way. I don’t know if you know, but I don’t take all of my injections and I don’t test my blood that often. It makes me hate myself even more….but at least I feel more normal, more like my friends. I see my perfect little sister. I love her so but she never does anything wrong…she is not broken. How could you love me as much as her when I do so many terrible things?
I am so scared about my future. Will I end up with no legs? Blind and with no kidneys? This is what they told me….and to not have babies, this is tearing me up inside…..I am so sad, all the time. That is why I drink and do so many dumb things. It is not to hurt you. It is what everyone else is doing and I just want to fit in. Sometimes when I am partying, I feel invincible and diabetes can’t touch me. And then I get sick and it all comes crashing down around me. I know I am probably damaging my body but it seems this is my future anyway, so why bother caring……
I find myself failing where once I was the leader. I worry that I will have to leave home soon and I will not be able to manage without you, but I can not tell you that. I want so much to get away from you and so much to stay by your side.
I know I was your perfect little girl. Always doing everything right, but I can’t be that anymore. Because I am broken. And so is my heart. I hope you can forgive me one day
your diabetic daughter
I would love to hear both parent and young people’s comments and thoughts and please feel free to submit your own story from either perspective