Wednesday, 21 March 2012

"You don't have to tell anyone"

"Diabetes is your own condition. If you want to keep it private, that's fine. If you want to tell your friends about it then that's fine too, but you don't have to tell anyone if you don't want to."

I wondered why I wouldn't want to tell anyone. I was 14 years old and I was texting my best friends to let them know that I was in hospital, that they didn't have to worry but that they could come visit if they liked. I'm pretty sure that one of my best friends announced my new diagnosis to our German class because that's where she was when she found out, and I didn't care. It's not like diabetes is anything to be ashamed of. It's a condition which I did nothing to cause and says nothing negative about me, and it might be a bit confusing to people if I have to keep disappearing to do injections and test my blood glucose.

A bit over a year later, I started to feel like I was being smothered with attention. I've never particularly enjoyed being the centre of it all, and it was just too much for me. I asked my teacher if she could ask the class to stop looking at my BGs and asking me questions all the time. It was just so frustrating for everyone to be knowing and questioning when my BG was a little high or a little low whether I wasn't taking care of myself properly and making judgements about it. I began to wish that I just hadn't told anyone in the first place.

I spoke to my teacher at lunchtime on one day, and she said she'd talk to them at lunchtime the next day. But the next morning, during registration, this happened.

Let's just say I was very glad that my friends knew that I have diabetes, knew what 'LO' means and knew that I needed glucose gel right away. Needless to say, I went and spoke to my teacher and started to view the whole situation in a newer and more positive light. Perhaps it was kind of awesome that people knew what to do.

From the age of 14 to 18, I was in high school with the same people who knew about my diabetes since the day I was diagnosed. Although I sometimes got frustrated when they looked at my BG numbers or questioned my judgements, my friends were the sort of people who I could look to when I needed help and they would know what to do. They even learned how to use glucagon.

In  October I left home for university and for the first time I was with nobody who knew me, and nobody who knew about my diabetes. I have to say, I have never had a huge problem with disclosure. I talk about diabetes as and when it naturally arises.

I do not meet people and blurt out that I am diabetic before I say anything else. On the other hand, my friends all know about diabetes. Sometimes diabetes comes up in conversation because somebody sees me testing my blood sugar, or because they see my pump clipped to my jeans. Sometimes they see me eating a glucose tablet for a low or they see a sensor or infusion set on my arm. Sometimes someone makes a comment about diabetes and I say "I have type 1 diabetes, and...". Sometimes someone makes a comment about something other than diabetes, and I feel that my experience with diabetes might be relevant.

On the whole, I try to tell people about my diabetes as soon as possible, but not before is natural. That fits into my general project of making diabetes a part of me but not the most important thing about me. If people didn't know I had diabetes, then they might not understand why I act like I do sometimes, checking my BG and wearing a pump. On the other hand, I want my identity to consist primarily in being a philosophy student, a painter, and all the other many things about me, and not in my diabetes.

This post is my March entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at


  1. Great post. I'm the same way with disclosure - don't blurt it out, but it often just comes up naturally. Same thing growing up in school and college. Told my close friends, those who probably needed to know in some sense in case something happened, but it wasn't a big frustration. At least, not from them. I think that question of being "defined by diabetes" is a relative one, and I'm personally OK with that as long as it's on my own terms - not being dictated by others or by my D itself. Thanks for sharing this.

  2. I love your honesty about the time you felt smothered by the diabetes attention. Thank goodness your friends knew how to help you!

  3. I tend to be the same way, really - at least, IRL - I'm not going to make it the first thing someone finds out about me, but it comes up when it comes up. Glad you're at a place where you're comfortable letting people know when the time is right!