I’m sure not many people can remember what they were doing 25 years ago today. I can. I was 7 years old. I was always tired and had an uncontrollable thirst that I couldn’t quench no matter how much I drank. After a holiday to Florida where I’d drove my parents round the bend needing to find a bathroom every 5 minutes, they made me an appointment at the doctors. I can still picture the doctor’s room as I sat there beside my mum, and heard the doctor tell her she had to take me to hospital right away, “I think she’s got diabetes.” It’s one of those flashbulb memories, something so vivid and life altering that you never forget it. My life changed forever that day.
Thankfully for me I was too young to be scared. I had never even heard the word diabetes before so I had no idea what it meant and naively I was quite excited about going to a hospital. I can’t imagine though the fear that my parents must have felt that day. It’s something that as a child I was oblivious to, but now as an adult I can’t even appreciate how scared they must have been. Back then there was no internet or social media and we didn’t know anyone with diabetes so their knowledge on it would have been minimal and I imagine they would have thought the worst.
I spent the next 9 days in hospital. I remember parts of this time. I remember the nurses giving me an orange and a syringe to practise injecting; the pressure needed to puncture the skin of an orange is supposedly the same as that needed to puncture the human skin. I remember my best friend Jillian coming to visit and us playing kitchens with the box of plastic food that the nurses had given me to help me learn how to count carbohydrates. I remember being allowed out with my mum and dad for the afternoon and going to pick a cabbage patch doll which I named after my favourite nurse, Susan. I remember the nurses taking it in turns to come in and play with me and do my cabbage patch doll’s hair.
I remember one nurse, Sister Brown, who I’m sure was lovely but at the time I was scared of, wanting me to take my injection in my stomach and for some reason this really freaked me out and I remember crying. She promised me if I was brave and let her do it there just once she’d give me a gold star. I succumbed and true to her word she brought me a large gold star, something that I kept for years. I’ve never done an injection on my stomach since that day though. I remember my mum and dad taking it in turns to sleep on the pull out bed in my hospital room. I suppose actually I remember quite a lot of those 9 days when I was 7. I don’t remember a lot of the struggles that I’m sure my parents do though. I also don’t remember ever being scared (other than that injection on my stomach).
Most of all though I remember the most wonderful nurse, Sister Leitch, who gave me the best advice anyone ever has. She spoke to us openly and frankly about diabetes, she didn’t speak to me like I was young and stupid, which I wasn’t; I was a pretty savvy 7-year-old, and I remember being grateful that she spoke to me so honestly. She didn’t shy away from what a serious condition it is but she told me that I had to make a decision, I could either sit back and let this thing rule my life or I could choose to rule it. Her words have stuck with me over the last 25 years.
My parents, despite how worried and scared I’m sure they were, were wonderful. They never let on. They stayed so strong and matter of fact in front of 7-year-old me that I never felt I’d any reason to be scared. They learned everything they could about diabetes and how to manage it and they adjusted our lives accordingly. They never treated me as though I was any different and as a result I never felt the need to behave like I was. And so the years moved on.
I know a lot of diabetic teenagers rebel against their diabetes, stopping taking insulin and trying to manipulate their illness. I never did this. I never even contemplated it. Not because I’m perfect; I probably didn’t test my blood sugars anywhere near as often as I should have, and I could definitely still work on getting my overall control down, but simply because, to do that would have been to let my diabetes win, and I had no intention of doing that.
My diabetes put me in hospital once; 9 years ago this month I ended up in high dependency suffering from DKA (Diabetic Ketoacidosis) and it was the most terrifying experience of my life. I remember once I was on the mend a consultant I had never met before coming round and asking me, in such a patronising tone; “Did you just not bother taking your insulin?” If I’d had the energy I wouldn’t have thought twice about punching him. I have never, in 25 years, just “not bothered” taking my insulin. I’d had a violent sickness bug where I couldn’t keep anything at all down and because I wasn’t eating I’d underestimated how much insulin I needed. We all make mistakes and this one almost cost me my life, but for him to insinuate that I’d just “not bothered” taking my insulin was, for me, the most offensive thing anyone has ever said to me.
I often get frustrated and angry at how diabetes is portrayed on TV shows and in the media, and diabetic jokes make my blood boil. Not because I don’t have a sense of humour around it, you have to to survive but because they’re so often filled with such ignorance. Eating sweets or cakes doesn’t give you type 1 diabetes. My pancreas doesn’t work how it’s supposed to, it doesnt produce insulin and without insulin you would die. This is why I have to inject myself with insulin up to 7 times a day. There is no known cause for type 1 diabetes, it cannot be prevented so jokes on how I must have eaten too many sweets as a child are not only very offensive but entirely inaccurate.
Being diabetic isn’t something I speak about a lot, not because I’m ashamed of it, I’m not at all, it’s part of who I am, but just because I don’t always feel the need to. I can’t abide with the ‘woe me’ attitude I often see relating to diabetes. No it’s not always been easy and even now some days are hard. A few fluctuating blood sugars can leave me feeling terrible, but that’s life. Everyone fights their own battles and diabetes is mine. If it wasn’t that, it would be something else so there’s no point in sitting moaning about it. It’s an illness I have but I’ve had it for so long now that it’s just part of me, I can’t even remember what life without diabetes was like.
So why write this? I guess because 25 years seems a pretty big milestone. As much as I take it in my stride I’m not a fool and I do know how serious a condition it is but I guess I just want to show other people that you can still live a normal, happy life with diabetes. I know that a lot of the way I react to my diabetes is due to the way my family managed it as a child and to the excellent support we had from our hospital diabetes team, and in particular Sister Leitch, and I will always be so grateful for that.
I strongly believe that in the future they will find a cure for diabetes, I also believe though that this is unlikely to be in my lifetime, and I’m okay with that. As I get older diabetes gives me new obstacles and challenges to face but I intend to face each of them with the same attitude as I’ve had since I was that little 7-year-old girl sitting in her hospital bed, ready to rule it and not let it rule me.