Diabetes Diagnosis & Stigma
I was very lucky with my diagnosis. I was 13 and with my family on a trip to Paris for a relative’s wedding, and suddenly really needed to pee when we were on the motorway. I also had this strange thirst: a kind of salt-sweet taste in my mouth. The Fanta I was drinking was doing very little to quench it. We couldn’t stop immediately as it was very foggy. By the time we reached a service station it felt like I’d bruised my bladder with holding it in!
We eventually got to Paris and went to the wedding. I felt basically fine, if a little tired from an early morning and long car trip, and a bit disturbed by the intense need to pee I’d had. The rest of the weekend went well, and we picked up a load of lovely food from a hypermarket on the way home.
I was feeling pretty run-down on the Monday after the trip, and took the day off school, thinking I had the beginning of ‘flu. I was better the next day though, went into school and basically everything was normal. I was pretty tired when I got home, and decided to treat myself by gorging on some wonderful food and drink we’d brought back.
That night I woke up between 6 and 8 times in the night to pee. Something was definitely wrong. I went to the doctor the next day and had a glucose test. The result was 33 mmol/l! (The normal figure is below 11 mmol/l.) I was formally diagnosed at hospital that day, and had my first insulin injection that night. If it hadn’t been for my food-binge, I probably wouldn’t have noticed things were wrong for a long time.
Still, that didn’t meant I found being diabetic easy. In fact, it was a massive shock. I had gone from being a care-free child to a care-worn adult overnight. Suddenly I couldn’t eat what I wanted when I wanted. Measuring and injecting were new and painful. And on top of that I was on two injections a day which gave no insight as to how to control the diabetes.
All of that combined to make every morning a dark joke. Wake up. Prick yourself. Ow. Write down reading. Pointless, no pattern. Set up the pen, draw up a dosage and inject. Ow again. Oh good, now I can have breakfast.
The medical advice at the time was to eat carbohydrates. Full stop. Along with taking insulin I was suddenly actively eating a lot more and so I put on weight. This didn’t do wonders for my self-esteem. Everything was new, difficult, chaotic, and seemed to be never-ending.
It’s from this time that I understand the stigma of disability and of diabetes. No-one ever said I couldn’t do anything because I was diabetic, but it felt like the world was closed off from me. Exciting things happened to other people.
More than that though, that feeling of being out of control was psychologically damaging. It’s bad enough being a teenager with little to no control of how you spend your life but with increasing responsibility. As a teenaged diabetic, with no control over anything, but all the worries being stored up for the future as you struggle to stay on top of high blood sugars, it’s much much worse.
I did get over my sense of stigma, and I did it through taking control of my diabetes. I learned to call the shots. But it took a long time, and that’s why I wrote Joe’s Rough Guide to Diabetes: it means you don’t have to go through the pit-falls I did. And the Small-in-one helps you to put that learning into practice.
When you’re diagnosed with diabetes, it’s easy to think life is terrible and will never change. Joe’s Diabetes is here to show you can still live the life you want.