In my 20-odd years of having type 1 diabetes, I’ve experienced changes in how I view it.
Upon being diagnosed at 11 years old in the early 1990s I wasn’t too keen on shouting about my diabetes and would prefer it not to be noticed if possible. Back then, type 1 diabetes meant taking injections by syringe and a relatively long procedure of drawing up a mix of 2 different types of insulin.
Performing this ritual was fine around people familiar with my diabetes but at school any trips to anywhere different, I dreaded having to find somewhere quiet and out of the way to carry out the mixing and delivery of the injection. I remember well the fear that someone would catch me mid injection and throw me out of a venue thinking I was injection class A narcotics.
By the time I started to use an insulin pen in my late teenage years, despite being a much easier way of performing an injection, I still had the view that diabetes was better off hidden where possible. I viewed diabetes as a weakness and something that could easily be misinterpreted. The fear of misinterpretation being a result of having been used to carrying around those hypodermic syringes.
Other important factors were that my control of diabetes had steadily got worse and I therefore hated my diabetes. I’d also been receiving a total lack of interest from my new diabetes consultant upon joining the adult clinic. 90% of my blood glucose results were made up and I preferred to hide my diabetes wherever possible.
In such a position of hating the diabetes, diabetes became stigmatised in my own mind and it was that much easier to see diabetes as being stigmatised by others, whether they were stigmatising it or not. I went to my first jobs refusing to declare my diabetes unless it was expressly asked about. At times, employers would be shocked to find out that I had diabetes and also that I’d not told them. My direct reaction was to feel more stigmatised by my diabetes, ignoring the fact that the situation would most likely have been different had I been comfortable with disclosing my condition.
If I had a hypo during the working day or were late, I was happy enough to blame the diabetes, perhaps in an effort to find some way of evening out the problems that the diabetes was causing. Of course though, the overall effect did not paint a good impression of diabetes as I hid at every possible opportunity unless it was causing problems. As a result, if anything, I was creating a stigma of diabetes being troublesome for my employer.
In the last 5 years though, my previously badly controlled diabetes, which had been floating above 75 mmol/mol (9%) has steadily come down and is now sitting comfortably below 48 mmol/mol (6.5%). As my control has improved, so has my attitude to my diabetes. Diabetes is still the condition that threatens to cause a number of unpleasant health complications but I now feel I’m negotiating terms with it and we have an understanding. I don’t let my blood sugars run out of control and my diabetes won’t bring on its damage too early!
This change in outlook has also changed how I view other people’s impression of diabetes. I don’t feel everyone will view diabetes as being uniformly negative as I once had. With good control and more positive view of diabetes, I now have a more open view as to how others may see my diabetes. Plus, if they were to view my diabetes as a stigma, it wouldn’t matter. If people want to be ignorant so be it –plus, I once had the same view so I can’t hold that against them too much.
I can see that diabetes can be seen as a stigma but, in my case, it seems to have been very much of my own creation and a creation I’m happy to have now dismantled and got over.
