AOT1 – by Helen May
Wow! Wasn’t Diabetes Week great? Although I don’t Twitter, I followed the events and publicity through the news, email and Facebook. One thing that was hard to miss was the great video the two big UK diabetes charities, JDRF and Diabetes UK, put together to raise awareness of the symptoms.
Most of the Facebookers loved the video. However, as it only showed children, there were some dissenters. Like me, they were diagnosed with Type 1 diabetes as adults. Personally, I think children are much cuter than 30-somethings (or older) and are likely to get higher profile in the media so I’m all for it. On the other hand, I don’t think people with AOT1 (Adult Onset Type 1) should be ignored because there are some differences. I believe, there is no physical difference between type 1 onset as a child and type 1 onset as an adult. But emotionally, there is a difference because people with AOT1 have experienced independent, adult life without diabetes.
Let me give some examples:
• I have had a driving license for over ten years with no limitations. So, when this is replaced by a license which on only valid for three years, I feel type 1 is taking something away.
• I have learnt and habitualised the social etiquette of eating in front of people I don’t know. Now I have to teach myself how to behave in a business meeting when the sandwiches come out: whether to inject in front of my customer (who may be from any country around the world) or not.
• As an independent adult, when I need to get of the house in a hurry, I no longer need my Mum to remind me what I must take: I am used to picking up money and keys. With AOT1, I have to remember to pick up my diabetes kit as well.
• I have packed for many holidays and have a mental list of things to remember the night before. Now I have to think about the time difference a few days earlier and make sure I have enough supplies in my hand luggage.
• I knew how alcohol affects me and how much I can comfortably drink .With AOT1, I need to ensure I remain in control.
• Despite my Mum’s best efforts, my eating habits are not three square meals a day. I eat what I want when I want (and I know, I am lucky that my food desires and physical activity balance themselves out so I do not put on weight). When you have to inject insulin every time you eat, grazing is not ideal so I have tried to retrain my eating habits.
• Until I had AOT1, I had never experienced a condition which made me go from ok to shaky, blurred vision, unable to concentrate, … the symptoms of a hypo … in a number of minutes. With AOT1, I had to learn to recognise these, to react to them and not be afraid that they could happen at any time.
In short, I had to unlearn and relearn many habits that, for over thirty years, I had taken for granted. And I did not have my parents on hand every day to help me in the brilliant ways I read about Olly and others helping their children. I had not grown up with diabetes. Perhaps this is the reason why I am less inclined to tell new people (such as potential new partners) about diabetes: because after 8 years, it does not feel normal for me.
So, I’m not a typical type 1. However, as a result of paying more attention to people with diabetes through these blogs, I realised there is no such thing as a typical type 1. And, I’ve realised there are other AOT1s out there: I am not alone.