I was diagnosed with type 1 diabetes when I was 7 years old. Type 1 diabetes is a genetic condition, therefore a lot of people diagnosed have some kind of experience with it within their family.
However for me this was not the case except a few very distant relatives. This meant when I first started having symptoms it took a while to reach a diagnosis and the condition was very new to me and my family.
I have to do around five injections per day at a minimum and whenever people ask general questions such as “does that hurt?” or “how do you remember to do that?”, it doesn’t faze me as through being diagnosed so young, all I remember is life with diabetes. In this sense I am grateful for my young diagnosis as never had to adjust to the way of living of counting the carbohydrates in everything I eat and centering my life around diabetes. It has only been when starting to write this blog that I have started to think about the parts of diabetes which I dislike the most and feel the most uncomfortable about which to most people’s surprise is not the blood or the needles.
The part which I have found hardest to deal with is the lack of support and judgement from those who are expected to help. For example, when I was under 18, diabetic clinics were a lot more regular than they are now but I would dread going. The paediatrician I saw most regularly would express annoyance if the control of my diabetes wasn’t perfect. Although, the goal of course was to ensure the control was as balanced as possible, the reactions and comments made in these clinics to a teenage girl who was trying her best, and struggling with anxiety as it was, made me scared to be honest about any troubles I was having. Instead I would prefer to say as little as possible meaning many parts of my diabetes which were uncontrolled were left without help for fear of being lectured rather than helped and advised. Since going to university and transferring to a diabetic clinic closer and receiving treatment from a new set of staff, I realised how much these clinics affected my chances of receiving the help I needed.
Not only were these attitudes reflected during clinics but also with family members. One close relative is also type 1 diabetic but has stuck to a very rigid diabetic system meaning she is unable to eat certain things at certain times and any food schedule changes can make her dangerously unwell. However, I am on a much more modern system where my increased amount of injections mean I am extremely flexible and can (for the most part) eat and do what and when I like. Another close relative therefore struggles to wrap his head around the difference between us considering we have the same disability and for some reason sees me as the deviation of the ‘correct system’ despite knowing nothing about it. Whenever we are eating out etc I get comments such as “you shouldn’t be eating that”; although the comments probably do come from a good place, I can find them belittling as it is my condition and something that I have to deal with day-to-day. Firstly, with the flexibility of my system I am able to eat what I please and secondly, even if I wasn’t, I am a grown adult so any occasional exceptions I would like to make and do to my body is completely my choice.
Although to many readers, these might seem like minor problems, to hear them from both medical professionals and close family members on a common basis made me doubt myself and my control of my condition. These are only a few examples but there are many more doubting looks and concerns ranging from people I know to strangers. I find it upsetting that as well as all the physical impacts diabetes has on my body, the hardest part is the lack of understanding from the people I would be most expect to understand.