From the outside, my daughter looks completely fine, nothing wrong and no unusual worries apart from standard teenage angst. From the outside, we look like a typical family with a dog.
To people looking in, it is difficult to see the effects of Anna’s Type 1 and not just on her, but the effects on all of us. She is seemingly healthy and people can’t see any symptoms of this chronic condition. Anna looks like she did before the diagnosis. We, as a family, have managed to adjust quickly to our new routine and we don’t openly discuss how these changes have profoundly shifted the course of our lives. The management of this condition involves so many steps that it is hard to explain to those who aren’t families of Type 1’s themselves.
From the outside we seem to be ‘travelling well’ and to me, herein lies the issue with what we face. Despite my child having a chronic condition with no cure at this stage, it would appear that for any changes to occur at Government level relating to subsidised CGM’s and Insulin Pumps, of which now may be a good time to mention that they are game changers to those living with T1D and also help to minimise complications and save lives, people need to almost mismanage their diagnosis to have an any effect on policy changes.
Seems a very strange thought and not one that I endorse. Those with T1D and their families do everything in their power to manage levels and manage the condition. This is an auto immune disease that is relentless. To put it bluntly and this is very blunt; if not enough insulin is delivered, then my daughter could die and if too much insulin is delivered, she could die. We walk a very fine line each day without any formal medical training other than what has been provided by our endocrinologist and educators as well as what I have learnt scouring the internet and speaking to other parents.
The weight and pressure this puts on shoulders is huge. For me, most of my day is spent figuring out ways to ‘beat’ my opponent. I am always thinking of numbers and what time of day it is. It may be my daughter that has Type 1 but I am in her team and I will battle along side her relentlessly.
Despite what people may think, managing a Type 1 diagnosis isn’t just about injecting insulin. There is so much more to it than that. Difficult daily choices are made, sometimes proactive though most reactive.
For people to be able to manage this condition to the best of their ability they need access to technology. Technology which has been created specifically for those with Type 1 to administer life saving insulin and monitor glucose levels. For people to be able to make educated decisions, we need to provide information to them and have them feel empowered. Access and education shouldn’t be available to a few, it should be available to all.
Perhaps if we all start to have these conversations and use our voices, we can create change. #changingtherulesofT1D