I was at an event hosted by Diabetes QLD last month, and there was an endocrinologist speaker who made mention a couple of times that people with diabetes were still the same people, but with an external pancreas.
A lot of people in the audience nodded their heads in agreeance at the remark. I always find these remarks confusing and difficult to make sense of. When talking of diabetes and the role it plays in our lives, I don't agree with this statement. Diabetes most definitely has shaped who I am as a person and how I live my life. I think it is foolish and silly to believe that you are still the same person as you were before diagnosis and that diabetes is just a little something you do on the side for shits and gigs.
I believe in giving diabetes the distant respect it deserves. It is more than running an external pancreas, because that external pancreas is being run 24/7. Saying we are simply running an external pancreas detracts from what we deal with on a daily basis.
Diabetes is my silent stalker, following me everywhere I go. 3 years ago, I was stalker-free. There were no hypos and highs lurking in the shadows. I had never had to sit out a meal and watch other people eat, despite being starving because my BGLs were too high. That level of self-control didn't exist for me before diabetes.
There is a fine line between letting diabetes run your life, and between giving it the attention needed.
This line also spills over into my relationships with other people. Which is another reason I didn't like this particular statement.
I learnt fairly quickly once people knew I had Type 1 Diabetes that they didn't actually want to know anything at all about it or how it affected me. My Diabetes is now only discussed without about 3 or 4 non-diabetics.
In the company of most Type Zeros, I stopped treating my diabetes like it had any impact on me. Then one day my older brother told me that 'he didn't feel sorry for me having Type 1 Diabetes because I could still eat whatever I wanted'. But he did 'feel sorry for his friend who was coealiac and a VEGAN BY CHOICE', because 'she can't eat much'.
I don't want pity from anyone for my diabetes. I live well with my diabetes. I just want understanding.
It was glaringly obvious that my brother, unfortunately, had no idea what it was that made having diabetes hard to have. I'm sorry your friend has coeliacs disease, I really am. That must be shitty. But the vegan thing - thats her choice. Comparing my auotimmune disease to her choice was really crappy. Being able to eat what I want is the trade off I get for nights when I wonder if I will wake up alive the next morning. Its the trade off for taking a massive supply bag with me everywhere. Its the trade off the fact that I might go blind one day. I don't know what coeliacs disease causes, but the choice to eat gluten or not is probably not that hard to do. If I inject insulin - the medication that saves my life daily - I am at risk of death by overdose simply because today I am more sensitive to it than I was yesterday. That's what I want people to understand - that its complicated and I don't ever get a break. I am always thinking about how to handle every situation with my diabetes.
I was on a CityCat the other day and for some reason read the safety instructions on where the life vests were located in case of emergency. I had to figure out a diabetes plan. My pump isn't waterproof, so in the hypothetical emergency, I was hoping I would be able to clip it to the top of my life jacket so it would stay above water and still work. I would have to somehow take my juice with me as I swam to shore, because that would be unintentional exercise that I had no time to prepare for, so the likelihood that I would hypo either in the water or on shore would be very high.
That's what diabetes is. No offense meant to my brothers friend who is coeliac and chooses to be vegan, but I don't think that those issues means that she has to worry about medical emergencies if she has to swim unexpectedly across the Brisbane River.
Diabetes is not just something I do on the side when I feel bored. Thats what I want people to understand.