Last night, we had a wonderful BBQ with people I had never met, but who are friends of my husband. My husband must have told them I have T1 diabetes, for the host asked me if she could get me something special, like regular coke or water or whatever I needed. Regular coke??? Hmhmhm... exactly.. She was real nice and very concerned and she had honestly worried about whether I would be able to eat what she had in mind. So I went to see her in her kitchen and told her I could have whatever she had prepared for me. She listened very carefully and nodded and I noticed she didn't understand. Being seated around the table - what a fabulous scenery and I just had to compliment the host for having created such a fairy like garden - we were getting acquainted and since it was a warm summer night, I took of my jacket and without any warning, the first question popped out of the mouth of one of the guests: what's that little box on your upper arm? So I told the group I had T1 diabetes because my pancreas stopped making insulin. Therefore I needed to provide my body with insulin whenever it called for it: to cover food, to exercise, to be able to live and to cope with emotions. They were interested in this device called Dexcom G4 and they thought it was awesome that now I was worry free and ready to lead a totally normal life despite the diabetes! Well.. I told them diabetes is not that easy, notwithstanding that I have an insulin pump that makes my life easier, despite my Dexcom G4 that shows me the trends of what my blood sugar is doing. They complimented me for doing so well and then went back to the stories of the people in their surroundings that have been "blessed" with T1 as well. How awful their life was, for having swings in their blood glucose every day. For how they had to poke their fingers like 6 times a day! It hurt to hear them say those people didn't do the best they could, because they didn't seem to have their diabetes under control. When I asked them why they would think so, they answered: if it would be under control, they wouldn't have blood sugar rollercoasters and they wouldn't have highs and lows..
Why is it so hard to understand? I started the night with a low and I ended up high. Am I a "diabadass" now? Am I not doing the best I can? Will my toes turn black and will my kidneys fail on me? I wasn't ready for a pity show and it was pretty confrontational to hear others discuss and judge people with diabetes. I felt like I had to defend them and it threw some sort of shadow over the party for me. I don't think anyone noticed, but for the first time in a very long time, my diabetes feelings had been hurt. I know I can't blame them for not knowing. It's just painful, that's all.