Having type 1 diabetes makes your life harder. That’s a fact. You have more to think about, more to do, more to calculate, and more to deal with than someone who doesn’t have type 1 diabetes. Not to say that they don’t have their own struggles, but I think we can all agree that having a chronic disease makes your life more challenging.
Despite this, I’ve often been hesitant to use this fact to my advantage when the opportunity arises. As some call it, “playing the diabetes card”. Not that it’s wrong to do that, there are definitely situations where it calls for bringing attention to the fact you have diabetes, whether it means special allowances in schools or being able to carry food into places where it isn’t allowed in case of lows. I’m all for that. In fact, I recently went to a music festival and emailed ahead of time to make sure I’d be able to get my fruit snacks in despite the “no outside food” policy. When it’s an issue of safety, I’m not afraid to speak up. But other times, I tend to keep quiet.
A number of years ago, my friend and I decided to go to NYC’s Times Square for New Year’s Eve. We got there many hours early and were sectioned off into blocks. We were told that if you left the barricaded block, you wouldn’t be allowed back in, that meant even for the bathrooms. When I inevitably had to pee, I ended up holding it for hours. It was miserable. Looking back, why didn’t I just tell the person standing watch that I had type 1 diabetes, a medical condition that can make you urinate more frequently at times? I’m sure they would have made an exception. But instead I suffered in silence.
More recently I went to an amusement park where we stood and waited in long lines in the 90 degree heat. It was rough. When talking to a friend, she mentioned that some amusement parks will give your group a pass to cut the lines if you have diabetes. I get it, it’s hot, there are long lines, people can get low blood sugar stuck in line. I think this is a great option, especially for families with kids. But this is also where I’m torn. I do so much work on a daily basis living with diabetes, on one hand it seems like I should take the break when and where I can get it. But on the other hand, I’m always prepared, I know I’m capable of waiting in long lines, I carry sugar with me always, do I really want to “pull the diabetes card”?
There’s no right or wrong in this situation. People do what they are comfortable with, what they need to do. I’m not judging anyone’s choices in situations like this, I’m more reflecting why it’s so hard for me to accept these types of privileges and allowances. I think what it comes down to is not wanting a chronic disease to make people have to treat me differently, even if the treatment is beneficial. Type 1 diabetes is an invisible disease, people don’t know you have it unless they see a pump or sensor or see you check your glucose or give a shot. I’ve spent so much of my life blending in with diabetes, not ashamed at all of it, but choosing not to stand out. I tell the people I need to that I have it (friends, teachers, coaches, fitness instructors, etc) and I’m always willing to answer questions about it, but I don’t like people making a fuss or singling me out because of it.
I’ve spent the last 18 years figuring out how diabetes fits into my life. How much I want to share, what I feel comfortable doing or not doing. It continues to evolve as I too continue to change and grow. And maybe sometimes it’s okay to be singled out, to get a break. I’ll let you know what happens the next time I go to an amusement park…