There are a lot of things about diabetes that I have become used to. I’m used to waking up and testing my blood sugar. I am used to carry around a glucose meter in my purse. I am used to calculating carbohydrates based on it’s comparison in size and weight to a slice of bread. I am used to people asking me if my insulin pump is an MP3 player (and before MP3 players existed, I was used to people asking if it was a beeper). I am used to buying Juicy Juice boxes along with a bottle of wine. I am used to explaining the differences between type 1 diabetes and type 2 diabetes and I’m used to parents and teens emailing me questions about how to cope and get used to everything that is diabetes.
I don’t like it, but fourteen years will do this to a person.
But there is one thing that I have become used to and I’m not sure that I’m okay with it anymore.
I have become used to being the Diabetic.
It was sneaky, really. I hardly knew it happened. All I did was decide one morning that I wanted to help teens manage their diabetes a little better and maybe meet some new friends, and the next thing I know, I am the poster child for a disease. My inbox fills up on a daily basis with requests for advice and ideas for projects and I can literally sit down with a person for two hours and not talk about anything else except diabetes.
I was okay with it at first. For the most part, the diabetes was segregated from the rest of my life. No one in my college classes asked me what my blood sugar was. My RA didn’t knock on my door to make sure I had stocked up my drawer with juice boxes and glucose tablets. My friends don’t read my blog or ask me about my websites. They know about it, they support it, but unless I bring it up, this is all. In fact, the most any of my friends ever said when we were together was, “Are you doing okay?” I think the covert implication of what they meant made me feel more comfortable. It was a question that you could have asked anyone, but with me, it meant something specific. And I could answer, “I’m great” and that meant exactly that.
When I moved here, essentially everyone knew that I have diabetes. It wasn’t a secret. The story of how I was hired goes like this: In my junior year of college, I met Sean Hughes, of DiabeticFoodCritic.com. He used to work at a PR agency and he told me that when I was ready to graduate and look for a job that I should send him my resume. So I did. Just so happens, his friend from that PR agency was looking for someone who knew about blogging to work in the growing digital media department. He recommended me, I had the interview during my trip to NYC in March, and three weeks later I was hired. My boss knew I had diabetes before I even met him.
The rest of my experience here, which has been for the most part amazing and wonderful and pretty much everything a straight-out-of-college girl could ask for. Except for the constant and unrelenting identification that I have diabetes. They don’t tell me I should be eating that and they don’t tell me about their dead grandmother (thank God). Because I have already been identified all as The Girl Who Knows Everything About Diabetes.
Which, I guess, leads people to believe that’s all I want to talk about.
Tonight was our holiday party. And in the course of three hours, I had not one, not two but six people talk to me about diabetes. The first conversation was fine – in fact, the guy actually asked me if it was something I wanted to talk about. We were on the bus driving into the city, so I didn’t mind.
But it kept going. They were even seemingly casual comments like, “How are you doing? Is everything okay with the drinking and the blood sugar?” Yes, Mom.
Then there was another person who wanted to tell me about how he had to buy syringes for his type 2 diabetic father and asked my opinion of how often one should repeatedly use the same syringe. However long you want? Or better yet: I don’t care.
And another one who wanted me to explain how the insulin pump worked while I was bolusing for my vodka cran. Can I please just bolus in peace? I really don’t feel like giving a biology lesson at a New York City night spot where I’m yelling over the obnoxious pop music.
Then there was the joke. In any other circumstance, I probably would not have minded much. It was a reference to a cupcake I was given by a colleague’s girlfriend a few months ago. It left me staggeringly high because some alcohol lowered my blood sugar, convincing me at bedtime I would be fine. I awoke at 5 a.m. with a blood sugar topping out at 519 mg/dl. The next day I joked that the cupcake almost killed me.
Tonight, out of the blue, he says, “No cupcakes for you!”
Excuse me? Was that really necessary? In my opinion, I can joke about diabetes. I have the disease and if I want to make fun of it and myself, that’s one thing. But not anyone else. It’s not funny and it’s not appropriate and it’s certainly not welcomed.
I left the party. Hasty, perhaps, and it left me in the cold, cruel Manhattan world. But I had to. I was on Typecast Overload and I thought I would bite someone if anyone else even breathed the word “diabetes.” I eventually came back, distraught and upset, and no sooner did a co-worker calm me down that another co-worker said to me, “Oh, you’re the diabetes expert, right?” I was so exhausted that I had nothing left in me but to say, “Right.”
It’s been fourteen years since I was diagnosed with diabetes. It’s been over seven years since I officially decided diabetes advocacy was something I wanted to do. It has been a wild ride, and it’s been amazingly fulfilling and I have no regrets about what I have done.
But tonight, on my drive home, I couldn’t help but wonder if I have become too much of a diabetes advocate. Have I gone above and beyond the call of duty so far that it is actually becoming my entire perception?
We have had several debates within the diabetes community about the use of the word “Diabetic” and how some people believe that too fully identifies someone with the disease. That by using the word “diabetic” they are in fact no longer a person but a disease.
Have I truly become a Diabetic?
It’s a strange, disconcerting thought to have when you realize that you are known mostly for being sick.
There a dozens of rash reactions I could have towards tonight. I could quit my job. I could quit my blog. I could hide in the bathroom every time I want to test my blood sugar or bolus some insulin. I could snap at people, “I don’t want to talk about diabetes!”
But mostly, I just want everyone – all the parents of children with diabetes, all my fellow bloggers, all my colleagues at JDRF and the other diabetes organizations that I’m involved with, all my friends, and my family, and my colleagues at my Real Job – that I am not diabetes. This is not the only thing I want to talk about. This is not the only thing I am interested in doing with my life. This is not the only way I want to impact the world.
I am more than this disease.