Type 1 diabetes is often referred to as juvenile diabetes despite the fact that it can strike anyone at any age. This name is one of the many things that contribute to the misconceptions surrounding diabetes.
It leads many people to think that children get one kind of diabetes and it's not their fault and adults get another kind of diabetes and it is their fault.
Last week Doug and I were out golfing. One of the other golfers spotted me checking my insulin pump.
"Oh, is that a pedometer?" they asked.
"Nope" I said, "it's my insulin pump. I have diabetes."
And then I waited for the response. Typically, I would hear something like "oh, I know someone who has a pump" or "my aunt had diabetes" or "how does a pump work?" etc etc.
I don't usually get a look of horror followed by a "wow, that means your diabetes is really bad". It wasn't even a question. It was a statement of fact. My diabetes is very bad. Therefore I must wear an insulin pump.
I responded with a tight-lipped but polite "actually it doesn't mean that at all. My pancreas doesn't work and I need to take insulin in order to live. I just use a pump as a way to get insulin. I could just as easily use needles". I certainly did not expect to hear "yes, but that means that your diabetes must be really bad" in response.
Now I was frustrated. I understand that most people have no idea about diabetes and I don't expect anyone with no experience with it to be an expert. So, while the first comment was hurtful, I don't believe it was intended that way. Once I explained things, I would have hoped that they would have listened and made an attempt to understand. Or at least ask questions. The second comment went from being unintentionally hurtful to something worse. They were judging without knowing and doing it to my face without apparent care for how I might feel about being judged.
The third comment was the final straw for me. "My cousin has diabetes. She really doesn't take care of it. She is on a pump too and it's really bad."
I responded with "the worst thing about diabetes is how unfairly people are judged. You don't really have any idea what your cousin does or doesn't do to take care of herself. Everyone assumes that, if someone has diabetes, it's their fault. Often it's not. And even if someone's lifestyle did contribute to their getting diabetes, it doesn't give anyone the right to judge them."
For anyone who knows me, saying that directly to someone, particularly someone I don't know well, is as close to boiling over that I get. I was furious. I was hurt. And I was grateful for the dark sunglasses that hid the tears of frustration.
As we walked on to the next tee, me struggling to get my emotions under control and her apparently oblivious to the turmoil she created, a voice popped into my head.
It said: welcome to your new reality.
I am no longer a 28 year old newly diagnosed 'juvenile' diabetic.
I am now an almost 40-year old person with diabetes. A person who makes a point not to say "I have type 1". I say "I have diabetes" period. And I am now of an age when people begin to develop type 2. Which means that the assumption more and more is going to be that I have diabetes because I did something wrong. And I am on insulin because it's really bad.
I have a feeling I am going to be spending more and more time trying to teach people that a) the fact that I'm on a pump is awesome, not awful and b) that it's just not ok to judge people, no matter how much someone thinks they 'know' about diabetes.