Monday, July 14, 2014

Welcome to Your New Reality

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.


  1. I'm sorry you had to endure such an unpleasant encounter; it sucks that random people feel like they can talk about our disease with judgment rather than engaging in conversation.

    Something like this happened to me recently. A friend was talking about her coworker's husband who (according to the coworker) "doesn't manage his diabetes very well." This friend regularly reads my blog, so I know she understands how difficult it can be... even for those of us who try not to make a big deal out of it. It was quite surprising, actually. What do you say to someone other than the obvious? "Diabetes can be really fucking hard sometimes."

  2. I am shocked at the blatant disregard for respect from that person. Even if they think you have a bad kind. even if they think you did it to yourself or that you don't take care of yourself... you still don't say that to someone's face. That's just complete lack of common sense. They don't even have to understand diabetes to have more consideration than that. Do they walk up to a person missing a limb and say, "wow you must be stupid or something..."
    I'm proud of you for standing up and being assertive. I have no clue how I would have handled that. My views have changed over the years with diabetes. I probably would have been furious and definitely upset. Would I have it in me to say something? I don't know.
    I hated reading this though.

  3. Ugh. Ouch. And a big stink-eye to that inconsiderate golfer.

    I'm one of those definitely-not-juvenile Type 1s who *does* make a point of explaining which type I have. No, T2s don't deserve the blame that gets heaped upon them — and I'll usually include a comment to that effect in my response — but I believe there are big benefits to be had from chiseling away at all the misconceptions out there about both types of diabetes. Plus, to be honest, I just don't want to be the target of that blame.

    But good on you for calling foul on behalf of the whole team.