We’ve all been there: someone you’ve recently who has just learned you have diabetes decides to tell you that someone they know died or suffered with complications or had a totally and completely miserable existence thanks to their diabetes.
And you’re like, gee, thanks.
Do you ever wonder why people choose to tell you that particular story about that particular person? I used to think it was just because they wanted to be relate to you and your experience with something they’ve experienced. But recently I’ve started to wonder why all these experiences also happen to be fairly negative.
Last night I attended a meeting with my local Junior League chapter. The members of my committee got together for dinner to introduce ourselves and hear about the upcoming year. As we were chatting about pregnancy and babies over pasta salad and fruit, I mentioned that I had type 1 diabetes (trust me, it made sense in context).
One woman asked me if there were any symptoms of low blood sugar that they needed to be aware of, which I thought was sweet. I said that I usually feel them plus I had a continuous glucose monitor. The woman then said that she had a professor who constantly passed out because of his diabetes. I explained that sometimes if people have diabetes for a long time they can become hypoglycemic unaware, but she seemed to think it was just because he wasn’t in good control.
Then another woman said that she had a friend in high school who was really bad with her diabetes because she didn’t take insulin because she didn’t to gain weight. I’m actually working on a story about diabulimia (and have written about it previously) and shared that it’s a real condition.
These weren’t the typical “Oh my grandmother died from diabetes” stories so it didn’t register in my head that these girls were being rude or insensitive. And of course, I seized the opportunity to do some educating because, well, have you met me?
But as I was leaving the meeting and driving home, it occurred to me that while I wasn’t angry or offended, I was sad.
I was — am — sad that the only person with diabetes they could think to tell me about were people who were having a difficult time with diabetes. I know better than to be judgmental and say they were out of control or bad diabetics, because we know it’s so much more complicated than that. But the fact is that these people were having a really hard time with their diabetes. It was affecting their life so much that other people noticed, remembered, and then relayed the story to someone years later at a dinner party.
I reflected on other instances where people have told me about PWDs that they know and the vast majority of them are people who simply aren’t doing well. Or at least, they aren’t doing well in the eyes of the person talking to me. And I don’t know how much truth there is to what these people tell me second-hand, but perception is a main factor when it comes to how people feel about something.
I think it’s unfortunate that so many people are building their perception about diabetes around these experiences, not just because they are fairly negative experiences but because they are a very incomplete and uninformed picture of life with diabetes. These woman may have gone years thinking terrible things about these PWDs, not knowing that hypoglycemia unawareness and diabulimia are very real, very serious issues that PWDs don’t have any control over.
As I was driving home, I wondered how many of those women would remember me if they ever happen to meet another PWD again. Would they tell this person that they knew a woman in Junior League pursuing a Masters in Psychology to help other people with diabetes? Maybe. Maybe not.
When I posted about this on Facebook, a friend of mine wrote back that she thought it might have to do with confirmation bias, or the fact that those prior experiences fit their expectation of a what a diabetic “was supposed to look like.”
But it made me also wonder why we don’t hear more stories of people meeting someone who says “Oh, I have a friend with diabetes and she’s doing great! Just had her first baby!” I know people like that.
Or how about “I have a friend who’s running across Canada.” I know someone who is.
Or maybe “I have a friend who was Miss America and then got her PhD in public health” I got one of those, too.
Or perhaps “I have a friend who just ran his first half-marathon.” Have you met him?
There are so many people doing well and kicking butt with their diabetes. Sometimes I wonder why we aren’t remembered more often. Is it that unimpressive? Or are we not talking about it enough? One friend of mine tweeted in response to my rant that maybe should celebrate our successes more, so that people have better stories to tell.
I wholeheartedly think we need to celebrate our successes more often. Not to diminish the severity of diabetes, because it is a very thin line we walk. On one hand, we want people to know how serious and dangerous diabetes can be. But on the other, we want people to know that diabetes doesn’t have to ruin your life.
I’m lucky that I do know so many people with diabetes who are kicking ass and taking names. If I had just been diagnosed, hearing those stories would be terrifying. It also isn’t the full picture of how real life with diabetes is.
It’s important to know that diabetes is hard, frustrating and scary and it’s also important for people to know that we can live happy, fulfilling lives at the same time. And if they do see someone who is struggling with their diabetes they would see it as an opportunity to help, and not cast that person aside as lazy or out of control.
With an ever increasing number of PWDs in the world, people hear a lot about diabetes and its complications. And while complications can happen and we do need a cure, there are plenty of people who are living happy, fulfilling lives. Some of these people even have complications or other difficult situations with their health! I want people to hear more of those stories.
And that’s why I’m here.