Doing Well & Kicking Butt

kickbuttWe’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.

11 thoughts on “Doing Well & Kicking Butt

  1. I think this is another cognitive bias at work– not the confirmation bias, but the representativeness heuristic or at the very least a failure to reflect on probability. Instead of relying on base rate information (ie, I know multiple people with diabetes and seem to be doing okay), people latch on to something that is more salient in the brain, something easier to remember– the teacher who passed out in school.

    Now, you may argue your point more vociferously as a result, but consider our own misunderstandings of probability. We hang out with a very small sample of people with diabetes compared to the general population. If you select a random diabetic, the probability is much greater that they aren’t active in the D-community (online or off) than they are. For many of these people, what could their idea of “kicking butt with diabetes” be? That it is so well-controlled that it comes up very little in everyday life. That it rarely impedes their daily activities. That there’s minimal stress, anger, or frustration because they’ve figured out what works for them. Even when we openly share about our struggles with D, isn’t that what we’re searching for as well? That we find a place, even if it’s temporary where we’re doing so well that we are in effect able to neuter diabetes? Able to gain empowerment over the terrorizing effects of daily (mis)management and eventually coast along into healthy motherhood, advanced degrees, and athletic achievements?

    On that note– only a small portion of people with diabetes actively do something positive because of their condition (for example, Nicole Johnson getting her DrPh). Unless we get really in people’s faces about how we are doing cool things like becoming therapists or academics or triathletes BECAUSE OF our diabetes, that representativeness heuristic is going to persist. It’s much easier to see the connection between “diabetes” and “kidney disease, dialysis, functional decline” than it is to see the connection between “diabetes” and “becoming a therapist to help others and having a fantastic career.” Let alone everyone out there who kicks butt with diabetes in a totally separate sphere, unrelated to chronic illness. So people make a quick judgment for cognitive efficiency and move right along.

    So I’m not getting too sad about this. I recognize that these are deep, deep cognitive frameworks. But I do definitely want to keep sharing with the world about great things that are happening to PWDs and continue empowering others to get there too.

  2. Shortly after I was diagnosed I was shown photos by an acquaintance who had just been on holiday. Among the pictures was one that included a guy who had had a leg amputated. This was pointed out to me, including the fact that it was because of diabetes. It was quite depressing. Being new to it all, I did not have anything to say, and really wish I had / or did. I really don’t think these comment are made with malicious intent, I think ignorance regarding what diabetes is plays a much bigger role. Education is key, but I think sometimes we also have to remember that to those people not affected by diabetes knowing a lot about it is not going to be a priority. And they will likely only see and remember those things that “stick” – like amputations, blindness, passing out and seizures, etc.

    Sad, but true…

  3. I think you know the extraordinary people because you are part of the DOC. The truth of the matter is, most people don’t have the experience of knowing extraordinary folks with diabetes. The ones you site above are examples of people most people wouldn’t know. I think people share the experiences they have, and you can’t fault them for not knowing the kind of folks you know through your own experience. I’ve had people share both miserable diabetes stories and good ones. I’ve had people who see the positive in me and that I know share both the good and bad diabetes things they’ve seen from me.

    I sort of felt like this post was a bit on the judgey side. Perhaps next time the way to handle the situation would be to say “Do you know any folks who live well with diabetes? I sure do.” And share the stories of folks you know. You can sometimes turn the tide of a conversation by reserving your own judgement and simply sharing something GOOD…

    In the meantime though, cut them a break… ;)

    • I absolutely REFUSE to believe that the “good diabetics” are relegated to the DOC. I know there are more of us out there, and I don’t think it has anything to do with being part of the DOC. Yes, I may know more of them, but that doesn’t mean they are exclusive to having diabetes and being active online. I think what is unusual is the amount of people I share my diabetes with. I talk about it a lot and to a lot of people, so I open myself up to more situations where people tell me about who they know with diabetes. That’s probably why I feel it’s so skewed negatively because I hear those types of stories more often.

      Choosing Seb was probably not the best example, but having a baby, getting a PhD or running a half-marathon are not extraordinary or unusual accomplishments. Awesome? Yes. Unusual? No. So I don’t think it’s fair to say that these things are outliers. I would agree with you and with Caroline that most people just don’t associate these kinds of things with diabetes, and I think that’s unfortunate.

      The point of my post is that it’s sad that the stories people tell me about PWDs are ones associated with negative experiences. I don’t even get a simple “I know someone else with diabetes” — it’s almost always tied with a loss of limb / loss of life / poor control. It may be completely normal and expected, as you and Caroline explain (and I agree), but that doesn’t make me any happier about it.

      I think you make an excellent point that I should have been more proactive in talking about people are doing well, even if it comes of as a little self-serving. Because I do hope that my friends and family, if they ever meet another PWD (and with 30 million, I’m sure they will) they will tell that person — for example, a future Roclave — about me and you. We may not be running across Canada, but we’re running our own lives pretty well. That deserves to be shared just as much as anything else.

  4. Not sure where I implied people successfully living with diabetes are exclusive to the DOC – what I meant to say was you know more of them because you’re a part of this community. And that makes your exposure to positive experience greater than the average Joe or Jane.

    “Choosing Seb was probably not the best example, but having a baby, getting a PhD or running a half-marathon are not extraordinary or unusual accomplishments. Awesome? Yes. Unusual? No. So I don’t think it’s fair to say that these things are outliers. I would agree with you and with Caroline that most people just don’t associate these kinds of things with diabetes, and I think that’s unfortunate.”

    Hate to call you out, but only about 6% of the US population has run a half marathon and only 22% have a phD. These are not “usual” things to do. And the truth is, even the healthiest women with diabetes I know who’ve given birth have done so with some complication. It is unusual for a woman with diabetes to have a “normal” pregnancy.

    And here’s the thing. When I talk to people about diabetes, I don’t make it seem like it would be an accomplishment to do anything I do. I mean to say, the fact that I dance, run, have a great career, etc. are not impacted in anyway by me having diabetes – so I don’t necessarily share that. And if you review the number of blog posts out there that share positive diabetes experiences, you’ll find those are in the minority as well. We usually share, and we usually hear about diabetes when something is annoying, challenging or the like. When was the last time you said to someone “Oh my god, today diabetes has been SO GOOD! Like I’ve been in range ALL DAY!!!” You wouldn’t report that to someone, other than maybe in a blog post (which most people without diabetes wouldn’t read)… You would be far more likely to share what’s challenging – and that’s the common human thing to do. So, naturally, people’s narratives about diabetes are going to tend toward the things they actually see and here – not the hidden “great days” with diabetes!

    Point being, the only way to correct a behavior we find unsettling or annoying is to gently guide the conversation to the positive. Sounds like you will do that next time – which is great.

    • I agree that I do know more of them, but that doesn’t mean that they don’t exist offline or that people without diabetes don’t know these people too. And I don’t expect people to tie accomplishments like having a career or having a hobby to diabetes (and I think you’re splitting hairs with the percentages — these are examples, after all, not meant to be all-encompassing). I’m saying that there are people with diabetes who are doing just fine and that alone is what I hope more people remember. I know that it makes sense that people remember the negatives more easily, but that doesn’t mean I’m less sad that that’s the case. And in addition, yes, I would love for more of us to talk about how we kicked diabetes butt more often, so that these experiences would become part of the diabetes narrative just as much as the negative experiences. I’m not saying it’s weird, I’m saying it’s unfortunate and maybe we should work to change it, even just a little. So on that point we agree (I think?). That’s all.

  5. I think we agree that it would be nice if people tied positive to diabetes – or lives well-lead with diabetes. But I don’t think you can expect the average person to know (given the percentages – the pure math) people who have diabetes and do extraordinary things. And I think it’s very difficult for those without diabetes to relate positive every day experiences – when we, the people with diabetes, who have those experiences, don’t regularly share them… That’s where we disagree. I don’t think it’s a fair expectation to have of every day folks who may or may not ever have the experience of knowing people with diabetes who relate the good things. I do think to combat it, we must try to relate our positive everyday – and extraordinary – accomplishments, without judging those who relate the bad stuff when it’s really all they might know….

    • I don’t have any expectations nor am I judging people for what they know. I don’t expect a non-PWD to seek out this information. Why would they? What I’m saying is it’s unfortunate that that’s all they know or are exposed to, for whatever reason. I’m not sure how I can be more clear on this. As I said at the very beginning, I was not angry with these girls. I was just sad that they only have seen or can recall negative experiences.

  6. You refer to your “rant” which I also read. It expressed judgment… Just sayin… Sure it’s sad, but in all honesty, it’s our own faults. As people with diabetes, we don’t share our positive enough. And I think we don’t because to us (or to me, at least), when I accomplish something (like a day in range or something else) I don’t really publicly tout it – nor do I mention diabetes as a factor… I don’t want people to remember “Oh, she accomplished that even with or in spite of diabetes.” I think for lots of folks diabetes really is “no big deal” unless it’s a big deal (complicating lives or hurting people) – and that’s what people are used to hearing about. For those of us just doing cool stuff – or regular stuff – diabetes is just kind of there most of the time. When it becomes a pain, that’s when we talk about it… And that’s what’s remembered. Sorry I misunderstood your “rants.”

    • Blog posts are rarely sufficient for big ideas. Your comments (and Caroline’s) have definitely helped me think further about this issue, what I can do about it and how to stay realistic. If I was judgmental against anyone, it was against us — or even just me — and just that I felt discouraged by the impression people were getting because I know there is so much more to the stories and I wish others could see what I see. Maybe it’s not realistic, but I’ve always been a bit of a dreamer.

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