Saturday, July 16, 2016

Being The Trigger

"Do you have diabetes?"

As a question from a stranger, it's way too personal. But as it was a conversation that I just fell into and as we were both talking about general health and wellbeing, it didn't seem out of place, or out of context, so I answered that I did indeed have diabetes. I am no longer insulin dependant, because of the diet and exercise program I've had myself on for several months, but yes, I have diabetes.

It was then that I remembered why I don't like telling people this fact.

Everyone has a story about diabetes, it seems. And every one of those stories is a horror storry. She, my conversation partner, launched into a very detailed story about her sister in law who has diabetes and stubbed her toe.

"Just stubbed her toe, a silly little thing like that."

Boom Boom Boom, it's coming, Boom Boom Boom.

"And three months later she lost her foot."

From that she went to a huge generalization, "People with diabetes just don't take care of themselves."

I called her on that one.

But, here's the thing, why would you just automatically tell someone, who has any kind of illness or disease the most outrageous and tragic (in your mind) story you have to tell about that diagnosis?

My response was, in my mind, 'shit why did I tell her.'

I have heard, when telling someone about having diabetes, about lost digits, lost limbs, lost mobility, lost lives. Yikes and double yikes, it's like every story I hear is about this Boom Boom Boom tragedy that lurking around the corner waiting to strike me. And, I kinda know that might be true, but I don't need to hear it every single time I mention that I've got 'the sugar'.

In fact, when I was telling a group of friends about this experience and complaining about always being told a tragic story when mentioning the diagnosis, one of my friends jumped in with a tragic story about someone losing a leg. Right. Yea. Glad you were listening.

Does that happen to anyone else? Are you the trigger for a 'tragic story' to be unfolded on your lap?

Sheesh, I'd like to hear once, just once, about some who has diabetes and 'you know is managing pretty well!'

Right, in my fricken dreams.


Jenni said...

Very often when I tell someone I have ME (aka CFIDS / SEID / CFS / PVFS) they tell me they know of someone who had ME, and they got well. This is for a condition with a current recovery rate of about 5%, which is mostly people who get it as children, not as an adult like me. That recovered 5% must know a heck of a lot of people and be constantly talking about their recovery!

It feels like the underlying message of the 'my aunt's friend's cousin had ME and they recovered' (perhaps with additional details of 'how' they did it) is either:

- positive interpretation: "don't give up hope, you might get well". The problem with this is, for the 95% who won't recover, this could have the negative consequence of discouraging them from adapting their lives to manage their condition, if they believe it's only temporary,


- less positive interpretation: "if they got well and you didn't, you must not want to get well / not be trying hard enough".

So if it's any consolation, you're not alone in finding that one of the most common responses to disclosure of your diagnosis is an unhelpful one.

Kit Luce said...

Well to be your first I do know more than one person who has diabetes and is managing just fine and doing well.
We seem to like to tell horror stories. I've noticed a similar phenomenon when someone us pregnant, especially for the first time, people seem to delight in telling horrendous pregnancy, labour and delivery stories.

Alicia Butcher Ehrhardt said...

I'm glad you're managing your diabetes, and your program of diet and exercise is working for you. I understand there are useful things you can do for yourself, and I'm glad you're finding the energy to do them.

This - jumping in with a worse story - is endemic. I don't know why people do it. Maybe in a blog post like this one, you're considered to be inviting similar stories.

But on other occasions, almost anything will set people off. Getting a divorce? Theirs was worse, and the custody issues were the worst ever. Have cancer? They know someone who died of the exact same kind very quickly - or fully recovered by doing X.

I think people have a hard time conversing - and this jump-in method at least covers the awkwardness of finding a topic for a good while if we're all allowed to pull out our stories and throw them in the pot.

But it's wearying to know that's coming if you open your mouth.

Kristine said...

I know several people with diabetes, and most of them are managing pretty well. Doesn't make much of a story, I guess. :) Most of the people I know with diabetes, however, are healthy people who do a much better job taking care of themselves than I do, so that stereotype especially bothers me...

I'm a racism trigger. (Not something a lot of white girls can say!) As soon as people find out I teach ESL, and which cultural groups I mostly work with, it's like their true colors come out immediately. We're either about to bond over our shared love of diversity, humans, culture, and language.... Or I'm about to get an earful about how people need to immigrate "the right way" and "learn English if you want to live here." I get the strangest questions sometimes, where they're clearly looking for me to confirm their favorite biases.

I'm proud of the work I do, and I love the kids and families I work with... But I often cringe when telling people about it, because I'm afraid that it's going to be a racism trigger moment. I don't want to listen to that! And I think it's crazy that people expect me to listen and agree with them!

Liz Miller said...

My grandfather had it. Lived to be 97.

nightengalesknd said...

One thing about diabetes is that everyone thinks they know something about it. There are so many people out there with diabetes that most people have a relative or friend with it. And then they move to the idea that one experience must be the universal one

I have the opposite problem. I don't get the diabetes "horror" stories. I get the "someone I know exercised and doesn't have it anymore, yay willpower!" irrelevant inspiration stories. I have Type 1 diabetes where no amount of diet changes, exercise or willpower will prevent me from needing insulin forever. They also either assume I can't eat things I can, or try to get me to eat things that I shouldn't. What they never seem to do is assume that I know the most about managing my own body.

Celine said...

Dave, lots and lots of people are doing just fine with The Diabetes. I assure you. I know lots of them.

And yes, I get the horror stories all the time too. I do my best not to roll my eyes and, instead, use it as an opportunity to chat about diabetes (types 1 and 2). I take all of the misconceptions, put them on the table, and take aim.

Type 1 diabetes is just for kids. Nope. Type 2 happens only to adults who are overweight and don't take care of themselves. Not even close to the truth. Having to take insulin means that you have it really bad. Not true. I ate well and started exercising but my blood sugars are still high. I am a failure. Nope - you're a rock star! Being on an insulin pump means I am really out of control and not taking care of my health. Yeah right. Let's go for a long run and you can tell me how unhealthy I am.

I also enjoy challenging the idea of 'control'. 'Are your blood sugars under control?' asks every single medical person I ever meet. My answer is always 'define control'. That usually results in a long chat about how the concept of control leaves most people feeling guilty because they can't possibly attain it and they think it's their own fault. I tell each medical person that they should toss out whatever medical textbook told them that people need to keep their blood sugars within a tight range at all times and learn what diabetes is actually like. I tell them to ask 'what is your last A1C' to get a sense of the person's average blood sugar but asking 'are you under control' only leads to feelings of guilt, lying and hopelessness and it's a load of bull anyway. Aiming for perfect control isn't realistic. Aiming for better numbers is.