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I'm a glass-half-full type 1 diabetic/celiac with a C5 spinal cord injury and life-altering allergies. I was diagnosed with type 1 diabetes, grave's disease and celiac disease in 2010, a spinal cord injury resulting in a spinal cord fusion at the C5 level in 2012 (resulting in chronic pain and life-long physical restrictions) and bad ass allergies in 2013. I believe having a positive attitude is the only way to live with disease and injury. I also believe that life doesn't have to be PERFECT for it to be WONDERFUL. Disease and injuries are expensive, so I live a frugal yet full life (I'm a fru"GAL"!) Please know I am NOT any sort of professional and am not giving professional advice. This is just my blog; my day-to-day story.

Friday, November 16, 2012

A disease hypothetical question?

There are questions about my diabetes and celiac disease that I inevitably get asked.

When people ask you how "your diabetes is going," how do you answer? When someone new finds out I have diabetes, I am ready for three questions that inevitably follow- the first question usually involves the amount of time I've had it ("did you get it as a kid? how long have you had it?"). The 2nd question evolves around diagnosis ("how did you know you had it?" "what were your symptoms?" "does it run in your family?") and the third question is always the one I dread the most- it evolves around how my diabetes is being managed ("how's the diabetes going?" "is it well managed?"). When people ask that, especially someone you don't know well, how do you answer? Do you give them the dirty low down details? Do you breeze over the question altogether? There's this balance I always want to strike when answering that question; I want people to know the level of dedication it takes to manage this disease, but I don't want to terrorize them, either. I feel in the past, I've done both. I've sometimes glossed over the question with an answer like "Oh, it's going fine" and other times I have given TMI and you can see the confusion/horror on their face. So then I realize I wonder if that 3rd question is actually just a hypothetical question, to be polite? Maybe it's a question like "How are you doing?" The type of question that people don't realllly want to know that you just got dumped, your dog is sick, your car broke down, fill in the blank, etc. They just want you to say "I'm doing fine, thanks for asking," so they can move on to their next task. And then there's the task of deciphering who wants the details and who doesn't. I'm guessing the sales clerk at Macy's didn't want to know about your blood sugar issues when she asked you how your day was going.

I was asked this question by my manager when I told her I had diabetes a few weeks back. I wasn't sure how to answer- I didn't want to scare her with details that might make her think I was going to be a "problem" employee, but I also didn't want her to think it was a breeze and would never interfere with my work. Taken off guard, I think I leaned toward the side of having her believe it would never be a problem, out of fear of being a new employee and worried what she would think of me. Diabetes makes me very self-conscious.

I wish I didn't care what people thought. I wish their assumptions didn't hurt. I wish I had a disease I could keep to myself and not tell anyone about. But that is not the case.

Usually my celiac disease diagnosis is a little easier to hide, at least from strangers. People won't usually find out about it until there is a food-related event, and even then sometimes you can get away with not mentioning it if you don't want to. Until you go out to a restaurant and grill the poor waiter about ingredients, food handling and cross contamination. Celiac disease is difficult to answer questions about. The hardest question I get is "What happens when you eat it?" The reason that I don't enjoy answering this question is because there is no polite way to describe the digestive symptoms it causes. I'm not one to blurt out to strangers "Oh, it gives me the scoots." Nothing like telling a stranger about your bloating, diarrhea and gas problems. I try to glaze over the gross parts and focus about the damage it causes to my small intestine.

At the same time, when I am asked questions about one of my diseases, I don't want to miss an opportunity to educate someone and give them the CORRECT information about the disease, versus the stereotypes they'll likely hear later.

9 comments:

  1. I often say that each and every day I'm walking on a tightrope trying my best to balance everything. But even that doesn't seem right/appropriate most times.

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  2. And you look so badass in the muscle flex picture! You go!

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    1. Aww thx for the support! You are an awesome friend!!!!!

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  3. Here's a scenario: There is a box of doughnuts on the table at work, and I'm trying to watch my calorie intake. I say something like, I sure don't need the doughnut today. It never fails. Someone will always pipe up. "you sure better not touch that doughnut mister. You're a diabetic." Usually, it's someone overweight who probably powered down three bowls of Lucky Charms before work.

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  4. yes yes yes.
    I get asked the "how's the diabetes lately" question from family and close friends. I get why they're asking it but it still stings a bit. It's not an easy question to answer. It's not like I've had the flu and I can say, "getting better". I usually respond with a wishy washy answer like "oh y'know good and bad, never perfect"

    the celiac thing... that bothers me. Yesterday in an office lunch meeting they ordered pizza. I usually disappear and go back to my desk but I was stuck in the back of the room so I started making notes on what I wanted to do for the week. Someone said "Oh you don't eat pizza because you're healthy" and I roll my eyes and say, "No I like pizza but it has gluten in it" these are people I've worked with for years. You'd think they'd remember. Nope. they just assume I'm being snotty and a "health-nut".

    hmm.... blog post coming on.

    I second Scott too.... AWESOME PICTURE UP THERE!!!! it was the first thing I noticed!

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  5. Great post. I deal with this on the D questions all the time. I finally had to come up with a stock answer that I rattle off so I don't have to think about it or deal with the emotions that it seems to kick up (which I don't understand). Thanks for sharing.

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  6. I love this post. I am glad Scott brought it to my attention. When people ask me how (my son's) diabetes is going, I never know what to say. Or what to say to the person with the the heavy-eye-contact, "How's he doing?" I mean, I know to not go into a lot of detail, but the PLACE that this question is COMING FROM is so confusing. It makes me feel like *other* diabetes parents probably reach some kind of coasting/plateau where everything's fine. After 14 months, I have not yet hit that part of the ride. Your post made me feel normal in the loveliest way.

    I think you are right. People just want to know that we are OK in a general way, so they can get credit for caring about us and move on. That sounds bitter--but I just mean--they want to interact in a human way, not a medical knowledge-y way.

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  7. I would probably just answer that question with "I'm doing the best I can." It doesn't exactly answer the question, but it does somewhat suggest that "if you really want me to tell you, sit down and I'll brew us a pot of coffee". Then you can gauge how much interest is really behind the question.

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    1. Oooh I like that response, Scott! I will definitely try that one out. I like that it kind of give people options. Good idea!

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