22 March 2012

Outing

In some respects, I think I have a unique perspective on disclosing health issues. I have more than one health issue to disclose, and I've watched my older brother and younger brother both deal with disclosing.

I do want to say, first and foremost, that every person has the choice, and it is their choice. At no point should anyone be forced to disclose health issues or be silenced about their health issues.

Since this is the internet and there is some veil of anonymity, I would like to share my side of my sibling's and my disclosures, without going into too much medical information.

My older brother was diagnosed as type 1 when I was in second grade. He was in fifth. (For those of you trying to figure out ages, I was 8 and he was 11.)

I remember him being terribly sick for weeks. He was in DKA. No one in my family history has had type 1, so they weren't looking for it. They thought it was the flu. I remember watching him waste away on our living room sofa.

I remember, being 8 and having absolutely no clue what anything was, asking all the stupid questions and being a general annoying younger sibling, secretly worried about him. I remember when he was well enough to go back to school, and everyone knew. There were many people with similar families to mine--one child in my older brother's grade and one child in my grade, so news spread amongst siblings.

I remember this, because I remember having other 8 year old kids come up to be and tell me that it was my fault that my older brother was so sick, that God was punishing him because I was such a terrible 8 year old.

My older brother hates to disclose, because these are the types of responses he normally gets. It's your fault. God is punishing you. You must have done something terrible to deserve this. The fact of the matter is not a single entity on this planet is responsible for his diagnosis.

Flash forward a few years. I'm in seventh grade (13), my older brother is in tenth grade (16), and my younger brother is 2 (he's a caboose!). My parents knew that something was wrong when I drank a gallon of milk and a whole thing of apple juice in about an hour. Looking back, they should have enrolled me in gallon challenge competitions. I could have kicked butt.

At that time, I looked back at my older brother's diagnosis and the backlash that we both got. I was absolutely terrified of what my classmates would say. And, almost like I'm a psychic, I got the same responses as my older brother. It's your fault. God is punishing you. You must have done something terrible to deserve this.

I knew better. I'd been watching my brother and knew the basics. I knew it wasn't my fault. I mean, I was the weird kid in the grocery store begging my mom to buy broccoli and veggies instead of candy. But it still gets to you. It's hard not to start hating yourself when your so called friends don't stand by you and tell you you're a terrible person.

I met some awesome friends later, and they have been super supportive through the years, but my past experiences have always made me wait to disclose.

I remember in high school having teachers (and peers, but I honestly didn't expect much from high schoolers) say really stupid things to my face, because I was seen as "less than" because of my health issues. My AP Physics teacher, whom I adored, told me he wished that he could lower my grade in his class because I was missing so much school. I thought about it, and logically, if I was doing just as well or better than my peers even though I was missing "half the classes", doesn't that mean I'm doing super awesome? If I got an "A" by the curve standards even though I had been missing class for doctor appointments, don't I still deserve that A? Apparently he felt the need to tell me that I didn't and that my "stupid 504" was protecting me.

I remember in college sitting in classes. At the beginning of each semester, instead of looking over the syllabus and eagerly reading the text book, I was analyzing the teachers and my peers. Should I tell them? Do they deserve to know?

I ended up telling many professors in my department, mainly because I was dealing with them constantly, and it's kinda hard to hide checking and bolusing in the lounge.

One day in our lounge, there were a group of my peers talking, and I decided to join the conversation. Apparently, in hushed tones, "There's this diabetic chick in the ECE department." I guess I had escaped them knowing. I got really wide eyed and said, probably a bit too loudly, "THERE'S ANOTHER ONE? WHERE?!" and I started looking under tables.

I know. I'm hilarious.

There were a few of the annoying questions, which I tried my best to not be snarky. I guess since these people had been around me for a few years, they realized that I know what I'm doing, especially since I kicked a few of their butts in grades.

I remember going to parties where we'd eat pizza and play board games. Of course, because pizza, my nemesis, I would check and bolus and check again and bolus again. So, naturally everyone at these shindigs knew. Instead of asking me questions, directly, though, they'd ask my husband. He told me the questions they asked, and I'd answer them so he would have answers. At one point though, I told him to tell them to just ask me the questions, because this was a very roundabout way of asking me, since I was answering them anyway. It's awkward when people talk about you behind your back, but I'm thankful that I didn't get all the really stupid comments, which I guess there were a number, including things about cinnamon and tea.

All this boils down to these questions:

Will I tell my employer? Definitely not at first. Will I tell my coworkers? Definitely not at first. Will I tell my friends? Definitely not at first.

Even though a lot has changed in the nearly 15 years since my older brother's diagnosis, I still have those old memories of disclosure race through my mind, and I ask myself Is it worth it? Do you deserve to know?



This post is my March entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2012/march-dsma-blog-carnival-2/

2 comments:

  1. Oh how I hate the blame game - and I especially hate that the bullies tried to say your brother's diabetes was your fault. :( I'm so glad you were smart enough to know better. I think you are strong and amazing!!

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  2. Yeah, the blame game is terrible.

    Thank you for the compliment and comment! :)

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