How come you didn't tell us about your CF while we were in school?
This is a great question and one I am sure many young kids will relate to.
In elementary school I was not so shy about it. I went to the nurse daily for pills, I got out of gym glass when I got my flu shots (I hated gym lol), and over all I was not quiet about it, but I was not shouting it from the roof tops either. Some of my friends in elementary school knew about it when they slept over because I had weird medical equipment in my bedroom. But other than that I was pretty whatever with it. That all changed in junior high school.
Anyone who knew me in school, whether it was junior or high school, knows I was a shy person. I am still very shy to this day. But now we have the internet. And much like the bullies who can hide behind a computer screen, those of us that are shy in person can come out of our shells online. In junior high and beyond I did not want people to know I had CF. Being unique is not something most kids in school look on with admiration, and while many can ignore that, I was not one of those kids. I wanted to fit in. I did not have very many friends since I started public school in 7th grade and did not move over with many I knew from Catholic school, just some close ones I started to make in my new school. I was far from popular. I was far from athletic. I was artsy and followed that path, but even so I made next to no artsy friends until college. I had enough for the kids to make fun of more for; I did not want to give them any more ammo. Of course hindsight is 20/20 and all those things I thought I could be made fun of for, were probably all in my head. But some were not.
For example, and I remember this like it was yesterday and I still remember the girls who were involved, though I will not say their names (I know their faces not really their names anymore!). In 8th grade social studies I sat near a small group of girls who were friends, and of the popular crowd. One day as I was sitting there doing work (must have been a free period type thing because they were all facing each other) I overheard the girls talking about me. One of the girls was sick with a cold and was complaining how annoying it was. I heard another of the girls respond with “it must have been Amy who got you sick, she is always coughing…it’s gross.” From that day forward I vowed I would never tell anyone about “being sick.”
And I held that promise, pretty much to this day. I am not vocal in person about CF. I will talk about it after people know but I will not come out and say “I have CF” to new people I meet, face to face. If they see it online then the ice is broken and I can talk about it. And I am more than willing to get involved and throw benefits and do walks and educate. It’s very hypocritical I guess you could say. I also don’t like to say the words “Cystic Fibrosis,” I don’t even like writing them. I pretty much use CF for everything.
Similarly, I do not like when people tell people about me having CF. I don’t mind if we are talking as a group and it comes up, but I don’t like when people tell people it to get something. Again hypocritical I know. If a friend/family member/co-worker is soliciting donations for the CFF walk and they say I have CF, I don’t mind it. But if a friend/family member/co-worker uses my having CF as an excuse to get out of doing something or to try to gain something for themselves I don’t like it. Even if it is to try to gain something for me and my family I don’t like it.
So in short, I did not tell people in school because kids can be mean lol.