"I Have Cystic Fibrosis"

This post is all about what it's like telling people for the first time that I have CF. I can't imagine what it was like for my parents when I was born, having to tell my whole family that I had CF. No one knew what it was, so I'm sure they were all scared. Even today not a lot of people know what it is, so when I do tell them, I have to also explain what it is. When I was little, I feel like me having CF was kind of "hush-hush" and no one really talked about it except around the times I had doctor appointments or Great Strides walks. As a kid, that didn't bother me, I was used to not talking about it or telling people about it. But as I got older, I felt like it was a part of who I am and I didn't like hiding it from people. When I went to college, luckily I had a roommate who was a friend, so she knew about everything before we lived together; that made it easier for me when I had to do my treatments. When other students visited our room though, my vest was always sitting out (and it was still the huge one) so people would be curious about it. I really like to let people try my vest when they see it for the first time, so they know what it does/feels like...and it's really funny to see their reaction when they have it on!

When I met Tim, I was only a few weeks into my freshman year of college. When we started hanging out more, I knew I had to tell him, somehow, about CF but I was so afraid to. I never know how someone is going to react, so I was nervous to tell Tim especially because I didn't want to scare him away! I ended up telling him online because I was too afraid to do it in person. Of course, doing it this way, I couldn't see his reaction, but I later found out that he looked it up online as we were talking about it. I think it freaked him out a little bit, but it didn't seem to change anything between us. It felt like a weight lifted off my shoulders because then I felt like he knew who I was and I wasn't hiding anything from him. He has been so supportive ever since. He always bugs me about doing my treatments and making sure I am staying healthy. He came to the Great Strides walk with me in May 2007 after we were together for about seven months, and helped me create a team. He told his family about my CF and they were so supportive about it and they donate every year to Great Strides. It's nice knowing that his whole family knows about me having CF and accepting me for who I am.

I've always been afraid that when people find out, they're going to treat me differently because I have a chronic disease. I don't want people to think, "Aww, she's sick, I better treat her nicely" or "Aww, she's sick, maybe I shouldn't get too close." I don't know what people think when they hear I have CF. I'm never going to say to someone, 'Hi, my name is Colleen and I have Cystic Fibrosis.' To me, I'll tell people when it comes up--they see me taking my enzymes before I eat and ask about it, or they're coming over and they see my Vest. Sometimes if I don't know a person too well and they hear me coughing and ask if I have a cold, usually I'll just tell them yes because it's just easier. To me, the hardest people to decide to tell are co-workers. I worked at Menards for a few years and I finally worked up the courage to speak at one of our meetings about CF and Great Strides to try to get more people involved. After that, I didn't notice any difference in how people treated me, and honestly, I'm sure a bunch of people forgot after a while.

Now, working in the school district, I'm debating with myself again if I should tell people or not (the ones who are my facebook friends probably now know from this blog). I was talking to my principal one day (who is amazing!) about taking a day off work for a doctor's appointment and she asked if everything was OK, so I told her that I had CF and that I have to go to the doctor every three months. She was surprised because she had known me for a year and had no idea. She asked a couple questions about how I feel and if I'm doing well and that was that. A couple days later, I brought up the Great Strides walk to her and we decided to involve the whole school in fundraising. A couple weeks ago, I brought it up at the staff meeting and later in the day someone asked me who I knew with CF and why I wanted to raise money for it. I told her that I had it, and again, she was surprised too because this was the school I did my student teaching at the year before and subbed a lot, so I had really been there for a year and a half, and she had no idea either.

It kind of makes me feel good that people can't tell, because that means I just seem like everyone else (who probably just coughs more than everyone), which is what I want. But at the same time, it feels good when people know about my CF because it helps them know me better. I'm interested in what peoples' reaction was when they found out about me, or when I told them. If I didn't have CF, I don't know how I would react if I found out someone close to me had a chronic disease. What did you think when you found out??