Being a woman in today's society is hard. There is an expectation that you need to be smart, pretty, well read, in shape, have a successful career, raise a family, have good fashion sense and apply winged eyeliner flawlessly. Being a woman in today's society is even harder when you feel held to all these standards as you simultaneously struggle every day to control your coughing attacks in public settings, fit in daily breathing treatments, regulate your sensitive digestive system and try to just breathe.
I was diagnosed with cystic fibrosis when I was 2 years old, so it's been a part of my life for as long as I can remember. But growing up in a small, wealthy town where everyone was expected to maintain certain standards of conduct, there just wasn't any room for being “different.” If you ever found yourself standing out, you were sure to become the talk of the town.
Since everyone in my graduating class knew each other by name, I'm guessing that everyone knew that I had CF. But it was never discussed. Rarely did anyone bring it up to me or ask me any questions, and that was just the way I wanted it. I wanted people to see the “normal” side of me. I wanted them to see me as the happy, smart, athletic and fun girl that I had worked so hard to make myself out to be so that I could fit in.
I didn't want them to see me running extra miles after practice so that I could try better to keep up with my teammates when my lungs just wouldn't let me. I didn't want them to see me exhausted and struggling to focus in class because I was up all night with a particularly bad cough. I didn't want them to see me taking enzymes before I ate so that there wasn't any obligation for them to ask about them and create awkwardness. And I certainly didn't want them to know that I had cried myself to sleep on the night of my eighteenth birthday because I had googled the average life span of a person with CF and realized that my life was probably halfway over. I didn't want to stand out for being different.
But when I went away to college, everything changed. Suddenly I was in a huge school in a major U.S city where I didn't know a soul and no one knew me. No one knew that I had CF, and this time no one had to know, unless I told them. I decided to join a sorority because I wanted to meet new people to do things with around the campus and city. Going into recruitment and getting to know the girls of all the different sororities, I didn't mention my disease.
I didn't want to be remembered as the girl with the weird disease that's kind of hard to pronounce, so I just didn't mention it.
After weeks of meetings and learning more about my sorority and my soon-to-be sisters, my pledge class had a particularly touching night where we all opened up about ourselves and who we were. This was the first time that I had ever openly discussed my disease outside of my doctors and family. I remember feeling so nervous. My palms were sweaty and my voice was shaking. I was so worried that these girls would think differently of me or think that I was just trying to get attention and sympathy. But once I opened up about it, I received a truly warm and understanding reception by my incredible sisters, and I felt a huge sense of relief. I didn't realize it, but by trying to hide my CF and live up to other people's expectations, I was really only hurting myself. No one thought less of me for having CF.
Opening up to this group of girls was the best decision that I ever made. They accepted all of me, not just the parts that looked good, and they gave me the confidence to be able to open up to others about my disease.
Post-graduation I started my first job and decided not to tell my boss or coworkers about my disease right away. I just didn't feel the need to. However, soon afterwards, I got very sick and had to take some time off to get a PICC line put in. When I went back to work, I immediately told my boss and coworkers that I had CF and was going to do medications throughout the work day. And this time, I didn't have sweaty palms or a shaky voice.
