You never notice how much you cough until you’re surrounded by people who aren’t used to it. Being in a new office, where I come into contact with new people, my cough has become an object of discussion. I have always been very open about my CF, and in the workplace I have stuck to that for the most part. It has payed off very well because you meet people who are so understanding and who are so supportive. Best of all, it is great to be able to be an example of someone with CF who is thriving and living her life. After all, the image most people have of CF, while valid in most respects, is not the image of all CFers, so it is great to raise awareness that it is possible to live a healthy life with this horrible illness.
I have three examples of how being open about CF has been an amazing decision. I am humbled to work at a company that has been so supportive of my cystic fibrosis. Once my boss asked me a few days in about my cough, I was open and honest about my CF. Since she has been a nurse, she understood exactly what it was and we had many discussions about how important it is to take care of yourself and live your life and of course, to be positive. Soon, another co-worker learned of my disease when she asked about my cough. Coincidentally, she had agreed to sponsor a CF Golf Tournament for one of our clients. Once she heard I had CF, she had even more reason to sponsor this tournament.
I got to volunteer at the tournament because I was the only one with CF who was there. Not only did I feel an immense sense of community at the golf tournament, but I felt an enormous amount of gratitude for all of these people who were supporting the CF Foundation who didn’t even have CF themselves. While there, I was able to talk open and honestly about my CF with some of the other people from my company. We spoke of how many strides the CF Foundation is making in fighting CF. I got to brag “look at me! I am this healthy because of the advances of the CF foundation! THANK YOU for supporting this cause, it means a lot to me.” I felt so much support from my co-workers and felt so blessed to be sitting there amongst all of these generous donors who held the cause so close to their hearts. I met people who had family members who passed away from CF, but who continued to volunteer and raise funds for CFF. It was them who inspired me the most and who filled me with the most gratitude. They lost someone with CF, yet they are adding years to the lives of people like me by their efforts. It filled me with thanks, and joy, and so much appreciation.
And then there’s our mailman. He is everything you want in a mailman, he stops in to chat, cracks jokes, calls you by your name, asks you about your weekend, and remembers what your plans were. I have grown very fond of him and I look forward to him whistling in the hallway as he sorts the office’s mail. A couple weeks ago, he started noticing my cough. He asked a couple of times if I was okay, that he heard my cough from the hallway and it didn’t sound good. For some reason, I brushed it off. I just told him allergies were horrible… and then, another day, he asked again. So I told him I just cough a lot…. Concerned, he asked again on yet another day so I told him I have some lung problems. And finally he said… what is that cough? What are those lung problems? So I told him, “I have cystic fibrosis.” Being such a caring guy, he immediately got “the look,” that look people get when you tell them you have something that they have probably heard is deadly. He looked concerned, afraid, he started to get a little hint of pity. But I smiled and I told him “I’m okay. I’m really healthy. I do really well with it!”
And the next day, he came in smiling, asking me how I am, just like any other day. To be treated the same, despite this scary realization by the mailman, is so meaningful. Sometimes, it helps for someone to get to know you before they know your disease. It is so great to be seen as Lauren, the girl at the front desk, rather than Lauren, the girl with the deadly illness. I love to be able to just be me sometimes, without the stigma of a chronic, life-threatening disease. I appreciate our mailman for still treating me like Lauren, even though I know his new knowledge of me might scare him a little bit.
And then, today, a woman who works in the office next to us approached me. She said “Can I ask you a question?” And I knew it was coming. She heard me tell the mailman that I had CF, and she was so astounded at my health. “But you run and stuff, don’t you??” (She knew that I run Falmouth because we talk about it a lot, given that her family has a house there). I smiled and bragged “Yes. And that is why I am so healthy!” She had heard of CF because she knew she was a carrier, so when she went to have a baby she had researched it (thankfully, her husband is not a carrier, so her baby will be healthy). But I know how scary CF can seem to someone who just googles it. They hear the bad stories, the dying children, the difficult life, the short life expectancy. And while these are very true realities of CF, it was amazing to be able to show her that that isn’t everyone’s reality.
When I was at the CF Golf Tournament, myself and another volunteer had a discussion about the different “generations” of CFers. We talked about how there were children in the 1800’s who died when they were just toddlers of “pneumonia.” And then there is the generation who died years ago, who were very young, and who were never expected to make it to my age. We talked about how there are people like me, who had The Vest almost their whole lives, who had better antibiotics, who had better therapies, and who were encouraged to exercise, who are living somewhat healthy lives with a few bumps along the way. And though we might not make it to 80 or 100… we’ll have pretty sweet lives with the time we are lucky enough to have. And then there are the CF babies and children now… who will probably faire even better than my generation. I told her how much hope I have that CF lives will get healthier, how I am proof of that.
I can have CF and work a full time job… and live my life just like any other 23 year old. I can tell my mailman that, yeah I have this illness, but right now, I’m okay. I can tell my office-neighbor that CF babies will probably have healthy lives, that this young “healthy” girl has a “horrible” disease and is living and breathing a wonderful life. I can sleep soundly knowing that tomorrow is another day I can tack onto my lifespan, and I can have hope that there will be many more tomorrows filled with more easy breaths than cough-filled ones, and I can have even more hope that other CFers lives will have many more tomorrows too. This past week, I have felt incredibly blessed thanks to supportive, understanding people, thanks to the hard work of the CF Foundation, and thanks to being open about cystic fibrosis.
