By: Jacob Greene
Cystic Fibrosis is an awkward disease. Whether it’s coughing attacks in the middle of tests, the infamous CF digestive issues (for professionalism’s sake I will leave it at that, but you know what I mean), or loud treatments in the morning and at night, there are many awkward aspects to cystic fibrosis. CF’s median life expectancy is no different. It’s too large for us to completely ignore future adult responsibilities, but is short enough that we have to deal with the probability of dying young. This, as a result, makes career goals kind of awkward too. Questions like “What types of jobs are realistic for people with cystic fibrosis?” and “Can people with CF really make a difference in the real world?” are forced to be confronted. Between self-doubt and less-than-encouraging responses from other people (including those with CF), we can limit our answers to “desk jobs with good health insurance” and “I don’t know; maybe.”
I wish I could say I am self-confident enough to not give these types of answers consideration, however, I would be lying if I said that was the case. An interaction I had less than one week ago demonstrates this perfectly.
In the middle of conversing with one of my mentors at Fred Hutch Cancer Research Center, a nurse from my CF clinic called to confirm the date/time I would get a PICC line placed. My mentor asked if everything was medically alright and I said “yes” without explaining that I was going to be in the hospital for a tune-up. Of course, it is totally understandable if a person is more private in their health affairs, but privacy was not the reason I didn’t tell my mentor about my impending hospitalization. Rather, I felt shameful for pursuing a career in medicine while, at the same time, so obviously needing medicine just to be healthy enough to pursue a career in it. There is an ideal image of what doctors, researchers, nurses, et cetera look like, and having a terminal illness does not fit that image.
Unfortunately, positive messages about purpose are rare in CF-patient communities. This is a great disservice because it allows self-doubt and stereotypes about who pursues what kind of career & personal-life to drown out what we believe makes life worth living. So, to close, I thought I would share my (honest, but also encouraging) answers to the questions “What types of jobs are realistic for people with cystic fibrosis?” and “Can people with CF really make a difference in the real world?”
In regards to the first question, I truly believe that a person with CF can pursue any job (except one that requires enrolling in the military). Whether you want to be an artist, engineer, athlete, or physician, don’t pay attention to the stereotypes of who pursues those professions. Because of cystic fibrosis, you might have a more difficult journey in achieving your goals, but you will be a more interesting person as a result of that journey. That also answers the second question. Society might not expect much from sick people, but that does not mean you can’t make a difference. Ultimately, people with CF have unique perspectives that “healthy” people do not. The world benefits when our perspectives are shared and when stereotypes are broken. So, as awkward and difficult as CF is, you can make a difference in the world, and I hope that society doesn’t convince you otherwise.