My eyes darted down to the little bag of pills in my pocket as my hand slid into the Ziploc® and grabbed five pills that I quickly shoved into my mouth as another freshman walked over to my table at orientation. I would replay this experience over the first couple of days in the dining hall as I struggled with how to have cystic fibrosis in public while in a new environment at college.
I am now a junior in college and I am fortunate to have a great group of friends who all know about my CF and are supportive when I am late to the dining hall doing therapies, or need to run back to my dorm to grab a pill. When I first moved to college, I left behind an environment in which classmates, teachers, and parents knew about my CF and stepped into one in which people might not even know what CF is. I was aware that the people in my dorm were going to know I had some kind of medical condition. I was a freshman in a specialized upperclassmen dorm and cleaned my nebulizers in the kitchen. CF was public in some ways, but ultimately my CF was still invisible to those around me. The contradiction of these two ideas meant that people might begin to assume I had a medical condition, but it was all up to me when I disclosed just what my medical condition was.
When I first started making friends at college, I was worried that if I brought CF up at the wrong time it would make it seem like I was oversharing or bringing the mood in the room down.
Living with CF, I created a relationship with medical problems, but I worried that I could overwhelm new people if I shared information about my disease with them. It was not until I had become close with my friends that I told them that I had CF, what it was, and what my daily treatments are.
Since I have been fortunate to maintain good lung function for much of my life, the first thing I always want to do when I tell people that I have CF is assure them that I am healthy. It is scary to tell people that you have a disease that they can quickly look up. Depending on the source, they can find life expectancy numbers that may shock them. Because I don’t want people to look at me any differently after I disclose CF, calming fears right off the bat has always been my automatic response.
As I have shared more openly and extensively about my experience living with a chronic illness, I have realized that quickly trying to calm any fears or assumptions is often unnecessary. Yes, to a certain extent, making people feel comfortable with my condition may keep them from being overwhelmed, but I need to have people in my life whom I can talk to about the scary things in my life. After being diagnosed with CF at age 9, I coped by leaning into the fact that I had not needed to be hospitalized for my lung function. But, as soon as I had an exacerbation, I did not know how to process my decline in health. Similarly, downplaying my CF to my friends in college could lull them into a sense of comfort that could make it hard for them to process any future serious health problems I may have.
Each person may have a different level of comfort with sharing details of their CF with the people in their life. But, be sure when you are disclosing your CF to new people that you are making yourself the most important part of the equation.
Try not to worry about placating the emotions of others when it comes to your medical experience. When you begin college, you are meeting people and creating a new routine, and how you want to fit CF into your new world is completely up to you. Find the people in your life you know will help you with that transition and don’t feel pressured into disclosing anything that makes you feel uncomfortable. You can tell people right away or wait longer, just be sure to center your own needs and feelings in that process. The real friends that you make at college will support you and do whatever you think is best when it comes to you and your CF experience.
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