Letting Go of People Who Didn’t Accept My CF

When I was in high school, I tried my best to hide my CF from my friends. When this put my health at risk, I knew I had to find friends who would accept me and to become a better advocate for myself.

| 7 min read
Emma Selden Headshot
Emma Selden
Emma Selden in the Hospital

Throughout high school, I was far too concerned with the words “acceptance,” “normal,” and “fitting in.” Like many teenagers, all I ever wanted was to be seen as a typical high school student. However, I was far from that description. Having a chronic illness has given me a fair share of challenges in my life; but none of them compared to what I faced in high school.

CF is a time-consuming disease. Hours of treatments and medications, painfully long doctor appointments, hospital stays for weeks at a time -- and not to mention the mental aspect of the disease all weighed on me. Although many say senior year will be the best year of your life, for me it was quite the opposite. I graduated in 2020 -- the year that changed our world's description of normal. However, my normal was changed well before March 2020. Before the COVID-19 shutdowns, I had missed 55 days of school because of several hospital admissions. Several PICC lines and antibiotic courses later, my team decided it was in my best interest not to return to in-person school. My last day of in-person classes was Jan. 21, 2020.

I felt like I was an outcast; I rarely got to see my friends. But, the thing about friendship is that it changes. One of my groups of friends could not accept my differences. Though they claimed they wanted to support me, their lack of effort had shone through. They rarely reached out or tried to communicate with me in any way. I realized at that point that my time in the hospital most likely never crossed their minds.

I had closer relationships with the hospital staff than with those who I thought were my friends. While I did have a select number of friends who reached out and comforted me during the hard times, most of them did not attend my school or live in my city, so I rarely got to see them. This feeling of being an outcast made me prioritize my social life over my health. This led to me spending even more time in the hospital than I could have imagined.

I was so scared to be different that I would keep my hospital stays a secret, hide my PICC lines under sweatshirts even if it was 80 degrees, and overall act as if my CF did not exist. The problem with doing that is I was hiding a major aspect of my life.

I put my health at risk just so my “friends” would think of me as normal.

College came around and although I had been taking online college courses throughout high school, I was still eager to meet new people who would hopefully accept me for who I was -- CF diagnosis and all. But my first year of college was nothing like I expected. Because of COVID-19, all of my classes were online, I stayed in the same town that I grew up in, and I met absolutely NO ONE in my classes. This pushed me deeper into my feelings of being abnormal because I would see my old high school “friends” off at college, meeting new people, and staying in dorms. I was devastated. Why do they get to experience life while I'm stuck in my room staring at my computer screen?

It wasn't until this year where I finally had my first in-person class since January 21, 2020. I was a complete mess of emotions and had so many thoughts going through my head: “Is this going to be like high school?”, “Are they going to exclude me from cliques?”, and finally “Is my CF going to change their impression of me?”

Since I am a nursing student, my classmates are all people who are interested in the medical field. This made coming out to them about my diagnosis much easier, and I was able to do so much sooner than I ever had before. I was finally in an atmosphere where I felt that I belonged. CF was not weird to them, but rather interesting. I finally found out what it was like to be considered normal when I live an abnormal life. Being around other people interested in the medical field made me comfortable because CF is all I've ever known. It was just like talking to the hospital staff who I am extremely close with, however, this time they were students just like me!

While it seems like this story has a happy ending, where I tell you that all my self-conscious feelings about CF went away once I found the right people to surround myself with, that wasn't the case. People with a chronic illnesses will likely relate to wanting to be accepted, feel normal, and fit in. Instead, we must learn to embrace who we are because that is the only way to ensure that we have found good people in our lives. I learned to embrace CF by not hiding my time spent in the hospital. I now openly tell people and I Snapchat them pictures of me being in-patient, which I would never dare to do in high school. I also now show off my PICC lines and soon-to-be port. Although showing off a foreign object placed in your body can be embarrassing, I just tell people that it is there to improve my health and I'd be worse off not having it.

Lastly, I have been working on advocating more for my cystic fibrosis. In high school, when I was still mostly hiding my CF, I posted about CF on my Instagram time after time, but always deleted the post out of embarrassment. I wanted to advocate for myself, however I was fearful of the judgment I would receive. I now want to post openly about my disease, and I will continue to work on sharing my story.

Writing this blog post is a major step for me and I hope that instead of worrying what others think, I will feel a sense of relief and that maybe my story will have an impact on a fellow cystic fibrosis patient or even someone with a different disease.

I refuse to ask myself the questions of why: “Why me?”, “Why do they get to be normal?”, “Why can't I live more like they do?”. Instead, I think about a quote that my mom shared with me during one hospital stay when I was in the intensive care unit.

“You were given this mountain because you are strong enough to move it.” The feelings of confidence and hope I get from hearing people describe my life with that quote is like no other feeling I have had before.

Instead of hiding my disease, I can show my strength by advocating for not only cystic fibrosis, but also for myself. I am strong because I have been through a heck of a lot, and I am still fighting. CF does not define my life, but it is an important aspect of it that I am continuing to learn to accept and share with the world!

Interested in sharing your story? The CF Community Blog wants to hear from you.

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Topics
Emotional Wellness | Social Life and Relationships
Emma Selden Headshot

Emma is an adult living with cystic fibrosis. She is a barista at the local Biggby and a nursing student at Lansing Community College who hopes to one day become a certified registered nurse anesthetist. Emma is an active advocate for cystic fibrosis and has a CF walk team called Hope for Sam and Emma, named after her and her sister, Samantha, who also has cystic fibrosis. Emma lives in Portland, Mich. with her parents, Jamey and Michele, as well as her dogs, Ozzy, Dixie, Sassy, and her cat, Frankie. Follow her on Instagram.

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