Opening Up About My CF

I spent most of my life hiding the fact that I had cystic fibrosis. It was only when I fully accepted that CF was a part of me that I quit my self-destructive ways and began to enjoy life.

Feb. 3, 2021 | 6 min read
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Micah Baker
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I'm 32 years old, and I have cystic fibrosis. I was never open about it until about two years ago. Only my family and a couple of close friends knew of the diagnosis I have had since birth. Only when I had to be hospitalized or do IV antibiotics in my car on my lunch break did my places of employment even know. I love the TV show “Dexter,” so to put it into that context, I will call CF my “Dark Passenger.” Like Dexter's Dark Passenger, it was something to me that was just so unspeakable and hideous. I hid it from everyone for so long because I was embarrassed by it. It made me feel less than normal, sickly, gross, angry, sad, and extremely self-conscious.

Cystic fibrosis was something I couldn't avoid, but I felt like it was definitely something I could conceal, which was my way to “control” it.

 

Hiding CF during my childhood was like the stages of grief. I was denying it, even though I was still very compliant. I would deny anything was wrong with me physically. In my late teens to early adulthood came the anger, bargaining, and depression. I was angry that I had to deal with something no one else did, and the fact that no one saw my struggle made me feel incredibly isolated and alone.

I did all kinds of self-destructive things in my early 20s, determined to live 0-100, hoping that my recklessness would get me before CF did. I wanted to be left alone so people couldn't get to know me, but I didn't want to be lonely, if that makes sense; so any kind of inebriation was the key to hiding inside of myself. I liken it to the whole “Wow, he was such a fun, funny, and nice person, I would have never known he struggled with that” persona. It was so perfect and so numbing.

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When I hit my lows between the highs of partying, I experienced the bargaining and depression — bargaining with God to turn things around and be better if I could be promised a longer, healthier life. Naturally, depression followed because I didn't even know what I would spend a “longer, healthier life” doing (and as a matter of fact, I still don't know).

Then one day out of nowhere acceptance came — so cliché — but it was like someone flipped a switch. That someone to me was God, and his word was simple: “Get busy living, or get busy dying.” I did just that — I stopped self-destructing, partied less and smiled more, and actually got married. Everything from that point began to open up and become much brighter even when my health wasn't so great.

It was when I turned 30 (wasn't supposed to live past 2 years old) that I became proud. I felt strong, healthy, unique, wise, tough, deep, insightful, happy, and whole.

 

I also made friends with others with CF, something I never wanted to do ever. I found out how quickly I absolutely adored and loved my friends with CF. They are that piece of understanding — a struggle very few can relate to — that I was missing my whole life. From discussing test results and workout regimens to laughing at incredibly stupid things, they are wide and well-rounded friendships.

At a really young age, I lost my first CF friend, my hospital buddy — we were always in the hospital at the same time and played together (before Infection Prevention and Control Care Guidelines prohibited this) — so I never wanted a CF friend ever again. Well, when I opened my heart to it again, I had another friend pass away. This time it fueled me to take every opportunity to further awareness and research for cystic fibrosis. I signed up for every study my doctor told me about, and I joined the Cystic Fibrosis Patient Advisory Board at the University of Texas Southwestern Medical Center in Dallas.

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I was offered the opportunity to be an honoree for Dallas Finest 2020, an event to honor young professionals raising money and awareness for cystic fibrosis. I'm proud to see my face and name on this billboard with the words “cystic fibrosis” next to it for everyone to see and read. It reminds me of just how much I can impact my community, even when I don't feel like I'm doing anything because I'm not a doctor, a nurse, or a researcher. But look at where I am — one patient out of more than 70,000 worldwide with the burning desire to see CF stand for “cure found.” Because of wonderful and generous donors, doctors, nurses, respiratory therapists, researchers, and the whole medical community, I believe along with all the other CF fighters that we will see this day.

I will continue to bring awareness and do what I can for the ones who fight alongside me and the ones who have gone before me. I'd like to encourage others struggling with being open about CF — or anything for that matter — to think and get outside of yourself and just imagine how many people are waiting to hear or read about your struggle in order to get power over theirs.

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

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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I am a 32 year old, living a great life in Dallas with my wife, Laura, and our cat baby, Hugo. I work full time for Firewheel Christian Academy as the marketing director. When I am not working, I enjoy jogging, watching Netflix, and spending too many hours on Vogue's Runway app looking at current and old fashion shows. I also love music and playing guitar. I was an honoree for Dallas Finest 2020 put on by the Cystic Fibrosis Foundation, and I am member of the Patient Advisory Board at the University of Texas Southwestern in Dallas. You can follow me on Instagram or email me at micah.baker@yahoo.com.

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