How I Learned to Be Proud of My Body With CF

As a personal trainer, I used to feel insecure about the physical effects of CF on my body. But over time, I’ve learned that my strength is defined by so much more than my appearance.

| 6 min read
A selfie of Rachel Leah
Rachel Leah
Rachel Leah performing a one-arm dumbbell row in the gym

Have you ever stared into the mirror long enough to question if you looked good enough? Maybe you even thought, based on what you are going through, you felt the need to give people an explanation about why you look the way you do. I can relate. For the most part, cystic fibrosis is an invisible disease. But for some people, like me when I am going through the thick of it, it can be pretty visible.

I started my career as a personal trainer back in 2014 and have always enjoyed working in the fitness industry. Not only was I a personal trainer, but I also decided to jump around a bit and get experience in membership sales and as a group fitness instructor. 

Since the start of my fitness career, I have endured lots of challenges because of how my body shows my CF. There were a lot of moments when I wasn’t sure I looked the part — you know, those moments I was referring to earlier — where you pause for way too long in front of the mirror. And when I had a flare, I always felt like I had to tell whoever I was working with, almost as a Band-Aid to cover up what I might look like that day. I started to question a lot of things, like would people take me seriously if I didn’t look like the standard fitness girl? Would they understand my distended stomach? What about my port, which shows through my chest? Or the swelling in my face that makes me feel like a chipmunk? Oh, and don’t forget the side effects of those lovely pills we all know and love. Steroids. Don’t even get me started down that rabbit hole, and all the thoughts I had when I would experience rapid weight gain. All these things consumed my mind, made me question my worth. And all because someone said a personal trainer should look like someone who has muscles and a toned body with abs. 

We know we can't completely change the outcome of cystic fibrosis. And a lot of the visual challenges will always still be there, even when it’s not a flare. For me, that’s seeing the bump under my shirt from my port and the pretty awesome scar on my stomach that makes an indent. But through working in the fitness industry, I got to see all angles of what someone with my position “should look like.” And let me tell you, there is not one cookie cutter version, but many! Maybe society changed, maybe the standards are more accepting. I couldn’t tell you. But at the end of the day, none of that mattered for me. What mattered is focusing on the things I could change and accepting my cystic fibrosis as it is. 

I had to go back and think of why I chose this industry in the first place. It wasn’t to look like the girl on the magazine or like some Instagram fitness guru.

The passion I had for fitness was so much more than that. It was something I had control over when CF was HARD. It was something that helped me channel all my emotions into creating a stronger version of myself (physically and mentally). It was seeing my change and growth and wanting to give that gift to others.

That is why I love what I do. The aesthetic part is just a bonus, I tell people. I was addicted to fighting for my life and beating the odds of CF every single day in the gym.

Recently, I had that a-ha moment. I had just started teaching group fitness classes, and that little voice crept in wanting me to question myself again. It was trying to tell me that I am about to be vulnerable in front of not only my current members (who for the most part know about my CF) but to outsiders who use ClassPass or just drop in. Could I handle that? YES. I ABSOLUTELY COULD. I was even on a course of IV meds, so my port was accessed, and I still taught. I wore the tank top! I was on a round of steroids, and, yes, physical changes happened. But SO what? I showed up! On days where my face is puffy, which are many, I still show up! 

See, what I tell myself constantly is, I was born to fight. I have been through it and will continue to fight. What people see on the outside doesn’t matter because the strength I have on the inside bleeds out and overrides any crap we were told about beauty standards.

I learned that being proud and owning what you look like brings a lot more love than you will ever realize. I had more people — people I didn’t even know — approach me to say how strong I was. They didn’t even need to know my story or what I was battling — they could just see the passion and pride I had for my job and who I was. 

Do I still struggle? It would be silly to say no, because it totally happens. But do I dwell on it? Not a chance. The cool thing about fitness is everyone is on their own personal journey. In a world where exercise isn’t defined by what you like but rather the quality of life it brings you, there is no comparison game. And that is the world I live in.

Interested in sharing your story? TheCF Community Blogwants 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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Emotional Wellness | Fitness
A selfie of Rachel Leah

Rachel is an adult with cystic fibrosis and part of the 10% of the CF community living with two rare nonsense mutations. She grew up in Rockville, Md. and moved to Charleston, S.C. to live her beach life dream. Rachel is a certified personal trainer and has a great passion for fitness. When she is not on the mic training her group classes, you can find her at the gym challenging herself. Rachel is very involved with the South Carolina CF Foundation chapter, participating in Great Strides, helping with local charity events, and becoming an ambassador over the years. Rachel uses social media like Instagram and Facebook to bring awareness and share her personal experiences. 

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