Baby Steps at 16…and 30

Finding out I had a terminal illness my junior year of high school was a life change I was not prepared for. And as my life and relationships change, I'm learning that the journey to acceptance never ends.

| 4 min read
Katharine Scrivener_cropped
Katharine Scrivener
Today - Black Sand Beach - Iceland_rectangle

I remember that March day vividly. My mom didn't tell me why we were going to the hospital until after we were there. Probably because just a few weeks earlier I'd read a book in which a character had symptoms just like mine. That was when I realized the past two years of mysterious health problems might be something serious.

The second the sweat test started, I got an ominous feeling in the pit of my stomach. All we could do was go home and wait.

When the phone rang a few hours later, I tentatively walked across the hall and peeked into my mom's room. She was sitting on the bed, phone to her ear, saying little. But I looked at her and just knew: The test was positive. I had cystic fibrosis.

Finding out I had a terminal illness my junior year of high school was a life change none of my family or I was prepared for. So we met with doctors, learned about the new medications I'd be taking, and tried as best we could to live our lives like we did before, just with a few hours of daily treatments thrown in.

High School - Prom 2002_rectangle
2002: taken at prom, not too long after being diagnosed with cystic fibrosis.

A little more than a year later I headed off to college. I moved six hours away from home, to a place where I didn't know a single person. I wasn't shy about having CF, but it sure was easy to ignore the gravity of my still-new situation. Hanging out with friends was far more appealing than strapping on my VEST and inhaling pulmozyme, and for the next few years I got really comfortable with denial.

College - Chicago 2006_rectangle
2006: Chicago with some of my sorority sisters.

Facing Reality

Somewhere along the way I realized that ignoring my treatments wasn't doing me any good. Time and maturity led me to face this (still) new reality. I had CF, and it wasn't going anywhere. I either had to start taking care of myself, or let it get the best of me.

Which brings us to today. Last September I turned 30 and, to be honest, it's been my hardest year yet. For a long time I thought I had accepted this new life. It felt like I was doing everything I could to straddle the line of living with it but not letting it overtake me. But as my life and relationships change, I'm learning that the journey to acceptance never ends.

Today - Black Sand Beach - Iceland_rectangle
2014: vacationing in Iceland with my husband.

The hardest part continues to be managing the disease as an adult. It takes its toll, both physically and emotionally. It doesn't matter who you are; as people get older, life gets more complicated. When you throw in a life-threatening illness, the complications seem to grow exponentially. It's a daily struggle to live my life outside of my disease -- to keep it from seeping into each moment of my day.

My biggest fear is that it's changing me. The loneliness…the fear…the “what ifs.” I'm scared they're slowly chipping away at who I am.

Yet in many ways, having cystic fibrosis has helped me become who I am. It's made me better, stronger and more empathetic. I wouldn't change any of that. But there's a HUGE part of my life that very few people are able to understand. With cystic fibrosis, there's no break, no day off, no vacation. Every single day there are pills to take, treatments to do, neb cups to wash and scary thoughts to try to ignore.

It's all too easy to get dragged down by the sadness that surrounds having cystic fibrosis. But I know indulging in my fears doesn't help. So I struggle to pull myself out, to replace the negative thoughts with hopeful ones. And, as always, I do my best with each day I'm blessed to wake up to. Reminding myself to take one step at a time, even if they're only baby steps.

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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Katharine Scrivener_cropped

Katharine was diagnosed with cystic fibrosis at the age of 16. A graduate of Denison University with a degree in English, she now has a successful career in communications. As a CF advocate, Katharine speaks at events sharing her story, serves on the CF Foundation's Adult Advisory Council, and is a board member for the Maryland CF Foundation chapter. For her efforts as an advocate and fundraiser, Katharine was named one of the “Top 10 to Watch Under 30” by the Baltimore Sun and a Maryland's Finest honoree. In her free time, Katharine enjoys reading, traveling with her husband, Mike, and eating locally. You can find Katharine at From A to Pink and The Bookly Club. Follow @katharinescriv on Twitter and @katharinescriv on Instagram.

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