On Sadness and CF

My emotions are constantly evolving through this journey with cystic fibrosis. And while I might feel like I am filled with sadness at times, my life is still very full.

| 4 min read
Katharine Scrivener_cropped
Katharine Scrivener
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Almost two years ago, I wrote a blog post about a sadness I couldn't seem to shake.

I was optimistic that things would change; that I would get back to feeling more like myself. And while things aren't all “doom and gloom,” the biggest lesson I've learned is that as this journey is constantly evolving, so are the emotions. I'm always learning new things, about both cystic fibrosis and myself.

Below is an excerpt from that post, along with a reflection on where I am today.

***

Life's been really wonderful recently. *Knocks on wood.*

I'm loving my job -- both what I'm doing and the amazing people I get to do it with. There are plenty of adventures with friends in the coming months. I'm soaking up life's sweetness and feeling very blessed.

But there's also a sadness I can't shake.

The older I get, the harder it is to not become my disease. It's incredibly important to me to be more than cystic fibrosis, but with each big life event I feel more and more trapped by the hard-to-swallow truths of living with CF.

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The big one? Knowing a shortened life -- one riddled with scary health obstacles -- is a strong possibility.  As people get older, life gets more complicated, no matter who you are. And 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 not let it seep 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.

In many ways, having cystic fibrosis has helped me become who I am. It's made me better, stronger, more empathetic. And I wouldn't change any of that. But it's also made me more fearful, less spontaneous and always worried.

There's this 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, scary thoughts to try and ignore.

It can be isolating and makes me feel separate from people, like I'm part of this “other” group. So I fall into the habit of pulling away or hiding parts of myself in order to feel more normal.

I know that much of this is just that: how I feel, and not how I'm actually perceived. And that's a reminder I keep tucked away to pull out at times like this.

***

I wish I could say, “I figured out how not to be sad!” or “Life is truly more wonderful than I could imagine!” But, the truth is, I am still sad. This past year I've felt more like a CF patient than ever. But the good things that have come from this are the support from my family and friends, and learning that I'm stronger than I think I am.

I've realized that the sadness I feel will always be a companion of mine, so I'm doing my best to get comfortable with it, to really feel it and become confident in knowing that all emotions have their place; without one we wouldn't understand the others.

This life with CF might have its “downs,” but that just makes the “ups” that much sweeter.

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Emotional Wellness
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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