A Little Less Lonely

For most of my 30 years, my life has been on the same path as my peers'. But suddenly, things feel different. 

| 4 min read
Katharine Scrivener_cropped
Katharine Scrivener
Katharine-Scrivener-boats

The other night I got in bed around 11 p.m. to read until I fell asleep, which I hoped would be soon as I was anticipating a 6 a.m. wake-up call for my first round of treatments before work. Just as I lay my head down after closing my book, a cough bubbled up in my throat, as if my lungs knew I was about to go to sleep. I spent the next two hours sitting up in bed coughing up mucus, getting more and more anxious as each minute passed and my hours of sleep dwindled.

Somewhere around 2 a.m. I finally drifted off, with only four hours between me and the start of the day knowing that this would follow: I'll wake up, drag myself downstairs, spend at least an hour doing my treatments and then get ready for the day. I'll arrive at my office at 9 a.m., coffee in hand, make-up on, and no one will know what my night actually looked like.

It is in these moments -- when cystic fibrosis tries to get the best of me -- that I feel most alone.

Katharine-Scrivener-tea

For most of my 30 years, my life has been on the same path as my peers'. I graduated from high school, and then went away to college where I did college things like go to parties and join a sorority. After college I got a job, moved into my own apartment and started my adult life. I got married and bought a house. All the things my friends were doing, too.

But suddenly things feel different. Friends are advancing in their careers, starting families and planning their futures. And I'm not sure I'll be able to do any of those things.

Instead, I worry about why my cough has increased, what my next sputum culture will show and how I'll be able to make it through the day on four hours of sleep.

I spend my days doing treatments, going to work, doing more treatments, getting some (restless) sleep, only to wake up and do it all over again. I'm often tired, and constantly coughing or congested.

And that's just the physical stuff.

Emotionally, I struggle not to feel like I'm suffocating from the unending sadness that comes with having a life-shortening illness. I struggle to feel joy for my friends and their milestones. I struggle to relate to almost anyone. And that is so very lonely.

Katharine-Scrivener-boats

Isolation, according to the all-knowing Merriam-Webster, is “the state of being in a place or situation that is separate from others.”

And that's a pretty good definition of how I have felt as I've entered my 30s. To live a life, day in and day out, that few people understand is hard -- especially when us CFers look mostly healthy on the outside but often feel a lot worse on the inside.

Connecting with the CF community online has been an immense help in fighting this loneliness. It will never be a substitute for a real hug or a coffee date, but it helps make us all feel a little less alone, a little less misunderstood and a little less like we're in this by ourselves.

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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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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.