This post originally appeared on the Cystic Fibrosis Foundation’s blog. While this was written a while ago, much of it still applies – and gives a peek into life with CF.
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 attempting 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 much-needed rest 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 about two hours doing my treatments, and then get ready for the day. I’ll arrive at my office at 9 a.m., coffee in hand, makeup 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.
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.
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.
Creating a 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.