My CF Cough Barges into Normal Experiences

Two Christmases ago, my husband gave me a gift certificate for a massage. This week, I finally scheduled my first massage and cashed in the expiring gift. The timing felt designed, as my body is aching from inflammation and lugging around a 10-month-old baby boy one-third my size. I even congratulated myself on practicing what I preach by scheduling opportunities for self-care this week as a busy mom — time away from the baby and moments independent from my disease to recharge. I needed this, and it was going to be great!

The minute I walked into the dimly lit room, I had a strange feeling that my relaxing outing wasn’t going to go as planned. As soon as the scent of essential oils hit my nose, my cough began to sting in my throat.

Uh-oh, not a good sign.

I crawled under the sheet, lay flat on my back, and that in turn triggered my cough reflex even further. I closed my eyes and focused on steadying my breathing, but who was I kidding? This wasn’t relaxing. With every cough bursting through, my body grew tenser, my lungs burned, and I started to regret scheduling the hour-long session.

Since a very young age, I have been self-conscious of my cough in public. It’s complicated, but CFers have many different types of coughs. There is the “coughing fit,” in which every cough pent up from the past one thousand years tries to exit your body at the same time and leaves you gasping for breath. This is the most alarming cough to onlookers. The “laugh cough,” which begins as a bout of laughter, quickly morphs into a full-blown coughing fit, forcing the laugh to fade. There is the “hacky/annoying cough,” which is sparked by a constant itch in your lungs and continues to erupt no matter how many sips of water you take. There’s also the “wet smoker’s cough,” which sounds about as gross as a cough can sound. I could go on and on.

The point is, each cough elicits some type of attention in public. Occasionally, strangers make remarks, stare, or slowly move away as if to avoid catching what I have. I hate losing control over my cough in public. By forcing it down and stifling it to avoid bothering others, I inevitably become more anxious, sweaty, and choked up. It’s a vicious cycle, one that I am trapped in during the most inopportune moments, it seems.

This week, it was the hacky/annoying cough ruining my massage. I coughed that cough continuously for the entire hour. I even coughed in the masseuse’s face as she focused on my shoulders. (I apologized and explained I had cystic fibrosis. She was lovely.) It was unfortunate that I left more frazzled after my massage than when I arrived. Certainly, I walked away feeling a little sad and disappointed that CF had leaked into the time I tried to set aside just for me.

There are moments when I hope to enter into an experience as a young, vibrant woman, not as a patient, but my disease takes ownership with no rights. I wish my self-care time went differently this week. I wish I could turn off my cough reflex and be rid of the anxiety it sometimes causes me. It’s such a silly thing to be anxious about, but it’s part of the imprint CF has left on me and I can’t change that. This week was a reminder that CF has the ability to oversaturate its rightful place, to overflow and to leak through the cracks. CF doesn’t stay within the boundaries of my medical body and experiences; it’s everywhere, in most things, and it seeps into the ordinary. Sometimes, the seepage stings more than expected, but it’s temporary and thankfully the damage dries out over time.

When has CF leaked into your normal experiences and how did you deal with the disappointment?

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