What Does It Mean to Be a Patient?

I have a funny relationship with the P-word.

It feels as familiar as my own skin, yet somehow still alien.

At clinics when I was growing up, I used to strain my eyes across the table, trying to read my doctors’ notes as they sat open in their files.

Sometimes, I’d see my own name written. “Eleanor seems well today.” “She admits she finds it hard to remember her morning treatment.” But then that word would appear, dotted across the page intermittently. 

“The patient is underweight.”

“The patient has been experiencing increased cough.”

The patient.

It’s curious enough reading what’s written about you by someone else, more curious still when you have a special moniker. When you are described as equal parts patient, equal parts person.

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I would look at the doctor or nurse in front of me and idly wonder, “But what if you become a patient, too? Will you be part patient, part doctor?” The people in front of me, from where I sat, seemed impervious to the identity of “patient.” As if they could never imagine it happening; that they were either somehow immune to illness or simply couldn’t fathom being on two ends of the medical spectrum at once.

While I considered the P-word strange growing up, truthfully, I didn’t think about it too much. I would shake it off the moment I left my appointment, not to be thought of again until the next hospital visit.

 Since working in healthcare, the word has attached itself to me rather persistently.

It became my key, my pass into a room. I got invited to talk at conferences because of the P-word. Suddenly, I had an extra perspective to give, a reason to speak up. But there was an important difference between my own perception of the P-word and those inviting me to speak. 

I am happy to be the patient. It feels natural after all. It’s something I’ve always known. But I never thought of myself as “just” or “only” a patient. I am a writer, communicator, researcher, and patient. 

It might have been my way into a room. But it was never my motivation to stay there.

I wouldn’t be doing this work if I weren’t all those other things as well as a patient. I do it because it matters, it’s interesting, and I hope it can make a difference. I don’t do it because I enjoy being known as a patient. Nor do I think every person who spends time as a patient should choose or want to work in healthcare. There’s a distinct difference between taking the opportunity to share a perspective as a patient and using knowledge of living as a patient to do your job. It can be an uncomfortable balance to strike.

It has me wondering how others in the CF community handle their patient identity. Do you hate the P-word, embrace it, or are you somewhere in between? 

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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.