The disease formally known as . . .

Lawyers often say that you should only ask a question you know the answer to. I’ve decided to ignore that advice with the following: What if we renamed cystic fibrosis and called it something else?

What if we used a symbol instead? We all know how that worked out.

This is a question answered by other questions. Can you change the name of a disease? Would you want to change a name of a disease? Would lighting strike for doing such a thing? Is it a crazy idea to contemplate? Where did the idea come from?

I can answer the last question. I hate having cystic fibrosis. I hated the name growing up. I still hate the name. That’s where it came from.

I’m tired of having cystic fibrosis. I’ve been embarrassed to speak the name all of my life. It doesn’t roll off of my tongue. It feels foreign, alien, like it has nothing to do with what I have and explains nothing that I go through. Sometimes it elicits a blank stare when spoken to others. So, this idea of a name change must spring forth from my unconscious and conscious minds and their desire to shed cystic fibrosis from their lexicon. Would it feel like a victory if I no longer had “cystic fibrosis,” but a disease of another name?

I have no idea what we would change “cystic fibrosis” to. I only wonder if we could and what would happen if we did. Web sites would have to change, as would stationary, history books, medical texts and the minds of E.R. doctors who know nothing about cystic fibrosis and who would be even more confused by a new disease. It would be easier to move the Empire State Building three blocks than change the name cystic fibrosis. At least it feels that way. And it probably is as pointless as moving the ESB three blocks. A lot of effort and what’s the reward or payoff.? Is there a reward other than saying you did the impossible? We moved that building, damn it. It can be done. Now let’s move it back to where it was.

I know it’s a silly question. It’s an impossible feat. But something inside me says “what if?” What if I no longer had “cystic fibrosis”? Even if it’s in name only there would be something really nice about that. I’d never again have to tell anyone that I have it. The words “cystic fibrosis” would never again leave my lips. Of course, I’d have to tell people I have a disease and that would require a name. And, as a I mentioned, I have no suggestions for what that name would be. I only wish George Carlin were still alive and I could ask him. I know he’d have a great name. And I know you’d never be able to say it out loud in public or on television because it would be X-rated and censored. But that would make me love it even more. Every time I coughed and people stared at me, I’d just say, “It’s okay, I have f**king *$#*&%# *&#$#** and there’s no way in hell you can catch it, Jerk-off.”

Perhaps, I should contact Prince for advice. He’s been there, done that. But even he knows that sometimes a name is difficult to escape no matter how hard you wish it away.


5 thoughts on “The disease formally known as . . .

  1. For years and years and even now, when people ask me the dreaded “what’s wrong with you?” sort of question, I answer, “I have lung disease” if I don’t really want to converse with them, since then they just shrug and do what they want which is to say, OH, that is so sadddddddd, in some pathetic voice.


    Can we rename it *adult content ahead*

    What is wrong with you? Are you sick?
    I have . . . FUCK YOU.


  2. Prince is the first thing (person) I thought of when I read the title of this post. Although I think if he were to become involved, we’d find ourselves in some kind of disease-formerly-known-as-the-disease-fromerly-known-as (insert random symbol here) situation.

    I can totally relate to the blank stare when you mention CF. But what’s even worse, in my opinion, is when people pretend to actually know what it is. During a recent conversation with an acquaintence of mine, I mentioned how I don’t generally tell people I have CF because so few people know (or care) what it is, and (as Beth mentioned) it’s easier to just say I have a “lung disease”.

    She responded with “Well, sure, because when you say ‘cystic fibrosis’ it sounds like you have, like… a fatal disease or something.”

    My point exactly.

    • Jenny,

      It’s really cool that you visited and left a thought provoking comment. You’re right about the people who pretend to know. I don’t fault them for that. I guess I don’t tell them because I don’t tell many people, which has changed dramatically thanks to 20 days in the hospital. I don’t like talking to anyone who doesn’t understand CF. I’m not CF Wikipedia. Cystic fibrosis does sound fatal to me because that was what I was told by everyone when I was growing up. Maybe that’s another reason I hate the name. I associate it with that time and the brutality of it.

      Thanks for the visit. I’ll check out your site.


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