Since I can remember, the words "handicapped" and "disabled" have made my stomach turn. I have never used those words to describe myself, even at a time when I had a handicap placard and very much fit the definition.
I chose the title of my book, "Sick Girl Speaks!", as a tongue and cheek way of asking what does being a "sick girl" look like?
Recently, I began noticing when I said things like "my CF" or "I'm a lung transplant." Is it my CF or THE CF. Am I a lung transplant? No, I am a person who had a lung transplant.
The use of language in relationship to illness fascinates me. What words do you embrace and which do you shun? Why? Do you think the little words we use, like "my" CF instead of "the" CF make an impact on our psyche?
I can't wait to hear everyone weigh in.
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What a great, thoughtful post. As a mother of a child w/CF, I think I usually say, "That's the CF". Ironically, though, I have the opposite problem of needing to remind myself that she has it! I know that sounds crazy, but I slip back into denial way too easily. When she looks perfectly healthy (which we get all the time, "You would never guess she has a disease"), I still MUST give her enzymes, breathing treatments, and chest PT. I have to still act like she is sick even though I never want this disease to define her in any way!
I know that one of the more insulting things a respiratory therapist said to me (which was just a few shorts months ago) was "I never would have guessed you were a Cystic til I heard you cough." I had to really think about why that made me so mad and I think although all of it was rude, it was being labeled "a Cystic" that bothered me the most. I am not the noun CF, I HAVE CF. I definitely think that using words that define us as our diseases or conditions can creep in and affect our psyche as a whole.
I quit going to a doctor because he called me a cystic. I called and complained about him to the administration too. He was arrogant on top of it, and when he called me that.. I was very insulted and left his practice to see someone else.
I say CFer now, and I still hate being called a cystic. For some reason CFer doesn't sound as insulting. I only talk like that to other people with CF though. If I'm telling someone my story, I will say I have Cystic Fibrosis and had a double lung transplant. I have never thought of it as "mine". But that's really a new way to look at it.
I think this is food for thought from an MD point of view. Not only the important point that a patient is not his/her disease (calling say someone with COPD a "lunger") but also blaming a patient for certain difficulties on physical exam, such as "Your cervix is hard to find" rather than "I can't find your cervix" when poking about during a physical exam.
Thought provoking post. I generally say I'm battling CF because truly I believe in positive confession and although it might be a reality I'd rather not own it. Cuz I don't want it. Personally, that's just the way I deal with it.
I've been known to say the "CFers" when referring to myself and my other CF friends. I don't think I've ever used the term "Cystic," although I people at our hospital do quite often. I agree that I *have* CF, but I *am not* CF.
Funny though, I long ago realized that I have my "regular friends" and my "CF friends." Not intentional, but it seems like it has always been that way.
I absolutely think that the words we use have an affect on us. As a fellow CFer, I have often referred to it as "my CF." This summer I was in a yoga class and a new friend told me to take off my glasses while doing yoga so that I could breathe better and it would help "the CF." I literally stopped in my tracks and thought about what she said. I had never heard it referred to as "the CF." It was always "my CF," something that I carried with me and let define me. It was liberating to think of it as "the CF." My respiratory therapist told me years ago that I am not a cf person living, I am a person who happens to be living with CF. There's a big difference!
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