Skip to main content

HAWMC Day 24: Why I Call Myself a Crohnie

I'm going a little off script today. The official prompt is to name a mascot, and I think we all know that I would just spend another post talking about Myrtle. (Because she's pretty much my mascot already.) I've done that a lot recently, though, and what I have to say today is something new. So, strap in.

After writing my Gloria Steinem post yesterday, I've been thinking even more about the importance of names. I've also been thinking about one specific name that we in the Crohn's community often use to describe ourselves. 

Crohnie.

Honestly, when I first heard it, I wasn't crazy about it. I was not comfortable labeling myself that way. This probably had a lot to do with the fact that I was simply not comfortable with my disease and my body in general.

Also, I thought it was a little cutesy.

Eventually, though, I grew more and more okay with it. Now I think it's kind of brilliant, if still a little cutesy for my taste. Here's why. I love that I can say, "I am a Crohnie" rather than, "I have Crohn's" or, "I'm living with Crohn's." The difference might seem frivolous, but it matters. Let me try to explain why.

I went to the Scholar & Feminist Conference at the Barnard College Center for Research on Women in 2011 (the one where Alice Sheppard spoke). That year, the conference happened to focus on disability and dance. Perfect, right? Anyway, during the opening panel, there was a lot of talk about the language used in reference to disabled bodies. One of the points that came up was whether to use "disabled people" rather than "people with disabilities." The panelists were largely in agreement that "disabled people" was preferable because it implies an identity. "I am disabled" says that the disability is part of who I am, whereas, "I am a person with a disability" separates the disability from my personhood. In reality, my disability shapes who I am, and "disabled person" acknowledges that. "Person with a disability" seems to blatantly deny it. 

I feel the same way with the word crohnie. The issue with this being, of course, that if you walked up to a random person on the street and told them you were a crohnie, they would more than likely have no idea what you were talking about. Not sure what the solution is for this, other than to just keep using the word.
Labels:

Comments

  1. lilith anneApril 24, 2012 at 10:20 PM

    i also like it because it's kind of old timey. Like you might tip your hat at another chronie along the street.

    and all the agency stuff too.

    ReplyDelete
  2. vadiOctober 4, 2012 at 4:30 AM

    Hey, nice site you have here! Keep up the excellent work!

















    Disability Conference

    ReplyDelete

Post a Comment

Popular posts from this blog

Overwhelming Nuance - Dancing Crohn's Disease

Below is small segment of my Dance Studies Research Project, "Cripping Dance: Radical Representations of the Disabled Dancing Body." It's the bit I wrote about my own work, Overwhelming Nuance (excerpted below), which, as you will see, was inspired by the feelings of denial that so often accompany disease.  Nearly four years after I was diagnosed with Crohn's, it flared massively. Lost in the idea that "my disease will not define my life", I ignored for months the signs of the looming crash. This breakdown forced me to come to terms with the reality of my disease. I suddenly understood that the idea that the mind might overcome the body just supported the willful denial of my disease. After this experience, determined to force an openness about disease in my own life, I claimed disability as part of my identity and choreographed my own "crip" coming out.
5 comments
Read more

Chronic Overshare

Every two weeks I take my Humira shot. No big deal. But, a couple days afterward the most wonderful thing happens. I poo. I mean, I take a dump . It's awesome. The thing is, I crap constantly. All the freaking time. Just not like this. This is one of those rare, deeply satisfying, glorious dumps. And I get to look forward to it every two weeks. It's a major source of joy in my life. And what's my immediate reaction every two weeks? What is the first thing I want to do as I saunter triumphantly from the bathroom? I want to tell people. I actively seek out someone to inform of the magnificent crap I just took. I'm genuinely disappointed if no one's around. My poor roommates.
9 comments
Read more

There is no end. It's chronic.

Denial is a way of life for me. I’m not in pain. I didn’t get sick twice last night. I can make it through the day. I’ll be fine. I don’t need help. I could go without my medication today. I don’t need a doctor. I’m good. Today is going to be better. I'm fine. When does positivity turn into denial? Am I lying to myself when I think, “You can do it, just keep on going.”  Or am I just staying upbeat? Where is the line drawn? Call it mind over matter if you want. I’ve always felt uncomfortable with that expression. More than anything, I want a place where I can talk about my disease. No one talks. Denial is not just internal, it is forced on you. We all do it. When someone says, "It will just make you stronger in the end!" they negate and deny what I go through everyday. There is no end. It's chronic.  You blame me for my disease, blame me for letting it get this bad, when at every turn you are denying me a place to talk about it. How messed up is that? I'm starti...
4 comments
Read more