Disease Labeling

I was talking to a friend earlier today and we were discussing some nutrition information and swapping recipes.  This is something we like to do regularly.  Some background…She has diabetes, and is very careful about what she eats, when, and what combinations of foods she eats at a time.  So far she has been lucky enough to manage her condition by diet and exercise, although doctors are still keeping a close eye on her.  Today, she said something that really got me thinking.  In our conversation, I was teasing her about how meticulous she was with her measurements when it came to food ( all good-natured of course).  And her reply was, “Well I am a diabetic, what do you expect?”.  I found it interesting that she, and many other people who have diabetes, identify themselves AS the condition, rather than a PERSON with the condition.

I then emailed a friend who has Celiac and asked her how she identifies herself.  She also replied that she, and many of the members in her support group, identify themselves as “celiacs”.  There is just so much about this labeling that bothers me.  There are many other conditions that are life long that people deal with all the time, yet they do not identify themselves AS the condition, they just say they HAVE the condition.  So what makes conditions like Celiac and diabetes so different.  Why are people relating themselves AS the disease?

I would really love to see people step away from this.  Yes, you may have a condition, and yes it may be something that you have to deal with for the rest of your life.  But, your disease DOES NOT define YOU!  You are the only person that can do that.  I think that the more we encourage terminology change (ie… I am a person with Celiac disease, or I am a person with diabetes) the more people with these afflictions will be able to feel more “normal”.

After I did some thinking, I called my friend back this morning and asked her why she identified herself in such a way.  She seemed surprised that I brought it up and was genuinely thankful for my observation.  She did not even realize the way she was referring to herself and her condition.  She agreed that it was much more empowering for her to be a person with diabetes, than a diabetic.  So, I encourage all of you to listen to when friends are talking…and if they do identify themselves as a condition they have… ask them why.  Many may be like my friend and not even realize that they do it.

I would love to hear feedback on this issue.   Please weigh in on questions and comments.  Let me know how you identify yourselves and why.  Or let me know if you think I am completely off track.  I would love to hear everything!

Posted on April 3, 2013, in Celiac, Food Allergies, Food Allergy Awareness, Food Intolerance, Food Sensitivity, Gluten free, Important Information, Reading Labels, Trials & Tribulations of Food Allergies and tagged , , , , , , , , , , , , , , , , , . Bookmark the permalink. 6 Comments.

  1. It almost always depends on the circumstances for me and for each of my conditions. To my doctor, I say “I’m an asthmatic,” but to a friend who asks why I can’t run outside in the cold, I say “I have asthma.” I always say “I have Celiac disease,” but I may say something like “As a Celiac, I can’t….” I don’t feel any more or less empowered saying it either way, because regardless of how I phrase it, I never over-identify with my illnesses. I’ve learned not to.

    I don’t think you’re completely off-track though. Self-talk is powerful and a lot of people do become victims of their illness. In those instances, I’d urge them to examine how they phrase it because you’re right; it may empower them to look at it differently.

    • Amanda, I think that you make a very good point about depending on the circumstances. It makes sense when you say it one way to your doctor and one way to your friends. I think that you have really found a way to bridge the gap between the two sides.

  2. Janet Rörschåch

    Interestingly enough, as I applied for jobs in the food industry, I described myself as a person with celiac disease. Someone reviewed my résumé and cover letter and said that I needed to say that I was a celiac because no one wants to hire someone with a disease. How’s that?

  3. Janet Rörschåch

    I am currently conflicted about the moniker Lizzie. Cooking is my livelihood, but my disease is complicating my hirability.

  4. Sometimes it’s just so awkward to rephrase a sentence to say “person with celiac” (or “celiac-having person,” which I sometimes go with, somewhat jokingly). What about “I am intestinally challenged”?

    I compare it to “him/her, he/she”—sometimes it’s just easier to stick with one or the other because the sentence gets so convoluted when you use the gender neutral phrasing. So even though I feel like I’m doing a disservice to myself and other women by going “he, him, his” all the time, I do it in the name of concise prose. (I will NOT use “they/them” as a singular pronoun. That’s just plain WRONG.)

    Similarly, sometimes I just say “I’m a celiac,” “me and my fellow celiacs,” and figure it doesn’t matter that much as long as I know and the people I’m talking to know that we may have celiac but we’re also much more.

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