Wednesday, July 13, 2011

To Tell or Not To Tell...

I'm back today with yesterday's post, and in true late submission form, I'm probably going to half-ass this thing so I can move on to the many other things that need my attention right now. 


I hadn't really given much thought to whether I should or should not tell people about my gluten allergy. I always figured that I could be the example that educated people, and that knowing about gluten allergies could potentially benefit me as someone who still needs and likes to eat. Knowledge is power! So I've been very open with family, friends, acquaintances, enemies, strangers, etc. And it has been good. I feel like I have done good by introducing a lot of people to gluten intolerance. 

Recently, I am starting to question my decision to tell. 

While it is great to raise awareness and teach people how to accommodate glutards, telling folks about my gluten allergy makes something about my health public knowledge. Instead of being that quietly fabulous/awkward person, I am suddenly transformed into the quietly fabulous/awkward person who clearly has something wrong with her because she can't digest a staple grain. Once this information is out there, it can be used or misused beyond my control. Normally, people just ask questions or make some comment on how unfortunate a gluten allergy must be. Sometimes, people use this information to provide accommodations for me so I can partake in eating, or at least warn me to come prepared with my own food so I am not left to watch everyone else eat their gluten-laden goodies. I don't mind questions or conversations about my gluten allergy, and I REALLY don't mind those folks who are motivated enough to attempt to feed me (wink wink). 

Lately, though, I've run into some reactions I wasn't expecting. Part of this is my fault for not thinking things through, part of it I am chalking up to shittiness. To some people, my gluten allergy defines me as a person. It has the been personal detail about me that is used to describe me during introductions. "This is Am. She is the one I was telling you about with the gluten allergy." I am a glutard, yes, but I am also so much more. My food allergy sets me apart from many people, but so does my PhD and my wit and a gazillion other things that are not related to my health. Maybe next time I am navigating dinner and my gluten allergy comes up in conversation, I will also mention that I recently finished my PhD and bought a car so clearly my allergy doesn't stop me from doing anything except eating some grains. 

This defining characteristic may be causing some problems for me. Knowing something about my health has primed some folks to assume other things about my health, like that I am sick or frail or weak or unable. In addition to my glutardedness, I do have some chronic conditions, but I tend to manage them pretty well. I have worked hard to come to terms with my health and to implement plans to maintain it. The criticisms of my health that my allergies have invited frustrate me because the implication tends to be that my life will somehow be less complete because I am missing out on gluten/cats/dogs/etc. Criticisms of my health also make me feel bad about myself, as if there was more I should have done to avoid being in this position. I don't know about you, but I don't like feeling bad about myself. It hadn't occurred to me that telling people about my gluten allergy would open the flood gates, clearing paths for conversations I don't care to have. 

At the end of the day, I still choose to talk about my allergy. The reception has been overwhelmingly kind and curious (aside from a handful of paste-eaters). I am happy to spread the word so that people may be more knowledgeable and accommodating to other people with food allergies they may meet. But it is my choice. It may not be the right choice for you, and that is okay. We each have individual needs. I'd rather tell people so that I can hopefully eat, but I've known many people who just don't bother, or who don't feel comfortable talking about it or asking for accommodations. There is no right or wrong way, as long as you are polite and patient. Thus far, the benefits of telling have vastly outweighed my unanticipated costs. But if the cost-benefit ratio shifts in the future, you better bet I'll be in the corner quietly sneaking my g-free snacks. 


  1. Did you know that it is theorized that a good percentage of the population has a level of intolerance to gluten? If my husband eats a lot of gluten he will break out in a rash. Although most people's allergies to gluten are not life threatening, I am learning that gluten is not good for digestive health in general. So you are not alone, nor should you be ashamed of your allergies!

  2. I totally understand what you're talking about although only recently have I added gluten and dairy-less to things I'm allergic/intolerant to/of. I've always been super tall and very allergic to anything with fur so ever since I was a kid I've been introduced as "This is Melissa. She's my giant/allergic to everything friend". Sometimes I felt that was kind of alienating but those descriptors are true (apart from giant, I know I'm a big girl, I don't like making jokes about it). I eventually realized that I had to tell my friends to not say those things. Again, while they all may be true, people can clearly see I'm tall so no need to comment on it and if my allergies have nothing to do with the sitatuation then don't bring it up. When I go to parties out here I've notice that my friends will introduce me as "the one who can't eat anything" which for right now is a little funny but I don't really want to discuss my health with people I just met (unless they have the same problem). So again, I will have a little chat with my friends :) You may want to do that as well. I know sometimes I feel like when my friends throw my allergies out there, that's all people will remember about me ("the tall, sick one") but I'm sure (or hope) that they'll see there's much more to me after talking to me for a little :) So the same goes for you!

  3. Thanks for your support! And good luck to you both. It is a tricky thing to navigate, but a great opportunity to remind everyone of the importance of communication and learning about basic prevalence statistics ;)