Does illness define you? I’ve joked about this before, but it’s worth serious consideration. How much of a part of you is your health? And how much should it be?
Plenty of people identify with their illness enough to name themselves after it: diabetics, celiacs, Crohnies, Lymies, spoonies. The use of these names is vehemently opposed by others who consider them dehumanizing. “You wouldn’t call yourself ‘a cancer,’ would you?,” they prod.
It’s a fair point, although many do call themselves “cancer survivors”—another way of identifying themselves by their disease. (Also, according to Wikipedia, some folks with terminal cancer reject this name in favor of cancer “diers.” I was unable to independently verify the name is used by anybody outside of Wikipedia. Have you heard of this?)
Look at just about any medical condition and I’m willing to bet you’ll find a subculture and nomenclature to go with it. You’ll find people affected by the condition who don’t participate in the subculture (or who don’t even realize it exists), and you’ll find people who have thrown themselves body and spirit into it. You’ll find people who hate that the subculture exists, and people who can’t imagine existing without it.
And in between you’ll find lots and lots of people totally confused about how much to participate, what to call themselves, and how much to allow their condition to matter in their lives.
Diagnosis identifies the disease, but we have to decide, afterwards, how to identify ourselves.
Author Hilary T. Smith, in her book Welcome to the Jungle, suggests diagnosis is like waking up one morning to find “a big old snake-eating-a-unicorn tattoo” on your bicep.
Seeing the tattoo, she writes, you might react in several ways:
I was unable to find an image of a snake-eating-a-unicorn tattoo, but I did turn up this snake-fighting-a-badger tattoo that I am thinking about getting sometime.
Photo © BreadnBadger | Flickr
Underidentification: “Ho ho ho! This is surely but an amusing temporary tattoo placed on me as a prank. It will certainly wash off in the shower.”
Medium-Low: “This tat is real, but I am going to wear long-sleeved shirts for the rest of my life to cover it up.”
Middle: “Living with this tattoo is going to be a b**** and a half, but it’s also kind of dope.”
Medium-High: “Short sleeves for me, baby.”
Overidentification: “This tattoo defines me, man. I’m going to tattoo the rest of my body with snakeskin and have a horn surgically implanted on my head.”
(Smith, Welcome to the Jungle. Conari Press, 2010)
The book is about bipolar disorder, which I myself don’t have (and no, I’m not just underidentifying). Still, especially as I got to the end of the list, I knew this applied to me.
Although I prefer not to call myself “a celiac,” I do give celiac disease, and being gluten-free, a lot of space in my life and identity. Sometimes, I wonder whether I’ve given it too much.
For example, when I renamed my Twitter handle @spruestory, I wondered if that was taking it too far. I mean, that’s my only Twitter handle, and it’s now named after my celiac disease blog. Was this really how I wanted to “brand” myself? Would I look back one day and wish I hadn’t?
Clearly, I decided it was worth it to change the handle (and that Twitter isn’t worth so much existential angst). After all, I’ll have this disease for life, so I doubt I’ll be looking back five, ten, fifty years from now and thinking, “Gee, I wish I hadn’t told everyone I had celiac disease.” Unless the whole world goes gluten-free or they discover a cure, five, ten, or fifty years from now I’ll still need to be upfront about my disease. I’ll still need to announce it on dates, to new friends in response to dinner invites, to strangers at restaurants before I order, to bosses and colleagues at work. It may not be the first thing I’ll talk about, but it will come up.
But will I one day wish I hadn’t talked so much about celiac disease? Will I wish I had identified with it less? Maybe. I wish it already, sometimes. But, as I said, this disease is for life, so I’ve got plenty of time to figure it out. Until I do, I think I’ll stay far away from tattoo parlors. No snakes, unicorns, badgers, or Xed-out sheaves of wheat for my bicep, thank you very much.
Based on a Sprue Story 
The idea of how you identify someone who is in some condition outside the norm is one I have to work with for my spinal cord medicine journal. Papers have to be carefully edited for “disability language”. Rather than write about paraplegics, we present persons with paraplegia, for example.
But I have, on one or two occasions reading your blog and other pieces concerned with celiac, wonder if it is even right to call it a disease. The medical establishment tends to over-medicalize things, so that conditions are considered diseases which are simply conditions, whether short-term or long-term. Pregnancy often gets lumped in as a disease because pregnant women work with doctors (or because midwives have to become medical personnel to be considered legitimate/certified/reimbursable). But pregnancy is a natural (albeit temporary) condition. Is lactose-intolerance a disease? Or is it just the natural human condition for most people on the planet?
Perhaps gluten intolerance is, like lactose intolerance, simply a genetic hold-over from our pre-agricultural ancestors; the difference being that for most, a tolerance for gluten proved to be an advantageous adaptation, since the adoption of a grain-based diet resulted in a surer food supply than the hunter-gatherer model of life could provide. And so the gluten-tolerance gene spread pretty widely through the population, but never so completely as to wipe out the older genetic pattern.
If that be the case, perhaps celiac shouldn’t be considered a disease, just another human condition, however much a minority condition it is. I wonder if there are studies about gluten intolerance in populations that would likely not have had any long-standing contact with wheat/spelt/barley…maybe among the Inuit and Amazon tribes?
Lactose tolerance, while conferring benefits for herders, was not as key an adaptation for most, and so while widely spread among northern Europeans and certain Middle/Near East and African populations, for much of the rest of humanity the older lactose-intolerant genetic profile remained predominant. And because so many people have a lactose intolerant profile we don’t think of them as sick, although they get sick if they consume milk, just as a person with celiac or other gluten intolerance get sick if they consume gluten; but without such consumption, after recovery, is a person with celiac sick?
These are really good points, and actually Althea and I have been talking about some related things lately based on what we’ve been reading. Celiac disease actually seems to be protective against certain other illnesses, though usually the mechanism isn’t understood. But it’s felt that it protects against certain infections that are unable to latch on in the intestines/be absorbed precisely because the villi aren’t functioning. Especially pre-medicine or in current locations with less access to doctors and medication, this would have meant celiac could actually help prevent early death from dangerous infections. (My source for this is Peter Green’s Celiac Disease: A Hidden Epidemic.) Today, it may protect against heart disease because the villi can’t absorb the fats that would promote it. Of course, there are other diseases active celiac disease can raise the risk of. But still, especially for some populations, it may not only be a holdover but also be evolutionarily beneficial!
For the longest time, I was on the medium-low end of the spectrum, really choosing not to identify with my diseases/conditions at all (to the point where I was smoking as an asthmatic, and doing other various stupid things). Getting diagnosed with Celiac Disease and starting my blog put me more in the middle. While I occasionally feel defined by these things, it’s usually in situations where OTHERS seem to be defining me by it. Generally speaking, I view them as something I have, one slice of the pie. The sickness slice of the pie will never become greater than the whole pie, or even take up the entire pie. I would just rather identify with my accomplishments, things I do, the way I behave, who I AM as a person, than some sickness I can’t control and only takes up part of my life.
I think I might gravitate more toward the middle with time and getting used to this. I’m sure lots of people have that initial grieving/non-identifying stage. Too true that it’s only one small piece of the pie!
Yeah, I’m sure over time it will balance out!
I am not sure exactly where I fall on the spectrum. I have given up the victim role but it is very obvious that I have a condition when I walk into a store with my mask on or someone gets too close to me and I cough like nobody’s business. My blog talks about my condition – the name alone says it all – but I try to offer help and support. Even my book talks about my condition. I try to live as normal a life as possible within my restrictions but the identification follows me everywhere I go. The illness is invisible, but me and my mask are not.
All that being said, yes I have chemical sensitivity, food allergies, and extreme mold sensitivity. But this is not “all that I am”. I am still a mother, grandma, wife, sister, daughter, and friend. I feel that some of the “old” me is still there but it is a much more cautious me.
I’m glad you brought this up because it’s a good reminder that the situation with identification is very different depending on whether the illness is visible or invisible. (Especially when it comes to how others identify you.) But it’s totally inspiring that despite the visual reminder of the mask, you remember all the other more positive identities you inhabit! Thanks for sharing.
Because of MCS– I am a NEW ME– A BETTER ME— I LOOK AT EVERYTHING IN THIS WORLD DIFFERENTLY THAN I DID BEFORE—I don’t any longer use toxic chemicals at all of any kind– I don’t color my hair– I don’t wear make up– & I am an all natural me now– we don’t use any toxic cleaners– we don’t eat any junk food– we eat organic & chemical free food– we only drink purified water– we clean our air supply– we are aware of everything we eat & drink & use — we totally recycle everything possible– we think about everything thing we do in a different light & — we are concerned about EVERYONE’S AIR SUPPLY- WATER SUPPLY– FOOD SUPPLY– AND OUR ENVIRONMENT– & TRY TO EDUCATE OTHERS– who don’t seem to even have an understanding that the toxic chemicals they use every day– not only effects themselves– that most are not aware of — but effects every living thing on this earth!!!!!!! IF I didn’t have MCS– I’m sure I would not be as concerned — or work to educate– or would we live as healthy as we do–or would we lve totally chemical free– or would I spend hours & hours a day helping others set up MCS safe homes– & help them change their lives to a healthy one– nor would I have a blog that I put hours into trying to help educate others to also think about how they live!!!!!!! MCS is not who I am– but has made me a better me— one who always tries to also help others in this world live the best lifestyle they can also!!!!!!!!!!
Thank you for sharing! I too feel that getting diagnosed with a disease has opened my eyes to lots of other issues and made me better able to empathize with others who are ill or affected by their environment or diet. It does in a way make us better, stronger people!
[…] Do you wear your snake-eating-a-unicorn tattoo on your sleeve? (Or, do you call yourself a “celiac… […]
You bring up a great bunch of questions. Honestly, I kind of hate my gluten issues to be the topic of conversation because I’m SO MUCH MORE than gluten and lack of ability to digest it. But, I’m also the “Accidental Nudist” due to modeling, and I’ve expressed my concerns that perhaps I’ve painted myself into a corner with my writing because I’ve only been asked to write for Nudist/Naturist publications.
In the end, I think how we define ourselves in the moment is more important than how everyone else defines us. I’m a Celiac, sure, but I’m also a: recreational nudist, model, writer, Office Ninja, Social Media Technician, wife, lover of food and beverage, etc. We are never just “one thing”, and those that define us by “one thing” are narrow minded.
Interesting! (It may please you to know I wasn’t even aware of the nudist thing…definitely not how I identify you, at least!) I think being able to reel off a list of significant parts of our identity is really important and appreciate the demonstration of it by you and Kathryn. No one person is ever just one thing, and they shouldn’t be defined by just one thing by themselves or others.
My blogging identity is high on the identification scale because that’s what the blog is about but when it comes to real life only those closest to me know about my lupus. I’d been living with it for years before I even told some of my extended family. The celiec is a little different because like you said…on some level it has to define us every single time we eat with others. I would never announce to my waiter that I have lupus but pretty much have to announce the celiac if I want to try to prevent a glutening episode.
Really good point. I have some other health issues I rarely talk about explicitly even on the blog, so I can relate from that angle. Some things are need-to-know, others aren’t! I think often others identify us by the few standard questions everyone asks upon being introduced (job/school, hometown, family) and so for most illnesses there wouldn’t be much of an opportunity or reason to reveal them to a casual acquaintance.
I’ve been variously a hider of the tattoos and a reluctant sharer. I am still fighting with myself to be more active and advocate for myself more strongly. I don’t call myself a celiac because I don’t have that diagnosis, but I’m severely gluten-intolerant. I think I identify more with my limitations when I feel ill than when I am well. Or when I’m stressing out over eating with people I don’t know.
To some degree, though, I’m okay identifying to the world as someone with food allergies, at least in the blog world, so that I can also make the point that though these issues circumscribe a good portion of my life, I’m not hiding out. Writing for the blog always makes me feel like I’m turning this thing I hate into something positive. Especially when one of my recipes turns out just as I wanted it to.
It certainly is a delicate balance. I guess I’m super judgmental because I get just as annoyed with the underindentifiers as the overidentifiers. There IS a happy medium! And surprise surprise, I’m pretty sure I could be the poster child of that happy medium. But I’m biased.