Tag Archives: illness

Do you wear your snake-eating-a-unicorn tattoo on your sleeve? (Or, do you call yourself a “celiac”?)

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, Lymiesspoonies. 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:

tattoo of badger fighting snake

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.

What about you? What do you refer to yourself as? Where do you fall on the snake-eating-a-unicorn identification spectrum? Has that changed over time? Are you happy with where you’re at now?

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Don’t know much about chemical sensitivity?

Have you seen the movie Safe?

It’s about a woman (Carol, played by Julianne Moore) who develops a mysterious and steadily worsening illness—most likely multiple chemical sensitivity.

I watched it in college. Though it was a great film, it encouraged me to dwell on my own mysterious illness, which had begun earlier that year. The film set up questions like, “Is her illness even real? Will she ever get better?” Watching it, I couldn’t help but wonder the same things about me.

Later, of course, I found out I have celiac disease, and that it could get better. I just have to not eat some things (okay, a lot of things). Except for avoiding crumbs, I don’t have to worry too much about my environment. I won’t find gluten in the air anywhere besides a bakery, and the worst chemical I contend with is natural flavorings.

cover of Allergic to Life by Kathryn Treat

But I remained curious about chemical sensitivity, which I didn’t know much about beyond its portrayal in the film.

Now, I’ve learned about it from Kathryn Chastain Treat, one of my earliest readers and strongest supporters. She blogs about her extreme chemical sensitivity, and she’s just finished a book: Allergic to Life.

To celebrate her book’s release, I asked her a few questions about what is still a misunderstood and mysterious disease.

Readers, we’d love to hear your answers to these questions, too!

What do you feel your experience has in common with the experience of people with celiac disease, gluten intolerance, or food allergies? What’s most different?

Kathryn: I feel that in some ways we are very similar. We can’t just go and eat anywhere or anything. I have food allergies, which causes issues similar to those that someone with celiac disease encounters when dining out or with family and friends.

What makes me different is that I have not only food allergies, but also sensitivities to chemicals (perfumes, colognes, fabric softeners) and mold. I do a lot of dining at outdoor cafes if they can tolerate my food allergies (which include foods that may contain mold, like vinegar and soy sauce) and if I can manage to find seating far enough away from someone who is very scented.

What misconceptions do people have about your illness? Which get you mad? Which do you think are just funny? How do you respond?

Kathryn: I believe people, including many in the medical profession, feel that my sensitivities to chemicals and mold are not that serious. They believe that if I can manage a short time in a store (with my mask) that I should be able to go anywhere anytime I want. I also feel that people believe because I do not work and stay at home that I just sit and watch television and eat bon bons in my fluffy slippers.

What makes me the maddest is not taking my symptoms seriously. I think the perception that I have all the time in the world because I don’t work is probably the funniest. They have no idea how much work it takes to stay as well as I have managed to get and how long it takes to clean my house.

I have responded that my total load of what my body tolerates varies from day to day. If I am having a good day, then I can make a trip to the store. I can’t do this every day or spend all day doing this because despite my mask, my body gets too overloaded with chemicals and I end up sick. Sometimes I just ignore it all together because it is hard to convince someone once they have their own preconceived ideas.

What’s the funniest thing that has ever happened to you as a result of being ill?

Kathryn: My younger daughter was here for a visit and we were scheduled to visit my older daughter. My younger daughter had her hair done earlier in the day. Not thinking (I blame my off and on again companion—brainfog), we just jumped in my car. Of course she put on one of my required tyvek suits to avoid bringing any fragrances or chemicals into my car. We started down the road, and about ten miles into our trip I was having difficulty. I was getting a headache, congested, and my voice was slowly getting more of a crackle in it. Suddenly it dawned on both of us that her hair was making me ill.

As soon as possible I pulled to the side of the road and we both jumped out. How were we going to make it safe for us to continue on our journey? We couldn’t go on the way things were and I couldn’t call anyone to come help us. We searched the back seat and then the trunk to find something we could put over her hair.

Aha! There it was, a white plastic garbage bag in my trunk. I always keep some in the car for emergencies or having to put someone’s belongings in it before they can ride with me.

We got the bag out of the trunk and tried to put it over her hair. The wind was blowing and gusts of air would get under the bag and fill it like a balloon. We fought and fought the wind and the air in the bag. Here we are on the side of the road, she is already wearing the white tyvek suit, and we are now trying to put a bag over her head.

Enter the highway patrol cruiser. Just as I thought things couldn’t be worse or crazier than they were, the officer gets out to see if we need assistance. I have to explain as simply as I can without appearing to be a lunatic that I have sensitivities to chemicals and my daughter has just gotten her hair done, making me ill. I also explained that we were trying to cover her hair up with the bag but the air kept getting inside the bag. I purposely tried to ignore the fact that she was dressed in this white suit. The officer, however, noticed and made some funny comment about her tyvek suit and Ghostbusters and then calmly walked over and helped us get the bag on her hair. I was then asked to move aside so that he could write down my license plate number, which was required because he had stopped to check our status. As he walked away, he said it bothered him too when his wife got her hair done.

The story doesn’t end there. A few weeks later our tenant came to pay rent. He was talking about having coffee with his highway patrol officer friends. One had commented about these two women on the side of the road and how he had to help one put a bag over the other one’s head. I immediately started laughing and told him that I was one of the women he rescued that day. Our tenant knows all about my sensitivities and about my story. He started laughing and said he couldn’t wait to tell this particular officer that he knows the women.

I knew the officer would most likely go back and tell the story to all his buddies. I mean, how often does this kind of thing happen?

Okay, now what’s the least funny?

Kathryn: The least funny thing was when I made a quick trip with my daughter into Target. We were getting what she and I needed when we ran into a woman pushing her shopping cart with a little girl trailing alongside her. She saw me with my mask and made the fastest turnaround I had ever seen someone make with a shopping cart. I am sure she thought that I was contagious, and what she never knew was that I was more likely to get sick being around her than her from being around me.

What book or movie character would you nominate as the mascot for chemical sensitivity?

Molly: This was my final question, but we’ve both been wracking our brains and haven’t come up with anyone yet (there’s gotta be a Harry Potter reference in here somewhere). I don’t want to nominate Carol, because Kathryn and Carol don’t seem too similar (watch the film and you’ll agree).

Can you think of one? Let us know if so! Also, be sure to share your own funny and unfunny health stories. And, of course, check out Kathryn’s book.

She is offering a giveaway of three autographed copies through Rafflecopter, and her book is available at Barnes and Noble and Amazon (prices vary). Autographed copies (US Only) will be available on her website.

This is stop #7 on her book blog tour, and you can find the rest on her blog.

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Remember you are not the doctor.

Photo © Josh Clark | Flickr Creative Commons

Photo © Josh Clark | Flickr Creative Commons

Doctors’ receptionists have a tough job. They deal with stressed, unhappy, contagious people all day, and when they aren’t doing that, they file and photocopy paperwork, deal with ancient fax machines, and, I bet, put up with crap from the doctors. I’ve read that some offices don’t even provide their front-desk staff with internet access—which, to me, is practically a human rights violation. They probably get ill constantly from all the germs, and when they aren’t physically sick, they’re sick of their job.

Knowing this, I try not to be one of “those” patients. I’d say I’m pretty friendly, and I know I’m polite. In return, I hope for civility and, ideally, a bit of compassion. In my most recent medical experiences, I’ve encountered neither. My doctor never called me with my positive bloodwork results, and when I scheduled a follow-up, he and his staff forgot to check my results until I asked about them specifically. They were brusque and unapologetic and they sent me a duplicate copay bill.

When the time came to get my biopsy results, I didn’t want to go in and do it all over again (not to mention pay another copay or two). Instead, I tried to find everything out over the phone, and it got messy. In the end, the receptionist got fed up with me and said, “Remember, ma’am, you are not the doctor.”

This stuck with me, and not only because I found it funny that she called little ole 23-year-old me ma’am. It was also simply good advice. As I gear up for my first appointment with a brand-new doctor, I thought I’d share it. If you are a doctor, this may not apply to you. But otherwise:

Remember you are not the doctor.

Remember you do not have the doctor’s medical training, or credentials. Remember that to many, your understanding of your own health will never count. Remember you are presumed ignorant. Remember if you speculate or self-diagnose, you will be accused of hypochondria. Remember that not everything you’ve read or heard is true. Remember you may be biased, and remember fear can cloud your judgment.

But also: Remember it’s okay to be scared.

Remember to stay calm. Remember you care more about your health than anyone could who is paid to do so. Remember you have spent many recent hours researching your symptoms, and that if your doctor hasn’t kept up with latest research, you may in fact be better informed. Remember you are open to new ideas. Remember you do not have hundreds of other patients to keep track of. Remember you are focused. Remember you are the world’s leading expert on your own medical history and feelings.

Remember you are you.

Remember it is you, and not your doctor, who must live with whatever treatment—or lack of treatment—you’re prescribed. Remember you can seek a second opinion, or a third, or a tenth. Remember instinct counts for something, too. Remember it is easier for you to walk out on your doctor than for your doctor to walk out on you. Remember you’re worth more than a copay. Remember there are people rooting for you or relying on you to get well. Remember you are your own best advocate, but you are not your only advocate.

Remember you are loved.

Remember you are smart, and strong, and beautiful, and kind, and worthy, and interesting, and special, and whatever else you need to remind yourself of before you walk into the waiting room for your next appointment; but for God’s sake, remember you are not the doctor.

And remember you’re important anyway.

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