Tag Archives: celiac disease awareness month

Playing spoons

Are you a spoonie?

Photo © Holger Eileby | Flickr

Photo © Holger Eileby | Flickr

No, I didn’t mean Moonie. The word spoonie is a catchall term for people with chronic illnesses or disabilities. I first learned it from Rachel’s fantastic blog Do I Look Sick?and then I started seeing it all over: in other blogs, Tumblrs, Twitter bios and hashtags, even tattoos.

It’s a catchy name, in my opinion, because it’s a bit silly (and therefore a more pleasant self-descriptor than, say, patient or sufferer—ugh) and because it brings together people who share similar concerns but risk never realizing it because of the differences between their particular conditions.

The term comes from “The Spoon Theory” by Christine Miserandino, Christine’s story of explaining to a friend how it feels to live with lupus. Since they were at a diner, Christine used spoons as a visual aid. She collected a pile of them and said that these were her spoons for the day. Everything she needed to do for the day, simple or complex, would require one or more spoons. She then talked her friend through her daily routine to demonstrate the choices and sacrifices involved in living with a limited amount of spoons. There’s a sweet end to the story—click the link to read it in full. (You can also play a demo to get the idea.)

The spoons, of course, are simply a metaphor for energy. Not necessarily a perfect one: After all, sometimes energy just seems to disappear for no reason, which spoons do not, unless they’re being collected in someone’s bedroom awaiting a dishwashing session, or being snuck out from under your nose in a game of Spoons.

Photo © tsmall | Flickr

Photo © Tom Small | Flickr

Still, the story spoke to me in a way that stories in this genre generally don’t. It perfectly captured how I feel when my friends want me to, e.g., stay out later than I planned: If I do it, I’m choosing to throw away my entire next day because I’ll be too tired to do anything. And if I’m too tired on a Sunday to do my errands and laundry and cook for the week, those things most likely won’t happen at all that week because I’ll be too tired after work to do them. Not to mention that my body does at least a little better with routine, and I hesitate to lose that edge by messing too much with my sleep cycle. To say all that is so much more whiny and defensive than simply, “I’m out of spoons.”

Of course, everyone has their own energy level, and many healthy people—particularly mature people—do think about how best to parse out their energy to avoid burnout. But I, with my lack of nutrient absorption and all that, have fewer spoons than a lot of my healthy 20-something friends do, and more to lose by using them unwisely.

Lately, despite careful GFD adherence, I seem to have even fewer spoons. Avoiding cross-contamination in a shared kitchen adds extra little steps to my routine, all of which take spoons. Gluten fear probably snags a few more spoons. Plus, giving up caffeine has been like dumping an entire cutlery drawer into the trash. (Upside: I’m sleeping more. Downside: All that sleep is really cutting into my writing time.)

Pretty, and probably super gluteny, wooden spoons  © Alan Levine | Flickr

Pretty, and probably super gluteny, wooden spoons © Alan Levine | Flickr

Since learning that I have an actual disease with a real name, I’ve cut myself more slack when I don’t feel up to doing something, and my friends have, for the most part, borne it patiently—though it has been suggested that I use being sick as a crutch for laziness or antisociability. Probably in at least a few cases that’s true (and a tendency I need to work against), but overall it’s more that I see this as a time to be extra careful with my health. To use my energy well in hopes it gets me through this healing stage more quickly. To keep up with the things I most want and need to do now, and save some things for, say, six months from now. To be the best spoonie I can be.

Although I identify with the spoonie community (that’s a fun phrase to say out loud), I recognize I’m extra fortunate in that, with just diet changes and no medication, my energy should increase, eventually. Eventually, I should have more spoons. I’m also well aware that I have a whole lot more spoons than a whole lot of people, and that I’m very fortunate and privileged to have the ones I’ve got.

This is the last day of Celiac Awareness Month, and I started the month intending to be more aware, generally, not just celiac aware. Although I’ve had fewer blogging spoons available this month than I hoped (spent a few of them on giveaway-entering), I’m ending it on the same note, aware not just of celiac disease and gluten sensitivity but also the full spectrum of spooniedom. We’re not the same, but we’re similar. If you’re a spoonie, you’re welcome here. Use your spoons as you choose, and no, I won’t steal them from you while you’re focused on the other cards you’ve been dealt.

How do you feel about the word spoonie

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Not enough celiac awareness? I’ve got plenty.

So we’ve come to Celiac Awareness Month. I’m excited for all of the special features and extra blogging everyone will be doing this month, and maybe I’ll even get out to an event or two in the real world. But for myself, I’m mostly going to keep doing as I’ve been doing. Because I’m already celiac-aware. Celiac-hyperaware, you might say. If you split open my skull to check, my brain might look something like this:

celiac_aware_brain

Okay, maybe with a little less space for spatial awareness. But you get the picture.

Point is, I already devote a lot of gray matter every day to thinking about, talking about, writing about, obsessing about celiac disease. If I could only remove tiny hunks of my brain tissue and implant them in other people’s brains to repopulate their awarenesses, then they could think a bit more about it, I could think a bit less about it (and more about my novel), and we’d have ourselves a healthy celiac awareness ecosystem. Like a fecal transplant!

In a small way, that’s what I’m trying to do with this blog. (The awareness transplant, not the fecal kind.) Although, let’s be honest here, most of you are pretty darn celiac-aware already.

When I learned I had celiac disease, I started from a point of heightened awareness. I’d been researching food-related illnesses for some time—call it a hobby—and in my professional life I worked (and still do) with gluten-free cookbooks. I also reaped the benefits of living in a place and time that is in fact more celiac-aware (or at least gluten-aware) than ever before.

But I definitely became more aware once I had it myself. I started this blog, I saw celiac symptoms in everyone I knew, I began musing on grandiose ideas like hosting gluten-free speed-dating events or providing gluten- and allergy-free birthday cakes to kids whose parents can’t afford them. So far, these ideas have foundered on the shoals of logistics. If you live in New York and want to talk about any of them, please get in touch!

Although I’m enjoying this blog and being a part of the smart, supportive, friendly community here on the internet, I’ve struggled with this. Given that I have celiac disease and I think a lot about celiac disease, I feel vulnerable to the claim it’s “self-indulgence” more than “celiac awareness” that fills my brain. I feel guilty.

For example, when I wrote about the connection between hunger and celiac disease, I looked into how one could donate gluten-free food. But then I thought, where was I before I knew I had celiac disease? And even setting that aside, where have I been in general? The hurricane that wiped out huge portions of the New York metro area happened months ago, and no doubt the best time to begin contributing would have been in October.

Plus, hunger was of course a fact long before that, a systemic problem affecting an enormous population nearby me and worldwide. I knew that well before the fall of 2012. Why haven’t I been better about contributing to the solution? Why has it taken me having a problem to want to help others? And why is the idea of donating Rice Chex so much more appealing to me than the idea of donating money to a general fund for the hungry?

Then I get cynical. I wonder, does every celiac disease advocate have celiac disease? Are all food allergy advocates people who have, or whose family members have, food allergies? Are all antiracism activists all people who have experienced racism? Are all GLBTQ activists GLBTQ? Are all feminist activists women?

Is all activism selfish?

Are we all too wrapped up in ourselves to get involved in helping people whose concerns are foreign to us? And is a disabled person who spends his life advocating for disability awareness less noble than an abled person who does it?

I believe the answer to all of these is no. There are people who advocate for others almost reflexively, whether or not there’s a personal connection. There are entire industries built around nonprofits and public service that allow many, many people to work or volunteer in support of awareness or advocacy campaigns of all kinds.

And furthermore, I don’t think activism is really cheapened by being beneficial to its advocates. If someone spends a lifetime advocating for the rights and happiness of a population to which he happens to belong, is that so bad? Plenty of other people are part of the same population, and not doing much to help it or any other group.

A life of service is a good life. Sacrifice and selflessness can support a life of service—but only to a point. If you feel unconnected to your work, you’re more susceptible to burnout. And if you have the impulse to help but allow yourself to be stymied by regret that you didn’t help enough before, or aren’t helping enough people, or aren’t helping for the right reasons, then you won’t end up being helpful at all.

Part of any awareness campaign must be an awareness of just how many things there are to be aware of. There are good and bad causes, selfish and selfless concerns competing for everyone’s attention at every moment. By focusing our energy on one concern, we’re setting aside others.

I aspire to be aware of suffering, injustice, and inequality, broadly speaking. I hope that my daily words and actions demonstrate this, and when they don’t, I hope to be called on it so I can do better. I hope that as my life evolves and settles, I find the time and the energy to help more people more than I do now. And in the meantime, I’ll strive to be self-aware about my own divided awareness.

That said, bring on the Bob’s Red Mill giveaways. I’m ready.

Happy Celiac Awareness Month, folks.

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Help me write a letter to my doctor

Last week (erm, two posts ago…gosh, I’ve been lazy) I asked why doctors can’t just talk to each other. I wondered if all my docs could have put their heads together and figured me out faster. The consensus was “maybe, maybe not.”

Photo © Ben Weston | Flickr

Even though celiac disease is associated with a huge range of symptoms affecting virtually every system and function of the body, with implications going well beyond the gastrointestinal, it’s GI doctors who are overwhelmingly responsible for diagnosing it. Other doctors are less likely to be trained in recognizing it, and apparently also less likely to care. (Back in February, Jess of The Patient Celiac posted a selection of anonymous comments on an online doctors forum that included this gem: “Ugh. Is there any disease more boring and worthy of turfing to the GI guys than Celiac Sprue?”)

So although in an ideal world, any of my doctors could have diagnosed me separately or in collaboration (or a supercomputer could have), in the real world it was pretty much down to the one who specialized in intestines to diagnose me.

But she didn’t.

I saw a gastrointestinal doctor for the first time back in December/January of 2011 after half a year of symptoms (my insurance made it hard to see a doctor earlier, since I was in college out of state). In that half a year, I’d had an emergency room visit, I’d tried a strict low-FODMAP diet with no results (besides an initial placebo high that wore off after a week), and I’d worried a LOT.

The GI doc did a colonoscopy but—inexplicably—not an endoscopy or at the very least a blood test for celiac disease. She wasn’t interested in talking about food (turfing it to the dietitian guys, I suppose, though she didn’t set me up with one), and she sent me on my way with OTC meds and all but a pat on the head.

Since I first got my positive bloodwork results, even before I had a fully confirmed diagnosis of celiac disease, I’ve been toying with the idea of calling or writing to this doctor. Now that it’s nearly May—celiac awareness month, as you may be (heh) aware—it seems like a good time to follow through.

What I want to accomplish here is:

1) Tell her my story
2) Understand why she didn’t test me for celiac disease (or, if she did without my being aware, why she never contacted me with the results)
3) Let her know, if she doesn’t, that my particular symptoms are commonly associated with celiac disease
4) Encourage her to test for celiac disease before diagnosing IBS in the future.

What I don’t want to do is:

1) Come off as whiny
2) Come off as condescending
3) Offend her sense of her own expertise
4) Be immediately dismissed
5) Threaten a lawsuit.

Unfortunately, I’m a whiny, condescending, offensive, easily dismissed person prone to making accidental threats. So I need your help!

Have you ever written this kind of letter? Whether or not you have, do you have any tips for me? Any specific things I should say or not say?

Is it better to do this in writing or over the phone (in your opinion or experience)?

Do you feel this kind of patient-to-doctor education is possible and worthwhile? What are other ways to go about it?

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