I WAS SO TOUCHED WHEN Katie Schwartz of Dear Thyroid fame asked me to participate in blogging community effort to raise awareness for thyroid diseases and cancers. When it comes to blues and truths of the ol’ butterfly gland, I’ve got plenty. So here goes…

Thyroid diseases and thyroid cancers are fun, right? Unfortunately not; they deeply affect us as patients and our families, indelibly leaving an imprint on our minds, bodies and souls. None of it is easy. If we’re going to bring awareness to this disease, we have to come together as a family. Our collective voices have the power to invoke change. Because the holidays are a time of celebration with the people we love and a time to reflect, what better way to ignite change, and move our stories forward, oh and have a laugh along the way, than to connect with each other?

1) Have the holidays and your experience of them changed since you’ve been diagnosed?

Since I was diagnosed with Graves Disease six years ago this winter (yikes six years!), I’ve basically spend my whole adult life living with a cranky butterfly gland. During these years, everything about my life—holidays included—have drastically changed. Not just because of a hyperactive thyroid, but because this has been turbo-transitional time for me. That being said, my ability to knock out a killer holiday party with a steaming cup of good cheer has been significantly modified by my Graves Disease. And returning home for the holidays always means my disease is under a magnifying glass. My immediate family always wants to know how I’m feeling and whether I’m making the right decisions for my health. I’m pretty sure my mother is hiding a daily log during the holidays of how swollen my thyroid is / how dark the circles under my eyes are / how much sleep I’m getting, just so she can stay on the ball. Of course, she means well. But I’m convinced that this kind of motherly behavior is the only thing that will drive a girl more insane than an overactive thyroid.

2) What is your favorite holiday food/dish from childhood? What is your favorite dish now? (Did you have to change your diet at all since being diagnosed?)

I was quite lucky to have grown up in an oasis of health food. I was raised a vegetarian by my parents and still maintain that lifestyle today. As a child, I used to love dairy-heavy foods like macaroni and cheese. (I even used to sneak away to eat whipped butter from the tub with a spoon!) These days, I’m still a sucker for cream, but it’s always hormone free!

I guess since being diagnosed I’ve had an opposite experience with food than many people: I found myself returning to my roots. Throughout my childhood, my mom always pushed a diet of whole grains and veggies with moderate consumption of animal products. And while searching for wellness in the past several years, I’ve turned back to her staid advice.

3) How do you get through the stress of the holidays, paired with a disease? What are your coping strategies?

This time of year, I just try to remind myself to keep breathing. It’s surprisingly easy to forget about that when you’re in a store so crowded that it’s heated solely by the friction of customers’ wool coats and you find yourself in an impromptu shoving match over a shelf of whoopee cushions. Yes, just breathe.

4) Have you thought about submitting a letter to Dear Thyroid? If so, would your letter be a love letter or a hate letter? Would it be to your thyroid or from your thyroid?

I’ve written several letters to Dear Thyroid. Some hate mail, some desperate pleas, and some with love. It’s certainly been therapeutic to be a part of the Dear Thyroid support network.

5) What is the greatest misconception regarding thyroid disease and thyroid cancer?

I think many people who are coping with Graves Disease (I can’t speak to other thyroid diseases or thyroid cancer), are often viewed as weak or lazy by people from a distance because many of the symptoms resemble general malaise. It’s hard to convince members of a very work-oriented society that fatigue, sluggishness, or an inability to concentrate are a part of a serious illness and not just a sign that you’re slacking off.

6) What is the stupidest thing someone has said to you regarding your illness that, to this day, still makes you laugh or makes you angry?

I’ve found a lot of resistance in the medical community toward my decision to treat my illness with alternative care. Some doctors and nurses have given me compassionate advice while standing by me. But I once had a nurse practitioner threaten me by saying I would surely die if I didn’t go through with the radioactive iodine treatment.  She was so bossy and insensitive to my needs! I’m wincing even writing about it right now. But I feel a little more vindicated every day that I prove that quack nurse wrong!

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Dear Thyroid is a literary thyroid support community and blog. Thyroid patients are invited to submit Dear Thyroid letters; love letters and hate letters, among other thyroid literary things, such as Thyrants, Thygraphs, Thykus, Thyetry and Thysongs, etc. Our goals are for all of us as a community of patients to connect with each other and our diseases, and to bring awareness to thyroid diseases and thyroid cancers, we need and deserve a face and a voice. For our non-literary crew, we have monthly Flickr pools. Recently, we launched Dear Thyroid Local Meet Ups for offline support. Dear Thyroid Forums are forthcoming in December.

MOSEY ON OVER TO Dear Thyroid for a look at my first letter in a series that I’m writing called “Dear Anastasia’s Thyroid” (cryptic, I know). You may remember my previous two attempts to tell my rebellious butterfly gland to calm down, and now I’ll be sending it a bi-monthly letter to keep it in check. All the medical drama will be unfolding on Dear Thyroid from now on. Thanks to the lovely Thyroidess, Katie Schwartz, for giving me this opportunity!

TSP READERS, IT’S OFFICIAL. I’m now writing to you as a true member of the Dear Thyroid sisterhood. Yes, it has taken me over a week to actually finish a letter to my thyroid that is a bit meatier than my previous attempt (recounted here on TSP). But I can say that forcing myself to engage in a discussion (albeit a one-sided discussion) with my rebellious butterfly gland has proven to be rather therapeutic. You’ll find the full letter on Dear Thyroid’s new and improved WordPress site. And you, too, can become a part of the Dear Thyroid sisterhood by giving your thyroid or a loved one’s thyroid a piece of your mind by emailing to: submissions [at] dearthyroid [dot] com.

cooking up a batch of thyroid insanity. (photo from Dear Thyroid)

WHILE TSP’S OTHER SISTERS SEEM to be well-versed in the potential of online sisterhoods (Marion has her needles and yarn, Paige has a spatula and mountains of cookbooks) I had yet to find a community where I felt that I truly belonged…until now. I have come across a blog affectionately titled Dear Thyroid, which is just that–a collection of letters that people have written to their thyroids (or “an epistolary series and ongoing discussion about thyroid disease,” as site editors Katie Schwartz, Quin Browne, and Freida Bee put it), some in love but many in hate.

Imagine how my heart swelled (and no, it wasn’t just the manic heart-pound from to my crazy thyroid) when I browsed the blog, absorbing the mix of irony, humor and endocrine lingo. Feeling inspired, I opened a fresh sheet on Word and sat poised, ready to pound out my own “dear thyroid” letter. But after 20 minutes of deep thought and nail-biting, mulling over the past six years of my life, filled with doctors’ visits and tears and blood tests and that damn thump-thumping heartbeat all the time, the only thing I had on the page was:

Dear Thyroid,

YOU ARE SUCH AN ASSHOLE.

(At the very least it’s nice to have a place that will accept such a confession with compassion and humor without having to pay $100 an hour.)

‘Collectively, we are seriously and humorously spinning our thyroid yarns. Taking our butterfly glands out of the closet and into the world where they belong.’

And like so many of the sisterhoods that we’ve explored on TSP–from knitting to cooking and beyond–at the heart of thyroid commiserating and confessing is a narrative that fastens itself to sisterhood at infinite points. In the words of the website’s creators: “Collectively, we are seriously and humorously spinning our thyroid yarns. Taking our butterfly glands out of the closet and into the world where they belong.”

Any other TSP readers feel the urge to write a “dear thyroid” letter? Do tell, or better yet send it to Dear Thyroid at katiegirl [at] gmail [dot] com.