Interviewing Health Activists: Katie Schwartz, Founder of Dear Thyroid™ Part 1

Katie (@dearthyroid)

In honor of January’s Thyroid Awareness Month, I had the awesome opportunity to interview Katie Schwartz, Health Activist mastermind behind the community Dear Thyroid™. Like her community, Katie is fiercely dedicated to being honest and real about life and thyroid conditions. Her responses to my questions are saturated with rich, fun language, likely due to her background as a comedy writer and fellow lover of words. In addition to being well-spoken, Katie takes a fresh approach to advocacy that is both light-hearted and content-centric. (Perhaps it’s no surprise why I’m such a fan!) Personally, I connected immediately with Dear Thyroid’s mission statement and their literary focus. It doesn’t take long to see why this community is special and why it has engaged so many. A self-proclaimed “pushy broad,” you can expect many more great things from Katie and her community in the future.

Amanda: I’m so excited to be chatting with you today Katie! Thanks so much for taking the time out to share with our community.

Katie Schwartz: Me too, Amanda! You’re passion and enthusiasm for health advocacy and WEGOHealth.com is infectious. LOVE IT, GIRL. Thanks so much for your time and the opportunity to talk about Dear Thyroid™

A: First off – tell us a little bit about your background and why you became an advocate for thyroid diseases and thyroid cancers.

KS: I’m a comedy writer. Life, pre-sickness, was fantastic. I appreciated my life, family, friends, and valued time; mine and others. I knew who I was and where I came from. I didn’t need an internal or external makeover.  I didn’t need a disease to teach me anything. Suffice it to say, I don’t believe that we create disease or invite it into our lives. Disease just is. When it happens, life as you know it is forever changed, for yourself, your family and friends.

Though I was diagnosed with Graves’ and Graves’ eye disease 4 years ago, I’ve had it for at least 10-years. Unbeknownst to me, it was genetic.

Unfortunately, I almost died from thyrotoxicosis and thyroid psychoses. My mother and sister intervened to save my life.

Upon diagnosis, I wrote scathing hate letters to my thyroid. I wondered if anyone wanted to write one too. One day, I launched a blog and invited other thyroid patients to write and submit letters to their thyroids. Within a few months, a brand, a website and a community were born.

As letters poured in from patients and survivors; I realized that elements of my story kept reflecting back to me in various degrees. Multiple misdiagnoses, mistreatment and neglect were as normal as brushing your teeth in the morning. The more I read the more heartbroken and enraged I became. These exquisite, brave and wonderful women, men and young adults had rich, full lives that were ripped away from them without forewarning or consent. Their courage to keep fighting and sharing their stories was the impetus for my unwavering determination to be part of the movement that invokes change for thyroid patients. That and I am a pushy broad. So, I’m not giving up.

A: What made you get involved in the first place?

KS: I was frustrated. I wanted to know exactly what other patients were going through, in their words. I wanted the uninterrupted, uncensored grit. I didn’t want anything sugar coated. I was frustrated by the lack of spinning and spiraling. I thought, certainly others feel this way too, right? Anger seemed to be taboo. Not that anger is an aphrodisiac or anything; I just refused to believe that I was the only one who felt angry about my disease.

Save religion and politics, anything goes on Dear Thyroid. This disease takes your mind to dangerous places and morphs your body into an unrecognizable stranger, to yourself and others. That brings up a lot of anger, frustration and sadness. We encourage everyone to write honestly. We want the good, the bad and the ugly.

A: How has Dear Thyroid evolved to take that mission to the next level? What keeps you going?

KS: As Dear Thyroid™ has grown, so have our goals. From a literary perspective, we receive poems, songs, rants, raves, love letters, hate letters, letters to doctors, and to and from families, among other literary works. Each piece is a gift, and treated with the utmost respect. Letters from families are as important as letters from patients. This disease impacts them as hard as it hits patients. In addition, we have ongoing columns about Graves’ disease, thyroid cancer, chronic illness, and a few more coming soon. We also giveaway Thyroid Awareness Bands, provide offline local support, family support and Wearing My Disease on My sleeve. Recently we launched a “Thymentor” program. We sell humorous T-shirts. (To be clear, we are in the process of becoming a non-profit and we do not accept any revenue.) We also partner with other organizations and groups to support their awareness endeavors.

I am empowered and inspired every day by our community and their courage. They motivate me to do better, fight harder and challenge myself to think as far outside the box as possible, to make life better for all of us.

As for the Dear Thyroid Team, I am VERY lucky to be working alongside such extraordinary, dedicated and talented individuals. Our team members donate their invaluable time, to write columns, support community members, and forge partnerships with other organizations. They donate their time—THAT’S AMAZING. They give so much of themselves to our community. I am in awe of them and have tremendous respect and gratitude for them. Each has such a unique point of view. With a pure heart and passion for their work, they bring it.

Stay tuned for Part two of the interview with Katie where we discuss online activism, the highs and lows of online community, and the thyroid itself!

Continue onto Part Two»