Member Spotlight: Sarah FitzHenry
Each month, we invite DBC members with a connection to our theme to share their personal experiences with us. Interested in sharing your story with the DBC community? Email us at firstname.lastname@example.org.
Please introduce yourself to the DBC members.
Hi DBC readers! My name is Sarah and I’m a reader, a teacher, and a lover of glitter and unicorns. I live with my husband Dan and our two cats, Brian and Beebers, in Charlottesville, VA. I’m the librarian for grades K-8 at a local independent school, and (in my unbiased opinion) it’s the greatest job in the world. Outside of my amazing day job, I have a lot of passion projects; I love to volunteer in the Charlottesville community, run a website called Fitz Between the Shelves, teach aerial yoga at a local studio (if you don’t know what aerial yoga is, go Google it!), and love fun creative stuff like photography, guitar, and writing.
As a librarian, I’m a proud vocal advocate for diverse literature, and believe that all children deserve to see themselves reflected in the books that they read. But I had never considered diversity of health in literature until the DBC posted the February topic. Although I have struggled with chronic illness for more than half of my life, this is my first time speaking publicly about my experiences. Please excuse my nerves!
Why is this month’s topic, chronic illness, near and dear to your heart?
I lived with undiagnosed Celiac Disease until I was 25 years old. It smoldered slowly through my body, ravaging my digestive system, and giving me wild neurological peaks and valleys. It left odd and indecipherable trails of physical symptoms like breadcrumbs. During my high school and college years, countless doctors pronounced me overly emotional, sent me home with pregnancy tests, or anti-anxiety and depression medication. I believed them, because...why wouldn’t I? I took my pills, followed my directions, and kept quiet about my worsening symptoms. Finally, in graduate school, after my mother’s tearful begging for another panel of blood tests, a doctor called with an answer. “Your results point to Celiac Disease,” she said in a voicemail. “Have a great day!”
Wait, did she say disease? There must be some mistake, I remember thinking. I’m only 25. I mean, yeah, I’m in the bathroom 10-15 times a day. And maybe my hair falls out sometimes. And some days I have to sleep for 12-14 hours if I want to make it through class. But come on, I’m not a sick person. A sick person lives at the hospital. I went to the movies yesterday! I can’t be a sick person.
But I was. Two rounds of endoscopy confirmed Celiac Disease. So I started a new life - that of a person with a complicated autoimmune disease. I researched, joined online support groups, saw a nutritionist, and threw myself headfirst into my new gluten free life. I watched eagerly as the people on my Celiac message boards flourished; soon, it would be my turn. But the requisite six months passed, the time it takes most people to see a dramatic improvement, and I still felt terrible. A year went by...then two...then three. My illness morphed, sometimes waxing, sometimes waning, dancing skillfully around each test and treatment that my endless string of doctors attempted, but my body never found its rhythm.
In the six years since my diagnosis, I have learned that my Celiac Disease is not a textbook case. While the only known treatment for the autoimmune disease - a lifelong adherence to a strict gluten free diet - has helped some symptoms, my intestines have not healed themselves the way science predicted. I still struggle to absorb the vitamins from the food that I eat, and my digestion is… complicated. The bacteria, enzymes, acids, yeast, and other miscellaneous tools that all digestive systems need to work can’t seem to find a peaceful balance within me for more than a few weeks at a time. As is the case with many that were diagnosed with Celiac in adulthood, I’m teetering on the brink of more autoimmune conditions, but do my best to keep them at bay with supplements, an active lifestyle, and a positive attitude.
Have you read our February selections, Caleb & Kit and Left Neglected? What did you think?
I read both! And I loved and hated them at the same time. Although we have very different diseases, I share many of the same symptoms and complications with Caleb from Caleb & Kit. Counting pills before meals, requiring special (and inconvenient) food, tiring out easily, feeling like a burden to the people I love - it was hard to see these pieces of myself in print. In Left Neglected, Sarah struggled to accept her new reality and to let go of who she used to be, and that part of her journey resonated heavily with me. When your goal is to be Superman, but your body holds you back, it makes you feel like a failure. I had never read stories like Caleb’s and Sarah’s before, with incurable but not terminal health struggles at the forefront. It was scary and exciting, and shone a light on some things in my own life that I had been hiding from.
As an adult, I am still struggling to come to terms with the fact that my chronic illness will be a part of me for as long as I live. So when I think about children trying to understand what a lifelong illness means for them, it hurts my heart. Children look to literature to better understand issues that are beyond their scope. It helps them to step outside themselves and see the bigger picture. For those struggling with a chronic illness, books like Caleb & Kit and Left Neglected will feel like a lifeline. For those that do not have a connection to chronic illness, these texts will help to normalize medical conditions and build empathy. For me, these selections and their complex characters were reminders that I am more than my test results and my pill organizers. And if it means that much to me, as an adult that has had years to come to terms with my health, I can’t imagine what it can mean to children just learning to live with their chronic illnesses.
Do you find there is a stigma around chronic illness in our culture? How has this impacted your experience?
Yes, I do believe there is a stigma around chronic illness in our culture. When I was diagnosed, I had never even heard of Celiac Disease - but the word “disease” stopped me cold. All I knew for sure was that I did not want to be a sick person, unless it came with a quick and effective cure. What I knew of illness from television and movies wasn’t pretty. Characters with diseases were weak, dull, and burdensome… until they were either cured or killed off. From a young age, we are trained to believe that sickness must be either deadly or fixable: if you’re really sick, you take medicine or receive treatment, and get better. Either that, or you die. When illness doesn’t follow that pattern, we don’t know how to respond. And because these simmering, constant, invisible illnesses aren’t talked about in our culture, no one else knows how to respond to us, either. Friends don’t know how to talk to us. Doctors don’t to how to treat us. What if you can’t be cured, but you’re not going anywhere? If you’re too sick to be well, but too well to be sick, where do you belong?
It’s powerful to see books like Caleb & Kit and Left Neglected because they normalize living with an incurable chronic condition - and having a life outside of it. Most stigmas and prejudices are born from misunderstanding and lack of information; by giving a peek into the life of a person living with medical hardship, we strip away the mystery and replace it with a realistic narrative. As a librarian and a woman with chronic illnesses, I hope to see continued representation in literature, especially for children.
Are there any additional resources (books, articles, podcasts) about chronic illness that you would recommend to our readers?
Chronic illnesses can be so isolating, and trying to explain what it’s like to live with Celiac Disease is tricky. My friends and family like to ask if I’m feeling “better”, but that question can feel impossible to answer. My sister recently found this article called What Everyone Ought to Know about Celiac Disease that helped her to better understand my experience with Celiac, and others might find it helpful, too. For more general information about the disease, The Celiac Disease Foundation is a great resource. Gluten Dude writes about the everyday issues of Celiac Disease - long after diagnosis and “treatment” have kicked in - in a way that is down to Earth, relatable, and funny.
In my recent struggles with SIBO, Candida, and Leaky Gut, I have felt especially frustrated with doctors. A podcast called the primal shift, featuring SIBO expert Rebecca Coomes, described my symptoms and made me feel less alone. The specific episode is called From SIBO to Healthy Gut, and you can find it here.
Is there anything else you’d like our members to know?
It’s frustrating when your medical battles are the stuff of jokes and trends. Despite it becoming a common joke on the sitcom and late-night circuit, Celiac Disease is a life-altering medical condition. There is no cure, and a lifelong lifestyle change is the only known treatment; when it comes down to it, my relationship with food is what keeps me alive. I know my diet is weird. You don’t have to tell me :)
If you’re living with or know and love someone living with chronic illness and have wisdom to share or are looking for a friend, I’d love to meet you. Reach out and say hello!