Member Spotlight: Katharine Scrivener
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 DBCers! My name is Katharine and I'm a 33-year-old book hoarder living in Baltimore with my husband Mike and miniature schnauzer Gus (if you follow me on Instagram you' might know that little floof already). I currently work full-time doing communications for a local university, with a little bit of freelance writing on the side. When I'm not working you can find me reading (obviously) or watching TV (some all-time favorites include Friday Night Lights, Parenthood, and Gilmore Girls). I also am an advocate for chronic illness, specifically cystic fibrosis, and spend my time sharing my story through various platforms: writing, speaking, social media, etc.
Why is this month’s topic, chronic illness, near and dear to your heart?
About 17 years ago, when I was a junior in high school, I was diagnosed with cystic fibrosis (CF). CF is a genetic disease, currently with no cure, that affects the entire body but particularly the lungs and the pancreas. Most people are diagnosed at birth, so my late diagnosis came as quite a shock. Having to come to terms with to living with not only a chronic illness, but a terminal one, has been incredibly difficult. In my mid-twenties I started working with the local chapter of the Cystic Fibrosis Foundation and began to share my story at events around Maryland. Since then, advocacy has been a passion of mine -- I've found that putting a face to the disease makes a big difference in getting people to support the cause. As I continue to struggle with what it means to live with CF, I also have found it immensely helpful to be honest and real about what it's like. It can be incredibly isolating to live with a disease that no one understands, but I also what to show that it's possible to live a full and joyful live in spite of -- and even because of -- these challenges.
Have you read our February selections, Caleb & Kit and Left Neglected? What did you think?
I read Caleb & Kit a few months ago and absolutely loved it. CF isn't often featured in books, so it was exciting to read a book that not only had a main character with CF, but that did an incredible job of accurately depicting what living with this disease is like. I particularly like that it's a middle grad book because it makes it far more accessible to all ages, as well as giving kids a look at living with a chronic illness. Beth did a phenomenal job of bringing awareness to the disease while still making it a book that anyone can enjoy -- this type of awareness can make a big difference for diseases like CF. CF is considered an orphan disease (only 30,000 people in the United States have it), which means that there is no government funding. Organizations like the CF Foundation raise money to support drug research and to improve the quality of life of patients -- awareness is a huge part of getting people to donate, volunteer, etc.
Do you find there is a stigma around chronic illness in our culture? How has this impacted your experience?
I definitely think there can be a stigma around chronic illness. People with various illnesses tend to be portrayed two ways: as heroes who are strong and brave or as people who should be pitied. But living with a chronic illness is far more nuanced than that. Having an invisible illness makes that even more complicated because it means that unless I share it with them, they have no idea -- and this has its pros and cons. In some ways it gives me a sense of control of my own narrative, but in other ways it makes the severity of it even harder to understand. Trying to decide how much to share about living with a chronic illness can be hard -- do I put on a brave face? Do I admit how hard some days are? Overall though, I've found that being honest, asking for help, and sharing my story has allowed me to connect with people on a much deeper and meaningful level.
Are there any additional resources (books, articles, podcasts) about chronic illness that you would recommend to our readers?
Other than Caleb and Kit (which I'm now recommending to everyone, especially those who know anyone with CF), I really enjoyed Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties by Laurie Edwards, as well as a book that comes out later this month, Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine by Michele Lent Hirsch. A fascinating article I read on Literary Hub is Why Does Literature Have So Little to Say About Illness -- it's an interesting take on why there seems to be very little representation of illness in fiction. And if you're interested in learning more about CF specifically, the CF Foundation website is a great resource, there's even a community blog that has a great mix of experiences and perspectives
Is there anything else you’d like our members to know?
One little known but important fact about CF is that in order to prevent cross-infection, it's recommended that people with CF don't meet -- it's suggested that we aren't indoors together, and if we're outside that we stay at least six feet apart. This can make a disease that's already isolating even more so. Thankfully, the internet especially social media, allows us to interact and build relationships, but it will never replace a real-life interaction. (You can read more about these policies on the CFF website.) I also always try to stress that while living with a chronic illness presents its challenges, we're all still people with friends and family and coworkers, and we have dreams and goals just like everyone else. Sometimes we might need more understanding, help, and flexibility than others, but we can still lead very normal and productive lives full of hope and joy <3