Being your own health advocate
Louisville author Shannon Stocker is passionate about advocating for oneself. In her debut young adult novel, Stronger at the Seams, Twyla is a young teen facing the changes that come with transitioning from middle school to high school. Losing her mother a few years prior only intensifies those changes as she navigates them with her detached, still-grieving father.
When Twyla starts to experience mysterious symptoms that affect her athleticism, self-esteem and relationships, she needs answers. Doctors continually breeze through her appointments with the same standard diagnoses and fixes. Deep down, Twyla knows they are not hearing her, not discovering the real issue and definitely not making her feel better. Her father won’t discuss her mother’s death to reveal any genetic factor, so she begins a journey on her own for the truth about her mother and, ultimately, about herself.
Through Twyla, Stocker emphasizes the need for advocacy when it comes to health care. She speaks from experience as the parent of one child with brain cancer and another with attention-deficit/hyperactivity disorder. Countless doctors over a two-year period had dismissed her daughter’s symptoms, even hinting at the need for a therapist. Stocker pushed onward, expressing that “everyone was missing something.” Indeed, they had been.
Stocker explains, “I wrote Stronger at the Seams largely from the fold-out couch by my daughter’s hospital bed during 21 rounds of chemotherapy. The process was therapeutic for me. Since the story is fictionalized, I could write what I needed—what she needed—while still honoring our truth.”
Had Stocker not advocated for her daughter, the diagnosis could have been missed. Likewise, her character Twyla advocated for herself until she found answers. Stocker urges readers to do the same: “It’s not easy to fight for a truth you don’t fully understand, and it’s even harder when people—older, supposedly wiser people—are telling you you’re wrong about yourself … But no one will ever fight for you the way you can. No one knows you the way you do. We may not always be in control of our stories. But that doesn’t mean we are powerless.”
Ironically, Stocker completed medical school, but her own disability prevented her completion of a residency. She believes everything happens for a reason, though, and those bumps in the road make people stronger at the seams.
Tips from UnitedStatesofHealthCare.com for self-advocacy:
• Build your knowledge—ask your provider for reliable resources.
• Give your provider honest, accurate information about symptoms, medications and habits.
• Do your part—take notes, adhere to treatment plans, notify your provider of difficulties.
Stronger at the Seams, (BlinkYABooks, $18.99), can be found at major booksellers. Connect at shannonstocker.com.
