Emily has been having mysterious seizures since she was 8 or 9 years old. Her preliminary tests all came back normal, and none of the adults responsible for her care pushed any further for a diagnosis. Over time the seizures blended into her daily life, becoming a normal occurrence in Emily’s mind. They even got better for a few years, to the point that Emily thought she had grown out of her mysterious ailment. But suddenly in her early 20s she was afflicted with massive seizures unlike any she had experienced before, sending her to the emergency room. This was the beginning of a health flare-up that would change the shape of Emily’s life, as well as spark the search to uncover the mysteries of her seizures.
In this episode of the Major Pain podcast, Emily discusses searching for a diagnosis while simultaneously navigating life as a disabled college student. Her condition has evolved to include intense fatigue, migraines, light sensitivity, food sensitivity, vertigo, chronic pain, and difficulty standing or walking. These changes have prompted her to reevaluate how she moves through the world, taking a year off from grad school to explore accommodations such as her recent need of a wheelchair. It has taken a great deal of reframing to contextualize her evolving health situation, since adults had insisted throughout her childhood that her health issues weren’t a big deal. Reaching adulthood means that Emily can finally advocate in pursuit of her own health, and diagnostic pathways are finally starting to appear. Emily is sharing her story in the hopes that others with similar journeys can feel less alone, having personally lived through the emotional toll of an isolating health situation.
Emily is running a fundraiser to help her get a service dog! Find more information here: https://indogswetrust.org/portals/emilydog/
RESEARCH OPPORTUNITIES: https://rarepatientvoice.com/MajorPainPodcast/