Precious, Not Fragile - a Column by Heather Novak

Note: This column describes the author’s own experiences with Natpara (recombinant human parathyroid hormone) and Yorvipath (palopegteriparatide). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. For the first time in three years, I’m about to finish a full-length novel. As I…

Having a rare disease means I have a complicated relationship with my body. I cycle through anger — wishing away my medical problems or my staggering medical bills — and the empathy that comes with knowing that teenage me navigated my medical journey the best I could. After turning 40…

I’ve been going to physical therapy every week since 2022 to help with my hypoparathyroidism-related muscle spasms. At my appointment this week, my longtime therapist announced that he’s leaving to take another job where I can’t follow. I’m so thrilled that he’s found a position that’s a better fit,…

Hypoparathyroidism makes me rethink accessibility. Sometimes accessibility means having a livestream option for an event when travel is impossible. Sometimes it means having a temperature-controlled climate, because sweating can lower my calcium level. And sometimes it means having a seat at a standing-room-only show. With my hypopara, standing for…

Having two writing jobs is my literal dream. If only 12-year-old Heather — who used to write stories in the margins of her textbooks — could see me now! Writing jobs, by nature, do come with the dreaded D-word: deadline. I thrive off of external deadlines, but my emotional joy…

I’m lucky enough to have a group of friends who read my column every week and send me their favorite lines. In my column about using a routine to get through bad days, I wrote that taking my hypoparathyroidism medication on time and as prescribed is an act…

After a long stretch of cold and gray, the sun popped out this week, bringing with it warmer temperatures. I was thrilled for a reprieve from the body-aching winter, ready to get outside. Thankfully, my motorized rollator/transport chair from Rollz had just arrived, and it was the perfect chance to…

I’ve been publishing books and blogging about my disease for over a decade, yet nothing has taught me more about being vulnerable than writing this column. I’m of the age to remember LiveJournal and have seen my share of nasty Reddit comment sections. Being public about anything personal — especially…

With a chronic illness like hypoparathyroidism, it’s easy to lose myself on bad days. When intense pain and anxiety steal my sleep, it’ll launch a chain reaction. If I don’t sleep well, I’ll become more anxious, which causes me to hyperventilate. That, in turn, lowers my blood calcium…

Happy Rare Disease Day! I’m curled up under my blankets, willing my body to recuperate after traveling for a family emergency, and reflecting on how much heavier this day feels to me this year. Since its creation in 2008, Rare Disease Day, on the last day of February, has…