Precious, Not Fragile
— Heather Novak

On July 2, my surgical hypoparathyroidism turned 22 years old. It’s wild to think that I’ve had this disease for over half of my life, and that I’ve been sick longer than I’ve been healthy. That one day in 2003 changed everything. As I prepared to write this column,…

As the summer solstice passes by and blazing temperatures roll in, the image of lounging by a pool or lake with a cold alcoholic beverage in hand crosses my mind frequently. In a life without hypoparathyroidism, I suspect that’s exactly what I’d be doing today, as we reach 90…

Having a chronic illness feels a little like being a hostage negotiator. It’s my functionality and I trapped behind an unpredictable chronic illness that’s got a chip on its shoulder and is out for blood. The alarm has been tripped and the medics are outside, but it doesn’t change the…

When I was a teenager, adults used to tell me time sped up every year. I scoffed in that way kids do when they don’t believe an adult, but I swear these days that time is nonsensical. This week marks my two-year anniversary on Yorvipath (palopegteriparatide), the first and only…

I was having an incredible week! I’d pushed my body to the limit to meet my book deadline and had finished on time. I took part in a rare career opportunity and went to sleep on Tuesday night celebrating. Wednesday morning, I had to make a call about the…

When I walk into the small, LGBTQ-owned salon that has seen my best and worst hypoparathyroidism days, I’m always relieved that I can just be me. Not only is it a place of safety and comfort for me as a queer woman, but also as a person with a…

I have a mortal enemy. We circle each other often. I’m consistently trying to de-escalate and avoid, while they’re popping up at the most surprising moments, rendering me incapacitated. I spend hundreds of dollars a month trying to protect myself, hoping I continue to be successful in my lifelong fight.

Books have always been a constant in my life. I remember collecting “Goosebumps” by R.L. Stine and “The Vampire Diaries” by L.J. Smith, and I still have a few first editions on my bookshelf. From romance and Westerns to cozy mysteries and fan fiction on Archive of Our Own…

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…