Precious, Not Fragile - a Column by Heather Novak

The week after the International Hypoparathyroidism Conference is always bittersweet. I’m so thankful I got to spend several days reconnecting with friends, sharing updates on my socials, hearing from hypoparathyroidism researchers and experts, and learning where clinical trials and therapies are in the pipeline. It’s also exhausting and…

When I was diagnosed with hypoparathyroidism at age 18, knowing where to go to find information or how to connect with other patients was a big problem. My general practitioners often didn’t have the expertise in my disease or time to help, and usually explained my symptoms away as…

It’s easy to forget that not every medical practitioner understands how hypoparathyroidism affects my life. My rare disease is just a footnote at my biannual or annual appointments; unless it’s actively causing a concerning symptom, I sometimes don’t even mention it. My eye doctor knows hypoparathyroidism, also known as…

I often wonder how many hours a year I spend in waiting rooms. I’ve been avoiding doing the math, but part of me wants to know. Because of my hypoparathyroidism and multiple comorbidities, I go to two to five medical appointments a week. An average of 3.5 appointments a…

Whenever I get together with my chronic illness friends — especially fellow hypoparathyroidism warriors — we always end up sharing horror stories about the times we needed treatment and couldn’t get it. Some of my favorite advice about advocating for my health comes from the Hypoparathyroidism Association’s 2023…

Since my diagnosis with hypoparathyroidism, also known as hypopara, it’s been easy to blame a lot of things on my disease. That pain in my arm? Probably a muscle spasm. That headache? Might have something to do with my calcium level. Fatigue? Well, that’s just something I fight every…

On a recent episode of the “New Heights” podcast, singer Taylor Swift said, “Think of your energy … as if it’s like a luxury item.” I repeat this phrase every day. Over the past three weeks, I’ve been on a typing hiatus, trying to heal muscle and…

Recently, I was asked how I maintain a writing career with a chronic illness. My answer was that I ignore a lot of writing advice. Writing every day, maintaining a strict routine, and putting writing first are the most common tips thrown around. But for a chronically ill person, that…

I recently shared that I wrote a book for my late grandma while she was in hospice. She was able to read it before she passed, and she cheered me on when I took advantage of a publishing opportunity. I’m thrilled to announce that the opportunity worked out, and I…

There’s a quote by Chicago Tribune columnist Mary Schmich that was later popularized by one of my favorite film directors, Baz Luhrmann, and that repeats in my head during shocking moments: “The real troubles in your life are apt to be things that never crossed your worried…