Hypoparathyroidism feels like a heavy weight, but love helps

It’s Valentine’s Day, and as a romance writer, I expected to write a very different column for this week. As I type this, Mr. Heather is helping me prepare for a trip to tell a family member I love them for the last time. This is love in so many forms.

Love, however, cannot change the needs of my rare disease.

I’m currently in a face-off with my suitcase, which will soon be packed full of medication bottles, a travel muscle massager, three kinds of calcium supplements, a pile of masks — we still mask everywhere — and a few pairs of pajamas. Despite being able to get ready today, I can’t fly across the country for two more days, until after my doctor appointments. It’s never easy to get a call about saying goodbye to a loved one, but it’s worse when I have to hurry up and wait.

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February 7, 2025 by Heather Novak

Before my hypoparathyroidism diagnosis, I felt it in my bones

Hypoparathyroidism affects my bones and muscles. Muscle tightness and spasms are two of my most prevalent symptoms. I have a minimum of two doctor appointments a week: physical therapy and a chiropractor.

While both appointments are helpful on their own, the combination has struck a balance of helping me continue to be mobile and able to work. My jaw, which has a worn joint, needs weekly adjustment to keep from going out of alignment and causing vertigo. My hips, which have frequent muscle spasms, need to be loosened and realigned. My left arm is in near constant spasm and needs release. And my neck needs manipulation to prevent chronic migraines.

If I go longer than a week without either of these appointments, the careful balance that keeps me ambulatory starts to slip. It’s already been six days. What’s just as hard is the looming deadline of how long I can stay away from my medical team. It’s not easy to find people who are comfortable with and adept at treating my body, which means that in one week — no matter what’s going on — I’ll be back on a plane and hurrying home.

Responding, for now

It’s hard not to be angry at my body, at my doctors, and at the world when I’m feeling trapped because of this delicate balance. As often as the chronic illness community throws out such sayings as “I don’t let my chronic illness control me!” and “I’m not my illness! It’s just a part of me!,” they don’t feel true to me now. I’m caught in an escape room with a countdown looming, and when the door finally opens, I’ll walk into yet another escape room with another timer. I’m raging an invisible war as my panic disorder — which arrived soon after my hypopara diagnosis — shows up with all the comfort of a stomach bug.

I remind myself — as I’m typing with one hand, the other pressing into my most painful spots, bent in half because I can’t sit up straight — that all of this struggle is for love.

For now, I will fill this suitcase. For now, I will write this column to share what it’s like when the weight of my rare disease chains grow heavier. For now, I will be grateful that I can even make the trip, something that would’ve been impossible a few years ago before my current treatment. For now, I will remember the last words of that heartbreaking call.

“Ja cię kocham,” she said, which means “I love you” in Polish. I said it back.

Sometimes life gets deferred because of chronic illness. Sometimes the worst part of my rare disease isn’t the symptoms, but the limitations. Sometimes the hardest part is the acceptance that I must wait, that I must give up time, precious time, until I can escape from the weight of hypoparathyroidism for a few days. And hopefully, in return, I never forget that love makes the price worth it.

Note: Hypoparathyroidism News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hypoparathyroidism News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hypoparathyroidism.