The silent struggle of hiding my hypoparathyroidism

“I’m used to being judged. I know what that feels like.” — NASCAR driver Michael Waltrip

Hypoparathyroidism is an invisible illness. I appear healthy, but I struggle to exercise and become dizzy from low blood pressure. I easily forget things and sometimes can’t remember what I was saying mid-sentence. I also deal with brain fog.

All of these have a significant impact on my daily life, yet the emotional toll of living with an invisible illness is often overlooked. The constant need to appear “normal” despite feeling anything but is exhausting, and I’ve often felt isolated and alone.

I was diagnosed in 1998, but I wouldn’t let hypoparathyroidism define me. I lived, planned parties, took vacations, volunteered, raised my kids — and pretended I was healthy. I masked my illness and tried to fit in. I didn’t want to bring attention to my disease or raise anyone’s awareness about it. I was afraid I would be talked about or judged.

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Highs and lows

For my 40th birthday, I went skydiving. It was invigorating and was truly the first time I felt free from everything. It was a liberating moment, a reminder that despite its challenges, life can still be lived to the fullest. I felt as free as a butterfly, spreading my wings into the unknown. It felt like a promise of a life beyond my illness.

For her 40th birthday, Bari Vapnek went skydiving. (Courtesy of Bari Vapnek)

But just three years later, everything changed when I started PTH replacement therapy and then had a life-altering calcium crisis in 2016. My friends — whom I had never told about the seriousness of my hypoparathyroidism — didn’t realize that my hospitalization was a big deal.

Initially, I was disappointed that they didn’t come to see me, but I’ve come to realize that the fault was mine. I blame myself for hiding the true me. I wasn’t lying to them; I was lying to myself. I didn’t think they would want to be my friend if they knew I had hypoparathyroidism.

It’s now been 27 years since I was diagnosed. I have made great friendships and even allowed my disease to be part of my life with them.

This brave butterfly also learned that she needed to find people who understood. As I pack my bags for this week’s annual International Hypoparathyroidism Conference, I know I will be surrounded by people who understand. I will continue to fight my battles, but not in silence anymore. Speaking and writing for Hypoparathyroidism News has reminded me that the only way to heal is to speak up and help support each other, especially people like me who hide their disease like I did for more than two decades.

I will continue to spread my wings, speaking the truth about my hypoparathyroidism and the hope I found within. By raising awareness and educating others about invisible illnesses, we can all become more informed and better equipped to help those who need 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.