Writing about hypopara has taught me what it means to be vulnerable

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 hypoparathyroidism, my rare disease — is kind of like standing naked in an ice storm in front of a mob determined to find fault — a very unique but potentially painful scenario.

I thought this column would be exactly inside my comfort zone. After all, my skin is thick from a parade of book editors and online trolls. Many of my public social media posts about hypopara garner the typical well-meaning but exhausting unsolicited advice in the comments: “Why are you wearing a mask?” “Have you tried yoga?” “Why don’t you add more dairy?” “Won’t you please click this link to a miracle cure that’s definitely not a scam?”

When I agreed to join Hypoparathyroidism News and share my personal journey in a deeper way, I didn’t expect it to feel like the most vulnerable thing I’ve done. How could 800 words feel that much different from 80,000? But these columns require me to slice open the curated image I present to the world and reach inside to find the parts hidden in the shadows, sticky and misshapen. It forces me not only to bring these tender spots into the light, but also to accept that they are, in fact, a part of me.

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I’ll make a promotional book graphic that reads “mobility aids are sexy,” but then never share the reality of using them. My characters who use mobility aids, and my own pain, societal stigma, and the stress of navigating inaccessible places can no longer be two different things if I’m writing a column about my myriad devices. These columns challenge me to accept myself in ways I’ve been able to keep at face value in the past.

Ever since my first column dropped last month, the uptick in people who have reached out via my website, social media messages, and comments has risen exponentially. The connections I’ve made are a salve to my vulnerability wounds and remind me that what I share matters. I save every message for those days when, with teary eyes and shaking hands, I’m forced to examine and define and carry with me all my uncomfortable parts.

When my healthy peers neglect my accessibility needs and I’m forced to cancel plans, I remember that I helped someone to not feel alone anymore. When executive orders directly impact my rare disease research, I remember my medical team sharing stories with others about my advocacy work. When someone calls me “too dramatic” when I explain my health needs, I remember how it felt the first time I met someone else with hypopara. That is what keeps me doing the hard work.

Hypopara isn’t a pretty disease, leaving me exhausted from defending my rest time and coming to terms with not crossing off items on my bucket list. For me, it’s still wearing masks and wrestling with heavy doors while using mobility aids and explaining to friends why I have to work around my body. It’s giving up time with loved ones to rest and accepting that if I work on my book for two hours and then do physical therapy, I’ll run out of energy before dinner. It’s digesting that I can’t physically show up for people in the way I emotionally wish I could. It’s knowing that society sees me as a burden and then challenging that perception to their face.

But hypopara also distills life down to the most important things: community, connection, and love. Vulnerability is an art form, one I’m still learning how to navigate with my hypopara lens, but a journey that’s absolutely 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.