Float Like a Buttahfly
— Kerry Wong

A graphic depicting a butterfly winding through the sky.

Kerry Wong lives in Westchester, NY, with her husband, the boy next door she had a crush on since she was a child. She was diagnosed with sarcoidosis in 2015, after an 8-year search for answers. Though disabled, Kerry remains active as a writer and advocate for the rare disease and chronic illness communities. Her goal is to help others living with these conditions feel seen, validated, and empowered. She recently published Kaleidoscope: Rare Disease Stories, a diverse collection of true stories told by nearly 50 rare disease warriors, and plans to expand this into a series. Through her column, Kerry shares how chronic illness has led to transformation, and invites readers to float with her, “like a Buttahfly.”

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Columns

When chronic illness life feels overwhelming, seek joy and support

When I was diagnosed with sarcoidosis, I immersed myself in the community and made April — which is Sarcoidosis Awareness Month — my busiest time of the year. I dressed, accessorized, and dyed my hair purple, the official color of sarcoidosis awareness. I created walkathons and other awareness events,…

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With chronic illnesses like sarcoidosis, community is key

Sitting at the infusion center for my intravenous immunoglobulin (IVIG) treatment, I opened up a Google Docs tab on my laptop. I’d just gotten an idea for a column, and wanted to jot down some notes before I forgot it. I had typed exactly eight words when another patient stopped…

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It’s OK to get angry when our best-laid plans go awry

I started writing this column a few weeks ago when I was angry. I was irate, it was festering, and I had to get it out. I started jotting down my thoughts, with the clickety-clack of my nails on the keyboard beating harder and faster than usual. If I were…

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Diet and exercise choices aren’t so obvious with sarcoidosis

A few days ago, I saw a post on Bluesky that made me chuckle … and then it made me think. Originally posted by @ONeillJones on another platform and reshared by @chronicillness.bsky.social (known as Chronic Illness Humor), it posed a simple question: “Y’all think there are vampires that eat…

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Boiling frog syndrome: Symptoms of sarcoidosis turn up the heat

“When did the pain start?” That’s a fairly straightforward question with an uncomplicated answer for most people: “I fell last Thursday and hurt my knee.” “I was helping a friend move over the weekend and tweaked my back.” “I ate something funky last night, and my stomach’s been hurting ever…

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Finding joy while living with sarcoidosis is imperative

Last week, my husband and I took a road trip to see the Yankees play the Reds in Cincinnati, checking another stadium off our bucket list. We went out for brunch before the game and had a nice chat with our waitress, mostly admiring each other’s tattoos. The food, our…

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Symptoms of sarcoidosis keep us out of ‘the room where it happens’

This month, I watched the 78th annual Tony Awards, looking forward to performances from the year’s top shows. I’m always hoping to see my new favorites recognized and get ideas for what to attend next. This year’s awards show was extra special, featuring a reunion and medley from the original…

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What writer’s block can teach us about symptom management

Writer’s block: when you want (or have) to write something but the words just won’t come to you. It could be for a school paper, a business report, a personal story, a speech, or a simple social media post, but it happens to all of us. We think. We…

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In sickness and in health: Living and loving with sarcoidosis

Dearly beloved, Earlier this month, my husband and I attended our niece’s wedding. Later this month, we’ll renew our vows to celebrate our 25th wedding anniversary. It’s no surprise that in between the two events, I’ve been reflecting on love, marriage, and what we mean when we say “I do.”…

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Living with sarcoidosis and its internal conflicts

On any given day, at any given moment, we can see signs of conflict all around us. Wars, protests, he said/she said disputes. Personally, I vacillate between watching the news every waking moment (the “Breaking News” chyron has been permanently burned into the bottom of my television screen) and avoiding…

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Spreadsheets and sarcoidosis: Strategies to survive and thrive

Last week, I attended a friend’s fundraiser with my husband, our moms, and my sister. Throughout the evening, we talked about the latest shows we’d been watching, noting which series were absolutely must-see. My sister and I continued the conversation through the weekend, texting each other so many recommendations that…

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Honoring this year’s Rare Disease Day any way we can

Note: This column discusses an upcoming FDA-NIH Rare Disease Day event, which planned to bring together members of the rare disease community with healthcare providers, researchers, lawmakers, and more at the NIH main campus in Bethesda, Maryland. That event has since been postponed. Stay tuned for further announcements. There’s a…

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Thoughts on a doctor’s letter to chronically ill patients

I recently came across a blog post on MedPage Today titled “A Letter to Patients with Chronic Illness.” Although it was written nearly 15 years ago, it’s as relevant today as it was then, revealing oft-obscured insight into the frame of mind of our doctors. Its author, “Dr. Rob,” shares…


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