Sharing our rare disease stories is vital for building community

I was watching the “Morning Joe” talk show this morning — well, not really watching; it was more like background noise while I worked on a few things — when something caught my eye (or, more accurately, my ear). The hosts were introducing a guest who’d just written a new book, saying she was “sharing a deeply personal side of her own life, calling it ‘the most vulnerable thing she’s ever done.’” I couldn’t agree more — and that’s why sharing is so important.

That may sound like I’m being grandiose; after all, “sharing a deeply personal side of [my] own life” is what I do here twice a month, and it’s what my upcoming book is all about. But I’m not saying that as a sarcoidosis writer. I’m saying it as a person with a rare disease that most people have never heard of.

Before I was diagnosed with sarcoidosis, I spent years in a cycle of misdiagnoses and failed treatments. After being dismissed for years because I “didn’t look sick,” I was grateful for that first almost-diagnosis: “some kind of arthritis, probably autoimmune.” I searched online and found an organization focused specifically on that. Finally, a group who understood.

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Next, doctors decided I had psoriatic arthritis because my primary symptoms were joint pain and skin rashes (both common in sarcoidosis). I searched again and found an online psoriatic arthritis support group. I joined it, introduced myself, and was welcomed by hundreds of people with that disease.

A few months later, I attended an arthritis event, eager to get involved. The event chair shared her experience with fibromyalgia (another condition I have, which falls under the arthritis umbrella), including the years of not being believed and the debilitating pain and fatigue.

My eyes welled up, and tears came pouring out. It was the first time I’d heard someone tell what felt like my story. Every point she made, I’d experienced. Every emotion, I’d felt. She was everything I needed back then and still is. A decade later, she’s still a sister to me (or, as she says, a “lady-bro”).

Each time my diagnosis changed, I felt lost and confused. If I didn’t have psoriatic arthritis, did I have to leave that support group? If I didn’t have arthritis, would I lose my lady-bro? What I discovered, thank goodness, was that I didn’t have to lose anyone. Even with different diagnoses, so many of our experiences were relatable. They were as comforted by my words as I was by theirs, and they didn’t want to lose me, either.

A kaleidoscope of rare

With a rare disease like sarcoidosis, the fear and isolation can be even more overwhelming. In the U.S., a disease is considered rare if it affects fewer than 200,000 people. Sarcoidosis is at the high end (with a higher incidence in New York after 9/11), so I’ve been able to connect with members of the sarcoidosis community in person and online. But in the broader rare community, I’ve met people whose disease has been diagnosed in only hundreds of people … or dozens … or even three or four. I can only imagine how much scarier it is for them.

But as the National Organization for Rare Disorders (NORD) states, “Alone we are rare. Together we are strong.” That strength comes from allowing ourselves to be as vulnerable as this morning’s author. When we share the “deeply personal” aspects of our symptoms, fears, and interactions with people who don’t understand, we leave ourselves exposed, open to be crushed or uplifted. When someone in the rare disease community responds, “Me, too,” it’s like coming in from a blizzard and being wrapped in warm blankets. We are seen. We are validated. We are home.

Sharing our stories and hearing (or reading) stories from others in our community are vital. It’s not just that we need the warm welcome ourselves; it’s that we have the ability to offer it to someone who is shivering all alone.

I’ve spent the past year creating “Kaleidoscope Rare Disease Stories“ for just that reason. “Kaleidoscope” (the name for a group of butterflies) brings together a cocoon of blankets: stories from people around the world of all ages and with different rare diseases (including several with sarcoidosis) to comfort anyone whose life is affected by a rare condition.

I set out to create something for the rare disease community, but this book has done more for me than I imagined. It feels like the culmination of all my life’s work — teaching, training, advocating, writing — and I’ve found my purpose. It’s not just to share my own vulnerability, but to encourage and empower others to share theirs. In honor of Rare Disease Day, “Kaleidoscope” will be released Feb. 29, with proceeds donated to NORD.

Note: Sarcoidosis 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 other 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 Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis.