Sharing our rare disease stories is vital for building community

Connecting with others allows us to find strength in vulnerability

🦋 Kerry Wong avatar

by 🦋 Kerry Wong |

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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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Finding Comfort in the Rare Disease Community

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.

Comments

Kathleen Stover avatar

Kathleen Stover

H I
I found out, &went to my doctor after my blood test. I told him that I had sarcoidosis he said was WRONG. I Was nurse 25 years. We did another blood test it showed SARCOIDOSIS. he didn't say much ! That was ten year ago. ...

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🦋 Kerry Wong avatar

🦋 Kerry Wong

Oh, Kathleen - that story is sadly -- and frustratingly -- common. I'm glad you eventually got the validation, and hope that it came with treatment and relief.
~🦋

Reply
Gloria avatar

Gloria

Fifteen year ago I developed a lump on the bridge of my nose. At first I was referred to an ENT specialist. He tried desperately to reduce the lump with a.dosage of steroids. When I completed the treatment, the lump doubled in size after a couple of weeks. The doctor contacted an ENT surgeon who recommended I have an CT scan and that I be referred to his office with the results. The Ent surgeon then referred me to pathologist who aspirated cells from the lump on my nose. After she reviewed the contents she advised she had some good and bad news. She said the good news is this is not cancer, the bad news is she doesn't know what it is. With that I was referred back to the ENT surgeon. He decided that surgery was the next option. During the surgery he discovered a cluster of cells and diagnosed me with sarcoidosis. I am also a lupus patient that suffers with fibromyalgia and asthma. Sadly I never know what disease is causing my pain

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🦋 Kerry Wong avatar

🦋 Kerry Wong

I'm sorry you've had to go through so much, Gloria. It is a daunting challenge when multiple conditions cause similar symptoms. It's hard to know which is causing, so it can be even harder to address. I hope you've been able to find some relief. And I am right here with you.
~🦋

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Carol avatar

Carol

I too have sarcoidosis and a lump under the skin of the bridge of my nose! I will have a biopsy in a week from now. I suspect that it is sarcoidosis because my aunt developed it her face in the 1960's and took steroid injections. She is now in her 90's and doing well for her age. My sister also has the disease internally. Another one of my sisters had lupus, another autoimmune disease. I believe that there is a hereditary component. My diagnosis of sarcoidosis in my lungs was made in 1975. I am now in my 70's. Sometimes it flairs up and causes mild neurological symptoms for a few seconds. I've seen neurologists, pulmonary doctors and ophthalmologists. Since 1988, I no longer need to take oral steroids. I hope that your treatments enable you to find relief and your sarcoidosis goes into remission.

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🦋 Kerry Wong avatar

🦋 Kerry Wong

First off, best of luck with your upcoming biopsy, Carol!
It is such a mixed blessing to have so many family members with it. Obviously, we wouldn't wish this disease on anyone, but when so many in your immediate circle are familiar with it, you know from the start that you are not alone.
~🦋

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