Joining the Exclusive Vasculitis Club

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by Allison Ross |

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There’s a customary phrase in the vasculitis community: “We’re sorry that you’re here, but we’re very glad you found us.”

Coined by Marilyn Sampson, the founder of what is now the Vasculitis Foundation, it’s a succinct reminder of the dual nature of living with chronic illness. After a diagnosis that changes our lives — a diagnosis we wish we didn’t have — at least we can surround ourselves with a community that understands.

Being an autoimmune patient feels like belonging to an elite club. Once you’re on the inside, you’re a member for life. We know multisyllabic biological terms as doctors do and casually drop them into sentences. We’re intimately familiar with hospitals, emergency rooms, and even ICUs, some of us having stayed in them for weeks or months at a time. We become adept at reading medical charts, predicting the weather, and cooking for anti-inflammatory diets.

We also have our own dialect. It’s comprehensible to healthy folks, but only those who live the rare disease lifestyle become fluent.

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I recently struck up a conversation with a friend of a friend. Not knowing if we had anything in common, we started with the basic questions: Where do you live? What do you do for a living? One answer led to another, and before I knew it, we were discussing our health conditions. She had experienced a cancer scare two years ago but fortunately recovered and is now doing well.

“Are you on azathioprine?” she asked. “I took that for 20 years before my cancer diagnosis.”

And just like that, I’d made a new friend. Just the mention of that particular therapy (which I do take) was a magic word, a key to a closer connection. Someone gets me! Someone understands!

I have friends who have been part of my life since before I got sick. These people continue to stay in touch now, and they are invaluable — but they aren’t part of the club. There are elements of my lifestyle they simply can’t grasp because they haven’t lived it themselves.

They can still listen, love, and offer invaluable support, and I don’t take that for granted. But the club of vasculitis patients goes one step further. They are therapists. They are resourceful information. They are mentors. They love with realism and with empathy.

It’s impossible to overstate the effect of a supportive community. Making connections with people who also inhabit our daily struggles confirms that we’re not alone. If the physical upheaval isn’t enough, there’s also a mental health upset that occurs at diagnosis — and it’s best not to tackle that in solitary.

The outlook on life resonates more deeply, too. Once we’ve been ill, we enter a new dimension. Joy and meaning are found in surprising places, and everything and everyone appears different, somehow. It’s like the transition from black and white to Technicolor in “The Wizard of Oz.”

The most rewarding part of this type of community is how much of my friend base is other patients. Organically, I grew relationships over the years with those I came into contact with due to vasculitis — whether at conferences and symposia, or through social media and live support groups.

Once we’ve been so low, we struggle extra hard to feel the upswing of life and happiness again. We feel an insistent urge to enjoy, discover, explore, and love. Carpe diem is a real phenomenon when we’ve been in a life-threatening situation.

The people in the Vasculitis Club truly get it. They offer a solid foundation even on our most difficult days. No one wants to trek this journey alone, nor should they need to. And they are there to celebrate our triumphs as well as our challenges.

Though we are rare, there are enough of us that we can band together and provide an emotional and psychological safety net. We bond over a shared connection, which lifts us and helps us persevere.


Note: ANCA Vasculitis 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 ANCA Vasculitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ANCA vasculitis.

Comments

Verna Mryglod avatar

Verna Mryglod

Dear Dr, Maia,
Thank you! I read your message of hope and inspiration and it is refreshing... it lightened my heart. Feeling isolated in this disease it's a blessing to have your professional, caring articles and education that answer so many unknowns. I appreciate your insight and knowledge that help to make my day a better and blessed one.

Verna Mryglod

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