“We Need Each Other” – The Nourishing Power of Friendship in the Vasculitis Community

Suzanne McLaughlin sat, mostly quiet, as others in that week’s Vasculitis Foundation support group took turns sharing their updates and stories. She kept her unassuming presence until the group neared its close and Dana, the facilitator, said, “Suzanne, I love how you listen intently during groups and take notes. And then you drop your wisdom at the end. What’s your wisdom this week?”

Gently, like a poet, Suzanne began to speak–not about her symptoms or her medications, but about creativity. Everyone in the group got quiet, as if deeply attentive, leaning in. Suzanne had captured the room. She seemed to be hinting at wonder and awe, at the power of being attuned to life, which, perhaps, is the artist’s job.

That’s when she said it: in a virtual room full of people struggling with rare and chronic illness, she insisted: “It’s a privilege to be alive.” Invoking the beloved poet Mary Oliver, she continued, “So, tell me, what is it you plan to do with your one wild and precious life?”

Suzanne has had a lifelong interest in creativity, art, travel, and world history. “I’m curious,” she said. She paused to laugh, adding, “I made up a word. I call it ‘healthy psych.’” She said it means “how to take advantage of your opportunity to live, without burdening your life with problems you may inadvertently impose on yourself. It means how to maximize your potential.”

She lived her life with curiosity, as a mother and medical technologist, until Halloween of 2021. She was 73 when she received the unexpected diagnosis: giant cell arteritis (GCA) vasculitis.

The first time Suzanne ever joined a support group was years prior to her vasculitis diagnosis. “When I had my kids,” she said, “I joined La Leche. It was about learning how to be a mom, about caring for kids in a very nurturing way…It matched my interests. I got to meet friends.” She felt connected. She had heard of mothers feeling isolated or depressed in those early days with a newborn, but Suzanne said she never felt that way. “I had this support group.”

So when she was diagnosed with vasculitis in the middle of a pandemic, she turned to Google. It was a Tuesday when she stumbled upon the Vasculitis Foundation (VF) website. The website listed a virtual support group meeting for the following day. Suzanne said, “I just signed up without knowing what it was.”

On that first day she remembers the facilitator’s kind and reassuring voice, and how everyone was asked to introduce themselves. “It broke the ice,” she said.

Suzanne has been attending the VF’s support groups ever since. “I rely on the support group,” she said. “It’s like fresh air and sunshine. We need it. We’re social creatures.” She also believes that hearing from others with a rare condition like her own is helpful and makes her feel connected. “You don’t encounter these people in your neighborhood, so it’s energizing to be in the group. I come away feeling like it was time well spent.”

She says some weeks she comes with a question and someone in the group might help her find an answer. Other weeks, the opposite happens where she might have information she can share that supports someone else. “It’s very mutual; it’s a two-way opportunity to share.”

At the heart of the groups, Suzanne says, is friendship. One week during the group, Suzanne mentioned she loves art. That’s when another group member shared that she is an artist. They exchanged emails. To this day, they continue to write to each other about art.

Then there’s her friend Cheryl, whom she met in the group and describes as “very serious about art but in a fun-loving way.” Cheryl invited Suzanne to be part of another Zoom group, the East-West art group. There, friends from across the country come together to make art and share.

Suzanne believes it’s important not to brush your feelings under the rug. Vasculitis can challenge your physical body, your mind, and your spirit. But, for her, art is not separate from this journey. Her approach to living well with vasculitis is linked to her commitment to noticing life’s beauty; to being receptive to what she calls (à la Elizabeth Gilbert) “the Muse.” 

“I am a realist,” she said. “When we come to these support groups, if we demand that everything’s going to be fine, that’s a fantasy. But we want to preserve what we can.” She insists she doesn’t want to try to prolong her life beyond what is meant to be her lifespan, but she wants to continue to see being alive as a privilege. 

“As Valerie said in the support group the other day,” Suzanne said, mentioning another group member, “when you’re living with vasculitis, if you don’t take the drugs, you’re not going to live.” But this life–all life, as Mary Oliver said, is still precious. What will you do with it? How can you make it soul-filling? 

As my conversation with Suzanne neared its end, she, once again, had wisdom to drop. “This,” she said, “everything we’re talking about”–about support groups and art groups and connection– “is a story about friendship. We need it in our culture. When we’re going through a hard time, we need each other.” 

She seemed to be hinting, once again, at Mary Oliver, who wrote: “I had a few friends who kept me…loyal to my own best and wildest inclinations…They were constant, and powerful, and amazing…and for me it changed the world.” 

Friendship brings us home to ourselves, makes us feel seen, and loved, and heard. And that is world-changing.

Author: Ashley Asti