Background/Purpose: Like many lupus patients, my journey has been long, complex, and difficult. I began experiencing symptoms in 2019. Over the next five years, I worked with 17 doctors over nine different specialties as I tried to find a reason—and a solution—for my increasingly debilitating symptoms. Eventually, I was diagnosed with undifferentiated connective tissue disease, and in 2023, finally diagnosed with lupus.

My medical providers are skilled, empathetic, and supportive, and I benefit immensely from their continued care. But as my health declined and I grew more frustrated with living with a chronic illness, I began to crave connection with a peer. Someone who understood my experience, no explanation necessary.

Intervention: In August of 2023, I joined a virtual support group for individuals with chronic illnesses led by a therapist. Over twelve sessions, we covered a wide range of topics relating to chronic illness. From our first session, I felt validated and understood in a way I had not previously experienced. Despite different diagnoses and symptoms, all of the participants shared the burden of a chronic illness, and we therefore had many similarities in our health journeys.

The heartbreaking dilemma of both wanting a diagnosis and fearing one. The exhaustion from sinking time, money, and energy into medical appointments. The terrifying uncertainty of what our futures will hold. The profound impact of our illnesses on mental health. The frustration of our values and our priorities always being limited by chronic illness. The loss of identity. 

With each conversation, we shared these experiences and so many more. We didn’t skirt around heavy topics, like suicidal ideation, instead embracing the vulnerability and courage to discuss and normalize them. Through these twelve weeks, a group of strangers became some of my closest friends.

Maintenance: The benefits of my support group have been immeasurable. My support group provided a sense of community for me, and therefore valuable social support for my struggle with lupus. Despite the difficult themes we discussed, I felt lighter after each meeting. My peers provided much-needed validation and support, and I hope I returned it.

Quality of Life: I’m still in touch with my friends from my support group. We have an ongoing group text, that buzzes at least once a day with a message about the casual ableism we’ve encountered or a symptom we’re experiencing. We’ve navigated work problems, family issues, and barriers to accessibility together. Memes about chronic illness also often feature in our conversations, providing welcome reprieves from reality.

I have never met any of these people in person, despite living with twenty miles of them. But they have profoundly impacted my life, and my experience with lupus. Our chronic illnesses haven’t been resolved by our support group, but our challenges are much more bearable with each other.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/support-groups-and-chronic-illness-finding-social-support-among-peers/