IgG4ward! community discusses mental health challenges in chronic disease journey
In a recent conversation hosted by the IgG4-RD community, caregivers and patients came together to shed light on the often-overlooked connection between mental health and chronic illness. With emotional personal stories, participants highlighted the psychological toll of IgG4-related disease (IgG4-RD), underscoring the importance of support systems, self-care, and mental health awareness.
A Shared Journey of Diagnosis and Uncertainty
The discussion opened with 4 patients—Kimberly Skelly, Sabrina Riddle, Andrew Provencher, and Damon Brooks—recounting their experiences navigating life with IgG4-RD, a rare autoimmune disease. Many recounted a long and frustrating journey to diagnosis, marked by misdiagnoses, invasive tests, and in some cases, a terrifying brush with mortality.
“I was told it looked like metastatic ovarian cancer,” Kim shared, recounting the emotional strain of waiting for a definitive diagnosis. “Not knowing if I’d live 3 months or 6 months was a heavy burden.” Andrew echoed these sentiments, reflecting on the overwhelming fear after his lung scans initially suggested cancer: “It felt like I was always waiting for the other shoe to drop.”
Mental Health: A Silent Struggle
Katharine M. Provencher, MSW, the event host and director of patient advocacy, emphasized the importance of distinguishing between mental health struggles and clinical mental illness. Mental health struggles, she explained, can affect anyone, especially those dealing with the chronic unpredictability of diseases like IgG4-RD.
Participants discussed how this uncertainty impacted their mental health, with Sabrina acknowledging, “The trauma of surgeries, ineffective treatments, and misdiagnoses weighed heavily on me.” Damon described how his faith was tested, stating, “I had to remind myself that it’s okay to call on others when I couldn’t encourage myself.”
Seeking Support and Building Resilience
Many attendees emphasized the importance of self-awareness and accessing professional support. Kim credited her wife for noticing the depth of her emotional struggles: “I knew I wasn’t okay, but it was my wife who saw how deep I had spiraled.” Similarly, Damon and Sabrina reflected on the stigma within their African American communities around mental health, but both stressed the value of seeking professional counseling alongside their faith.
“Faith doesn’t mean we shouldn’t seek help,” Sabrina noted. “It’s about caring for the whole self—mind, body, and soul.”
Coping Strategies: Finding Joy in the Small Things
Participants also shared practical coping mechanisms that help them manage their mental health. Kim found comfort in puzzles, counseling, and a unique strategy called “box breathing” to regulate anxiety. Others, like Andrew, emphasized community involvement: “I found strength in conversations, even casual ones, with other parents at the playground.”
Meanwhile, Sabrina discussed the healing power of music, echoing Elton John’s sentiment that music can “take people out of themselves.” Damon emphasized gratitude, saying that appreciating small moments—like a sunset—brought peace during tough times.
Breaking Barriers to Mental Health
The group candidly addressed the barriers to mental health care, including societal stigma and gender expectations. Andrew highlighted the challenges men face. “Growing up, I was taught to be strong, to push through. But with mental health, there’s no time for that stigma.” Kim added, “The hardest barrier I had to overcome was myself—learning that it’s okay to ask for help.”
A Message of Hope and Connection
As the conversation concluded, participants shared words of encouragement for others struggling with mental health challenges. “You are not alone,” Sabrina said. “Reach out—whether to a friend, a counselor, or this community. You don’t have to walk this journey alone.”
Andrew encouraged small steps toward healing: “If you’re struggling, just tell someone—even if it’s yourself in the mirror. The first step is to make it a topic.”
The event ended with a reminder from Catherine: “Living with IgG4-RD requires ongoing care, not just physically but mentally. Self-care isn’t always a luxury—it can be as simple as finding a moment to watch the sunrise.”
This conversation not only underscored the complexities of managing a chronic illness but also highlighted the power of community, resilience, and compassion. Through open discussions like these, the IgG4-RD community aims to foster hope and break down barriers surrounding mental health.
