Breaking Barriers: Empowering Women of Color Living with Autoimmune Disease Through a Pilot Support Group

The journey to diagnosis for autoimmune disease is challenging, with an average of 4 to 4.5 years overall. In seeking a medical diagnosis and treatment, racial and gender stereotypes can lead to inadequate treatment and may contribute to diagnostic delays, worse outcomes and health disparities.

To better understand their unique experiences, the Autoimmune Association held roundtable discussions with underserved communities including women of color, males, males of color, transgender and non-binary individuals, and those who live in rural areas to help identify disparities in the diagnostic journey.

During these listening sessions, one thing we consistently heard is the need for better mental health resources and support systems. Their feedback includes:

• Connecting with others: Many individuals who struggle with chronic, challenging illnesses often express their ongoing quest for support and a community that truly understands the everyday hurdles of living with an autoimmune condition.
• Emotional struggles: Patients frequently open up about their battles with depression, isolation, and the feeling of being misunderstood. These emotional challenges can be tough, and they sometimes fear they’re alone in their struggles or that they’ll never return to their “normal” selves.
• Seeking support: Some of our patients have mentioned that they’ve sought additional support to navigate their journey. Even their closest friends and family might not fully grasp the daily challenges of living with an autoimmune disease.
• Shared decision-making: When patients become involved in their care decision, it strengthens their relationship with healthcare providers and enhances their overall satisfaction. It’s also a powerful motivator for patients to stick with their treatment plans.
• Self-Empowerment: Patients also shared that learning to advocate for themselves was pivotal in finding a treatment that worked for them. It’s a learning process, but it can be incredibly empowering.

In response to this valuable feedback, we’re excited to announce our Pilot Support Group program. This initiative is not just a game-changer; it’s going to serve as a model for future mental health projects. In July, we held the first virtual meeting for the Women of Color Support Group.

Our program is led by Lynda Conner, a seasoned expert in chronic disease self-management. She’s facilitated numerous workshops supporting patients with various chronic conditions, including caregivers. She teamed up with Shadé Mallory, one of our patient advocates and a Lupus patient, to create guided sessions that enable patients to share their concerns and lessons learned.

These sessions are all about giving patients a platform to discuss their challenges, share their successes, and contribute to the growth of future support groups. We have four 90-minute sessions lined up, focusing on topics like:

• Collaborating with your healthcare provider for decision-making
• Navigating your healthcare journey to a diagnosis
• Effectively communicating your needs to your healthcare provider
• Best practices for articulating your symptoms and concerns

We recognize that people often find it easier to open up to those who share similar backgrounds and experiences. Therefore, we’re focusing on specific patient groups. While they share common themes, each community faces unique challenges. For instance, urban patients might discuss switching providers if they’re not satisfied, while rural patients grapple with the challenge of finding a specialist hours away.

Our first pilot program began with 15 remarkable women who are eager to help shape this meaningful experience. They all have different autoimmune diseases, and they shared their symptoms, coping strategies, and crisis management techniques. It was an enlightening and heartwarming discussion.

“We can find strength and resilience by sharing our stories. I’m looking forward to learning from the experiences of the women in this group. Together, we will rise and thrive,” said Kaniah Gunter, who participated in the first session.

We also delved into the topic of “medical gaslighting,” a concern that resonates with many patients. Our participants shared strategies for effectively collaborating with their healthcare providers, such as asking direct questions, using positive body language, and maintaining a non-accusatory tone. One participant even shared a clever practice of preparing a list of questions before their doctor’s appointment, which helps them feel more in control.

The autoimmune journey can be daunting, with obstacles that at times feel insurmountable. However, each individual’s experience is unique, and the insights, recommendations, and strategies we’ve gathered from those who’ve walked this path can be a lifeline. We’re here to assist you in navigating this journey, one step at a time.

Stay tuned for more information as we develop support groups for rural patients, males, males of color, transgender individuals, Native Americans, and those who are new to the autoimmune journey.