Healing Together: The Role of BIPOC-Only Chronic Illness Spaces

“This started as nothing — just an idea,” Sarah Shaw recalls. “But we knew the community needed it.”

What began as an idea is now ChronicHue, a global online community supporting BIPOC individuals with rheumatic and chronic illnesses. Founded by Sarah, GHLF’s Associate Director of Diversity, Equity, and Inclusion, and JP Summers, Senior Patient Advocate and Community Outreach Manager, ChronicHue addresses the unique challenges BIPOC patients face in traditional support spaces.

This groundbreaking work will be featured at the 2024 American College of Rheumatology (ACR) Conference in Washington, DC, showcasing how ChronicHue has become a safe, supportive space where BIPOC individuals can connect, share resources, and feel understood in their healthcare journeys.

With their work being highlighted at ACR, Sarah and JP aim to raise awareness of the value of dedicated spaces for BIPOC patients and inspire similar initiatives in other communities worldwide.

A Space for BIPOC Patients

ChronicHue was born from a need for BIPOC-focused support for individuals living with chronic illness. Sarah and JP noticed that traditional support groups often lacked diversity, leaving many patients feeling isolated. “It’s a joint effort,” Sarah remarks. “JP and I come from similar places, working with support groups where there was not much diversity.” 

Recognizing the gap, Sarah and JP wanted to create a space where BIPOC patients could openly discuss their health concerns and find support from others with shared backgrounds. “We know that health care disparities exist. We know that certain chronic illnesses are hitting marginalized populations harder,” Sarah explains. “We created this space to help open up and normalize health discussions that might not be happening in our communities.” 

For JP, who has lived with rheumatoid arthritis since 2017 and fibromyalgia since 2015, the absence of support specifically for Hispanic, Latino, and Mexican American communities was deeply felt. “I needed a supportive community of individuals with similar experiences to help manage my condition,” JP says.  

She noticed a significant gap in resources that reflect the heritage and language needs of these communities, which was clear in the lack of Spanish-language and diverse BIPOC materials in physician waiting rooms. Yet, they are not alone; other patients experience the same challenges and are actively seeking connection and understanding. 

“There is isolation being in these support groups when there are no other people with your background,” adds Sarah. “ChronicHue was created to give people a space to connect.” 

Meeting Patients Where They’re At

As facilitators, Sarah and JP host monthly ChronicHue meetings to address issues at the intersection of chronic illness, culture, and being BIPOC. Meetings are offered twice a month to fit various schedules, and building this community took patience. “We didn’t have a community at first,” says Sarah. “It took time, trust, and targeted marketing.” 

Through ChronicHue, BIPOC individuals find validation, understanding, and support for their health journeys. Since its launch, ChronicHue has connected patients from four countries and hosted 20 meetings that address key issues like health care disparities, diagnosis delays, and a lack of diversity in health care. Monthly discussions offer a supportive space that empowers patients to stay proactive about their health. 

Both Sarah and JP acknowledge that when they meet with other patients at least monthly, they can share and learn from other patients in the group. The impact they feel is spreading within the ChronicHue community. One member shared that this community has given them confidence to ask the questions, advocate for themselves, and feel less alone in their chronic disease journey.  

“I feel empowered,” explains JP. “Having the support of others from my racial background- —  connecting with them over trying to seek treatment, their stories — I felt very confident in asking the right questions and knew what I needed to ask.” 

Amplifying BIPOC Voices in Health Care

We asked Sarah and JP why showcasing their work at a national conference like ACR matters. 

“It’s huge,” says Sarah. “ChronicHue is multifunctional. It’s a tool that patients can use to navigate their health journey.” 

Sarah highlights the importance of giving patients a voice on a national stage. The more people who know about ChronicHue, the more people can get the support they need, she explains. Accessing the resources you need isn’t always straightforward, especially for marginalized communities facing additional barriers in health care. ChronicHue offers a safe space where BIPOC patients can connect, share experiences, and learn from each other, which helps foster self-advocacy and improve quality of life. 

“Living with a chronic illness goes hand in hand with mental health,” Sarah adds. “Having a platform like ACR to share ChronicHue shows researchers and doctors that this resource exists — and they can pass it on to their patients. The more health care professionals see patient spaces like this, specifically for BIPOC, the more we can bridge the gap and help people take an active role in their health journey.” 

Through ChronicHue, Sarah and JP aim to connect BIPOC patients with clinical trials, improve health equity, and address health care disparities that disproportionately impact marginalized populations. They believe that by showcasing ChronicHue, they can encourage health care providers and researchers to recognize the value of diverse patient spaces. This exposure at ACR is a step toward ensuring that BIPOC patients have the support, representation, and resources they need to navigate their health journeys with confidence. 

Are You a BIPOC with Chronic Illness?

Join our monthly meetings of ChronicHue, a global online community empowering melanated people living with chronic illness and disability. Meeting monthly, it provides a forum for discussing topics that combine chronic illness, culture, and navigating the world as BIPOC patients. ChronicHue provides a supportive space for BIPOC folks to connect with others who can share and understand their racial or cultural experiences.