The Strength of Sisterhood: Navigating Lupus through Shared Resilience and Self-Advocacy
Highlighting the journey of sister duo, Juana, who is living with lupus and her sister, Estela, her caregiver.
After being diagnosed with lupus, Juana found a way to feel control amidst medical uncertainty with the support of her sister Estela. In the calming, repetitive motion of loom knitting, the sisters uncovered a quiet resilience – each looped stitch became a grounding moment for their family. Over time, loom knitting became more than a craft or a hobby–it was an escape and a ritual they shared, not as patient and caregiver but as sisters.
Juana and Estela’s story is a testament to the critical role caregivers play, especially in the unpredictable landscape of a lupus diagnosis, where support, advocacy, and understanding can make all the difference.
The Essential Role of Caregiving With a Lupus Diagnosis
Juana’s lupus journey began with persistent, unexplained symptoms that were frequently dismissed–a reality made more bearable by Estela’s unwavering presence. “She had hair loss, fatigue, joint pain, ulcers in the mouth and the nose, rashes on the scalp, the butterfly rash, and so many other symptoms,” Estela recalls.
Estela stood beside her sister in the ER the day she got her diagnosis, and quickly jumped into action.
Juana recalls, “Estela was just gathering information, sharing it with me and with the family. That's how we started learning about the condition first and navigating it together.“ For Juana, her sister’s role was more than support; it was life-changing.
A Journey of Self-Advocacy
Living with lupus often means navigating a complex healthcare system and learning to advocate for one’s own health needs. For Juana, speaking up was as much about survival as it was about empowerment. “We are the CEOs of our own bodies,” she says. “When something feels off, we have to fight to be heard. I wouldn’t be here today if I hadn’t trusted my own voice.”
The sisters' caregiving relationship highlights the importance of open, proactive communication in managing lupus. Beyond tracking Juana’s symptoms, Estela served as an emotional anchor for her sister. “A lot of the time, we don't need physical help,” Juana notes. “We just need somebody to listen to us, to be there and support us.”
Forming A Close Knit Community
As they continued on Juana’s lupus journey, the sisters realized they weren’t alone in their challenges or struggles. After recognizing the positive impact loom knitting had on Juana’s emotional health, they founded Looms for Lupus, a support network dedicated to sharing resources, encouragement, and support for both people living with lupus and their caregivers. By providing Spanish-language programming and workshops, the two sisters are leading a movement to empower those disproportionately affected by lupus, with the tools they need to be their own advocates.
“We wanted to not only give hope to the patient but also to the family members because we knew that it would affect them too,” Juana shares. “By providing support and resources in the language they needed, we could make sure that they understood the condition. Because if they understand the condition, they can better support their loved one.”
As the Mata sisters continue their work with Looms for Lupus, they carry forward the lessons learned from their own experiences with lupus and honor the partnership that has kept them both strong throughout their journey.
