The U.S. Hispanic community faces many inequities when it comes to health care — from accessing care to finding health resources to being underrepresentation in clinical research. As a result, Hispanic patients have become disproportionately affected by various illness, such as asthma, heart disease, and HIV/AIDS, according to the U.S. Department of Health and Human Services.
The disparities have also made it more difficult for Hispanic patients to advocate for themselves in medical situations and become active participants in their care. This was the case for CreakyJoints Español member Wigna Cruz, a rheumatoid arthritis (RA) patient from Puerto Rico.
Wigna struggled to trust medical experts after enduring a series of unfortunate health events. She was misdiagnosed with lupus when she first saw a doctor for joint pain in 2013, had a hard time finding the right treatment, and just didn’t feel heard by her doctors. What’s more, there were very few resources available for Spanish-speaking patients like Wigna — and the ones that were available weren’t the most reliable.
“The general health information available for the Hispanic community online heavily leans toward dangerous misinformation,” Daniel Hernandez, MD, Director of Medical Affairs and Hispanic Outreach at Global Healthy Living Foundation (GHLF), wrote in an article for Clinical Leader.
Wigna eventually found CreakyJoints Español, a website that provided her with expert-backed, Spanish-language resources as well as support from other Hispanic patients living with rheumatoid arthritis. Wigna shares how the site impacted her health, particularly during the COVID-19 pandemic, in a poster presented at ACR Convergence 2021, the annual meeting of the American College of Rheumatology.
“The information I received through CreakyJoints Español was factual and helped me make decisions about my health care, including RA treatment decisions, with my doctor,” she wrote.
Here’s more about how CreakyJoints Español made a difference in Wigna’s RA journey.
Being Ignored and Dismissed by Doctors
After being misdiagnosed with lupus, it took Winga almost two years of doctor’s visits and tests to find out that she actually had rheumatoid arthritis. Part of the delay was due to her symptoms not fully aligning with symptoms for RA, leading her physicians to dismiss her pain as mechanical rather than inflammatory.
“They just sent me to physical therapy, which ended up causing more swelling and damage,” Wigna says. “I felt that they weren’t really listening to what I was experiencing. It seemed like they were just kind of guessing at treatment.”
Eventually, Wigna went to a neurologist hoping to be taken more seriously. But despite the fact that her blood work showed elevated erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP) — telltale signs of an inflammatory condition like rheumatoid arthritis — the neurologist dismissed her pain as a mental health issue.
“The neurologist said there was no reason for my pain and that I was likely making it up in my mind as a result of depression,” Wigna recalls.
Unsatisfied with the diagnosis she’d be given and unhappy with the quality of life she was leading, Wigna continued to search for answers — a quest that took an emotional toll, leading Wigna to cry almost every day.
Accessing Resources That Address Her Needs
Wigna eventually found a rheumatologist — on her third attempt — who was easy to talk with and readily available. But despite having a doctor who encouraged questions and dialogue, she felt as though she was still lacking autonomy over her health because there were limited health resources that were written in Spanish and accurate.
“My rheumatologist actually discouraged me from doing research online, because I would come to her with information that wasn’t accurate or didn’t pertain to my disease,” Wigna says.
Aware of Wigna’s frustration, her physician reached out and recommended CreakyJoints Español, a website that provides Spanish-speaking readers with advice based on the latest scientific research on how to live with arthritis.
Wigna turned to the site with a bit of skepticism, a fair feeling given her challenge to find resources in the past. But the site eventually earned her trust and, as she wrote in her ACR poster, “made me feel less anxious and more comfortable using the internet.”
Wigna appreciates that the content on CreakyJoints Español is evaluated by experts before it’s published, as well as the fact that it encourages patients to learn about their condition and empowers them to be more actively involved in their care.
“It gives you the resources and tools you need to better manage and control your condition,” she says. And with the information being available online, Wigna says she can “easily reread information or share it with others” like loved ones or health care providers.
Finding a Community
But being armed with information is only half the battle when fighting a chronic illness. It helps to have emotional support. And though friends and family can provide that, people who are dealing with the same disease can offer it in a different way. This is something Wigna learned when she became a part of the CreakyJoints Español community.
“By joining this community, I’ve been able to connect with people who are in different stages of their disease and learn from them,” says Wigna, who adds that the shared experiences among members serve as a reminder that she is not alone in her battle. “There’s a support system within this community that you don’t get anywhere else.”
“I get very emotional when I think about being a part of the CreakyJoints Español community, because it has not only helped me in my chronic illness journey but is has given a purpose to do the same for others with my condition.”
Want to Get More Involved with Patient Advocacy?
The 50-State Network is the grassroots advocacy arm of CreakyJoints and the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to proactively connect with local, state, and federal health policy stakeholders to share their perspective and influence change. If you want to effect change and make health care more affordable and accessible to patients with chronic illness, learn more here.
Cruz W. How Online Spanish-Language Resources Got Me and My RA Through the COVID-19 Pandemic. Arthritis Rheumatology. 2021. https://acrabstracts.org/abstract/how-online-spanish-language-resources-got-me-and-my-ra-through-the-covid-19-pandemic/
Hernandez D. Tackling Health Misinformation Among Hispanics For Better Clinical Research & Patient Data. Clinical Leader. August 31, 2021. https://www.clinicalleader.com/doc/tackling-health-misinformation-among-hispanics-for-better-clinical-research-patient-data-0001.
Interview with Wigna Cruz, rheumatoid arthritis patient
Minority Population Profiles: Hispanic/Latino Americans. U.S. Department of Health and Human Services Office of Minority Health. October 12, 2021. https://www.minorityhealth.hhs.gov/omh/browse.aspx?lvl=3&lvlid=64.