Black History Month is a time to honor the strength, resilience, and contributions of the Black community. This year, we’re focusing on the theme “Your Voice, Your Power” to highlight the importance of self-advocacy in healthcare settings.

Self-advocacy means using your voice to express your thoughts, needs, and rights while making informed decisions about your health. When you have lupus, advocating for yourself is essential—it enables your doctors to treat you effectively, empowers those around you to offer the support you need, and ensures that your concerns are heard. No one knows your body better than you do, which is why the best person to advocate for your health is YOU. By learning how to communicate with your doctors, track your symptoms, and ask for the care you deserve, you take an active role in your health. Our self-advocacy resource provides key strategies to help you prepare for appointments, speak up confidently, and navigate potential barriers in the healthcare system. 

Health Disparities in the Black Community 

While self-advocacy is crucial, Black individuals with lupus continue to face significant barriers within the healthcare system. Research shows that lupus disproportionately affects Black communities—not only are Black individuals three times more likely to develop lupus than White individuals, but they also experience more severe symptoms and worse outcomes. The progression to kidney failure is nine times higher for Black patients, and lupus remains a leading cause of death among Black women aged 15-44. These staggering statistics highlight the urgent need for improved healthcare access, earlier diagnosis, and more inclusive research efforts. Read more about the challenges people of color face in healthcare and what the Lupus Foundation America does to address these health disparities. 

Preparing for Your Next Doctor’s Appointment

Advocating for yourself in healthcare settings starts with being prepared for your doctor’s appointment. Whether you’re managing lupus or experiencing new symptoms, walking in to an appointment with clear information can help ensure you get the care you need. Tracking your symptoms, bringing a list of medications, and preparing questions ahead of time can make a big difference in how productive your visit is. Having a trusted friend or family member join you can also help. Sometimes, an extra set of ears is invaluable in remembering key details and asking important follow-up questions. You can also bring a notepad to take down any information your provider shares.

Your voice matters in your healthcare journey, and the more prepared you are, the better you can communicate your needs. Check out our full guide to make the most of your next doctor’s visit. 

Recognizing Lupus Symptoms and Advocating for Your Health

Lupus is a complex disease that affects people differently, and its symptoms can often be mistaken for other conditions like arthritis or diabetes - this, among other barriers, can make lupus difficult to diagnose. Extreme fatigue, joint pain, swelling, headaches, and sensitivity to light are among the most common signs, but lupus can also affect the skin and hair—causing rashes, hair loss, and Raynaud’s syndrome. Any of these symptoms can come and go, making it difficult to recognize patterns and seek timely care if you think you might have lupus. That’s why knowing the signs and tracking your symptoms is a crucial part of self-advocacy—it helps you communicate clearly with your doctor and push for the answers you need.

Early recognition and diagnosis are critical to starting treatment sooner and preventing potential complications. In addition to the heterogeneity of lupus (the fact that it impacts people differently), unfortunately barriers in healthcare access and disparities can also often delay diagnosis. The Be Fierce. Take Control. initiative empowers Black and African American, as well as Hispanic/Latina, women to listen to their bodies if something feels off and educates around the common symptoms of lupus advocating for the right care, and accessing resources to help navigate if they think they might have lupus. Increasing diversity in clinical trials is also key—by ensuring that lupus research reflects the communities most affected, we can improve treatment options and health outcomes for everyone.

If you think you may have lupus, don’t wait—talk to your doctor and learn more about how lupus is diagnosed. 

This Black History Month, we’ve highlighted the importance of self-advocacy, health disparities, preparing for doctor’s appointments, and recognizing lupus symptoms early. Finding support, connecting with others who understand, and accessing reliable resources can make a difference in how you navigate life with lupus. We invite you to become a part of the lupus community by joining one of our support groups and exploring the National Resource Center on Lupus for information on managing your health. Your voice is powerful—use it to take control of your health, advocate for better care, and build a future where no one faces lupus alone.