Living with lupus means navigating a complex healthcare system—often while managing unpredictable symptoms, fatigue, and frequent medical appointments. In these situations, it’s not uncommon to feel overlooked or dismissed. That’s why self-advocacy is essential. Learning to speak up, ask the right questions, and ensure your concerns are taken seriously can have a direct impact on the quality of care you receive and your overall well-being.
Medical self-advocacy isn’t just about being assertive—it’s about being informed, prepared, and empowered. Whether you’re reviewing your medical records, preparing for a doctor’s visit, or deciding whether to seek a second opinion, your voice matters. The more confidently you can participate in your own care, the better your chances of getting accurate diagnoses, effective treatment, and respectful communication.
What You Can Do as a Patient
Self-advocacy can feel overwhelming, especially when you’re already managing a chronic illness—but small, practical steps can make a real difference. Here are some ways to take charge of your healthcare experience:
1. Check Your Charts: Review your medical records regularly. Look for language that is dismissive, inaccurate, or biased. If you spot anything concerning, request that it be revised or redacted. Always document these requests in writing.
2. Write Down Your Questions and Concerns: Before each appointment, make a list of what you want to discuss. This helps keep your visit focused and ensures you don’t forget anything important.
3. Set a Clear Agenda: Start appointments with a statement like,
“I know we’re here to review my labs, but I’d also like to discuss my medications, pain level, and a few questions I brought. Where should we begin?”
This approach helps ensure your concerns are heard and keeps the conversation on track.
4. Bring a Support Person: Whether in-person or on a telehealth call, a friend, family member, or patient advocate can help you stay focused, remember key points, and feel supported. They can also assist in taking notes or speaking up if needed.
5. Change Providers if Necessary: If you feel consistently dismissed, unheard, or misunderstood, you have every right to find a new provider. Look for someone who respects your input and takes your concerns seriously. Ask for any refusals or disagreements to be documented in your record, and don’t hesitate to request clarification or explore second opinions.
You are the most consistent person on your healthcare team. While doctors and specialists come and go, you are always at the center of your care. Speaking up might feel uncomfortable at times, but it’s a crucial part of protecting your health and improving your experience as a patient.
Remember:
You deserve respectful, high-quality care.
Your concerns matter.
Your voice matters.
You are your own best advocate.
For more on this topic, I invite you to watch my presentation at LupusLA’s 2025 #LatestOnLupus Conference, included below.
Patient Advocacy Resources:
Dr. Nicole T. Rochester, MD
Founder, Your GPS Doc
(443) 584-6563 | yourgpsdoc.com
nrochester@yourgpsdoc.com
Dr. Brianna Cardenas, DMSc, PA-C, ATC
Founder, Healed and Empowered
healedandempowered.com
healedandempowered@gmail.com
Additional Resources:
AdvoConnection – National health advocate directory
GNANow – Health advocacy network
Lupus LA Referral Program – Help navigating lupus-related care
info@lupusla.org | (310) 657-5667
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