Lupus & You Webinar Recap: Be Your Strongest Voice

Navigating your medical care can be overwhelming, especially when you feel unheard or misunderstood. During this event, Lupus & You: Be Your Strongest Voice, we discussed strategies to help people living with lupus advocate for their care, communicate clearly with their healthcare team, and navigate challenging situations where their voice may not always be acknowledged. The discussion also explored how preparation, positive intention, and mental wellness play a critical role in taking control of your health.

We were joined by Dr. Ariana González-Meléndez, rheumatologist, Puerto Rico Support Group Facilitator and Lupus Warrior; Brian Ung, PharmD, MS, pharmacist, Man Cave Support Group Facilitator and Lupus Warrior; Joy McNeel, LCMHC, PhD, Licensed Clinical Mental Health Counselor (LCMHM) and Lupus Warrior; and Racquel Dozier, retired Licensed Clinical Social Worker (LCSW), VA Lupus in Color Support Group Facilitator and Lupus Warrior. Together, they shared expert insights, practical tips, and personal experiences to empower patients to build confidence, partner with their care team, prepare for appointments, and reclaim their voice.

Top Takeaways from the Webinar: 

• Advocating for yourself starts with respect for both yourself and your care team. By recognizing that you deserve attentive, supportive care, you can confidently communicate your needs to ensure your voice is heard.
• You are the expert on your own body and your health. Doctors, pharmacists and other health care providers are important tools in your care but you are in charge of your health care. You should be responsible for preparing for appointments, keeping track of your medications and making choices that fit your lifestyle and needs.
• Taking care of your emotional well-being is key to effective advocacy. Recognizing your worth, setting boundaries and celebrating small victories help you reclaim your voice and navigate challenging medical interactions with confidence.
• Effective advocacy is built through partnerships with your health care team. By using “we” language, fostering trust and maintaining open communication, you and your health care team can work together to make informed decisions and manage lupus as a team.

Our Health Education Specialists also collected our speakers’ answers to attendees' questions from the event:

How can people with lupus communicate clearly and confidently with their health care team?

Start by being organized and knowing what you want to discuss at each appointment. Keep a list of questions, track symptoms, and bring a medication list or health notes. Speak honestly about your experiences, including fatigue, pain, or emotional stress. Ask for clarification when you don’t understand something and don’t be afraid to repeat or reframe your concerns. Dr. Ariana González-Meléndez explained the importance of communication with your health care team and how to best advocate for yourself in your appointments.

Remember, your voice matters, and you have the right to be heard.

What steps help patients take charge of their treatment and health care decisions?

Taking charge means being responsible for your care and actively participating in decisions. Prepare for appointments, keep track of medications and learn about treatment options that fit your needs and lifestyle. You can ask questions about how medications or procedures may affect your daily life and it’s important to discuss possible side effects or your concerns openly.

Your health care providers are tools to help you reach your goals, but you are in control of your choices. Dr. Brian Ung shared, “Preparation is power. … Preparing for your appointments and discussions with a master medication list can really set you up for success.”

How can people with lupus make sure all of their doctors are on the same page about their care?

Managing multiple specialists can feel overwhelming but communication is key. Bring updated records to each appointment, share notes from other doctors and ask your providers to coordinate with each other when possible. It can be helpful if you see specialists in the same health care system, that way they can use the same electronic medical records system, allowing them to share lab results, reports and other notes with all members of your care team.

Sometimes you may need to follow up directly with one provider to make sure everyone is being informed. Being proactive helps reduce gaps in care and ensures your team is aligned. Dr. Ung mentioned how your doctors may not frequently talk to one another, especially if they’re not in the same health system, but you can ask them to “message one another and share notes … so both sides are putting their heads together and creating the best plan for you,” he encouraged. ”

Why is it important to project your emotional well-being while advocating for yourself? How can it be done?

Managing lupus can be stressful, and taking care of your emotional health makes it easier to advocate effectively. “When you understand your rights, trust your voice and use practical strategies to advocate for yourself or a loved one, it’s less overwhelming and more manageable,” Raquel Dozier shared.

Strategies like meditation, journaling, humor, and celebrating small victories help you maintain confidence and reduce stress. Building a support system of family, friends, or counselors provides guidance and reassurance when navigating the emotional toll of lupus. Raquel explained that you mature on your lupus journey by learning coping skills that work for you and using them to navigate with confidence.

How can people with lupus and health care providers work together as a team to manage lupus?

Building partnerships with your providers strengthens your care. Share your experiences openly, ask questions, and collaborate on treatment plans that match your goals. Using clear communication and “we” language helps providers understand your perspective, supports shared decision-making, and creates a sense of teamwork in managing your health.

What is medical gaslighting and what are some tips if you experience medical gaslighting?

Medical gaslighting happens when a provider dismisses or downplays your symptoms, leaving you feeling unheard or doubted. If it occurs, document your symptoms, bring a support person to appointments, and ask for clarification or second opinions. “Second opinions are part of good medical care,” as Dr. González-Meléndez notes. Trust your experiences and seek providers who validate your concerns and partner with you in your care.

When is it a good idea to get a second opinion and how can it be done respectfully?

Consider a second opinion if you feel misunderstood, dismissed, or uncertain about your diagnosis or treatment plan. Requesting another opinion can be done respectfully by explaining your desire for additional insight and bringing your medical records. A second opinion can provide reassurance, alternative options, and help you feel confident in your care decisions. There may also be other reasons to seek a second opinion, such as facing major surgery, considering experimental treatment, or wanting to explore alternative approaches to care.

How can someone living lupus advocate confidently and take control of care?

Being a strong advocate starts with knowing your own body and health, and feeling confident to speak up about your needs. Advocating on behalf of yourself and clearly stating what you need helps build the collaboration with your providers. “Your voice deserves space. You're the expert on your body and your lived experience,” Dr. Joy McNeil emphasized.

Preparation for appointments, keeping track of medications, and asking questions are key steps to improve shared decision-making. Remember that your health care providers are partners in your care and they are people too. Building a respectful and open relationship with your providers can help you make informed decisions together.

Advocating effectively means taking care of your emotional well-being and trusting that you can navigate your lupus journey as an active, empowered team member in your care.

Lupus & You is a free educational series where people with lupus and their family and friends can learn more about the latest in lupus research and managing the disease. You can find slides and additional resources from this Lupus & You here.

Our next Lupus & You will take place on Wednesday, March 18, 2026, focused on Protecting Your Kidneys. Find more information about upcoming and past Lupus & You events here.

Authored by:

Ashley Holden, MEd, CHES

April Fuller, Freelance Writer and Editor

This blog post and the lupus resources found on the National Resource Center on Lupus are, in part, supported by the Centers for Disease Control and Prevention under Cooperative Agreement Number NU58 DP006139. The contents are solely the responsibility of the developers. Points of view or opinions do not, therefore, necessarily represent official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.

The Lupus Foundation of America and our health education specialists have answered some of your most common questions. The provided answers are for educational and information purposes only. Consult with your doctor/health care team for medical advice.