Finding Your Voice: Self-Advocacy and Lupus Organizations
Have you ever left a doctor’s appointment feeling unheard? Maybe your symptoms were dismissed as stress, or you waited months for a diagnosis that should have come sooner. If this sounds familiar, you’re not alone—and you don’t have to face it alone.
When you’re living with lupus, advocacy becomes essential. Sometimes that means learning to speak up for yourself in medical appointments. Other times, it means connecting with organizations that fight for better research funding and treatment options.
Both types of advocacy—personal and organizational—work together to create real change for the lupus community.
How to be an Advocate for Yourself
Picture this: You’re at a follow-up appointment, and your doctor asks, “How have you been feeling?” You want to explain the joint pain that kept you awake three nights last week, the brain fog that made you forget important meetings, and the rash that appeared and disappeared twice. But where do you even start?
You end up saying, “Oh, about the same,” and leave the appointment knowing you didn’t communicate what you really needed to. Sound familiar? The good news? You have more power in these situations than you might realize.
Self-advocacy isn’t about being confrontational or difficult. It’s about becoming an informed, prepared partner in your own healthcare. It means walking into appointments with clear information, specific questions, and the confidence to speak up when something doesn’t feel right.
The foundation of effective self-advocacy? Good documentation.
Note taking and writing can be a powerful tool for advocating for people with lupus. Keeping track of symptoms, emotional state, and life in general is not only therapeutic, but creates a record that can be brought to medical professionals as information to help get better care. You can read more about recordkeeping and lupus, here. This article goes into tips and tricks for journaling.
If you prefer a tech-driven approach to managing your health information, CareMGMT™ offers a comprehensive solution. This free digital health app, available on both Apple and Google App stores, is specifically designed to help people with lupus manage their condition more effectively. The app provides three key features:
- Symptom tracking to monitor patterns and changes over time
- Personalized insights based on your individual health data
- Private support community for connecting with others who understand your journey
CareMGMT™ was developed by Progentec, the digital health and diagnostics company that also created Lupus Corner, to keep the community connected with new research and provide a platform for community and health education.
This data can be incredibly valuable when meeting with medical professionals. Dr. Bernard Rubin, Progentec’s Chief Medical Officer, welcomes self-advocacy from patients. “As a physician, I felt my most rewarding doctor-patient relationships were based on shared decision making and mutual respect. I encouraged patients to come prepared with questions, and concerns to actively participate in their health care decisions. This partnership recognizes all of an individual’s preferences and concerns which are integral to making informed decisions and developing effective treatment plans. When patients advocate for themselves, they are more likely to adhere to the decisions agreed upon and monitor the effects of those decisions on their health care journey.”
As a caregiver or ally, you can be an advocate too. You can read more about advocating as a caregiver or ally, here. This article goes into the challenges of caregiving, the importance of being educated about lupus, and how to balance being a caretaker and ally with taking care of yourself.
You can read more here about hospital and political advocates for people with lupus. The article goes into what a hospital advocate is and a little bit of what a political advocate does.
While self-advocacy empowers you in individual healthcare encounters, larger systemic changes require collective action. That’s where lupus advocacy organizations come in—working behind the scenes to create the conditions that make your self-advocacy more effective.
What do Advocacy Organizations Want?
Organizations that advocate for lupus have certain goals that they are aiming for:
- Advocating for more funding for research and treatment, and preventing funding from being cut or moved away from lupus research, treatment, or advocacy.
- Increasing accessibility – making it easier for people with lupus to find information, get treatment, support each other, and get care.
- Researching to better understand the needs of people with lupus, caregivers, and medical professionals.
- Educating the community and the public about lupus and the needs of the community to aid understanding on how to be allies and supports for people with lupus.
- Making sure that people with expertise are connected to where they will do the most good, as researchers, service providers, or advocates.
The Mission: What are Organizations Fighting For?
An organization that advocates for people with lupus does a few key things:
Education: These organizations put out educational material for the people with lupus themselves, but also educate the people that provide healthcare services, make laws, and create important programs.
Research: These organizations often provide funding, in the form of grants, to research groups or other organizations. Usually, the other organizations are doing things that support the mission of helping people with lupus in other important ways. In the case of research, organizations support and advocate for research on the lived experiences of people with lupus, their symptoms, and medical practices – including new medications and alternative medicine.
Rallies and Conventions: Many organizations try to organize events that bring people together. These events give people with lupus, researchers, and other advocacy groups a way to talk to each other, share information, and otherwise support each other. Collaboration and working together with other organizations is key to making life better for people with lupus.
Programs: Organizations often act in more direct ways, putting together programs that help people with lupus when the current medical system isn’t supporting patients adequately. Advocacy organizations and other nonprofits fill the gaps in care even as they try to push for those gaps to close. One of those gaps can be simply to help navigate the complicated medical system.
Other programs take the form of a list of available resources that makes it easier for people with lupus, their families, and their caretakers to access and find what they need. They may also provide forums, meetings, or other ways for people with lupus, caregivers, and researchers to come together and support each other. Creating a community, or even organizing events, can be important for people with lupus.
What Advocacy Organizations are Out There?
There are many passionate people who are a part of organizations dedicated to helping people with lupus!
The Lupus Foundation of America is a tireless (and very successful) advocate for people with lupus, providing education and resources, lobbying congress for better funding, and pushing for better funding and federal programs.
Lupus Life Alliance provides resources and funding that advance lupus research, improve treatments, raise awareness, and help improve the quality of life for children and adults living with lupus. They also try to reach underserved communities.
My Lupus Team is a social network for people with lupus, essentially a large support group and forum site dedicated to connecting people with lupus in a “judgement-free place.”
The Lupus Research Alliance is a nonprofit dedicated to funding and leading research on lupus. Their hope is that, one day, we will understand the complex disease of lupus and find the cure.
What about LupusCorner?
We’re a blog dedicated to providing easily readable, but detailed and well-researched articles on various aspects of lupus! We want to provide tips and strategies for living with lupus, update you on the latest research, and provide a platform for connecting with other lupus warriors on our Facebook and Instagram pages.
Feel free to leave comments on our articles with your personal experiences and requests. We love hearing suggestions from our readers, and value your comments when deciding what to write about next. If you’d rather comment in a more private platform, feel free to share your thoughts and questions on CareMGMT™, where you can also access these blog articles.
Newsletter Summary
There are many organizations that tirelessly fight for better treatment and education about lupus. How do they do it?
The answer is – a little bit of everything! Organizations like the Lupus Foundation of America provide educational materials, raise awareness, and lobby congress for federal funding and better health policies for people with lupus all over the country. They also run events like the National Lupus Advocacy Summit.
Advocacy—whether you’re speaking up for yourself in a doctor’s office or supporting organizations that lobby for systemic change—isn’t always easy. But it’s essential.
Every person who learns to advocate for themselves makes the path a little clearer for the next person. Every organization that fights for better research funding brings us closer to more effective treatments.
Your voice matters. Whether you use it individually or as part of a larger movement, you’re helping to create a world where lupus patients receive the care and understanding they deserve.