How to forge your own advocacy path, no matter where you’re at

For many of us living with a chronic illness, there typically comes a time when we desire to share our story, help others, and dip our toe into the pool of advocacy.

Having met thousands of people with lupus over the past 20 years, I’ve learned that we all advocate in our own unique and special ways. Sometimes we’re in advocacy mode at full speed, while at other times, we rest for a while and let other warriors fill our shoes. And while advocacy can take on many forms, one thing is for certain: It isn’t a one-size-fits-all experience.

It doesn’t always require a microphone, stage, or massive platform. As many of us have learned, it also doesn’t require you to feel 100% well. If advocacy is an area you’re passionate about, it can be done from your bedside. And there’s no “right” way to be an advocate. You can start exactly where you are — with what you have, in the body you’re in today, and with your current health status.

Here’s the truth: Even if right now you don’t consider yourself an advocate, you already are an advocate. Just by waking up and facing the day despite the fatigue, pain, and fevers, you’re showing the world how a lupus warrior presses on despite overwhelming daily challenges.

If you’re looking for ways to become more intentional with your advocacy — whether from your bed, an IV chair at the hospital, or out in the community — here are some meaningful paths to consider.

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For the bed-bound or housebound warrior

My advocacy story began almost 20 years ago when I was either bound to my bed or in a hospital for three years. I was incredibly lonely and wanted to meet others to talk about daily life and what was or wasn’t working for them. Luckily for me, blogs were introduced online, which is how Lupus Chick started. Today there are so many additional advocacy avenues at our fingertips, thanks to technology.

1. Share your story online: Your story matters. Whether it’s an empathetic Instagram post, a blog, a video, or a tweet about what today feels like, you’re humanizing this disease. You’re educating others and reminding fellow warriors that they’re not alone.
2. Be a mentor in online support groups: So many people are newly diagnosed and terrified. Your words can be the light they need. Whether it’s offering advice or sharing a helpful tip, you can make a difference from the comfort of your own home.
3. Write letters or emails to lawmakers: Advocacy at the policy level matters — and your voice can influence change. You can send an email to advocate for lupus research funding, better care, or prescription access.
4. Create art, poetry, or content about your experience: You can express what it’s like to live with lupus through painting, photography, writing, or even audio recordings. Sharing your creations online or with advocacy organizations helps others see and feel what you go through. It’s advocacy in its purest form.

For those with more mobility

1. Organize or participate in local events: From lupus walks and support groups to community meetups or awareness booths at health fairs, your presence and leadership can connect and inspire others.
2. Speak at schools, churches, or other local gatherings: Many people still don’t understand lupus. By sharing your journey in person, you educate and inspire compassion.
3. Volunteer with a lupus organization or other nonprofit: Offer your time, whether it’s helping with virtual events, making phone calls, or managing social media. Organizations are often looking for patient perspectives and hands-on help.
4. Advocate within the healthcare system: Help others by sharing doctor recommendations, tips on navigating insurance, or guiding someone through a flare.

No matter where you are, remember: Your voice, your truth, and your presence are enough. Advocacy is not about being loud or having the most likes; it’s about being real. Whether you’re using your words, your art, your actions, or simply your heart, you are making a difference.

And if you’re still not sure where to begin, just ask yourself: What breaks my heart the most about this illness — and what small step can I take to change that for someone else?

Maybe your path is uplifting other men and women who feel forgotten. Maybe it’s helping teens who feel misunderstood. Maybe it’s simply whispering “You’re not alone” into the void until someone whispers back, “Thank you. I needed that.”

Remember, no matter what your advocacy journey looks like, you are the light. And the world needs your spark.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.