The importance of advocacy in the chronic illness world

Earlier today, the speaker of a faith-based class I participated in was discussing the ancient Greek term “parakletos,” which meant “advocate.” My ears perked up, as advocacy has become such an integral part of my life. The speaker explained how the term also meant “helper, counselor, intercessor, or someone who is called to aid, to stand beside.”

To me, this paints a vivid picture of what it means to be an advocate — someone who is called not merely by choice, but by a deep-rooted desire to stand in solidarity with those who need support.

The personality behind the advocate

The first time I felt the call to step into advocacy was just over two decades ago. For the first few years after my lupus diagnosis, I was trying to stay afloat. I had no idea what a health advocate was, nor did I have any desire to put myself out there. I was focused on my own education, experiences, and treatment research. Over the years, I became more comfortable with all things lupus.

I had originally attended college to become a nurse, so the role of advocate felt natural to me when I did start experiencing a tug to help others going through the diagnostic process. People who step into advocacy roles often possess a unique combination of empathy, resilience, and determination. In addition, we’re often deeply sensitive to others’ struggles because we’ve experienced significant trials ourselves.

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At my core, I am empathetic and driven by a sense of fairness and justice. It hurt my heart to think of people putting their lives on hold and hurting emotionally and physically because they were unable to get answers about why they felt so terrible.

Then, one day, the vision of “Lupus Chick” came to me in my dreams. That dream, combined with my personal lupus experience and nursing school knowledge, ultimately led me to put myself out there. At that point, I was ready to speak openly about my condition, and I wanted to be there for those who were just starting their journey.

From silence to strength: The journey to advocacy

Perhaps you’ve reached a point where the thought of speaking out and joining the advocacy world interests you. Perhaps after all the time you’ve spent navigating the medical system, understanding the emotional toll of chronic illness, and learning to communicate effectively with healthcare providers, you realize you possess a wealth of knowledge that could ease the path for others.

If this sounds like you, consider these ways to move forward:

• Educate yourself: Advocacy begins with knowledge. Stay informed about the latest research, medical treatments, and policy changes related to your disease. Being well-informed helps you advocate more effectively and give others up-to-date, accurate information.
• Share your story: Whether through social media, a blog, videos, YouTube, or speaking engagements, sharing your personal journey can inspire and educate others. Don’t underestimate the power of your story — it may resonate deeply with someone who feels alone.
• Engage in policy change: Advocacy is about more than just raising awareness; it sometimes means helping to change laws and policies. Learn about legislation that affects the chronic illness community and connect with organizations that are working toward policy reform. Consider writing letters to representatives, attending advocacy events or rallies, or teaming up with legal entities to help change current laws.
• Volunteer with nonprofits: No matter the disease, there is likely a nonprofit organization that is advocating for patients in your area. Consider volunteering, helping with social media or content, attending events, putting together fundraisers, or sharing your story at their next meeting. Nonprofits are always in need of volunteers, and this is the perfect way to get your feet wet! (I volunteered at a national lupus organization for almost a decade and learned so much about advocacy!)

Remember, you don’t have to launch a large-scale campaign overnight. Start small, which also helps you to take care of your health. That is one thing I warn advocates about: getting so excited to help others that we sometimes push ourselves and pay for it in physical ways that are detrimental.

Advocacy in the chronic illness world is not just a role — it’s a calling. This road has allowed me to turn one of the most challenging things in my life (the diagnosis) into one of the most rewarding and beautiful things I’ve ever experienced (helping others). I am excited for you to begin this journey if you feel led to do so!

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.