The Transformative Power of Being a Lupus Advocate

Have you ever wondered what it's like to be a lupus advocate? When I was first diagnosed, I never thought I would become an advocate for others. Knowing lupus is misunderstood and complex, advocacy was inevitable. I felt it was important to bring awareness and support to this community. With tasking myself with being a lupus advocate I have found some good and bad in the job.

What does being a lupus advocate mean?

Being a lupus advocate to me means being a voice for those who are often unheard. Fighting for better treatment options and access to care. And finally, working towards a future where lupus is just a medical note in a book with the word CURED.

As a lupus advocate, I have the privilege of working with individuals affected by this complex and challenging disease. I have seen firsthand the struggles, the triumphs, and everything in between. I walk the journey with so many daily.

Being a lupus advocate is not easy. It can be emotionally draining, physically exhausting, and mentally taxing. But despite the challenges, it is one of the most rewarding experiences I have ever had.

The struggles of being a lupus advocate

One of the biggest struggles of being a lupus advocate is the constant stress and anxiety. I face a wide range of challenges like the lupus warriors I advocate for. From physical symptoms such as fatigue, joint pain, and skin rashes, to emotional and psychological ones like depression, anxiety, and social isolation. As an advocate, it can be difficult to navigate through your own issues to help others. It is also hard to see others struggling with these issues day in and day out without resolve and hope.

Another challenge of being a lupus advocate is the burnout. Advocacy work is often a thankless job. There are days when I don’t want to do anything because of my own heavy symptoms. But I know there are others out there that need help. I know there are many that need encouragement and direction. This often leads to me doing more than my body, mind and soul can take. I find myself stressing out in the process. Sometimes I have felt like I haven’t even done enough. It can be frustrating to feel like you are not making enough of a difference.

Additionally, lupus advocacy work often requires long hours and high levels of commitment. It also requires a willingness to sometimes put yourself second to the needs of others. This is exhausting! Physically and mentally draining. I have had to learn to find the right balance of being a lupus warrior and a lupus advocate. At times, it’s hard to find that balance. All the time, it is necessary to keep sane in my own skin.

The good of being a lupus advocate

Despite the challenges, being a lupus advocate can be rewarding. There is nothing quite like the feeling of helping someone who is struggling with coping with lupus. Whether it is providing emotional support, connecting someone with resources, or advocating for policy changes, every small victory feels like a huge accomplishment.

Another positive aspect of being a lupus advocate is the sense of community. There is a strong sense of a friendship among lupus warriors. After all, we know how it feels to battle through lupus issues. Being a part of that family is incredibly rewarding. From attending support groups to participating in fundraising events. To simply connecting with others online, being a part of the lupus community provides a sense of understanding and purpose. It all helps me to understand my own lupus better.

The fulfillment of helping others

Ultimately, the fulfillment of being a lupus advocate comes from helping others. I love the transformative power of being a lupus advocate. Not just transforming others’ lives but my own at the same time. Being able to speak from experience and give people hope is an amazing feeling. Letting people know that they are not alone helps more than I ever imagined it would. Knowing that you have made a difference in someone's life, no matter how small, is an incredible feeling. If I’m advocating for better access to care, providing emotional support to someone who is feeling overwhelmed, or simply raising awareness about lupus, every action I take as an advocate has the potential to make a meaningful impact.

In conclusion

Being a lupus advocate is not easy. As I mentioned before, it can be emotionally draining, physically exhausting, and mentally taxing. But despite the challenges it is also one of the most rewarding experiences I get to complete every single day. By providing support, raising awareness, and advocating for policy changes, I feel I play an important role in improving the lives of those affected by this difficult disease.

If you are considering becoming a lupus advocate, know that the work is hard, but the rewards are immeasurable.