As part of our patient education conference earlier this year, we moderated an advocacy panel featuring social workers Liz Morasso, LCSW, Juana Mata, CSW, and Jessica Rowshandel, LMSW. To start, they each defined what advocacy means to them. For example, Juana shared that she believes advocacy “means to be a voice not only for myself but for lupus patients and the lupus community as a whole.”
They also discussed advocacy-related topics like the benefits of attending a support group, when to tell your employer that you have lupus and how to ask for workplace accommodations, how to communicate with your doctor, and much more!
Lupus advocacy can take place at personal, community, and government levels. And it is important to recognize that what happens at government-levels regarding healthcare policies and funding impacts communities and individuals. This is why Lupus LA asks you to get involved in advocacy by learning about issues that affect people with lupus and contacting your government representatives.
In addition, Jessica has written an article called How to Be a Lupus Advocate, which offers suggestions for how to get involved with lupus advocacy at every level. She begins the article, “When it comes to your life with lupus, you are the expert. You have the lived experience of managing lupus. And there are many ways for you to use your voice and experience to advocate for your needs and the needs of the lupus community. Your goal as a lupus advocate is to get what you need from someone who has the power to give you what you need.” She goes on to list concrete ways you can get involved in advocacy, and many do not require a lot of dedicated time or energy.
As Liz stated, “Advocacy means empowerment.” Indeed, advocacy is powerful and being an advocate gives you the power to help ensure you and the lupus community live your best lives.