Lupus Advocacy: The Honest Truth

Advocacy for lupus can be overwhelming. Dealing with other people’s issues while battling your own can lead to advocacy burnout. Life as a lupus advocate is not easy. It is not for the faint of heart. Although many lupus advocates make it seem seamless, there are a lot of things that are never seen.

What is lupus advocacy?

Advocacy is action to help others—a way to promote, protect, and defend the rights of disadvantaged individuals and groups. Advocacy can involve speaking, acting, and writing on others’ behalf. Officially, advocacy is defined as providing someone with assistance. A way to have their voice heard. A service that aims to assist people in understanding their rights and expressing their opinions. It can be defined in a variety of ways. The most basic and well-known is to defend or promote a cause. This definition demonstrates that advocacy is a proactive rather than a passive process.

Why is advocacy so important?

"Advocacy" is a broad term that encompasses a variety of activities. One person may make a career out of advocacy, while another may merely speak up for a friend in distress. Regardless of how it is used, advocacy is critical to the growth and development of the global lupus community.

A little word with a straightforward definition. When you have a strong conviction about someone or something and believe that the world as a whole pays too little attention to it, it becomes a passion for helping others. Advocacy is vital because numbers can equal greater love, power, and support.

What does it take to be an advocate?

To be an advocate, you must put in a lot of effort and attention. The work of an advocate necessitates a lot of time and desire to help others. This can be especially demanding when you are going through struggles with lupus.

An advocate never stops learning and listening.

As an advocate, one must pay attention to the people they speak to. Ultimately, they must learn from them. One cannot be preoccupied with getting their point through and neglect to stop and listen. We can't adapt to needed demands if we don't listen.

An advocate must be flexible

As you advocate, it’s important to remain flexible. You have to reach people via different mediums. Learning the different ways to communicate can be overwhelming as you deal with your flares.

An advocate must be willing to recover from negative responses.

Oftentimes, advocates are dealing with opposition or negative remarks. They have to be tenacious enough to deal with negative responses and possibly negative energy. It’s hard to recover from a negative reaction in order to continue advocating.

Lupus advocacy can be overwhelming

As a lupus advocate, I have to be clear and concise, assertive, listen carefully to other people, ask questions, and follow up. All while trying not to get too frustrated with me as I battle my lupus issues. It can be overwhelming when it feels that your message has gotten lost or your work is done in vain.

Finally, regardless of how hard I work, I know I may encounter occasions when I am unsuccessful. Advocacy often does not have instant benefits. Certain circumstances may need perseverance and effort to address or settle issues. I love being a lupus advocate. It can get hard to continue, especially when personal health challenges become overwhelming. It can be difficult to be able to advocate properly. I learned to schedule breaks and rest. This has helped me refresh and not be a victim of advocacy burnout.

If you are an advocate, what are some of the issues you face? Let me know in the comments.