6 Ways to Navigate Advocacy Burnout

Advocacy burnout is real. Some days, I'm just so tired of talking about my autoimmune conditions, navigating popular platforms, and battling uneducated comments. Sometimes, a deep fatigue sets in, and it stifles my motivation and creative energy.

Unfortunately, I can't take a break from my medical conditions, but I can certainly try to take a break from talking about them.

Here are a few things I consider when navigating advocacy burnout.

1. Do things you enjoy

Especially things that creatively fulfill me. Reading, singing, baking, taking a walk, going on a scavenger hunt, seeing a show, cuddling with my cat – my life is so much more than talking about my medical conditions, and it's important for me to take time to prioritize things that I love. I always feel more refreshed when I'm ready to return to writing articles and hosting support group events.

2. Recognize feelings of guilt

I sometimes feel a sense of guilt when I take a break, that I'm not doing everything I can to help in that moment. But we're only human, and I think we all deserve time and space when we need it. I try to keep in mind that I can't help others if I feel like I'm not taking care of myself.

3. Recognize that it's okay to keep some things private

As much as I want to be as open as I can for the community, I'm a firm believer that advocacy should not be something that hurts me. If rehashing a traumatic event is going to be too triggering for me and has the potential to harm me, it's okay for me to keep that experience private.

4. Take time away from social media

Social media can be a wonderful tool for reaching others in the community, especially when it comes to smaller rare disease communities, but many of my friends and I feel like we are often at the mercy of the all-mighty algorithm.

It can be very disheartening to spend a lot of time and emotional energy on a heartfelt piece of content only to find that it unexpectedly didn't reach many people. Honestly, some days, it feels like the algorithms want us to quit those platforms. I try not to get caught up in the casino-like energy of engagement and likes, and as much as social media can be important in reaching new people and connecting with different communities, I've found it necessary for my mental health to take breaks.

5. Find other ways to advocate

Does social media not feel like the right place for you? There are so many other ways to advocate! Join us here on RareDisease.net in the forums or on visit our stories page. You could start a blog, volunteer with a support group, or schedule meetings with your government representatives to discuss relevant legislation that impacts the community – there are so many ways to make a difference, and some avenues may feel more fulfilling than others at different times.

6. Remember that what you do is worthwhile and helps people

I think it's easy to question if what we do as advocates is worthwhile. It's not always easy and can often feel like an uphill battle. But then I get a new comment from someone in the community that says, "Thank you, you help me feel less alone," and it warms my heart. Advocating is important, very meaningful, and has the possibility to be life-changing.

How do you navigate advocacy burnout?