Emotions driving interest in patient advocacy

Few patient advocates planned to take up this role. For many of us, it evolved out of what we noticed about a health situation that was not going well for us, or for someone we loved.

Initial ideas, about what we wish was better in our own lives, typically expand into speaking up for more people in similar circumstances. We (patient advocates) take any opportunities we can find to step up, sharing our perspective with any policymakers and healthcare professionals who will listen, in the hope of deepening their understanding of our health conditions and changing things for the better. And our authentic voices can be powerful because they are rooted in our lived experience.

However, essentially, many advocates got started because they felt negative emotions: frustration, anxiety, fear, or grief. And advocacy is not like a job where you can put down your tools and take a day off: the people we advocate for are still there, and change or support is still needed. Many patient advocates see this role as a mission, with profoundly important implications for the people we serve. So it can be very tempting to keep pushing forward, even when we are exhausted by what we have already done. In the next step, Lauren Roberts, CEO of RareMinds, will share some tips about how to avoid burning out.