Community views: The most rewarding policy advocacy experience

Becoming a health advocate is a powerful experience for many reasons. To learn more about how this role has changed the lives of health leaders, we reached out to the Social Health Network Facebook group.

We asked, “Of all your advocacy work, what is your most rewarding experience or achievement?” Dozens of people responded. Here are some of what they shared.

Alleviate people’s fears

Most people are scared when they are first diagnosed. Patient leaders share that they have been able to interact with community members to help change the conversation. By sharing their own experiences, they can allay others’ fears and help them focus on the acceptance phase of the journey.

“My reward came when I was able to allay fears and share information with someone newly diagnosed with macular degeneration.”

“I feel like hearing from adult patients will give families who have recently been diagnosed with new insight. It also alleviated some of their fears.”

Eliminate stigma

When you think you’re the only one living with a particular diagnosis, you tend to believe in stigma. But by connecting with patient advocates, you’ll find that you’re not alone. This is a huge step forward in removing the stigma and moving forward.

“At first I was nervous about sharing my story. There’s starting to be a lot of stigma about mental health and women’s issues. I was worried about the effect sharing my story would have on my life. But I still think about the first time I was diagnosed and really needed to connect with people who understood, so I continued to write and share my journey.”

“Knowing that you are not alone will go a long way.”

Make a direct connection

So many people responded that the most satisfying experience was the one-on-one conversations that took place through their advocacy. Connecting directly with someone and knowing that you are a part of their journey is a huge bonus.

“My most rewarding experience has been to connect directly with an individual who is deeply worried and confused about their diagnosis. I can provide them with not only emotional support but well-researched facts so they can advocate for themselves. This was done for me, and I need to return it.”

“I love it when someone tells me they empathize with the experiences I’ve had and now they know more about what they’re going through.”

“When someone contacts me because they live with IBD and need someone to talk to, it doesn’t matter how far apart we are. They felt I was a safe person to open up to.”

Also get support

Some people shared that they also received support from participating in an advocacy role. For some people, being able to lean on the community while they are also answering questions is the support they need.

“I was very reassured during my early diagnosis.”

“Our advocacy community is always there for us and we are for them. THAT is priceless. I am so grateful for these friendships with such passionate and brilliant people.”

“It was a great, authentic conversation for both of us.”

Give hope

The most common answer given to us by the community is that serving in this way gives so many people hope. This type of interaction can have both immediate and long-term effects on everyone in the community. As people express gratitude to them for their support, supporters find hope to keep fighting their fight.

“I love to give hope to someone who is feeling hopeless.”

“When someone tells me they have no hope until they hear my story and now they have hope, I know I have changed their lives for the better. Whenever I hear such things, I can only cry. It touches my heart and makes the campaign worth it.”


We want to thank all the health leaders who shared their thoughts on this story and all the health advocates. The effort and energy you put into helping others is changing the world.

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