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Being a health advocate is such a powerful experience for a variety of reasons. To learn more about the ways this role has changed the lives of our health leaders, we reached out to the Social Health Network Facebook group.
We asked, “In all of your advocacy work, what has been your most rewarding experience or achievement?” Dozens of people responded. Here is some of what they shared.
Calming people’s fears
Most people are filled with fear when they are first diagnosed. Patient leaders shared that they have been able to engage with community members to help shift the conversation. By sharing their own experiences, they were able to calm others’ fears and help them focus on the acceptance stage of the journey.
“My reward comes when I can calm fears and share information with someone newly diagnosed with macular degeneration.”
“I feel like hearing the adult patients speak gives the families of the newly diagnosed new insight. It also relieves some of their fears.”
When you think you are the only one living with a particular diagnosis, you tend to believe in the stigma. But by connecting with patient advocates, you see that you are not alone. This is a huge step in letting go of stigma and moving forward.
“I was so nervous about sharing my story at first. There is a ton of stigma about mental health and women’s issues to begin with. I was worried about the effect that sharing my story would have on my life. But I kept thinking back to when I was first diagnosed and really needed to connect with people who understood, so I kept writing and sharing my journey.”
“Knowing you are not alone goes a long way.”
Making one-on-one connections
So many people replied that the most satisfying experience is the one-on-one conversations that happen as a result of their advocacy. To connect with someone directly and hear that you have been important in their journey is immeasurably rewarding.
“My most rewarding experience is connecting one on one with an individual who has deep anxiety and confusion about their diagnosis. I am able to provide them not only emotional support but researched facts so that they can advocate for themselves. ￼This was done for me, and I need to give it back.”
“I love it when someone tells me that they relate to the experiences I have had and that now they know more about what they are going through.”
“When someone reaches out to me because they live with IBD and need someone to talk with, it does not matter how many degrees are between us. They feel like I am a safe person to open up to.”
Receiving support as well
Several people shared that they also receive support as a result of stepping into an advocacy role. For some people, being able to lean on the community while they are also answering questions is exactly the support they need.
“I was so reassured during my early diagnosis time.”
“Our advocacy community is always there for us and we for them. THAT is priceless. I am grateful for these friendships with such passionate, stellar people.”
“It was a fantastic conversation that gave us both validation.”
The most common answer the community gave us is that serving in this way provides so many people hope. This type of interaction can have both immediate and long-lasting effects on people in the community. When people express their gratitude to them for their support, advocates find the hope to keep fighting their fight.
“I love to give hope to someone feeling hopeless.”
“When someone tells me they had no hope until they heard my story and now they have hope, I know I have changed their life for the better. Whenever I hear anything like that, I just break down in tears. It touches me deep in my heart and makes advocacy worth it.”
We want to say thank you to all the health leaders who shared their thoughts for this story, and to all health advocates. The effort and energy you put into helping others is changing the world.