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Home » e-Patient stories » Manifesto Made Real: Sharing My Story Helps Others Share Theirs

Stories have the power to punch you in the gut. Of course I mean figuratively, but in many real ways, literally too. I literally feel pain–coupled with inspiration–when fellow cancer survivors share their experiences, struggles and fears.

Stories have the power to bring people together, to motivate, inspire, change hearts and open minds. For me, sharing my story has not only helped me heal from the aftermath of my own cervical cancer diagnosis, but enabled me to help others heal.

Twenty years ago I went through surgery, chemo and radiation. I suffered my fear and pain in silence. I felt I needed to appear strong for family and friends.

I was 25 at the time and lost my uterus, cervix and, as a result, my fertility. While I had supportive family and friends, I didn’t know anyone who had been in my shoes. Or in the chemo chair. Or on a radiation table.  I had no support network of fellow cervical cancer survivors who could educate, support me or feel my pain–literally and figuratively.

I slowly built that network. I made connections and shared stories and experiences. I made more connections and kept sharing my story again and again. The more I shared my story, the more other women were willing to open up and share their experiences with cervical cancer. One story prompted another, then another. Our stories inspired others to start talking about cervical cancer, which led to a network of survivors supporting and educating each other. From this network, Cervivor was born–a community to grow connections and support among those undergoing treatment for cervical cancer, and for those of us living with its aftermath.

In today’s social media world, brave women are living out loud with their disease and their treatment. We are with them on the exam table, in the chemo chair, in the hospital bed and in the bathroom looking at a shower drain full of hair. They are educating the world through their experiences. They are making sure the disease is not invisible or ignored: by medical providers, policymakers or the public. When we talk about the importance of Pap and HPV testing and HPV vaccination to prevent cervical cancer, we mean it from a personal place of passion.

By sharing my story, I’ve educated healthcare professionals by speaking about the patient experience at their conferences. I’ve helped change legislation by testifying at state houses and at the U.S. Congress. I’ve served as a patient representative on committees that have shaped guidelines to reduce cancer deaths. My story, your story, our stories have an impact on the macro and micro levels.

Cervical cancer certainly isn’t pretty. Sharing personal experiences with a below-the-belt cancer takes particular courage.

Every one of us through our stories has the power to make epic changes whether we’re sharing knowledge, reducing myths, educating the general public, or inspiring people who are going through what we went through so that they don’t feel quite so alone.

Tamika Felder is a women’s health advocate, educator, community mobilizer, author, and Chief Visionary at Cervivor, a nonprofit dedicated to cervical cancer advocacy and support. The organization has mobilized hundreds of individuals to share their Cervivor Story on its website to support, educate and inspire others. It has launched video stories on the Cervivor TV YouTube

Did you enjoy this blog post? Go here: https://participatorymedicine.org/manifesto/ to sign the Participatory Medicine Manifesto and learn more about becoming a member.

 

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