Finding My Footing Through the Social Health Network

I was diagnosed with non-muscle invasive bladder cancer as a younger woman, and I felt alone in it. Most of the bladder cancer stories I found looked nothing like mine. So I started making videos to find other women going through the same thing. That is how people started finding me.

Somewhere along the way, I joined a patient reporting panel through a major pharmaceutical company. That was my first real taste of advocacy. I continued through my journey as an advocate but felt like I was missing something. I found the Social Health Network and earned my Patient Leader Certification, which filled all the missing parts that I was seeking.

That certification changed how I saw myself

Before, I was a patient sharing my story online and hoping it helped someone. After, I had language for what I was doing. I understood advocacy as real work, and I understood that my lived experience had value other people needed.

The training gave me new tools I can use. It taught me how to listen without rushing to fix. That mattered to me because my own path into advocacy started with feeling disbelieved about my own body. Providers kept telling me it was a UTI or a kidney stone, then later that I was lucky to have the "annoying" cancer. When you have been dismissed like that, you learn to sit with people and actually hear them.

I found people who understood

Connecting to other Health Leaders, for the first time, I recognized there were people who understood both the illness side and the advocacy side. I was not the odd one out anymore.

What I learned shaped new ways to promote myself. I created the Cancer Care Book to help patients and caregivers keep track of their lives during treatment. I built a free searchable cancer resource directory so people would not have to search alone when they are already worn out. I partnered with another patient and their caregiver to start the Ring of Resilience, a program that sends free bells to bladder cancer patients to celebrate the small wins along the way.

None of that would look the way it does without the Social Health Network helping me refine my messaging and marketing. It took a woman making videos in her bedroom and helped her become an advocate with solid footing.

If you are a patient wondering whether your story matters, mine felt small once too. The right community can change that.