I didn’t want to tell anyone about my diagnosis. I thought my family and a few close friends were enough. But I got brave one day four years ago and posted about it on social media. The outpouring of support was incredible. I thought, if I’m receiving this much support, I wondered if what I was going through could inspire others.
I reached out to a colleague at a healthcare advocacy organization, and he introduced me to Seth Rotberg, who told me how he got started in the patient advocacy world. Seth learned at a young age that he was a carrier for Huntington’s disease, a rare genetic disease that, unfortunately, took his mom too soon. Now he wanted to pay it forward for other young adults with rare and chronic diseases by sharing his story and co-founding Our Odyssey.
In turn, I shared my story of being diagnosed with stage 1 papillary thyroid cancer at 27 and asked how I could motivate others. Sure, I had written a few blogs here and there, but I was really looking to inspire more people. I started following him on Twitter, and tweeted content that I thought would resonate with people. I found other thyroid cancer patients on the platform and began to talk with them, too, and hear their stories. I participated in my first tweet chat, #patientchat, run by the Patient Empowerment Network and stated my thoughts and opinions on the topic for that week, as did Seth. Almost a year later, I became their first network manager for thyroid cancer.
I followed in Seth’s footsteps in the hopes of making as big an impact as he had, and I think I have. He taught me what it means to be a good patient advocate, someone who is there for others who feel like they’re alone and don’t have a voice, while driving change in the healthcare industry, particularly for young adults.
When you get a diagnosis as scary and life-altering as cancer, especially as a young adult, you don’t really know who to turn to because you’re so focused on what’s going to happen with relationships, friends and family, potential career paths and finances. Finding a friend who is going through something similar, such as a rare or chronic disease, not only helps point you in the right direction, but is invaluable.
To those patients and caregivers reading this, even if you are active as advocates now, I urge you to find your own Seth Rotberg. To medical professionals, please help your patients connect with their peers, and for those patients who want to become advocates, encourage them — it’s good for them, and it’s good for healthcare.
Carly Flumer received her Master’s degree from Boston University in Health Communication and Bachelor’s from George Mason University in Health Administration and Policy. As a result of her health outcome, she looks to advocate for other cancer patients through education, research, and health literacy. Find her on Twitter @carlyflumer.
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