Using Social Media to Amplify the Patient Voice and Advocacy

Thirty-year-old Clara Mae Cirk is a stage 4 lung cancer patient who uses social media platforms like TikTok and Instagram to amplify her voice and raise awareness about patient advocacy. She also aims to provide a safe and honest space for like-minded patients to connect and ask questions.

I want to get really involved in [this] stuff, and I'm finding that doing all that is more of my true purpose in life. I found it to be really fulfilling to talk about my story and help others, she emphasized in an interview with CURE.

During the interview, Clara discussed her experience as a younger adult diagnosed with lung cancer, highlighted her advocacy efforts on social media, and explained what inspired her to start sharing her journey so openly. In another video, she also addressed why the word 'survivor' does not resonate with her.

You can follow Clara and her journey on TikTok and Instagram @C_Cirks. On these platforms, she openly answers questions about her diagnosis and treatment, shares updates on her condition, and creates a safe space for others with cancer to have an honest dialogue about their disease.

Transcript

Your “Questions with Clara” series on social media have resonated with so many. What inspired you to start sharing your cancer journey so openly on social media?

I've always done this silly thing on my private Instagram story of talking to my followers and pretending I'm an influencer. I started doing it a long time ago and just kept it to my close friends list on Instagram. It was just a way for me to dump my feelings out, and it was very therapeutic for me just to sit on camera and talk about stuff.

When this all happened, I thought, "What better way to process everything than to just record myself and talk about stuff?" I got kind of tired of explaining everything to my friends and family, so I think it was just an educational way for me to say, “Hey, watch this video if you want to know what my treatment is right now, or what part of the process I'm in.” It was a much easier way to just send a link and explain things rather than retyping the same thing over and over again. So, yeah, I think that's where it came from.

I also feel like I noticed a lot of people, once I was diagnosed, started connecting with me on social media. I noticed they were posting videos about their journey, and that really inspired me because I wanted to talk about my story and how that's different or the same or whatever. I saw all these people going to these conferences and stuff, and I really want to do stuff like that, like public speaking engagements and different events and advocacy.

I think that's what motivated me to start the series, too, because I want to get really involved in stuff. I'm just finding that doing all that is more of my true purpose in life. I found it to be really fulfilling to talk about my story and help others.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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