How Connecting Online With People With CF Changed My Life

Over the last 10 years, I've gone from only interacting with local people with cystic fibrosis to joining hundreds of people with CF around the world to help build an incredible online community. This community has helped me through hard times, and I can't wait to see what we do next.

| 5 min read
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Marissa Benchea
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If someone 10 years ago had said to me that I would be speaking on a panel at a world-famous festival about how the cystic fibrosis online community has saved my life, I probably would have laughed in their face.

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Let me clarify. I would have laughed because at that point I could have counted the number of people I knew with CF on both hands, since they were mostly just people in my local community in Nashville. I had just joined Facebook and my Twitter account was in its infancy. I knew that CF groups existed in chat rooms, but at that time in my life, I didn't feel the need to be engaged with other people with CF. It didn't help that most of the online conversations I had read up to that point seemed pretty negative and depressing.

Fast forward to 2013: I made more friends with CF and was meeting people through social media; however, it still felt like I was a part of one-way interactions, where I only saw them through pictures and posts. I could have used a more accessible online community during that time, since my life had changed dramatically in four years. I lost my mother, and my father was dying of cancer. Also, my health tanked very quickly (it's amazing how that happens), and I was no longer working.

As I was using this time to take care of my health, I also got more involved in my local CF chapter, which led to me joining a national strategic task force with other adults from around the country who had CF.

As members of the task force, we were given instructions to log onto a video conferencing app and that's when EVERYTHING changed for me.

I was finally able to interact with people in REAL TIME, while also keeping myself safe from germs. Being able to talk to people living with CF from around the country was truly an aha moment for me, and being a member of the online CF community went from feeling like a one-way interaction to a dynamic conversation overnight. This revelation eventually inspired a few of us to think even bigger -- that's how we created BreatheCon, a new virtual event for adults with CF.

At the first BreatheCon in 2016, 188 people living with CF came together face-to-face in the virtual environment. It immediately became clear that this was far more than just a one-time event -- it was a supportive community built entirely online. Building on the success of BreatheCon, we're now determined to make the online community and experience even better for people with CF to connect and have fun.

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To help improve BreatheCon and the online CF community, I joined the CF Foundation as they submitted a proposal to South by Southwest Interactive (SXSW) to share about our experiences with online communities and to explore what else is happening in this virtual space. Our proposal, “Do Online Communities Make Us Healthier?” was accepted and we were invited to moderate and participate in a panel with other professionals in the online health community field.

I shared a bit of my story and discussed how our community has blazed a trail in using technology to connect with each other, crowdsourcing tips and tricks for living with the disease, and building relationships with people that we would not have otherwise met.

Participating on this panel confirmed a lot of my assumptions about our community:

  • We are trailblazers.
  • We are fearless.
  • We are the only experts on living with cystic fibrosis.
  • We are changing the clinical conversation on how information is spread and how we converse with our care teams.
  • We are innovative in the way we interact with each other and with our care.
  • We are inspiring other disease groups -- and even industries -- to better partner with their communities to develop genuine and safe connections.
  • We are positively impacting our overall health through engaging with online health communities.

Ten years after beginning my journey connecting online with people with CF, my life is totally different -- in some ways, for the better. I have connected with the most amazing people from around the world because of the internet; Facebook groups have proliferated on every topic imaginable; Instagram is a place where people share their life with CF through pictures and stories; Twitter is an incredible advocacy tool; and amazing bloggers, vloggers, podcasters, and YouTubers are making their voices heard.

Some of my closest friends are people that I have never met; some of the most personal conversations I have had are with people I will never hug; and even on the days where CF takes one of our own, we find strength and hope through the virtual hugs, prayers, and love.

In my own personal struggles, life changes, losses, and health peaks and valleys, the online CF community has remained a constant. To each and every person who reads this and has joined me along the way, thank you for saving my life.

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Marissa was diagnosed with CF at birth. She attributes being alive to her dedicated parents, incredible clinical teams, her friends, her CF tribe, and a very sassy attitude. She spends her time advocating for the CF community, being the “cool aunt,” raising her two adorable cats, eating at new restaurants, juicing, vogueing, and wearing caftans while chatting with all her friends with CF online. She moved to southern Louisiana in 2018 and is hopeful for the future of CF science and what lies ahead. You can follow her CF life on Instagram at @kissoffcf

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.