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Volunteer Advocate
cf insights cf insights

Importance of Online Communities

In 2017, online connections are becoming more and more part of our everyday lives. No one understands the importance of this more than those living with CF. Since infection control policies prevent CFers from spending time in real life; online communities are an incredibly important space. But don’t just take our word for it; we got to ask Erin Sullivan, co-founder of The Breathing Space, all about online communities.

So Erin, what is The Breathing Space?

The Breathing Space is a Facebook Group. A safe place for Canadian adults with Cystic Fibrosis to meet, share resources, heartache and laughter, explore, navigate this journey of life and death with chronic illness, breathe and most importantly… it allows us to be together.

The idea of course, is to create a community, where we can connect with each other and interact safely. Carole (co-founder of The Breathing Space) and I grew up going to CF camps and hanging out with our dear friends with CF. While this space doesn`t replace the loss we experience from not being able to safely share physical space, it does afford us the opportunity to develop new friendships, unite and explore all things CF related – with an entirely Canadian perspective and lived experience!

Why did you choose Facebook?

Facebook is a great place for us to connect, for a few reasons; two of which are ease of access and price! Many of our members work as full-time health care providers. However, because it is ourselves we are providing care for, the income is pretty low.

So free fits our ‘budget’ nicely!

How have you seen the opportunity to connect online change over the years?

The opportunities to connect online are vast, varied and pretty easy to navigate (unless you`re somewhat technically challenged, like myself). They are also ever increasing. The reason I began to use social media (back in the day), was explicitly to connect and keep up to date with, my CF friends. It is still one of the main reasons, I spend time online.

What other spaces inspire you?

Truthfully, I don`t spend a whole lot of time online, so I haven’t explored too many inspiring spaces. That being said, almost every blog or life related post from a fellow CFer, that I’ve come across, has inspired me. Otherwise, I enjoy yoga, mindfulness, wisdom, reading, articles on resiliency and heart inspired action…all fuel for the soul!

Do you ever take a ‘break’ from social media?

I do take breaks from social media. I like to feel free, unhooked and not at the mercy of my phone. I enjoy freedom from checking, responding, talking, looking at a screen etc. I love to be outside, talking with a friend, reading a book, or participating in life in any number of non-digital ways. However, when my health is challenged and I am confined to my home or hospital room, having the opportunity to connect and engage with the world, from the palm of my hand or table top, is an awesome gift.