The Power of Social Media When You Are Chronically Ill, (Written by Katie Dama-Jaskolski, President & Co-Founder)


I spend a lot of time on Facebook. A. Lot. In fact, thinking of not having Facebook makes my hands sweat and gives me a knot in my stomach. I have been thinking a lot about this lately and why this is. I have gone back and forth with myself about needing to spend less time on social media.

I thought that by giving myself a break, I would have more time to, say, learn how to knit or read more books or write more. I have always loved people and have been social, so when I joined Facebook in 2008, I found it was an easy way to check in on people I have not seen in a while, as well as communicate quickly with my family that is spread all over the United States.

But the true dependence didn’t emerge until I became sick in 2010. Facebook quickly turned into a lifeline to the outside world when I was pretty much homebound and unable to work, drive or go out without a wheelchair. It was a way I could still communicate with the people I loved, who loved me back when I was at my lowest. I would receive daily messages from friends and family who knew I was struggling with songs, quotes, pick-me-ups and simple but beautiful messages that were enough to get me through the day when I was feeling extremely lost and scared. Further, I have never been much of a phone person. I think I also get that trait from my Dad. It is nothing against anyone; I have just never been one to chat for hours on the phone.

I love to write. In a way, I prefer to write most of the time. Plus, for me, talking on the phone requires a lot more energy than sending messages or writing comments to people on Facebook, or in an email. And if you have a chronic illness, you know that much of learning to live with it is figuring out how to conserve as much energy as possible. As my blog grew, I started to become Facebook friends with readers who have been living similar stories as mine. These people spoke a language I understood and it was comforting to log on and know there were people out there who understood because they were “walking in similar shoes.” Many of these people have since become good friends.

Such a gift. Facebook has also given me many other opportunities and blessings. Last year, I began planning our fifth Life as a Zebra Foundation, Invisible Illness Benefit Concert through Facebook. It probably would not have happened without social media. I have reconnected with friends from elementary school, gymnastics and my teaching internship. I have even found long-lost cousins through Facebook. Believe it or not, many of my relationships have become stronger because of it and for that, I am forever thankful.

The best thing about this habit is it is one that is often therapeutic, loving and one that allows for rest. I cannot tell you how many times I have had a sick day and have been stuck on the couch, lying down with my feet elevated and my laptop in my lap. In these not so fun times, I have had a way to still “travel” all over the world and “visit” friends and family from all walks of life… I have had a way to still connect. And when one deals with illness, having connections with people becomes so imperative to having a quality of life. Take it from me.

Next year, I will not be giving up FB for Lent. I really don’t need to learn to knit. I am going to continue to “travel” and “visit” friends through social media. And if that habit is wrong, then I don’t want to be right.

This blog post was also published on The Mighty. You can read it here.