My Love-Hate Relationship with Social Media
Last updated: March 2023
I’ve had a love–hate relationship with social media throughout the years.
With social media, I was a late bloomer. I remember all my friends and even my mother-in-law singing the praises of this thing called Facebook for many years. I thought the notion was silly. Why would I want to share photos and things I was doing with the world? If I wanted others to see pictures of my then young kids, I could just email or print off pictures and mail them (yes, I was still doing this).
Therefore, it wasn’t until I bought my first smartphone in late 2012 that I joined the social media club. My first post drew many comments from friends like "Welcome to the 21st century" or "It is about time!" Shortly afterward, I set up an Instagram account, too.
Since then, I found it was a great way to connect with others from the past. I enjoy seeing what friends are up to and found it to be an incredibly easy tool to share what was going on in my life. I also, admittedly, still get an adrenaline rush with the likes and positive comments.
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In 2016, with back-to-back diagnoses of both a rare blood cancer called polycythemia vera (PV) and invasive ductal carcinoma (breast cancer) my social media perspective changed. I didn’t want to share what was going on with me personally. I was uncomfortable relaying things I was facing in my cancer journey. Mostly because I didn’t want pity from friends and family.
I posted nothing about my cancer challenges. Despite this, it didn’t take long before word spread, and I started getting sympathy comments about my cancers from well-meaning Facebook friends. It wasn’t until after I finished my breast cancer chemo that I posted anything myself; triumphant photos of me ringing the bell with my matching red t-shirt and bandana. My account blew up with positive and motivating comments. I felt like a celebrity of sorts!
The next time social media came into play was doing research on PV - this cancer I had never heard of before diagnosis. Since polycythemia was rare, I knew absolutely no one who had it. I felt so alone and had so many questions. I noticed there were Facebook groups, so immediately joined a couple. It was amazing and reassuring. There were others out there just like me!
However, it was like drinking out of a firehose with all the comments and concerns. To be honest, it was a bit terrifying reading potential complications, symptoms and side effects. Could all these things happen to me? At some point, I backed off, so I didn’t stress myself out.
Opening up doors
Thanks to social media, a good deal of cancer-related doors opened for me. I found out about a cancer writing conference through Curtain Up Cancer Foundation on Facebook. I attended and wrote a story about my cancer experiences. A few months later, I saw an online journal called Blood-Cancer.com was looking for stories about cancer. So, I took the story I wrote at the workshop and submitted it. Three years later, I’m still writing and sharing stories for Blood-Cancer.com and use social media in a cancer advocate role. I love all the connections with others affected by cancer I’ve made.
My use of social media has diminished in recent years. This is mostly due to an overload of memes, political opinions and other things that take away from what drew me into it to begin with. Still, I know I’ll still be on social media and continue my love-hate relationship with it.
What blood cancer were you diagnosed with?