By Cassandra Umbiraco
Let’s be honest – social media has its ups, its downs and its downright uglies. I’m a big believer that when used incorrectly or too often, social media causes depression, sadness, jealousy and resentment. There is no such thing as mindless scrolling – we take in every image we see and caption we read. The social space is a place where you can find support and love, hatred and ignorance. But, when used correctly, I think it helps with the cancer experience to both provide knowledge and connect people.
I delayed my reveal on social media until about three months after my diagnosis. During that time, I was busy either prepping for surgery, recovering from surgery, having chemo or healing after chemo. I was nervous about bumping into people in public because then they would know I was sick and word would inevitably spread. If I could, I wanted to have control over word getting out. Although at that point, a ton of people already knew.
After I posted on Facebook, the outpouring of love and support I received was (once again) humbling. I spoke out about my diagnosis more for breast screening awareness than anything else. But the kind comments and supportive messages gave me hope nonetheless.
I also experienced the ugly side effect of sharing the news. I received several messages from acquaintances (even people who I didn’t have as “friends” and heard through the grapevine) who made my diagnosis about them by drudging up the past. I’m not sure what motivated them to get in touch and ask to talk to me about our relationship or lack thereof. Perhaps guilt? Who knows. And really, who cares? Regardless of their intentions, I declined. Not out of anger or hatred – quite the opposite. I had closed those chapters in my life and was indifferent. I had no desire to rehash the past or receive guilt-fuelled sympathy.
Perhaps the learning here is to remove anyone from social media who you wouldn’t reply to. #nationalunfriendday
I knew immediately after I was diagnosed that it would be impossible for my mother and I to keep family and friends up-to-date on my health – many (!) people wanted to be kept in the loop and that fact is still humbling. Luckily, a friend recommended a website – CaringBridge. The site works much like a blog, only it’s private and friends and family have to be invited to view it. This was a perfect solution for me, since we shared extremely personal information and I wasn’t ready to share those details with the world. Friends could comment and leave messages, which boosted my mood on numerous occasions. I can’t recommend this site enough! If you or someone you know could benefit, check it out at www.CaringBridge.org
I’ve blogged about this campaign before but I will say that to me, the #NoHairSelfie campaign represents the worst part of social media and cancer. Although I’m sure it was created with the best intentions, I still can’t get over the images of enthusiastic faux bald people. Losing your hair is a slow and devastating process – quite the opposite experience of “removing” your hair in an app.
My thoughts from my original blog still stand…
Instead of posting your ridiculous “bald” picture:
- Reach out to someone you know who has cancer (or their family) and find out how you can make their life a bit easier. (Home cooked meals? A ride to chemo? Going to the hospital with them for appointments or treatment?)
- Volunteer at a cancer centre. (They always need volunteers for a vast amount of tasks.)
- Knit caps and drop them off at cancer centres. (They’re always looking for hats to give to patients.)
- Grow your hair long and donate it to make a beautiful wig.
- Even if you don’t know someone going through cancer treatment, send a prayer out into the universe to those who are.
Rabbit Holes and Resentment
After I finished chemo and returned to real life, I found it difficult to look at people’s posts. It’s like I suddenly saw everything I had missed. I wasn’t cut off from the world during treatment and I partook in “normal” activities, but I realized just how sick I was when I saw the things I had missed out on. I simply didn’t have the stamina to keep up with a regular day. Thankfully, these feelings were short-lived.
One thing I’m very cautious of is not going down the cancer rabbit hole. I follow a few cancer thrivers on Instagram and I find the posts extremely inspiring. On a rare occasion, one post has led to another and then another and suddenly I’m viewing a profile of a young woman who passed away from cancer. She looks like me, she sounds like me, she had hopes and dreams and friends and family and now she’s gone. Even as I write this, I can feel the frenzied pace return. That frantic downward spiral of fear. The cancer rabbit hole is a scary thing – you never know what you’re going to find. Seek out inspiration and find hope or love in the posts you come across, but beware that you don’t trigger a sustained state of panic and fear.
Since joining the Rethink Breast Cancer community, I’ve found support like no other. I’m part of a couple of private groups and consider myself a silent observer. I rarely comment on posts, but I check in and read updates and comments. If I can’t relate, it shows me a new side of things. If I can relate, it reminds me that I’m not alone. And sometimes, that’s all you need. That’s all there is.
Cassandra Umbriaco is a guest blogger for Rethink Breast Cancer. Since being diagnosed with stage two breast cancer at 28 years old, she combines her love of writing with a passion to help women affected by cancer. Check out her blog at cancerunder30.wordpress.com
Cassandra loves travelling as much as she can, dresses that twirl, anything Disney and her little red Fiat – Luna.