Social Media

I have a complicated relationship with social media. I tend to be an open book and share a lot with my friends and I’m a quintessential Libra, looking for that sweet, sweet validation that comes with sharing selfies and updates. But the downside of sharing on social media is seeing everyone else’s shares. While the logical side of me knows that social media is not the whole story, rarely even half the story, of a person’s life, it does not prevent the pangs of envy that come with viewing someone else’s home, vacation, family. Heck, even another person’s outfit can provoke feelings of “My life would be better if I had that.”

When I was first diagnosed in 2019, I found comfort in FB groups for women with breast cancer and reading their stories, following their surgical tips, and sharing in their triumphs. But when I was going through chemo, with the knowledge of my cancer’s high recurrence looming over me, I realized FB was feeding my feelings of sadness, loss, and anger to the point where they were consuming me. Why did Sandy from Ohio not need chemo but I did? Why did Trisha from Texas not lose her hair but I did? My oncologist at the time told me to get off Facebook and in November 2019 with a brief status message asking to still be invited to stuff, I clicked “delete my account.” Then I clicked “Yes, I’m really sure I want to delete my account.” Then I clicked “Yes, I know that means all my data.” Then I got a call from Mark Zuckerberg and I told him yes, for fuck’s sake, I want to delete my account.

I stayed on Instagram and Twitter though — Instagram because my feed was more curated and Twitter because that’s where I get my news (and jokes. Mainly jokes.) On Instagram, I follow friends I actually stay in touch with, rather than being FB friends with girls from HS that I don’t talk to. That means when I go on to Instagram, I mostly know the people whose pictures I was seeing — I know their full stories, so even if they posted a positive slice of their life, I still know what was really going on.

When I was diagnosed with MBC earlier this year, I found a whole community on Instagram of women living with MBC, or thriving as they say, many years after being told “You have an incurable illness.” I messaged a few and soaked up their personal stories, trying to fill myself with inspiration and hope. Seeing women live with this disease for 5, 10, 15 years — that’s what I need to see to keep myself getting out of bed every day, to continue taking the pills that make my knees creak, to push away the dark clouds that sometimes loom over me.

But before the holidays, I found myself feeling worse after checking Instagram. I decided to remove it from home screen, then delete the app from my phone. I thought that would help and it did, a little. But I can still go on Instagram from my laptop and I find myself still doing that a number of times a day. And the news is not always the best. Two women I started following earlier this year, both passed away from MBC. Their stories were not mine — one was triple negative and had beaten the odds by living for seven years. The second was a woman diagnosed around the same time of me whose body did just not respond to any of the treatments her doctor threw at it. She left behind three girls under the age of 10. Seeing us start our journeys around the same time and seeing such disparate outcomes for us was a lot for me to process. I was heartbroken for her, for her family, for the whole MBC community, whose members confront their mortality on a daily basis.

I’m still trying to find a way to navigate the good of social media with the bad. I’m approaching a year anniversary of breaking my leg and there is a part of me already drafting the Instagram post, thanking so many for the support, reminding people that I’m still out there, fighting this fight and not giving up. My sister is raising money for breast cancer research and I’d love to give her a shout out and help her campaign. But I’m not sure that is the best move for me. I’m someone who has to eliminate negative influences cold turkey and I’m not so sure that this half in, half out system I’ve come up with on Instagram is working out so well.

Social media purports to connect us, bring us closer together when we are far apart, a necessity in age of COVID. But for some of us, it makes us feel more alone. Most days, I’m able to remind myself that I’m far from alone in my real life, that I’m surrounded by love and support from my family and friends. But on those bad days, those darker days, I have to work a bit harder to keep that in mind.