Navigating social media while living with cancer

Navigating social media while living with cancer

By Alex Mandarino

“How can I tell over 400 people that the worst has happened to me when some have a monumental impact on my wellbeing while others have spoken all of five sentences to me?” This thought raced through my mind about an hour after I was diagnosed with acute lymphoblastic leukemia (ALL) at the age of 20. The news itself came with a great deal of weight and it was extremely difficult to hear, let alone repeat 50 times a day.

I picked up my phone and called six of my closest friends and five roommates at university on a group call. I told them all about the events of the past week that lead to the ultimate diagnosis of my cancer. After that, the simple answer of explaining my circumstance was right in front of me: Instagram. I carefully selected a picture of myself from the night before where I was holding up a cancer ribbon and posted it with a caption that briefly explained what my life would consist of for the next two years.


What followed would be the largest outpouring of sentiment and well wishes I had ever received in a span of three days. I was overwhelmed and could barely keep up with the messages and comments, but never once did I regret sharing my story on social media. It gave me a way to express my truth quickly and broadly, and brought with it love and support when I needed it most.

The regret came about two weeks later. I was half way through the “induction” phase of my treatment known as the Dana Farber Protocol, and I literally didn’t have the energy to speak. I was lying on my side, barely able to lift my head, and was using only my finger to point as a means of communication with the nurses and my family. With limited movements, my only source of entertainment was social media. My biggest regret was opening up Instagram. I saw a picture of a bagel, a beach in Southern California, a family sitting under their Christmas tree, a Toronto Maple Leaf hype video, the lush green backdrop of Iceland. Fantastic, everyone else was enjoying life and I was locked up in a hospital bed with no light at the end of the tunnel for a long time. It ate at me and made me feel vulnerable and depressed that I was stuck in limbo.

Those two anecdotes show there are some positive and negative effects of social media as it relates to our lives during cancer. I aim to relay some tips to combat these negative effects as well as enhance the benefits to our own advantage.

Advantage: Connectivity

At the click of a button, you can have access to an entire spectrum of people, cultures, groups, and activities. In their 2019 digital predictions, We Are Social and Hootsuite estimated the number of individuals currently using social media is up to 3.48 billion. That is half of the world’s population. This wealth of connectivity allows us to create communities online and gives us a range of content and criteria to choose from.

It’s easy to talk to other individuals with similar interests by adding them as friends on Facebook, scrolling through pictures on Instagram, or discussing opinions on Reddit. As cancer patients, we can often feel isolated because of our physical limitations in interacting with our loved ones outside of the hospital or our home. Social media provides an outlet to keep in touch with all of our closest friends without having to move a considerable amount while providing a communication outlet and an opportunity to get in touch with other cancer thrivers living very similar realities.

Being unable to interact socially can inhibit us from feeling happy and can cause a great sense of loneliness. Social media interaction bridges that gap and allows us to find the exact community were looking for, whether that be breast cancer awareness groups, finding solutions for steroids pain, or chatting with other parents about the struggles and joys of raising children during cancer treatment.

Tip: Social media gives us cancer thrivers a sense of community that we should take advantage of. Utilize the power of the search bar to look up groups, interests, and activities on any platform to slowly dip your toe in the water and reap the benefits of finding social support at any moment!

Disadvantage: Depression and anxiety

There isn’t necessarily any defined or non-observational study that has accurately proven that social media causes depression, but on a small scale there are a number of effects that have been proven to occur when use of social media becomes addictive: depression, anxiety, poorer sleep quality, lower self-esteem, and inattention.

One study conducted at the University of Pennsylvania used two groups to conclude that there was a casual link between the use of social media and the negative effects on well-being. One group was allowed to carry on their social media activity and usage as normal, where a second test group was limited to 30 minutes of social media access a day. After an initial baseline reading of every participant on social support, fear of missing out, anxiety, self-esteem etc., a second reading of every participant was taken at the end of the trial. Results showed that the test group with limited social media saw both loneliness and depressive symptoms decline.

As young adults living with cancer, we are placed in a vulnerable state, whether intentionally by ourselves or as a result of our current environment. When we scroll through Instagram, Facebook, and Twitter, a tendency comes upon us to compare ourselves to others. This instinct is normal; it’s our human nature. The problem lies in that often times our lives as cancer thrivers can be complex, and we rarely find ourselves feeling better than anyone we see through social media. We envy their health, their ability to be carefree and make decisions for themselves. This causes us more grief, and unnecessary feelings of worthlessness. This puts negative pressure on us, and can affect our mental health.

Tip: Limit your social media intake to 30 minutes a day. This is enough time to connect with friends, catch up on news and current events, and unwind. Additional time after this during a vulnerable state opens up the floodgates for comparison and anxiety.

Advantage: Brand awareness

How often have you opened up Instagram and scrolled through your followers’ pictures and lives, only to come across an ad for shoes or laundry detergent. Companies use social media as a means to promote their brands, why shouldn’t we?! As YACCtivists, the 15 of us use social media to express our opinions, share fundraiser and event information to our community, and post about inspirational ideas, blogs, and podcasts. This allows us to remain relevant and provides us with very open and simple channels to promote our brand.

Whether your brand as a cancer thriver is providing updates on your health or treatment cycle or sharing a big story inside or outside of your cancer life, social media is an excellent way to connect with your audience and share updates to promote whatever comes your way.

Tip: If you have a specific passion or business that follows along the lines of your cancer journey (looking at you Tamara Stoney), posting images and captions on your profile opens up a world of new followers and customers and saves a lot of money in advertising.

Disadvantage: Instills feelings of FOMO

We all wish we could’ve purchased those concert tickets after seeing how exhilarating the show was, or wish we stuck around an hour longer with friends instead of catching the early train home. However, these mild feelings of harmless regret should not engulf us for hours every day. This phenomenon is called FOMO (fear of missing out) and is commonly caused by the distortion of the reality of other people’s lives by scrolling through social media. We often only see the highlights of an individual’s life, and we perceive their lives to be much better than ours, even though we don’t catch a glimpse of the mundane moments that are not portrayed.

Everyone who participates in social media goes through this at some point. Every Saturday night isn’t always the time of our lives. As cancer thrivers, our lives are currently being pre-occupied by physical and mental trauma, oncology visits, chemotherapy and blood work, and we don’t get a chance to live the lives we would like to. When we engage with our social media platforms, our mental health is at risk because we perceive everyone else’s lives to be better than ours and it can make us feel worse about our own endeavours.

Tip: Avoid social media altogether at our lowest points. We need to prioritize our mental well-being. Take time for yourself, find little nuances to enjoy, and partake in social media only when you feel ready to be open.

Advantage: Keeping up to date on current events

Gone are the days when our one and only source of information on current events fell in the hands of the local paper boy and your hopes of getting the newspaper delivered to your doorstep and not the bushes. Today, opening up our social media platforms presents a wealth of information on upcoming participatory events, group activities, local news, celebrity gossip, clothing sales, and more. Instagram’s discover page customizes a series of posts to the user based on followed accounts and recent activity so we have a bundle of stories hand-delivered to us as soon as we open the app. Facebook has articles and stories pasted all over our news feed which makes it a great outlet to learn about new topics and catch up on what is happening around us.

For those living with cancer, social media keeps us in the know of the world around us without having to utilize much effort. Our social connectivity is limited based on a number of circumstances and we normally are unable to gain a lot of information through word of mouth. Even when I was able to connect with friends and family, a lot of conversation was eaten up by my treatment or lifestyle and rarely on who won best director at the Oscars.

Tip: Start following accounts outside of your social group that will provide you with content that you may enjoy or will help foster growth. I started following @nutrition and @apexhealthy on Instagram. Both accounts have a mission to broadcast food and fitness knowledge and scientific information and tips to live a healthier lifestyle. I followed these accounts recently, years after remission, and they’ve given me a lot of fun recipes to choose from to lose weight and gain energy. Imagine what my discover page would look like if I followed this trend through treatment!

Disadvantage: Body image perceptions

My research into social media has found a lot of studies connecting social media engagement with body dissatisfaction. Chemotherapy, radiation, and surgeries can drastically affect our perception of how we look as cancer patients.

I found myself perpetually anxious about how I looked because I was very aware that my face was bloated from the steroids and the fact that I had lost 50 pounds in two weeks during the first quarter of my treatment. Scrolling through advertised pictures of models or obsessing over old photos of how I used to look pre-diagnosis added another layer of dissatisfaction and misery. If not managed well, that behaviour can have a negative affect on how we perceive ourselves.

At the end of the day, it’s important to be able to look at ourselves in the mirror and say “I love my body.” It was difficult to come to that realization throughout my treatment as I looked drastically different than I did before. To avoid feeling ashamed, I tried to avoid popular celebrity pages or fitness images; I knew they would have an adverse affect on me because of the simple fact that I wasn’t able to work out.

I avoided posting any pictures of myself because I was afraid of what the reaction might be, or worse, the fact that there might be no reaction at all! This was just one tactic that helped me cope. I am aware that I was closing myself off from portraying who I was, but I wasn’t ready to love my body yet. And that is okay. There is always going to be a time where maybe we aren’t happy with the way we look or feel. It’s important to know how to respond.

Tip: Avoid images that will cause you to compare yourself to others, and focus on loving who you are as a human before trying to garner satisfaction from others around you.

Overall, social media can be a complex activity to navigate, but if approached properly, it can really benefit us cancer thrivers and provide us with an easily accessible outlet to connect with others and share our stories. Whether you actively post or are more of a quiet observer, there are a lot of opportunities to succeed in promoting positivity in your own life through your channels. Moderate your usage to suit you and the sky is the limit.


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