A Balancing Act: Social Media and Chronic Illness
Since being diagnosed with a chronic illness, social media has been a prominent part of my life. Coming from a ‘millennial’ in their early twenties who has been blogging since their mid-teens, and works as a writer and content creator, this might not seem like a shocking revelation. Add in a pandemic - which has seen internet use soar to stay connected during lockdown and pass the time – social media is a vital part of anyone’s life. So, what’s the big deal?
When you receive a chronic illness diagnosis, social media takes on a whole new meaning: feeling less alone and more hopeful.
Life sometimes throws unexpected curveballs at you. When you get diagnosed with a chronic illness, life as you know it changes. For me, my social life and my mental health suffered a lot. I am grateful to have a supportive family who have been on this journey with me.
I couldn’t shake the feeling of isolation, though. I didn’t know anyone else going through the same things as me, and as supportive as my family are, it was hard to talk to them about something they didn’t have an intrinsic understanding of.
Likewise, when you are experiencing the debilitating symptoms of chronic illness (Crohn’s Disease in my case), going out with friends and participating in normal social activities became harder to do. Living with a chronic illness can feel like you are living in lockdown – even when there is no pandemic.
Then came the discovery of the online chronic illness community and the many positive benefits of social media.
I connected with others going through similar experiences to me, joined support groups full of people who could empathise with my situation, and I started to see faces and bodies on social media that were like mine. The best part is that I have access to this even on days when my health is going through a rough period. Social media provides an accessible form of socialising.
People were sharing their tips on how to manage life with a chronic illness and their stories. I also realised that having a chronic illness doesn’t mean your life has to come to an end. Being introduced to the online community made me see how many people from across the world, and from different cultures and lifestyles, live with a chronic health condition and are still out there living a full life.
All of this helps to bring awareness to chronic illness and disability and breaks down the stigma around chronic illness – an ongoing fight in many cases.
It went further than that too. Becoming part of this community helped me to open up and share my journey, and made it easier for me to know how to put my feelings into words.
The pitfalls
For the most part, social media has been - and continues to be - a blessing in my life. But there are darker sides too. Being a part of this community has meant being exposed to tough content.
Whether you follow a social media influencer on Instagram or are part of a Facebook support group, there are distressing posts out there. It could be someone in hospital, having a treatment stop working, or struggling with mental health and everyday life. Seeing content like this, chronic illness or not, is heart-breaking.
When you are living with a chronic illness yourself, the subconscious ‘comparisonitis’ of social media can start to kick in. I have had times when I’ve seen someone’s story and thought “What if that happens to me?”. This in turn can be anxiety-inducing and can have a negative impact on your mental health.
On the other end of the spectrum, seeing someone celebrate their remission or have an exciting opportunity (which is fantastic) feels disheartening if you are struggling with flare-ups. Thoughts start to enter your mind such as “How come they are in remission?” or “Will I ever get to do that?”. Plus, there are the more general negative impacts of social media such as mindless scrolling, trolling, and being exposed to a lot of ‘noise’ that comes with the internet.
Finding a balance
So how do you find a balance and enjoy the positive side of social media without the pitfalls?
Remember that chronic illness is something everyone experiences differently. Our bodies are individual and we are all unique. What works for someone might not work for you and vice versa.
Connect with people in the community, empathise with one another, seek those useful and inspirational content creators and posts, but from a place of knowing that their story is not your story.
Give yourself space away from social media to do things you enjoy off-screen and remember your connection to your surroundings and the people in your life. Know that if something is negatively impacting you, it’s ok to unfollow, block, mute, or leave a group.
Think about what aspects of social media you love and what empowers you. Think about what parts have a darker effect. Use these points to guide you in carving out a positive and safe online space for yourself. I believe it is possible.
By Megan Harrison