Three summers ago, I was laying in a hospital bed in the fourth floor of our local hospital. I slowly try and pull myself up in bed, the new incision in my stomach pulling and causing pain. After I sat up, I hesitantly walked over to the mirror by my bed in a hunched over position, trying not to aggravate my abdomen anymore after having surgery a few days ago. Once I got myself over to the mirror, leaning up against the countertop for balance, I slowly lifted my shirt and caught my first glimpse of the new plastic tube hanging from a hole a few inches above my belly button. Despite having had surgery days ago, I hadn’t braved a look at this tube. I was too afraid and I soon realized why.
The person who’s reflection I saw in the mirror was not one that I recognized. My skin was pale and gaunt and my eyes were encircled by dark bags from the pain-filled sleepless nights of the past 2 months I spent in the hospital. When I smiled, I lacked that sparkle in my eyes that I was known for. However, the biggest shock was looking down at my belly and seeing a fresh stoma with a long tube hanging out of it. I shuddered in disgust. All my memories over the last few days related to this tube were negative ones of pain and sickness and I couldn’t help but feel the same way about it.
These thoughts I had were very isolating thoughts. Having a feeding tube placed as an 18 year old isn’t common. I actually didn’t know anyone of any age who had one. I tried to explain my struggles with spending summer in the hospital, the new life of chronic illness thrust upon me, and how everything in my life was changing, my body included, to my support system. Although I don’t fault anyone and am appreciative for their support, it wasn’t the same. It was hard for other people to imagine themselves in my situation, especially ones who had never experienced sickness. They tried the best they could but I longed for someone who could had had similar experiences to mine and could empathize with what I was going through.
Reflecting on that one day, I decided to type in “chronic illness” on social media, not expecting to find much or anything at all. To my surprise, I found a whole community of people dealing with different chronic illnesses. I even saw some people who had gastroparesis like me! After following a few of them, I decided it would be beneficial for me to make an account where I could talk freely and openly with other people who would get what I was going through. That’s when Green Eggs & Spoons was created.
When I first made the account, it was fairly life changing. I went from being isolated in my illness to finding a whole group of online friends who were walking similar paths to myself. Slowly, I started opening up more and sharing more and, in turn, received more support from others. Anytime I had a question about anything from how to unblock a clogged tube to how to keep myself entertained without expending much energy to discussing our favourite shows for binge-watching on Netflix, I had someone to talk to. It was refreshing to find a community in which the environment was positive, supportive, and understanding all at the same time. I used to describe this community as a “build your own support group” where you could connect with whomever you felt would have a positive impact in your life. Not only did these people guide me through tough times but they even helped me figure out the puzzle of my health issues.
Over time, as I became more accustomed to my illness and living life with a disability, I started posting less and then I distanced myself a bit from the community because something didn’t feel right. I didn’t quite jive with what was going on. I was hearing about things going on in the background of the community such as bullying and I started noticing people leaving very passive aggressive comments on mine and other’s posts with the hopes of “one-upping” other people. That wasn’t what I went there for.
The more the community grew, the more the environment changed. Not everyone changed, there’s lots of great people out there to meet and I maintained (and still maintain) friendships with people I had met. But, it was clear that it was no longer a community for people who wanted to support one another, it became a competition for the title of who was the sickest all while hiding this behind a facade of positivity, making it hard to see. In fact, everyone was always so positive no matter what situation they were in which, in turn, made me feel as though I needed to be the same way: positive all the time. But in reality, most people, even healthy one, aren’t like that constantly.
The front of endless positivity, though a times encouraging, was ultimately dangerous. Although I consider myself a positive person, there has still been tons of times that I’ve felt sad or angry or frustrated. However, I feel like certain situations, I didn’t let myself fully grieve (which is an important process!) because so-and-so on Instagram had it worst than me and they were still happy and positive so shouldn’t I be like that too? Instead of fully letting myself FEEL what I needed to feel, I buried it down inside and rarely shared those feelings with anyone other than my close family. I felt as though, in order to be a role model or help others or be an advocate, that I needed to be secretive about the emotional turmoil I would once in a while experience. Now I know that’s not the case. What you see on a lot of social media isn’t true to life, it’s a carefully curated version of the one they desire to live. It happened often that chronic life became portrayed through rose coloured glasses too.
It also altered my perspective on many things related to chronic illness and how to live with it. The way some people with the similar conditions as me would post about constantly being in and out of hospital, having endless test, procedures, and appointments, made me feel as though I must be less sick then them and that I had no right to feel sorry for myself or throw a pity party. When I felt sad, I often felt that I’m just not trying hard enough to be positive despite feeling as though I had good coping skills. It was the cause of much frustration when I would see how easily people would get the treatment they needed yet I was still here fighting for mine. It made me frustrated with my own life because I was too busy comparing myself to others rather than focusing on what I needed to do for myself.
Because of this and several other reasons, I decided to leave Instagram and change how I share online a few months ago because it was no longer the place for me. I have been working on living in the moment and feeling what I need to feel whether it be happiness or sadness or anything it between. I have a group of amazing friends I have met through the online community who have been great shoulders to lean on. I focus on living and experiencing the world through my own eyes rather than living through social media. And I hope that, as I practice and get better at being mindful, I can be more vulnerable about my feelings because my mental health is important too. People need to know that they’re not alone it their feelings of sadness and fear and isolation. Not everything when you’re chronically ill is sunshine and rainbows. I’ve also learned that sharing everything with a positive twist when I didn’t actually feel so at the time isn’t productive in helping healthy individuals understand our experiences.
Yes, positivity is great and yes, reaching out and connecting with others is a fabulous way to learn to cope with your illness and social media most definitely isn’t all bad. In fact, I’ve met some of my best friends through it! The problem is just the culture that started developing within the community. I don’t want to say not to reach out to others and not to join support groups, I am simply saying that some of those places are no longer a place for me. I don’t want my internet presence to revolve around my illness and I don’t want to be a role model just because I’m positive all the time. I want to be known for more than my illness. I am not fighting anything, I am simply a soul living in an imperfect vessel trying to navigate the world as best as possible just like everyone else.