Instagram Is Not my Real Life: The Trouble with Chronic Illness & Social Media

May 28, 2016

Instagram is not my real life.

I know, I know. You're all shocked to hear this. You mean my life isn't contained in those pixelated images on my Instagram feed?

No, it is not. (Though I will admit I spend a ton of time living vicariously on the internet due in part to my chronic illness, but I digress.)

When I first heard about Instagram, it seemed tailor-made for me. I've always loved taking pictures (my embarrassing photography blog from 2011 will back me up on this). To have an app where I could easily share photos with my friends--an app made only to share photos, no less--was a big deal.

So as soon as I got a mobile device in 2014, one of the first things I did was get an Instagram account.

This is one of the first Instagram photos I ever took. Yes, it looks like I was on an epic quest, but I was actually on the way home from my OBGYN.

My Instagram photos are often of the people and places in my life. And I really like them! I love sharing them with everyone! I love looking back on the memories. It's become a really beautiful collage of the highlights of my life.

But that's just it: it's just the highlights.

It doesn't show the reality of living with my illness(es).

When I have a headache, you can bet that I will probably not be posting on Instagram. I will be laying down with my eyes closed.

(Except for this one Instagram photo where I was icing my head and had to document how glamorous I looked.)

When I post a picture of something fun I did, you can bet that I probably went home and had some repercussions--whether it's pain, fatigue, or a migraine (oh joy).

This picture is lovely, but in order to get closer to the ocean, I had to go up and down a staircase of death.

When you sense very strongly that a photo of mine was taken through a car window, it's 99.9% likely that it was because my hips suck and get mad at me when I walk (it's a personal problem between me and them; don't worry, we're trying to work it out).

(*Train voice* This is not a drive byyyyyy...)

When I post a picture of the same exact tree, you can bet I didn't have energy to get out that day and was just trying to appreciate the beauty I could see from my window.

When I post the 400th picture of my cat or my dog, well... that has literally nothing to do with my chronic illness. I just love my animals.

Despite my chronic pain, I still have so many good moments, and I'm grateful Instagram is a place to share them. However, it is just a limited view into my human existence. A lot of it falls between the cracks in the midst of all the shiny pictures of scenery and animals (oh, and the selfies, most of which I actually prepare for and only take on my "good" days).

So posed, such wow.

Vulnerability is something that I am still learning, and being open and honest on Instagram (and all social media) is something I hope to improve on in the future (even though it's TERRIFYING AS HECK). However, no matter how "vulnerable" or "authentic" we may be, not everything will transfer from our real life to the screen, though we may try really hard. It's simply not possible to show every single moment of your life on the internet.

This is why comparing our Instagram account to someone else's isn't a good idea. (I'm preaching to the choir here, by the way.) It's a trap anyone can fall into, chronic illness or not, and it's a dangerous one. The world of social media is amazing, but so much can happen behind the screen that we don't know about. Assuming that someone's life is perfect, spoonie or not-spoonie, isn't advisable. It will just lead to heartache.

So, if you find yourself comparing your Instagram feed to your best friend's or you feel bad for posting the same tree for the 5th time, just remember: there's a life beyond Instagram that all of us are living. Post all the photos you'd like. Be as vulnerable or as vague as you'd like to be. Do whatever you want! Just remember: Instagram is not your real life, and it doesn't define you. After all, your amazing, messy, wonderful, flawed, spectacular humanity cannot be contained in a measly cell phone app.

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  1. Replies
    1. Thanks so much for reading, Meghan! Glad it resonated with you. ♥

  2. Wow, this was very moving. Even though I don't have chronic illness, it's still important to remember there's more to the story than just what a picture or a tweet or a facebook post says/shows. Thank you for that reminder.

    Also: I love the photos you take and post on Instagram. :)

    1. Of course--thank you for reading and for the compliment! I really appreciate you taking the time out of your day to read and comment. ♥ Thank you so much.