Chronic Illness: When Social Media is your Social Life

Sakara stands in front of a peach cloudy sunset sky. She looks thoughtful.

It’s February so everyone wants us to buy stuff with hearts on, and it felt like a good moment to talk about how reliant I am on social media as my main form of social contact.

Because, sometimes I forget the world outside these walls exists.

Physical touch? What is it?

[Click above for an audio version of this post read by the author. For regular readers, please note the voice will be louder than usual as I’m experimenting with using my proper microphone!]
Passenger side view of the road ahead, a traffic jam of cars stopped at the lights.

I resent my own community online

Hate to say it (in case you all unfollow me) but disabled influencer posts get on my nerves. Cottagecore reels get on my nerves. “Get dressed with me” videos send my eyes rolling. Those carousels I know you only posted because they get more engagement? Seen it before. Those 3 second reels you call content, because you know they’ll get more plays and make Instagram think you’re onto a winner? I consider myself cheated out of at least 4 seconds of possible enjoyment. Why do I feel this way? Because social media is supposed to be supplementary. It’s supposed to add to our day to day lives, not be our day to day lives. But it’s been my main social scene for a good 6 (six) years now, since I was 15 and started getting to know the chronic illness community online. 

Two cats curled up on a floral bedspread.

I click on these apps and I come away feeling like something is missing. 

I blame it on the changing format of posts and trends over the past few years, but I think it runs deeper than that. I hit those icons looking for connections to other human beings and I enter apps designed for casual entertainment. Instagram can’t hug me. Tiktok can’t laugh at me waving to cars when I cross the road, rather than just putting my hand up to say thanks for waiting. Well I guess I could live stream the event (if I had a thousand followers and unlocked the feature), but I wouldn’t be able to hear anyone laughing. They wouldn’t be pushing my chair, they wouldn’t be there with me.

Selfie of Sakara wearing their mask.

It’s hard to admit our only option isn’t the one we’d choose

It feels disloyal to dis social media. I’m usually the one championing its ability to connect us and reminding people not to trivialise its presence or belittle those who rely on it. So how can I side against myself? How can I be one of those who mock? I’m not. It’s important that we critique the things we’re closest to, the world isn’t all or nothing, good or bad. There is nuance to everything and right now the appendix to “social media has helped me!” is “it’s now hurting”. I feel frustrated and uninspired by a scrolling journey which used to be the highlight of my day. 

Sakara smiles at the camera.

I don’t want to turn away from my best friends, but apps aren’t them. They’re tools I used to meet people I wouldn’t have otherwise found. You don’t wear Vinted, you wear the stuff you buy off it. I don’t love Instagram; I love my friends. There’s a difference.

Road ahead shown from the inside of a car.

It just so happens that, at present, Vinted is the only place I can get trousers, and Instagram is the only way I can connect with my chosen family. 

Blue sky with the moon just visible above fluffy greying clouds.

I don’t have the ability to pick up my friendship group and move it to a nearby park where we can chat and laugh for hours. We’re sick. It’s hard to meet up at the best of times, and unsafe in present circumstances. So, the socials it is. 

Appreciating apps and needing online connections doesn’t revoke our right to yearn for more.

Close up portrait of Sakara looking away.

I want more than this

I do, I’ve found that so hard to admit before. Found it so important to defend my safe space and claim that I’m comfortable as an island, connected to friends via digital streams. It’s been a part of declaring that my life is worthy, that I don’t have to strive to be like the non-disabled to be content.

Photo of a Disabled Parking Only sign.

Yet in dismissing my own need for human contact, I hurt a part of myself that matters. A very human part that deserves to be listened to, disabled or not. We are all allowed to want more than this. 

Disabled Instagram gets on my nerves

Okay I said this was a risky subject, but here is the real reason I’ve not gone into more detail: I’m finding it difficult to assess disabled Instagram and summarise my feelings in a post because I am so ingrained in it. I tried, three (3) times, to write an alternative post to this one, purely focusing this area, but it felt too muddy. Today I realised why. 

A residential street viewed from inside a car.

I was out in the car with my mum (medical appointment, of course! Though I did end up in a music shop afterwards…) and the world looked like something out of a film, a novel, a storybook, an illustration. Somebody else’s world. But this is mine. This is mine? My guts ached with everything I’m missing. The parks edged with rows of houses and shops, the people running to catch up with friends. The coats, the fashion (outside of carousel posts!!), the shopping bags and the student cards around young, stylish necks (man I’m creepy).

I miss every freedom I’ve never had. I long to express myself beyond scribbles on a bedroom wall. I long to relax in the company of friends and breathe in fresh air together and earn money and spend it. I want to decorate a flat and live there and listen to Carole King records and make tea for everybody. I want to go busking on the street and then to the pub and the open mics and then record music with people I love and put it out into the world and sell t-shirts and see somebody wearing one out in the wild and smile and say ‘selfie!!’. And then, sitting in my friend-shared flat with the record player on and the tea in the mugs, I’d post the selfie online. And it would make me smile. And I would scroll my phone for a while.

But not in desperation.

Not all day.

Not because I felt empty, but because I felt full. 

Two cats resting on a floral bedspread.

So it’s hard, when I feel all this, to know where my resentment and sadness ends and where my vaguely impartial critique of the disabled social feed begins. I’m figuring it out though, putting it into words. And you’ll be the first to read them.

Our love is there, The forms of expression are what’s limited

In the month where we’re reminded to shout our love at anyone who’ll listen, it’s okay to yearn for the expressions of love you’re missing. This was a confusing thing to wrap my head around. I’d often feel guilty and berate myself for being ungrateful when I have so much love in my life. And I do. In its abstract form, as an intention, an idea or a message from far away. And I am grateful for all of those things. But that doesn’t mean I have to deny any desire for more. For touch, for voices in the same room, for features in full clarity beyond even the best phone screen. For other people’s homes to feel almost like my own. For comfort in each other’s physical presence. These are things I don’t have. And that is no insult to my apps and no dismissal of my loving friends. These are the facts of our situation. And sometimes, it hurts.

It hurts me a lot.

Sakara looks down, her green scarf blows in the breeze.

I haven’t decided what I’m sharing next month, so stick around for a surprise. Until then, don’t buy anything with hearts on until after the 15th (chocolate tastes just as good in the sale).

Bye for now,

Abstract love

From,

Sakara x

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