'M.E. myself and I' by Anna Redshaw

Hi to anyone who’s ever had to field a question on the topic of social media use whilst being unwell.

I certainly have, always about the fact I post on Instagram “all the time” but a) barely text back, and b) say I’m really ill. I’ve also been told I should save my energy and spend it on something “more worthwhile”.

Take a pew and let’s take a look at this one shall we.

I opened this topic up to the community way back in 2020 (when I say I go at snail’s pace, this is what I mean). Some of the responses I got are:

• Many felt it was the only accessible thing left to them

• Social media eases the monotony and allows for the creation of a safe and accessible world

• It is well worth the energy of feeling a part of the wider world

• That social media has united people who are living the same chronic illness experience

• Scrolling requires far less energy or function than having an in-person visitor, even a video or phone call

• That there is far less judgment online than in-person about chronic illness

• That bright light filters, no sound, and screen brightness adjustments mean that people can make screen time less of an exertion

• It makes us feel seen, when we are so often invisible

• That social media is the only place where many of us can contribute something

• Posting to social media to update everyone at once is less exertion than sending individual text messages. Especially when group messages (like WhatsApp groups) are now so popular

• That it’s vital to do something ‘enjoyable’ like looking at other people’s photos of nature and the outside world

• That finding the online chronic illness community not only changed lives, but saved them. The level of isolation shouldn’t be underestimated

The consensus is that it is usually a lower energy/brain power activity that is stimulating enough to distract us from our realities for a little but, whilst most vitally allowing a connection with others who understand our reality; something that is so needed yet not otherwise available to us.

Of course there are times when we cannot be online. I have friends who have been too severely affected to look at a screen for years now.

For me, social media, and the online community it has provided, has probably been my greatest saviour.

Have you experienced an inability to have a face-to-face conversation with someone else because of the exertion physically speaking takes? No? When you have, we can discuss how online interactions are far more accessible (and how they come with less physical payback).

Social media can be a much needed escape.

“Maybe if you didn’t spend so much time and energy online you’d be able to do other things.”

A perhaps valid observation. And sometimes an accurate one. I do limit my screen time and my online communication a lot. I’ve never been able to respond to comments like I want to be able to do. But I can post pictures with captions that have often been written over several days.

I can’t remember ever telling you how I think you should live your life and spend your time and energy… You have NO idea how you’d choose to live if you were in my shoes. You simply can’t imagine it. So trust that I know what works, what saves my mental health, what brings happiness to my days. I don’t police your energy. Stop policing mine 🧡