Virtual ME sanity

I was having a conversation recently about how isolating ME can be, especially for my severely ill friends, when the person I was speaking to said something that got me pondering:

“Social media must have made life so much more connected for people who are unwell. I can’t imagine the isolation prior to email, computers social media etc. – but maybe we were better at face to face caring….”

I thought about this, I don’t believe that we are significantly worse at face to face caring, based on the number of visitors I used to get when I was ill pre-“web 2.0” (I’m showing my age there!) and how many I get now. Even comparing the number of visitors I got when I lived more than 2km from the majority of my friends, vs now, I get just as many people coming to visit as I did back then… and it’s even the same people.

Because meme makers don’t believe in Lorem Ipsum Lives

This got me thinking about the idea that social media is hurting our face-to-face interactions, and various anti-social-media articles and memes I have seen (ironically) on social media. Back in early 2014 a viral video “look up” was making the rounds, telling people that they were missing out on their lives and human interactions because they were busy looking at their phones. One of my friends shared it, saying he was leaving Facebook because he wanted to focus on real life interactions instead of the online. This annoyed me, and I said so. We both worked at the same university, and I had seen him on campus a number of times over the previous year, as he regularly passed my office while doing his work, yet he had never spoken to or even acknowledged me. I pointed this out, and told him that “looking up” wasn’t the problem, as he wasn’t “looking around”. He listened, to his credit, and made more of an effort – unfortunately the one time I ran into him after that, I was running late for a meeting and couldn’t talk… I no longer work on campus, so we only interact online now. #irony

But “Look up” is just one of many anti-social-media memes. Search for “social media advantages” on google and you’ll get pages of advice on why you should leave social media, and even more about the benefits of advertising on social media, but very little about why social media might be good for you. These memes, videos, and articles all seem to come from a place of privilege; a place that sees social media as an unproductive and wasteful amusement, not an essential lifeline.

Then as I pondered, this came up in my Facebook feed:

I wish people realized that telling people to spend less time on social media is iessentially telling a lot of disabled people to just cut off contact with society and isolate themselves.

It rang so true for me, but it didn’t feel like it said enough. I know how much social media keeps me connected to the world outside my bedroom, but I have also seen social media save lives, quite literally, as friends recognised warning signs and stopped someone’s suicide attempt, as well as the words of love and reassurance that have stopped others from feeling that desperate. I have friends online who I have never met in person, but who are just as important to me, and provide as much social support as any local, ‘face to face’ friend. I have extended family who I discovered, ‘met’, and got to know online before ever meeting them in person.

So I got to (even more) thinking… I am not the only one with a moderate to severe chronic illness who uses Social Media, so how do others feel about it? I put the question to a couple of my online ME groups. Here are a few of the things people had to say about social media. (I have removed all identifying information to protect the anonymity of those who replied)

The internet and Information about ME

Being online has increased the availability of information about ME/CFS, which aids in diagnosis, in management, and in simply understanding the illness.

“If I could have easily googled 10 years before that what was happening to me I could perhaps have gone to the doctor with ideas, instead of the many years of ‘it’s all in your head’.”

“I personally came across tons of useful information for managing my illness from various social media platforms and forums.”

“When I was first diagnosed … there was hardly any info. I had the dial up internet and it took a lot of precious energy to find information on the web. So I basically suffered in silence with the lack of knowledge. Now it’s a different story. I love being able to connect to instantly with my support group to get understanding and ideas. However, I try not to dwell on all the fun things my ‘well’ friends are doing 😊”

Not being alone/finding a community who understands

Being diagnosed with ME can be very isolating. It does not have a high profile, like Cancer, or diabetes, so most people being diagnosed know very little about it and may not know anyone else with it. This can leave them feeling like no-one understand what they are going through. Social media means being able to connect with other people with ME locally and all over the world, and seeing how much we have in common as we live our limited lives. I now have a local network of people with ME who I met online, and now meet semi-regularly in person.

“Oh when I was diagnosed … I felt so alone. I didn’t know groups like this existed and everything I googled sent me into a deep depression about my M.E. “

“Finding out someone else is still awake at 2 am is really nice! You don’t feel so alone!”

Physically unable to socialise any other way

If you can’t leave the house, or your bed, socialising can be very challenging. We are still social animals, even if we can’t walk or stand. For many of us, social media is the only social interaction we can maintain most of the time. It also provides opportunities for isolated people to talk about and process trauma or grief without leaving their safe spaces.

“I often don’t see anyone I know in person (friends, rather than people behind a counter) for a week or even two because I can’t leave the house. I live alone, I don’t have a significant other to talk to, or flatmates, and my neighbours are all kind of creepy. My parents live in [a city 5 hours drive away], and I can’t talk to them about some things anyway. If I didn’t have social spaces online I would literally not talk to any friends for weeks at a time, and my mental health would suffer.
I can’t always manage to leave the house, it’s always a minor victory if I manage it, but I still need social contact. To me the internet is VITAL.”

“I agree that social media is incredibly important. I work [in a sensitive area of student support] with some students who, if it wasn’t for online communication, I’d be the only person they talk to about serious stuff. I get really frustrated when people just write off social media/online communication as a bad, lazy, or anti-social thing. It can be so useful.”

“I joined a whole heap of groups and forums, and soon ignored most of them again, they just weren’t the right fit. But I feel comfortable here and on [another group]. And I expect other people feel more at home in different types of groups. It’s good there is so much choice, which we wouldn’t have without social media.”

Socialising on our own terms/within our own limits

People with ME have to choose their social events carefully and make sure they are worth the energy expenditure. Social media means being able to make face to face or other ‘offline’ interactions more meaningful.

The nature of social media means that online socialising can happen slowly, instead of in real time. I can post a status, tweet, video, or photo, or send a private message through a chat client then go offline to recover from the sensory and mental exertion. Replies may come immediately or more slowly from friends as they see it, but they are received only when I am ready to look at a screen or process written words again. If I am feeling good, this may be effectively ‘real time’ but if I am severely ill, it may be days or weeks. It doesn’t matter because the conversation isn’t dependent on a rapid back and forth. This means I can still have a conversation when my tongue slurs my words, or when even thinking hurts, because there’s not need to respond right at this moment.

“I wasn’t on social media at all until after I turned severe and realised I just couldn’t keep up with everyone face to face, and that even individually by email was too much, and phone was worse. So I caved in and joined [Facebook] and now find it surprisingly useful in making my few face to face meetings more ‘efficient’ for want of a better word. I follow what my healthy friends and family are up to on Facebook so that when one of them visits we can get straight down into a deeper conversation rather than waste precious minutes having to fill each other in on what’s been happening since the last time we met.”

“Social Media allows you to connect at any given moment for as long (or as little) as you can tolerate. Socialising in person if difficult if you have no idea how much energy you have available on the day, resulting in you letting people down or the fear or having to let people down. Its a life line for many particularly the house bound, I can’t imagine how isolating life would be before social media.”

“Leaving the house takes energy I often don’t have any to spare after going to the supermarket or doctors, etc. And it’s helpful to be able to put social activity down when it’s getting too much, vs feeling like I’m being rude and going and sitting in another room.”

“Being house bound and unable to drive, I welcome the chance of some personal contact, when my energy and availability of transport allows.”

It’s not perfect

Of course, social media has its dangers. Some people spoke about the problems of communicating in a purely text format, without the benefits of body language. For others, their main concern was how vulnerable our illness makes us to the growing number of online ‘snake oil salesmen’ touting the latest treatment or ‘cure.’

“I think it can be a double-edged sword. Obviously being able to connect with others with ME is awesome. Conversely, social media, and the internet in general, is rife with pseudoscience and charlatans, which can be particularly dangerous for people with chronic illnesses who may be willing to try damn near anything if it might help them.”

I have seen many of these, and it’s upsetting to see members of my online community throwing away their very limited financial and energy resources on expensive treatments or ‘miracle cures’ that do nothing more than lighten their bank accounts.

You haven’t been forgotten

As I write this, I am missing a 48 hour long party. It’s the biggest party of the year for my social group and people travel for all over the country (and sometimes the world) to attend it. I may make it for a wee while tomorrow night, we’ll see how I go. Being housebound means we miss a lot of those things, and can easily disappear from life to the point that we disappear from people’s consciousness. Sometimes a severely ill person with ME can go weeks without contact from friends and family, seeing only support/care workers every few days.

Personally, I think the most important thing that social media does is give us the opportunity to tell people that we still care about them, even in their absence, and that we know and care that they are still there.

“Thank you for your messages. I can’t tell you how much it means to me that you check up on me every now and then”

Thank you to all my virtual friends who responded with their thoughts. I hope I have been able to represent you fairly and honestly so you can be seen, even in the isolation of chronic illness.


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