Social media for spoonie survivalists

I had a couple of twitter conversations with online spoonie friends recently where we had a bit of a mutual love-in. We shared our appreciation for each other and emphasised the support provided by this odd international community of chronic illness survivalists. I said that it would be amazing if we could actually meet up in real life and just spend time chatting. There was much agreement.

Community is important in any walk of life. People need each other and I think we evolved in a way whereby the individual could only thrive when part of a group.

Going back to the time of hunter gatherers and then into periods of agriculture and modernity, there has always been an emphasis on mutual community, co-operation and shared ritual.

I was recently reading about the ancient cave paintings in the South of France which were discovered in the past few years. These paintings are high up on the ceiling, so, very difficult to reach. There are hundreds of paintings which are thought to have been created between 90 and 30 thousand years ago. It’s not clear why people squeezed through tunnels in the dark and painted these images of animals, birds and people by flame light. Why go to the bother when you need to eat and clothe yourself as a priority? Estimations include prayers to the spirits, initiation ceremonies and initial indications of the human proclivity to create art. There was though something in the human drive for communal ritual. I think this is somehow innate in the human spirit.

Since I became ill 18 months ago, social media and Twitter in particular has become a vital part of my life. As increasingly I’ve lost friends and colleagues in the physical space, I’ve gained important friends online who understand the Chronic illness way. While the hunter-gatherers of prehistoric times depended on each other for survival, I think we spoonies do depend on each other for mutual encouragement and empathy. I know my journey would have been so much tougher without the amazing friends I’ve made and communities I’ve become a part of. I feel honoured to have been welcomed into these spaces.

One person commented during our discussion about online support, how they didn’t know how people coped with chronic illness before social media. I do. As an adolescent with ME for 7 years in the 90s (prior to recovering in my late teens), one of the biggest issues was isolation. It was compounded for me due to living on a farm, miles from civilisation so mates couldn’t just pop in on the way home from school. I became involved in a support group for young people with ME, initially as part of the ME Association. Things were well organised, but we mostly depended on the postman. We had pen pals and the pen pal section of the group’s magazine was full of young people looking to connect with other young people. As one of the few lads who enjoyed letter writing I ended up with quite a few female pen pals! I had pen pals from the North East, Scotland, Wales, London and the Midlands. One of my friends used to even make her own perfumed paper which she used to write on! These connections were so important, especially when we all shared the social stigma of having an illness which was either unknown or largely disbelieved.

Years later, I was able to regularly visit my friend in London as my energy levels increased. After I recovered and moved to the Midlands with my wife, we ended up living near my former pen pal there and my wife and I were honoured to be asked to be Godparents to her son. He’s now 17 and I feel I’ve been a rubbish Godparent!

Back in the mid 90s when all this paper based activity was going on, we were only just getting to grips with the Internet and dial up modems. If you were on the Internet, no one else could use the phone, and rural Internet was terrible, so mostly limited to emails, and we were just getting our heads around that! We could support each other via email, you just might have to wait until your mum was off the phone, and then check back later to see if your friend had responded to your message!

Considering how technology has evolved, while I have real concerns about data protection and the practices of Facebook in particular, our online platforms are so important and I’m so grateful for our spoonie communities, for podcasts and those who are have enough guts to share their lives on you tube.

I think the one thing that really stands out about Twitter is the immediacy of the support there. I recently tweeted that I ‘Fing hated ME’. I don’t usually feel that peeved as it’s not a healthy state to be in all the time, but right then I needed to get it out there. It was amazing how much this resonated with others and there seemed to be this communal release valve which activated as people commented on how, while we all do often put on a brave face, it’s good and healthy to share our frustration and hatred towards our illnesses.

I’m not sure that social media can truly replace the need for friendship and association which comes through face to face interactions and I think we can have thousands of online friends and still be lonely, so it’s important to reach out to local groups and friends if possible.

In the meantime, let’s continue to make our online communities amazing. Let’s be welcoming. Let’s get our paint brushes out and paint our cave ceilings together to let others know that they’re not alone, and to create something for future generations to know we were here.

What do you appreciate about online support? Are there things that organisations can do to improve opportunities for connection? Let me know in the comments!

Living in a caravan over the winter, we needed to scrape snow and ice off the Internet extender box to be able to tweet and interact with the outside world!

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