I have been wanting to do a post about this topic for a while and have recently thought about posting it as part of my upcoming blogaversary. However on Monday many of us in the spoonie/chronic illness community online were left devastated by the news that a very dear friend had passed away. Non of us had ever met her in person but her influence on us was still profound. It may seem strange to be so deeply affected by the passing of a relative stranger but in the end she wasn't a stranger she had become a friend and a great support.
Irene, was one of the first people I spoke to in the online chronic illness community. It was not long after I started writing my blog and discovering similar blogs, one of which Irene wrote (laughing from my sickbed). She soon became an inspiration to me, having suffered with ME for 38 years and yet she was always in good humour and offering support to others in similar situations. She encouraged me to write my story through my blog, to be brave and tell the world all about this awful illness.
Soon enough though, we started talking about more everyday things, such as television series, learning languages (she was impressed with my attempts to learn Greek) and reading. She was a keen reader, full of recommendations. Even as simple as asking how are you? Good morning/ Good night. Did you sleep well? Simple conversations but when you are often cut off from society through illness hearing these words can make a big difference. A little piece of normality.
Irene said that she was incredibley grateful for the invention of social media as it gave her a social life of sorts again. You may not be able to work, leave the house often, some may only see their carers. However by simply logging on to social media the world becomes that little bit smaller and less lonely. You realise that you are not the only one in that situation, and although that saddens you it also comforts you; that there are people who fully understand what you're going through. That you do not need to explain yourself to and will treat as much more as a normal person than that person with an illness.
Of course we do acknowledge our illnesses because we know that we don't need to censor ourselves with other sufferers. They will not define us as whingers or moaners or 'constanly talking about being ill.' Because sadly they get it. They know that we probably do come across as though all we talk about is being ill, but the difference is we are constanly ill. We're not being hypercondriacts or seeking attention. The moments and I do mean moments, that we are not hyper aware of our illness from the vast array of symptoms vying for our attention are few and far between.
This is why having those 'normal' conversations can make all the difference. Yes, they may be through social media and with people we have never met in person and perhaps won't ever meet in person, but they're an essential part of keeping our mental health in check. Making us feel less alone and forgotten about.
I have a great group of friends now through social media, mostly on Twitter. We talk practically everyday, again asking those everyday questions. When one of us is having a particularly bad day the immediate support and comfort is so heart warming. Likewise, if we're having a good day; everyone is genuinely made up for that person. Nowhere else will you get as much support and cheers for saying "today I managed to get downstairs" or "today, I washed my own hair." Things that sound so small and not at all in the realms of 'normal' success or achievement but can be huge milestones for someone with a chronic illness.
If one of us is quiet, not as active on social media as usual it's heartening to see messages of concern or a simple "I hope you're okay." And okay meaning no worse than usual, not run of the mill okay.
One of the nicest things I've experienced is getting things in the post from my online friends. Little gifts that will make your day, especially if you've beem feeling worse than usual. It's so beautiful to know that although they have limited spoons which are used just to get them through the day, that they have used some of that precious energy to help you. Honestly, the people I have met are so selfless, even though they really need to be, to take care of themselves. Especially when they have taken time and effort to make you something. It makes the gesture all the more special. I have recieved some beautiful handmade jewellery and even some homemade chocolate spoons.
Again, I believe it all comes from that deeper level of understanding. You know just how rubbish you're feeling so can fully relate to others with the same condition. And if they're worse than usual or develop another illness/symptom you are fully sympathetic.
Most importantly, we make eachother laugh. Laughter can be such good medicine. Often we make jokes of ourselves. Things like "I've done so many push ups this morning. It took me 20 just to sit up." Being able to laugh at ourselves can be a good coping stratergy. Sharing a joke and a laugh is just so important for moralle and it amazes me that despite all the rubbish of chronic illness people can still laugh. It shows great strength.
Social media has definitely made the world a smaller place and although I can fully understand the negative associations; the living your life through a screen, the idea of presenting an unrealistic version of yourself and the one I find a particular bugbear: "posting about your life instead of living it." Do you know what I mean? The status updates about "I'm having the best time," when you're thinking "well, if you're really having the time of your life why are you posting about it, rather than LIVING it." I think maybe that's an annoyance that has grown stronger with being chronically ill. That if you could be out there "living" more, you would soak it all up.
So this post is dedicated to all my online friends, my spoonie Brothers and Sisters that brighten my days and inspire me with their kindness and empathy in the face of their own difficulties. Apologies it's turned into rather a long post but honestly there are not enough words to describe these people.
If Irene taught me anything it was the value of friendship and I will honour that by being a good friend and continue to support others on their journeys.
Thank you Irene. Thank you to all my online friends.
If any of you knew Irene @upasbook and would like to honour her I have set up an in memory fund for the charity her family expressed in her obituary CFIDS Associstion of America. You can view it here