A friend with RA & Fibromyalgia messaged me this week to say that although she was at home with her loving family, she felt very tearful and alone.
I started to message her a response, and then realised this sense of distance, of separateness, is only something I’ve really noticed since being diagnosed with and talking to people with a chronic illness.
So why is being Chronically Ill the loneliest thing in the world sometimes? It’s certainly no reflection on anyone’s company, I suspect it’s because we can be talking and laughing, but behind that we are constantly hurting, a never ceasing reminder we’re not the same. We can’t just go on a trip or sit on a stool or wander into the shops. Or even have a simple glass of wine. It’s tough feeling different, so sometimes we do feel completely disconnected from those around us.
I’m so grateful that I was diagnosed with a chronic illness in the days of the information super highway, because with it those of us who feel we are alone actually never are. The isolation is almost immediately eradicated by typing a few words and pressing enter.
Within seconds I can be chatting via IM to friends in the UK, US, Canada and beyond. We can, thanks to the magic of the Internet share thoughts, feelings photos, hopes, dreams and fears. And amazingly lovely, kind, generous people who absolutely get it respond. A cyber hug should never be devalued.
I’m proud to say I’m a small part of the RA community on Twitter. I am honoured to belong to a few groups that will never show up on my Facebook feed because they are private. They are ‘safe’ & loving places to chat with others, compare symptoms, vent, laugh and cry about the daily frustrations of chronic pain, ever changing meds and the annoying variance in advice given by consultants who are supposedly all experts in the same field.
So my immediate support network is made up of my family, my wonderful ‘local’ friends, and a number of very good online friends who I just haven’t met yet. They are all equally important, when I need to reach out, a quick pm or tweet or post and my RA family are there. I’m incredibly grateful for this, because I think our pain separates us somewhat from the ‘norm’.
We live within our minds a lot of the time because we have to.
We lie awake a lot because we have to.
We live slower because we have to.
We appreciate the small stuff more.
We become more observant.
We become more self aware.
And having given this some thought, I believe that as a consequence of these gradual changes we are more self intuitive, so we notice this disconnection that we would never have seen before. It would have been filled up with the busy and the clutter of ‘normal’ lives being lived.
The media makes headlines of how much harder it is to be alone at this place in time, something that is often criticised as overload. And for many running between family, work, friends, parents, school etc there is little space for genuine alone time, quiet contemplation of our place in the world.
But for those of us who spend days in bed, hour on hour alone with pain and fatigue, those who, like me, see 3am far too often (and not for party reasons), there are endless aeons of time to question our value, our worth, our place in this world that measures life and success by income and productivity.
So I am thankful for the wizardry of Sir Tim Berners-Lee & Co, who probably would never have forseen that their Internet would allow those who are vulnerable, and at most risk of becoming disconnected from the world, to not only participate but to form very real and solid friendships with strangers, bound by chronic illness. And that truly is magic.