M.E., Invisibility and Blogging
So often M.E. is invisible. So often people with M.E. look well.
‘You look so well’
‘To look at you, you’d never think anything was wrong’
The frustration of feeling so ill and looking quite well can be demoralising and infuriating. Recently I read the blog post of someone with M.E. who was so desperate to be understood that she wished she could look more ill so that people would realise how ill she felt: so that the face matched the suffering.
There’s the dilemma for people with an invisible illness:
we want to be free of the illness but that option isn’t available;
we want people to recognise our pain and struggle but that’s not necessarily an option because we often don’t look as ill as we feel so we are lumbered with looking quite well, feeling quite awful and needing some way of straddling the line between what we experience and how we are perceived.
Blogging can be a way of reaching out and communicating and offering a helping hand when living in such a paradox. No one can see you and only the words matter. You can be who you want to be, when you want to be.
There seem to be two sorts of blogs written by people with M.E.: those who use the blog to list symptoms, cry out, vent, share progress (or otherwise), politicise, campaign and those who use their blog as an outlet for the person beyond the illness, the person who was there before the illness and is still there despite the illness. Some blogs manage to share the two approaches but by and large most blogs by people with M.E. lean more one way or the other.
When I started my blog it was an outlet for the person I could still remember had been there before ill health wormed its way in like a parasite.
In the first few months of blogging I vowed never to mention my illness:
here was a space that would be M.E. free,
here was where Cusp met the world on Cusp’s own terms and no one could see or know how long it took to put a post together,
the desperate searching for words and phrases,
the pains in body,
the fluctuating levels of anxiety,
the feelings of nausea,
the headache.
Here was a space where I wouldn’t have to worry about standing up, keeping eye contact, smiling in all the right places, keeping up the pretence that everything was OK whilst communicating with someone else., not letting my guard down…not letting myself down.
Eventually, even that space was deemed less than sacred.
The spectre of M.E. infiltrated my blog and I started to hint, started to mention how I was feeling…..physically.
I couldn’t keep up the pretence even in a virtual world anymore than I had been able to keep up the pretence in the real world at work when I was feeling terribly ill but desperately trying to carry on regardless, not give in, not roll over.
Another plan spoilt.
Another dream stolen.
I lost interest.
I abandoned the blog…
in rage,
in frustration,
in despair.
And then after a few months I began to read other blogs written by people with M.E.: blogs that were witty, humorous, thought-provoking
...and sometimes they mentioned M.E. and sometimes they didn’t.
I tried again.
This time I was honest and attempted to get the balance right…between the person behind the malady and the person who has to face up to being lumbered with obstacles, frustrations, difficulties ..like any and everyone else. I didn’t have to hide myself away or hide from my own difficulties but I could express the me that is still here but often hidden and I could communicate and relate to people as if I was still well.
It is much easier to be what I think of as the real me in a virtual world than the real world.
In real life, it’s much harder to be who I really am: the difficulties of getting from A to B, the constant interruptions by ‘that spectre’, the frustrations of trying to maintain family life and hold to my responsibilities as a parent whilst keeping the worst excesses of M.E. at bay, make it hard to maintain flow, hard to maintain the me beneath the illness.
In the blog, I can drift in and out of communicating when energy and space allow: you can see who I want you to see.
Recently I was challenged to reveal my ‘real’ face, my ‘real’ name.
I was perplexed.
Should I reveal the ‘real’ me ?
What would be the point in doing that ?
What would that mean for me ?
Which is the real me ?
Is there a difference between me in the world and me in a virtual world ?
For my readers -- if I might put it so boldly -- there is no ‘real’ or ‘not-real’ name or face because here, here on the Web, I am Cusp and only Cusp.
It’s the only way you know me and it’s who I have chosen to be in this space.
Cusp is a name I chose to represent myself on the Web
Cusp: the me who is unfettered and unhindered by that ‘bastard illness’ as one dear blogging chum once called it.
Cusp’s home: the blog …. the one place I can come to and get some space and peace away from what is supposedly the ‘real’/ real world me because the body who walks about in space and time is not the real me…it’s a diluted version. If I revealed the ‘real’ me then there would be no joy in blogging because I would have no escape from the constant struggles of every day
Cusp: kind of alter-ego but only a kind ..because essentially the Cusp you read about is the essential me and I chose the name specifically because it exemplifies who I am and where I am because, like a lot of people with M.E. I live between two places…
between ambition and practicality,
between hope and realistic expectation,
always living on the periphery,
the edge,
always on the cusp of being able to get somewhere
On the blog, whilst I still have to live real-life me, I can release the hidden me and be closer to who I was in real life because Cusp is a part-remnant from another life,
a former life,
a life when I met more people,
did more things,
felt relaxed about life and what needed to be done
when it was easy to do the smallest things
even the hardest things
and a life where I felt useful and competent and vibrant
Blogging has been a lifeline. It has helped me to feel part of a community again, to feel appreciated and to find lots of other people to appreciate –-- for their kindness, humour, creativity and given me the opportunity to express a part of myself that could easily become submerged beneath the onslaught of ill health.
Blogging brings awareness, self-awareness, awareness of a bigger world, awareness of possibilities ---- a world away from what can be a very confined existence.
Blogging brings freedom.
