There's an odd permeation of feeling that happens when illness creeps into a life. It's a strange feeling to understand, both from within the illness and outside of it, but it's an even stranger undertaking to try and articulate that change. I suppose it's a universal sensation that everyone will grasp eventually, but not everyone sees from within it at the same time.
Chronic illness is strange and it's insidious. It comes, most often, via a series of small but noticeable changes in 'normal' ability. In my head so often now, I think of it as waves gradually weakening a rock face, until a house that was once secure on the land starts to move closer to the edge imperceptibly - and then one sudden day you find it inexplicably on the brink of being washed away.
My own illness crept up slowly, over a period of many months which are now entering into years. The changes initially were so slight that I barely registered them. Aching muscles meant too much work at the pub. Extreme tiredness was due to two jobs worked in tandem. Blurred vision was a change in glasses prescription, and tremors in my hands were no doubt a side-effect of too little sleep and too much fast food.
Needless to say, my excuses, like the excuses of many who find themselves suffering from long-term poor health, fell on the deaf ears of my ever-growing collection of diagnoses. So far I've added ataxia, multiple migraine variants, vestibular nerve damage from an as-yet unknown cause, and ME to my list of unwished-for gifts. The unknown cause is still yet to be added, so we'll just have to see what the winter months of giving bring there.
But that creeping permeation of feeling doesn't belong to a list of diagnoses; it belongs to the illnesses themselves. That feeling I've been struggling so hard to place is a sudden reimagining of my inner life. You know the one, surely? That leap of imagination that happens when you're alone and a favourite song begins to play, and in a flash of happy anticipation you imagine yourself, years from now, listening to that same song and smiling.
In my head when those particular moments happened, I'd always imagined myself dancing in a room filled with friends. I've never been a good dancer, which is why our inner lives bring us so much happiness; it's the thought of scenarios that won't necessarily ever come true, but are still in some way possible. These flights into the future reassure us that there's happiness still to come, and that it may very well be in the form we want it to be.
This changes after a period of time spent ill. For some people I suppose the change must come quickly - a cancer diagnosis certainly shrouds the future in more doubt than an ME diagnosis, for example. For some it may take years of being unwell for that picture to change. For me, I'd say it's taken around 9 months to recognise the birth of a different inner reverie.
When I think about the future now, I've stopped thinking about myself dancing. I still see myself there in a room filled with friends, but while they dance as they did before, I sit on a worktop, smiling in a nostalgic sort of way for the energy that I used to have, and the person that I used to be. This change in my inner life to match my outer reality is jarring.
I think for people who experience chronic illness this feeling must be universal. Whether it stems from physical or mental un-wellness, the picture of the future has to change. At the moment, that uprooting of the way I think about myself is deeply unsettling. But I think the worst thing for anyone with poor health to do is to fear that change.
I'm lucky that in my head, even in my darker moments, the person I see in the future is smiling. A little sadly, it's true, but she is smiling. When I imagine her now I hope for better for her, and I think that is the only reimagining anyone, be they ill or well, can count on: the hope and belief that something in the future will be better than it is now.
For now, I choose to reimagine her being happy. But I don't choose to delude myself that she'll be the same person I used to picture dancing. She might be, but I doubt it. And if she is? Well, that will be a surprise I'll be very happy to accept, one day in the future when my friends are dancing.
For people struggling to come to terms with chronic illness, visit Mind for help and support.