An ongoing part of living with chronic illness, for me, is struggling with a seemingly never-ending dissonance – both psychological and physical. From my reading, I know I am not alone in this.
The dissonance is both an internal and external discomfort. In my head, I feel like the fully functioning being I was for most of my life and I am still taken aback when it becomes clear to me that I am not. Externally, feeling like my pre-illness self, I expect to get the same responses from others as I used to and I do not.
To non-ill, able-bodied people, this seems weird. They imagine that those with long-term illnesses ‘get used’ to their differences and deficits … and we do, at the level of pragmatic adaptation, though, even then, to varying degrees.
But, for many of us, feeling and being treated ‘differently’ from how we once were remains shocking. Oh, not in a hands-in-the-air virginal shocking manner but in a we don’t get used to it, we don’t like it and it jars kind of way – like a permanent screeching of chalk on a blackboard. It creates an irritating dissonance within us and about us. The following words were my first on this topic, posted on my original Stiletto Wheels blog:
I struggle with an uncomfortable dissonance between my mind and body every minute of every day. You might imagine that, eventually, you would accept huge physical changes. And, there is a level of pragmatic acceptance. With some angst, some help and some time (oh, and a lot of money as disability is a very expensive business), I have been able to engineer solutions to most physical difficulties.
Psychologically, it is a much more difficult and disconcerting adjustment. I have to deal with both my own, and others, perceptions regarding wheelchair users and disability – a very potent confluence of assumption and expectation.
Let me state the obvious – in our society, people respond very differently to good looking, independent, blue eyed, blondes than they do to fat, red faced, wheelchair bound, blue eyed blondes…and few bother to hide it. Speaking from experience, it’s a lot more fun as the former!
I totally continue to visualise myself as I used to look – I get a shock when I look into a mirror and do not see myself looking back. I am continually surprised and incredibly upset at my invisibility to others. I am just not used to it. Perhaps this is what happens as we age but to be thrust into it some decades too early is shocking.
Alongside this, I encounter the ludicrously low expectations of quality of life for the wheelchair user from almost every quarter. I am amazed, amused and incredulous at the patronising comments, the rudeness, the lack of physical accessibility and the surprise expressed when I do not conform to the perceived stereotype of helpless, hopeless cripple.
I expect so much more. I am perplexed at being barred from so much of the life I used to lead. I am unable to comprehend why people think I am ‘lucky’ to live a life of the quality that I consider normal!
Hence, the dissonance – I am sensitive, prickly, uncomfortable and extremely fed up at losing so much of my life to illness and disability; others think I am lucky to have all I have and amazed at my life…given my ‘difficulties’. Something of a mismatch in almost every communication situation!
In addition to all of this, is the ‘aloneness’ of it all – not isolation, not loneliness – just being alone in your world; set apart from contemporaries in this one crucial respect. Chronic illness presses down upon us in a unique way – the absolute constraints, ugly realities, permanent responsibilities. It is grinding and never ending.
Oddly, as time passes, psychologically, it becomes even harder. As others think that we ‘get used’ to it, we chafe more and more against our constraints, EaZyD more than me. We crave ease and spontaneity and free access to life. How do we accept the limits entailed by my illness without complaint?
Not easily. We keep looking and trying to make it better. We demand the same from others. Sometimes, we succeed.