One of the most significant effects of long-term illness is the way in which it alters the sufferer’s perspective.
For the first nineteen years of my life, I was a perfectly healthy young person. Nothing out of the ordinary struck me down; the odd bout of flu, an irritating ear infection, a sporadically achy ankle – they were all signs of growing up. At school I was as active as a child can be: I played netball, swam in county championship competitions, ran and jumped on the athletics team, played the violin in three orchestras, entered cooking competitions and attended drama classes. Energy was never an issue.
Then, at the age of twenty and during my second year at university, I developed a chronic condition called M.E. (or Chronic Fatigue Syndrome), an illness that is poorly understood and for which there is no sure-fire treatment. The illness is characterised by a number of persistent symptoms such as nausea, headaches, a sore throat, dizziness, poor cognitive function, muscle pain, light and noise sensitivity and, most commonly, severe fatigue. The exact combination of symptoms is different for each patient and can evolve and transform over time, their severity often fluctuating on a monthly, daily and even hourly basis. One day, for instance, I can function at around 80% the activity of my ‘healthy’ friends, whereas on others I struggle to walk and sit up. There is rarely a pattern and symptoms tend not to be alleviated by rest or diet. The condition has very few outwardly visible signs – this, along with the fact that M.E. is rarely talked about, is perhaps why it has been dubbed ‘the invisible illness’.
It’s been two years since I began to show symptoms of Chronic Fatigue Syndrome. I have learnt how to manage my condition by making the most of the mobility and strength I do have at each moment and choosing what to do with my time accordingly. This post is not a sob-story. It’s just a side-note in a personal tale as diverse and full of twists and turns as any. I want to talk about something my experience of illness has given me, or rather, something it has lead me to discover. When your life is defined largely by your health, your perspective changes drastically.
Before, feeling healthy was the norm. Now, it’s a novelty.
These days, if feeling well, I take genuine pleasure in the seemingly simplest of things (which, as I’ve discovered, are in fact the result of an infinite number of very complex mechanisms). Walking down the street without requiring significant effort is wonderful. Attending a social event and not exerting myself to hold a conversation is the best part of my week. Waking up and feeling calm and fresh is a moment to savour. These are not shallow, fleeting pleasures, but very real, deeply-felt ones, that pass only when the blanket of illness returns. It is not the pleasure of having but of not having; it’s a sensation of something having gone, having moved away, out of the way, like clouds parting and allowing the sky to illuminate a busy city that had been fumbling haphazardly in the darkness. It’s a pleasure of nothingness. There’s no pain, no discomfort, no weight pulling me down. I can breathe. I can move freely. The chains are off and all is light.
What’s more, I used to believe that the people who took pleasure in such ‘common’ things were exaggerating; they were hippies, attention-seekers, frauds. They weren’t really happy – perhaps they were trying to convince themselves as much as they wanted to fool others. To take actual pleasure (to really enjoy, in other words) the mere state of being healthy didn’t seem natural back then. Health had little conscious value in my mind because the impact of its decline hadn’t been felt yet. What I didn’t realise is that good health isn’t a prerequisite for living, nor is it a right based on merit. You can lose it as quickly and unexpectedly as you can lose a watch, or your phone, or a romantic partner, or a grain of rice down the side of the oven.
Poor health comes in many forms, the majority of which I am fortunate enough to have never suffered. I’m certain many people will relate to my experiences of a shifting perspective, whether their own story has to do with disability, mental health or related forms of suffering such as grief. They are all a kind of loss. A change.
What’s important to remember is that, often, whether or not someone is struck down by illness has little to do with action and nothing at all to do with deserving. Most of the time, it comes down to chance. Those who aren’t particularly lucky, like me, learn a few things about wellness. Those who are very lucky tend to learn much less. Those who are far less lucky than I could – I imagine – teach me a thing or two. The oddest thing about it is that the more you’ve felt the sting of ill health, the more you come to appreciate the pleasure of good health. I’ll take that, while I can.
[Featured image: copyright Moyan Brenn]