‘I’ve suffered with ME since I was eight – and the way I’m treated hasn’t changed in 30 years’ | The Independent | 12 May 2016

From The Independent (Voices), 12 May 2016. Words by Jason Reed.

How do you write about living with an illness for almost 30 years without sounding like you’re whining? It’s a tricky job, and despite three decades of experience with it I’m still not confident in speaking of my medical condition. I much prefer to bat away the issue of my health and use smoke and mirrors to mask my reality.

In the late 1980s, when I was aged just eight, I was given the diagnosis of ME – Myalgic Encephalomyelitis. After years of (literally) painstaking tests, the doctors informed my mother with the comment, “There, happy now?”

A simple diagnosis was considered a victory, but even at such a young age I knew I was lumbered with one of the ‘rubbish diseases’.

In 30 years, during which I have completed my education and launched a career, there’s been little in the way of change in my treatment for this severe condition – even less in the manner in which we talk about ME.

Because we have little to no valuable information on the illness, primarily due to a lack of funding for research, sufferers like me are stiff treated as malingerers. It’s positively Victorian in its stigmatisation.

None of us like to be reminded of what can go wrong with the human body, and few are willing to give credence to the notion that a devastating illness like ME can happy to any one of us – it’s always someone else that tires themselves out.

That’s misconception number one: the blue ribbon belief that ME is simply being ‘a bit tired’. I’d describe it rather differently, as having your entire life-force sucked from your soul. It’s as if a joyrider has taken over your body for a spin, only to burn it out and leave you on the side of the road. And the pain that comes with it is pretty much indescribable.

Think I’m getting a little whiney? There are some positives too.

Living with a severe illness, you develop a keen sense of perspective. When you become a spectator on the world, you begin to realise what’s important and what is not. You simply can’t afford to sweat the small stuff when you have a confined existence. When you’re locked in a prison of your body’s devising, fighting a perpetual battle beneath the skin, you soon let the insignificant pass on by.

There’s a theory proposed by suffers of chronic conditions called Spoon Theory, which explains what it’s like to have limited energy reservoirs to spend on living your everyday life. Each morning you start the day with a certain number of spoons in your hand (the number depends on how well you are that day). Every time you complete a task, a spoon is discarded – and when the spoons run out, that’s the end of your day.

Personally, I prefer to use the term ‘mudget’ – my ME budget. We’re all familiar with handling budgets, so it doesn’t take much to grasp how one has to plan, save, distribute, and generally keep a close eye on precious resources.

Want to invite me to your function? Well, I shall have to check my mudget and see if there’s anything in the bank. Only please don’t stop inviting me even though I may have to let you down at the last minute.

I’m often reminded of a Star Wars quote in times of social crisis: “I’m endangering the mission, I shouldn’t have come”. When you don’t fit the common image of disability you often hear the comment, people often tell you “you look so well”. It’s a lovely sentiment but, if you want to use it, lose the note of accusation in your tone.

After such a long time of dealing with a near house-bound condition, I’ve learned not to look at the world with envy but instead with gratitude for the things I am able to achieve, and with a joy for those that are able to do as they wish.

I believe we all have a responsibility to take hold of our lives and do with it as we choose. If you have your health – or some semblance of it – then you have more control over that choice. But even if, like me, your circumstances are conducive to full control of your own destiny (and, frankly, who can boast that?), then do all you can to milk life for everything it’s worth.

Don’t dwell on insignificance, and say yes to everything you possibly can. Just remember to rest well while you’re at it.

Jason Reed is a writer, film producer and podcaster