The tightrope of long-term illness

I'm currently reading The Mind's Eye by neurologist Oliver Sacks. Like all his books, it's a fascinating exploration of the workings of the human brain, and the implications for everyday life and functioning if there are problems with a part of it.

One passage has particularly struck home to me. Sacks is discussing how long-term conditions can vary from day to day, hour to hour or even minute to minute. He says (on page 29 of my hardback copy):

"...such fluctuations are typical of any neural system that has sustained damage, irrespective of the cause. [...] There is less reserve, less redundancy, when a system is damaged, and it is more easily thrown off by adventitious factors such as fatigue, stress, medications or infections. Such damaged systems are also prone to spontaneous fluctuations..."

When I'm trying to explain how fragile my health is, and how insecure I can feel, I sometimes use the analogy of walking on a tightrope.

Someone who is fully fit and able-bodied is walking along the pavement. A tiny stressful occurrence - physical or psychological - isn't going to affect them. They'll hardly notice it, because their feet are planted firmly and they're well-balanced.

Not so for me. The same stressor will make me wobble on my tightrope. Sometimes I wobble so much I fall right off the rope, and sometimes I manage - eventually - to recover my balance. But even when I look like I'm walking confidently along, I have to pay constant attention to anything that could possibly make me fall.

It is these variations in health, and the continuous, unrelenting risk that some apparently minor event could throw me off my balance and make me ill, that are not accounted for by the Work Capability Assessments (WCA) being introduced for people who are claiming Employment and Support Allowance, due to being too ill to work.

The WCA is a blunt instrument which claims to be able to measure very, very precise things. It takes no account of variability in conditions - it is a snapshot of the person's condition on the day of their assessment. It takes no account of pain or fatigue. I may (for instance) be able on one particular day to kneel and get up again (and would therefore get no points in that particular section), but it would cause me a lot of pain, and I wouldn't be able to repeat the movement because I would be exhausted.

Many, many negative reports have come back from the pilot of the WCA, but it appears that the government intends to roll it out to the rest of the country anyway. Nobody denies that there are people who scam the system, but the WCA is manifestly not fit for purpose, and will undoubtedly cause financial hardship and severe psychological stress to many vulnerable people.

The Broken of Britain, a politically neutral group, is working to provide a voice for disabled people in the face of these unfair reforms. I urge you to support them.