Transcript
When we meet someone new, one of the first questions we ask is, What do you do? When we talk to a child, one of the first questions we ask them is, what do you want to be when you grow up? It seems to me that we can be rather focused as a society on what people produce and how we can measure them.
Height, weight, grades, amount earned, job status, as a matter of principle, I'm convinced that this is not right. But in addition, I often reflect on the impact of this on those with chronic illness, and it can curtail their life.
Yesterday a BBC survey suggested 1/4 of the UK population lives in chronic pain. Today is International ME/Chronic Fatigue Syndrome Awareness Day. Now a quarter of a million people in the UK and millions more worldwide suffer this debilitating illness marked by its crippling exhaustion, as well as a myriad of other devastating symptoms.
Sufferers speak of feeling unseen and unheard, being embarrassed to publicly admit to having ME/CFS, feeling guilt to not being able to contribute to the world as fully as they would wish. And grief at what could be achieved if only there was the energy to do it.
Even from a faith perspective, pressure can be felt. Religious texts including the Quran talk about faith and good action, but when there's no energy for action, there can be a crisis of self. A struggling with purpose, when all you can do is sleep. In Islam, The Morning Call to prayer announces prayer is better than sleep, but chronic illness often doesn't leave sufferers with a choice.
With potentially 10s of millions of people worldwide with Long Covid, a disease also marked by chronic fatigue, there is real concern brewing that the frustration, pain and limitations on everyday life so long experienced by the ME/CFS community will take over people's lives in a way we're not ready to manage as a society.
Multiple times in my life, I've been witness to the deeply isolating experience of chronic illness. I've seen how it can strip the sufferer of confidence, purpose and self-worth. Whilst experts search for much needed cures, perhaps we can remember that we are human beings, not human doings, and ultimately before God. It's the character of our hearts which matters, not our job title. The role of the human is to be kind, gentle, and compassionate, including to ourselves.
Sarah Joseph, Writer.