“The growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.”
– George Eliot, Middlemarch.
This quote, from one of my favourite books, inspired the name of this website. For most of my life, I have been hidden: not only by the severity of my ME, but also as a result of the denial, neglect and even persecution that exists in response to the illness. Mine is not the only life hidden: around the world there are millions like me.
The uniquely disabling nature of ME has prevented generations of sufferers from making ourselves heard. We are an oppressed and marginalised community with no hope of marching the streets in protest. We cannot capture the world’s attention and change history through dramatic acts of campaigning. Very often, merely surviving consumes everything we have.
And yet, in our suffering and isolation, we fight on faithfully. There have been many heroes in our struggle for recognition and understanding. Their names are unknown to the wider world, but their contribution to our cause has been immeasurable. Change is slow, but “that things are not so ill as they might have been” is due to the courage of many individuals around the world, whose commitment and determination have enabled progress to be made, however small. Some lie in literal tombs, their lives lost to the illness they fought so hard to bring to greater attention. Others are entombed in their own beds: alive yet scarcely living. All have given their depleted resources, often at massive personal cost, and laid foundations for others to build on, now and in the future.
In my own work in raising awareness of ME, my greatest inspiration comes from friends and loved ones whose every moment is consumed by the most extreme physical suffering. They are alone and forgotten by the world, but every day demonstrate the most immense courage, simply by continuing their struggle to survive.
A Life Hidden is dedicated to those shut away from the world through the intense suffering of ME; suffering that is compounded by the failure of governments, the medical profession and society to adequately support them.
Through my writing, I have become less hidden. I want to use my voice to speak for those who cannot.