THE LIVES WE CANNOT LIVE
M.E and the struggle for acceptance
These are some of the first images from a 3 year project to show the lives of people who live with M.E.
M.E. is a doubly invisible illness: not only are symptoms hard to see but the disease attracts little understanding from the public or the medical profession. This leads to people with M.E. experiencing prejudice and disbelief, making them feel stigmatised and isolated.
This project aims to bring identity and visibility to the community, demonstrating the range of people who suffer with the disease and the often devastating impact it has on their lives.
I suffer with M.E. myself and sharing the lived experience of my sitters has enabled me to build relationships and gain access that may not be possible for other photographers.
Over the last 3 years, I’ve photographed with 50 people, each of whom has made a huge effort to help, often knowing that my visit – no matter how short – will exacerbate their symtoms or make them feel worse for several days. I’m deeply grateful for their participation.
The full project will be exhibited later this year – at a gallery in London – and will also be published as a book. A small selection has also been published by the Wellcome Foundation here.
These images were shot on a panoramic camera, using medium format film, and the aim was to show the rooms that people are often confined to. For most people, the home is a refuge, a place of comfort and safety, but for people with M.E, it can be a place of confinement; people have described it as like being in a cell, a care home or even a prison.