Enduring: Life with Severe ME/CFS is my ongoing self-documentary series, which started in 2024, and tells my story of living with an underfunded serious chronic neuro-immunological illness.
People living with myalgic encephalomyelitis are called the millions missing due to the relentless nature of the disease; we often completely disappear from society. Luck and privilege allows me to document my life living with the severe form of ME. This is usually impossible for most patients. Because of that, I’m able to make what is often hidden, forgotten, and highly stigmatised, visible.
For practical and artistic reasons I decided to document my life in black-and-white. My illness affects all the systems in my body from physical to cognitive, which makes it challenging to take photographs. The lack of colour helps me reduce the cognitive load by having fewer variables that need my control. My current life often feels figuratively and literally colourless, which makes black-and-white photography reflect how I feel.
I originally wanted to document others living with ME, but the systemic neglect and the unforgiving nature of the disease have left me 99% bedbound since 2022. People suffering from the illness are almost always left without adequate medical or financial support; the situation is dire across the world. I felt I had no other choice but to turn the camera on myself – to give meaning to a life not lived, and to raise awareness about this matter no one talks about: ME/CFS, which English journalist, author, and activist George Monbiot describes as the greatest medical scandal of the 21st century.
