A Life Hidden is dedicated to those shut away from the world because of the intense suffering of severe ME (myalgic encephalomyelitis). This site is a collection of my advocacy work, and I hope that it will serve as a resource for anyone wishing to understand more about the illness.
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.
Through my writing, I have become less hidden. I want to use my voice to speak for those who cannot.
Emily Didn’t ‘Only’ Have ME
A year before her death, Emily penned an appeal for greater awareness of ME: “I have been pushed to the greatest extremes of suffering that illness can ever push a person. I have come very close to dying on more than one occasion. If you met me you may well think I was about to die now – it’s like that every single day.” Her life was claimed by an illness that, at its most severe, has been compared to Aids and terminal cancer, yet which is trivialised far too often. Right to the end, Emily had to fight the belief that she “only’’ had ME. Continue reading
Life in Lockdown: What Matters When All Is Lost
In witnessing society’s response to the pandemic, I’ve found myself reliving many difficult memories from my own almost life-long incarceration. It’s been hard to see the world waking up to the implications of isolation, when it has been my reality for so long. Continue reading
The Power of Listening
The experience of being listened to can transform a patient’s life. It can change a medical appointment from something potentially traumatic and damaging into a positive experience. Most critically, it can mean being diagnosed with and treated for the correct illness rather than the wrong one. It can be the difference between suffering being alleviated and pointlessly exacerbated. It is not an exaggeration to say that it can be the difference between life and death. Continue reading
Glimpsing the World: My Joy and Pain
The reminder that there is a world of colour and light and space out there can be a boost to the soul – and also a deep sorrow. Because for each hour I spend outside in sunshine, I have passed a thousand days in great suffering. I have hope of the experience being repeated, but also the knowledge that the darkness can swallow me again at any time. Continue reading
Severe ME Left Me In a World of Pain and Darkness
No terminology exists to describe lives blighted by the severest forms of the illness. Confined to their bed, and often tube-fed, those afflicted are so intolerant of any light or sound that even a whisper can induce a dangerous worsening of symptoms. Pain is usually extreme and unrelieved even by morphine. Paralysis, seizures and incontinence are not uncommon. Continue reading
Voices from the Shadows
Voices from the Shadows is an immensely powerful documentary about severe ME. Filmed and produced by Natalie Boulton and Josh Biggs, it features the stories of five families, including my own. On its release in 2011, Voices from the Shadows received a huge response. Later that year it won an audience award at the Mill Valley film festival. Continue reading
Latest blog post
Musical Alchemy from the Darkness of Suffering – 5th August 2020
The true gift of Kara’s album is its reminder that, despite the suffering and injustice that exists in this world, there is still love. Indeed, the abiding memory of her music is its astonishing beauty. Continue reading