Juliet Chenery-Robson
It is estimated that there are at least 250,000 people in the UK suffering with the chronic, disabling illness Myalgic Encephalopathy or ME as it has become known. All types of people at all ages are affected with symptoms that include severe and debilitating fatigue, painful muscles and joints, disordered sleep, gastric disturbances, poor memory and concentration, depression, and sometimes even death. Seen, not just as an ‘invisible’ illness as regards its myriad of internal symptoms, ME is also often regarded by the general public and many medics as ‘invisible’ because they do not believe in its existence. The cause is unknown and as yet there is no cure.
When my daughter, Emilia, became ill with ME four years ago I found myself cast as a traveler between two worlds, worlds that are eloquently described by Susan Sontag in her book Illness as Metaphor:
Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.
Residing in the world of the well I felt assuaged with guilt at not being able to offer Emilia any firm answers to her questions as to why she was trapped in the land of the sick: “Why do I feel like this? Why is this happening to me? Why can’t you give me anything to make me better?” So, in search of solutions I trawled the Internet, read medical books and dragged Emilia in front of a plethora of disbelieving doctors, before finally finding direction from a local charity (ME North East) and a tangible diagnosis of ME from an understanding and empathetic consultant. But this is also when I truly discovered what it must be like for residents of the ‘sick’ world, and especially for those who reside in that strange, elusive world of the invisibly sick.
