Ordinarily, illness is measured in days or weeks; and for the unfortunate months or even years. Then there are those of us for whom illness, pain and suffering is measured in decades. This is my twenty-fifth year of being ill: a quarter of a century spent mostly in housebound, bed-bound isolation.
I have had ME since the age of twelve, after catching a routine virus from which I never recovered. Within months I was unable to move, speak or open my eyes. I had to be spoonfed. Constant, agonising headaches forced me to lie in a dark and silent room. I was so ill that my family and doctor feared I could die at any moment.
ME affects around 250,000 people in the UK, with 25% so severely affected that they are house or bed bound. It is now widely recognised as a neurological condition although some doctors still mistakenly believe the cause to be psychological, or that it can be cured by exercise. ME involves every bodily system and symptoms include flu-like malaise, severe pain, muscle weakness, cognitive dysfunction and acute sensitivity to sensory stimulation.
After spending my early teenage years in a death-like state, I began to slowly improve. At 37, I remain in a wheelchair most of the time and dependent on full-time care from my mother, now 63, but I consider myself fortunate. If you met me during a better spell in the day, you might not realise there was much wrong with me. You wouldn’t see the collapse into bed afterwards; the desperate need to lie in silence to prevent an escalation of symptoms such as pain, muscle jerking and vomiting.
In the twenty-five years of my illness I have watched my peers become teenagers and then adults. My journey to maturity has been marked by very different rites of passage: I have had to learn to feed myself again, to speak, to sit up. I have had to re-build self-belief from the shattering effects of having a misunderstood illness. It is destroying enough to experience the collapse of every bodily system; it brings one close to ruin when the cause is suggested as lack of motivation or a wish to escape life.