Illness narratives often start with a shock: a sudden blackout; an excruciating headache; a lump. My illness, however, had the most mundane beginning. In September 2008 I caught a cold. I never recovered.
Within a matter of weeks I went from a happy, active 14 year old – a keen musician and a competitive judo player – to an invalid. I couldn’t stand without fainting, I couldn’t read or watch TV; I often couldn’t speak and regularly struggled to breathe. I was in immense pain, the light hurt my eyes, I couldn’t bear to be touched, and any noise caused further, painful deterioration. My life was suddenly transformed into the cruellest test of endurance: I spent each and every day between the sofa and my bed, unable to sleep yet plagued by an infernal exhaustion so intense I could barely move my limbs. During the very worst moments I wondered how I was still alive; during those worse still, I couldn’t think at all.
After medical tests heeded no clear results, I was diagnosed with M.E. – despite my quiet pleas that I was far too ill to have something referred to as Chronic Fatigue Syndrome. Like most people, I was completely unaware of the utter devastation this horrific neurological disease can cause.
Reality hit fast, followed by the burdensome weight of the stigma that so unfairly haunts this illness. Worst was the realisation that no one could help me: instead of medical help or treatment, I was left to try to manage my illness on my own. M.E. was, and still remains, both incurable and untreatable.
Though M.E. continues to affect every aspect of my life, a lot has changed in the time since those dark early days. I have been ill for almost 7 years now: a third of my life. I can no longer remember what it feels like to be ‘normal’. Yet my story is not a tragedy. Every morning I am well enough to get out of bed. I can wash my own hair and prepare my own lunch. I can leave the house and watch the seasons change from a view other than out of the living-room window. Despite concerns at my most ill that I might not even achieve 2 GCSEs, I can even study part-time at a university that I love. I am immensely grateful and will never take what health I do have for granted.
Most M.E. sufferers are not so lucky, with many spending decades on end in bed, in the dark, in silence, and in unimaginable pain. Those most severely affected are dependent on carers, morphine, and feeding tubes. Some die from the illness and its complications; more take their own lives, unable to endure the torturous suffering any longer. The fact that many still believe that M.E. is “just tiredness” simply could not be further from the truth.
While my health slowly improved, the same cannot be said about the perception of M.E. in the medical profession and in the media, as the truth about M.E. remains as hidden as its most severe sufferers. Veracious accounts are few and far between, as M.E. patients lose their voices both literally and metaphorically. From TV series to papers by literary critics, it would seem that nowhere is immune to the animosity directed towards M.E. sufferers, who are labelled as anything from ‘lazy’ to ‘hysterical’ – and much worse. Evidently, losing your health is not enough, as our dignity, too, is stripped from us.
Despite an increasing number of studies suggesting a serious, severe neuro-immune disease process affecting multiple bodily systems, M.E. receives no government funding for biomedical research, and many doctors still mistakenly believe M.E. to be psychological in nature. Though we are fortunate enough to have some superb medical professionals fighting our corner, the toxic combination of ignorance and arrogance in a few can be disastrous to patients, who are often put on forced exercise regimes that achieve nothing but worsen their condition. When my condition deteriorated in 2013 and I began having excruciating seizures that regularly required paramedic assistance, I was brutally reminded of the realities of this illness – and the chronic misunderstanding surrounding it – as neurologists were dismissive at best and abusive at worst. Worse still, some M.E. patients are forcibly institutionalised and locked in psychiatric wards against their will; Karina Hansen in Denmark has now been incarcerated for 2 years, leaving her so ill she cannot recognise her own sister, while in the UK Sophia Mirza experienced such a deterioration in her health after being wrongly sectioned that she died of the very illness she was told did not exist.
Ours is a forgotten illness – which, like M.S. and Crohn’s disease, were barely heard of 50 years ago – has too-long fallen prey to the erroneous stranglehold of certain greedy psychiatrists keen to exploit their psychosomatic model for profit. With more research and awareness, the truth will out – the question is, how many more will suffer until then?
May is M.E. Awareness Month. I’m not asking much; I’m not asking you to donate money to fund research, or join a protest, or volunteer for the cause. All I ask is – even for just one month a year – that you could please, please believe us. M.E. is not a choice; its sufferers are not malingers, and we’re certainly not lazy. We’re just ill people who desperately want to get better.
Photograph: Katharine Cheston