‘Even my family didn’t believe I have ME’ | Daily Telegraph, Review Section | 31 October 2015

November 1, 2015

From the Daily Telegraph, 31 October 2015 (Story as told by Nathalie Wright to James Rothwell).

Every ME sufferer has a date etched into their memory: the day they realise they have fallen ill with a potentially life-long disease that leaves its sufferers paralysed by extreme exhaustion, bed-bound and in constant pain. On November 1, 2013, I became one of them.

It all began with a fever. I was a final year student reading English at Oxford University. I felt happy and fulfilled, was looking forward to the future and was full of energy – a keen cross country runner who would think nothing of staying up all night to keep abreast of the university’s notoriously hefty workload.

But the fever worsened, and as I struggled to complete my coursework due to fits of crippling exhaustion and nausea, it began to dawn on me that this was more than just a heavy cold. At the age of 22, I found myself too weak to even clean my own sick off the floor. So I asked my tutors for an extension on the coursework. It was denied. The subsequent weeks were a blurred mix of confusion and helplessness as I felt myself slip further and further into the nadir of the disease.

Day and night soon became indistinguishable. When the crushing fog in my brain cleared even a little, it only allowed me to be more aware of the relentless pain in my thighs and chest, accompanied by a constant vice-like grip on my skull. The symptoms danced round my body to a rhythm I couldn’t understand.

You may think that with such a serious disease I would have been offered extensive medical support. The opposite was true. Several GPs brushed me aside as being “a little stressed”. When I asked one of them how long I could expect to be so severely ill she simply replied: “How long’s a piece of string?”

Not only was I condemned to this tortuous illness, but my sentence seemed indefinite. I was forced to take a year out of my studies at Oxford. Months later, when I finally got a referral to hospital (all the while languishing in a house I shared with strangers, where I could barely look after myself at all), I was finally officially diagnosed.

“We’ll get you back up and running in no time,” grinned the specialist. I badly wanted to believe him but his words did not reflect my reality. As so often happens with poorly understood illnesses, attempts were made to psychologise my ME. I reluctantly saw a hospital psychologist, who seemed determined to find a cause in my immediate environment. After 40 minutes of desperate floundering, it seemed he’d hit the jackpot.

“Where did you go to school?” he asked.

Huddersfield, I told him. Nodding sagely and narrowing his eyes, he asked “Are you having a hard time with the posh boys at Oxford?” That was all the NHS had to offer me.

The avalanche of ME symptoms completely took away my life and such a profoundly disturbing change in physical health is enough to drive anyone to despair. I remember thinking, often, “I both feel like I’m dying and want to die so I can stop feeling like I’m dying.”

Yet I think the worst consequence of such a disease is the sheer loneliness of it. I cherished what little energy I had left to enjoy human interaction, often spending those precious grains of it on trying to appear as well as possible. I was ashamed of my ME.

At times it has seemed impossible to make my family and my friends understand exactly what was happening to me. Some of them even struggled to believe I was suffering from a real disease. Common responses would include things like, “you’re just depressed.” One person even suggested I was exhibiting “illness behaviours” and insinuated that ME was not a genuine illness.

It is hard enough dealing with this illness on your own, but even more so when those close to you struggle to even recognise that what you are going through is real. But, above all, complete silence was the most hurtful response. As is common when a young woman is in any kind of distress, I felt I was dismissed and disbelieved, while at the same time, I was also blamed for it.

It must have been that I was working too hard, people suggested. It must have been that I only did four hours of exercise a week instead of six, they suggested, or perhaps it was because I was doing too much exercise. As a result, I eventually started doubting every aspect of my being and sense of self – something I’m still trying to recover from.

Oxford University is often a terrible place to be sick. Determined to finish my degree, I struggled on a year later under what is an enormous workload for anyone, let alone someone unwell. As is usually the case at Oxford, even though I had suspended my studies purely on medical grounds, I was asked to sit nine hours of exams before being “allowed” back on my course.

My protestations that this would make me extremely ill were all but ignored. I managed to battle my way to just one penal exam, with my tutor’s admonishment to “toughen up” ringing in my ears.

If you take away from my story just one fact about ME, let it be this: it severely limits the patient’s capacity to function as a human being. I was reduced to a body on a bed in what should have been the prime of my life – yet in the grand scheme of ME suffering, I consider myself to have got off relatively lightly.

I can’t help but feel angry the disease is so poorly understood. This week an Oxford University study claimed that graded exercise therapy and cognitive behavioural therapy can help overcome it. Its findings are fiercely disputed by a number of leading experts in the field. Among the voices of dissent is that of Dr Ronald Davis, of Stanford University. “I’m shocked it was published,” he said.

I’m shocked too. My ME remains extremely life-limiting, but I have nevertheless improved a lot and am much better than thousands of severe sufferers around the world who are often ignored.

ME was my gateway to the world of the sick, and often the barrier between the two worlds seems insurmountable: how can you verbalise what is happening to your body? How can those lucky enough to live in the world of the healthy understand sensations that seem so alien to them? This is why, when sick people speak out, it is crucial we are listened to, without judgement.

The best way to help combat ME is through biomedical research. Though costly, sufferers of this potentially life-destroying illness need it urgently.

In the meantime, the skills of listening and empathy are always free.

As told to James Rothwell

FACTBOX: Myalgic Encephalomyelitis (ME)

What is ME?Myalgic encephalomyelitis (ME) is characterised by a range of neurological symptoms, such as muscle pain with intense physical or mental exhaustion, relapses, and specific cognitive disabilities. The illness was first diagnosed in the 19th century as neurasthenia but has been given many other names since.

Suggestions as to the cause have ranged from infections and gut bacteria to stress, depression, immune problems, trauma, environmental toxins and allergies. However, it is a poorly understood disease, which has led to it being dismissed by some health professionals.

What are the symptoms?

Sufferers report extreme fatigue, joint pain, headaches and memory problems.Who does it affect?Once dismissed as “yuppie flu”, ME is now a recognised illness that affects 250,000 people in Britain.

Commonly, a previously fit and active person finds their illness triggered by an infection.

What does the latest research say?

A study published last week by Oxford University found that suffers can overcome symptoms by increasing exercise and thinking positively. The research, which followed hundreds of sufferers over two years, found that graded exercise therapy and cognitive behavioural therapy had a dramatic impact. This has been fiercely disputed by experts in the field, however.

The American Institute of Medicine produced a report that contradicts the UK trial entirely, concluding that ME is not “all in your head” but is a “chronic, multisystemic disease characterised by significant relapse after physical, cognitive, or emotional exertion of any sort.” Among those who have criticised the Oxford study are Dr Ronald Davis of Stanford University. “The PACE study has so many flaws and there are so many questions you’d want to ask about it that I don’t understand how it got through any kind of peer review,” he said.

An ME Association study also contradicted the findings, claiming that graded exercise therapy had the opposite effect on sufferers, making 70% patients feel worse.

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