One of my anxieties about being admitted to hospital in 1999 was the prospect of meeting other people who were diagnosed with ME. I had been unwell for more than seven years but I had only ever known or spoken to one person with the same diagnosis, and he was significantly less unwell than me.

In truth, I was probably a bit prejudiced. I was sure there must be other people who had the same illness as me, and that there were people with the same diagnosis but with different symptoms, both in nature and severity, but I also suspected that there were some, possibly many, for whom the diagnosis was convenient in some way. A friend once told me that I was different to the other people he had know with ME because it didn’t suit me, and I knew what he meant.

Before I was ill, I knew very little about ME. I was aware of the scepticism that surrounded it, which, combined with my ignorance, made me fairly cynical about those who “claimed” to have it. It had never occurred to me then that there might be people for whom this diagnosis – given to them – was unwelcome, despised or even denied.

When I was first unwell, before I was diagnosed, I detected no hostility or scepticism towards me. Mostly the doctors seemed sympathetic, concerned and curious to understand what was causing my symptoms. But once I was diagnosed and presented as a patient who had been diagnosed with ME I felt as though I was treated quite differently; as though I was someone I was not. Symptoms and character traits would be attributed to me that I have never had. I read articles by doctors who had never met me, denouncing me by association, as though I had diagnosed myself in order to join some sort of deluded cult of malingering hypochondriacs.

I couldn’t believe that any signatory to the Hippocratic Oath could be so cruel or ignorant to write with such venom without very good reason. My inclination was therefore to believe that I must be different to most other people who were diagnosed with ME, and that they, not the doctors, were the cause of the hostility I encountered.

For years I desperately sought an alternative diagnosis but none was offered. A neurologist once told me to have nothing to do with any of the ME organisations because most people who say they have ME are “just depressed”. But he assured me that I had an “organic illness” and that he would “get to the bottom of it”. His words were comforting to me at the time but the succour was short lived. The only alternative diagnosis he offered was that I had some sort of post-viral syndrome, which was even less useful than being told that I had ME. In being discharged from his care, I was given the confident assurance that I would get better. Twenty two years later I am still waiting. And if he has not retired, he may well still be offering the same confident assurances to patients like me, oblivious to the outcomes of those he discharges.

Another doctor was not only unhelpful but openly hostile. Approaching my twenty-first birthday, I was at a very low ebb; anxious, desperate and tormented by discomfort and frustration. I felt as though my life was running away from me and nobody could tell me why. The doctor in question asked me nothing about my symptoms or history before telling me that people like me “just need a bit of a kick”.

Despite my state of health and vulnerability I was much stronger then; more sure of who I was and where I would have been; more willing to be confrontational.

“FOR FUCK’S SAKE!” I shouted as I stood up in rage, before checking myself and regaining a modicum of composure.

“You see?” he taunted, “You seem fine now,” as though he had been vindicated by my reaction.

Foolishly, I tried to reason with him. I even apologised! But it was as pointless as trying to reason with the judge while standing in the dock at a Salem witch trial. I was guilty as charged, and anything I said or did could only reaffirm the certainty of that verdict.

In an ideal world I would have liked to report him to the General Medical Council, but even if I had been well enough to embark on such action I knew that it would have been futile and probably counterproductive – like writing to Senator McCarthy to complain about having been falsely accused of being a communist sympathiser. Unbeknown to my tormentor, I paid very heavily for my exertion that day, and in some respects I am still paying for it now. Unsurprisingly, I never saw him again. My guess would be that very few ME patients ever saw him more than once. For such doctors ME poses no problem. They are free to preach hatred in the press and elsewhere with a clear conscience, blissfully unaware of the suffering they ignore and compound so coldly.

Around about the same time that I saw that doctor, I read an article about ME in The Daily Telegraph¹, written by another GP. It made me feel so angry and fearful that I still think about it frequently now, more than two decades later. As part of my research for this essay I dug out the cutting that I had filed. Reading it again was even more traumatic than it had been the first time. Back then I was fearful of what might lie ahead. I was young, full of spirit and ambition, crippled by an illness that nobody seemed to understand, angry and scared. Now I was not only taken back to that time but also to the realisation of so much that I feared that day – all the years of pain, unbearable discomfort, debility and neglect. After more than twenty years I still felt as though I was being abused by someone who has never met me and knows nothing about me; someone who is paid to do no harm.

The man in the bed opposite me was probably younger than I am now but he seemed old to me then, with little hair and the essence of middle-age. He appeared to be remarkably well. While I lay in or on my bed under a thick duvet, wrapped in multiple layers and reliant on the nurses to push me to the bathroom, he seemed very comfortable strolling about the ward, watching television in the common room, or sitting next to his bed listening to music through giant headphones. Whereas I had struggled to cope with the exertion of being driven to hospital and wheeled into the ward by my parents, he had made his own way there and walked in. The only discomfort that I was able to discern from his manner was that of boredom.

It was difficult when he tried to engage me in conversation because most of the time I wasn’t feeling well enough to talk but I didn’t want to seem rude or unfriendly. He asked me if I would mind if he put some music on the radio through the loudspeaker. I was exceedingly sensitive to noise and the thought of being subjected to whatever music he was listening to was excruciating, but I didn’t want to have to explain that or to be perceived as being awkward or anti-social, so I told him that I didn’t think it was allowed, which was true.

It was mid-morning and he was sitting on his bed in his striped pyjamas and dressing gown, propped up against his pillows. His legs were straight out in front of him and crossed, and his hands were interlocked behind his head with his elbows pointing outwards in a posture of conspicuous relaxation.

“I don’t know about you,” he volunteered, “but I was quite relieved to get my diagnosis. I’d had enough of the rat race and was pleased to get out of it.”

Although I was surprised by his honesty, his words didn’t contradict any of the vague impressions I had formed of him to that point.

I told him that no, I was not in any way pleased to be unwell, and that my diagnosis was almost as unwelcome as the illness itself. My life had been good and I was desperate to get back to it as soon as I could. There was so much that I wanted to do, and every day I felt that I was missing out on something – quite apart from the tranquillity of being free from pain and feeling in any way comfortable for any part of any day. I didn’t say quite as much as that but I was thinking it, and he clearly understood.

“You want to hang on to that,” he advised, sagely.

I wasn’t sure if he was expressing regret that he had lost his grip, or if he had just not been lucky enough to have had anything to hold on to, but he was right. I was tormented with frustration but also fearful of losing the desire which stoked it. To live in such pain and discomfort without longing was a void into which I feared even to contemplate falling. I had been holding on for seven long years, silently screaming for someone to haul me back to safety.

On the surface, the contrast in our wellbeing appeared to be as stark as the difference in our mindsets. Beyond an apparent lack of purpose, the man’s suffering was not obvious to me from our brief interaction. And yet, I did not doubt him for one moment.

Although most of the beds in the ward were reserved for ME patients, there were generally at least one or two that were occupied by patients with different neurological diagnoses. Had the man speaking to me been diagnosed with ME I might have judged him differently, but when he had introduced himself he had told me that he had MS.

Multiple Sclerosis is a chronic, debilitating disease of the central nervous system which can now be accurately diagnosed. Symptoms are diverse and can vary significantly between people. They may come and go, or they may become permanent or get progressively worse. Until well into the twentieth century MS was thought to be a predominantly, or exclusively, male disease. Most women with MS were dismissed as suffering from "female hysteria", but it is now known that MS affects at least twice as many women as men.

Theories about the cause of MS have included the suggestion that it is caused by stress related to oedipal fixations. Thankfully, all such nonsense has long since been discredited by empirical research², but sadly the history of medicine is littered with similar examples. Perhaps the most poignant is that of New York psychiatrist Casper Schmidt who died of an AIDS related illness ten years after publishing a paper in which he dismissed AIDS as being the product of “epidemic hysteria”³.

We are inclined to look back in horror at the abuses of the past as though they could not happen now, but sometimes it seems that all we learn from the history of medicine is that we never learn from the history of medicine. When faced with ignorance our instincts and reactions today are often not so different from those of our ancient ancestors whose base and cruel actions we now mock as though they were alien to our more civilised mindsets.

If my admission to hospital achieved anything for me it was to help to liberate me from my prejudice. None of us on the ward were the same. We were all very different individuals with a diversity of symptoms and varying degrees of disability. I don’t know if we all had different manifestations of the same illness or different illnesses. But what was beyond doubt was that we were all unwell, we were all desperate for answers and effective treatments, and we were all deeply frustrated by our pain, discomfort and incapacity, and the lack of understanding of what was wrong with us.

Unlike most doctors, journalists and others who express opinions about ME, I had the privilege of living in the same room as these people for long enough for me to get to know them a bit and to observe the extent to which they were affected by their illnesses, which was far greater than would have been apparent from a five minute appointment – not that everybody was well enough to attend a surgery. Contrary to my fears, and the ill-informed commentary I had read, the other patients were generally very reticent to discuss their symptoms and mostly preferred to talk about anything other than their health.

I became close friends with one person I met in hospital. We stay in touch by writing, but because we are both still unwell and live in different parts of the country we have not been able to see each other again since we were discharged. Knowing her, and knowing that she understands in a way that someone who has not endured a similar experience cannot, has given me strength and helped me to feel less alone.

Remembering my own prejudice, I try not to hate those who have doubted, ridiculed or mistreated me. But I do fear their ignorance and their influence. It seems that attitudes may be changing as the evidence from biomedical research slowly starts to accumulate⁴ but a recent encounter with a doctor I had not seen before confirmed to me that there is still some way to go. And the ignorance is not only confined to the causes and pathophysiology of the illness or illnesses. Many doctors still seem to have little or no understanding of how patients feel or how the illness affects their lives.

I do not mean to be critical of all or even most doctors. Some have been very kind to me, and I am exceedingly grateful for their care. Another new doctor I saw recently was so kind and helpful that I almost cried from relief. For such doctors, the burden of caring for people for whom they are able to do so little to help must be very great, and I do not underestimate the difficulty of their task. But such care should be the expectation, not a welcome surprise.

Lying on my bed waiting to be collected by my parents on the day before the last Christmas Eve of the Millennium, the ward was nearly empty and there was an end of term feeling about the place. The beautiful young woman diagonally opposite me with the large, freshly-stitched scar on her shaven head, who appeared to have made a point of undressing with the curtain only partially drawn so as to expose herself me, had left. The kind, elderly woman in the bed next to me with advanced Parkinson’s Disease, whose fingernails I had cut because her hands were not steady enough to do it herself, had been discharged. The middle-aged man with Multiple Sclerosis was no longer there, and the other beds, as far as I recall, were empty.

Unlike my previous admission (to a different hospital) where I had been humiliated and ridiculed, the hospital staff here were generally kind and helpful. Physically, I was feeling significantly worse than I had when I arrived but I also felt that most of the staff had a reasonably good understanding of how I was and one or two had even got to know a little about me as a person beyond my diagnosis.

Preparing a bed with a colleague for the next arrival, one of the nurses I did not recall having seen before saw me alone at the far end of the ward and asked me how I had got on during my stay. In keeping with the doctrine to which I had been subjected, I tried to say something positive, although I chose my words carefully – not wanting to lie or to give the impression that my admission had been any more helpful than it had been. Although the nurse’s reply suggested a similar obedience to authority, it was perhaps more revealing for the fact that it did not appear to have been calculated so carefully. She seemed pleased to hear that I had not been mistreated. “You see, in here,” she explained, “we treat ME patients as if they’re just the same as any other patients.”

That she would not have spoken those words to a patient with any other diagnosis did not seem to have occurred to her. And I was left wondering to what extent I might have been humoured.

All patients were equal, it seemed, but some patients were more equal than others.

Robert McMullen, September 2016