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The ‘other’ failed me: how illness affects self-perception

Essay | 15 minute read
Illness left an able father, husband and writer debilitated and housebound. When someone is diagnosed with a long-term illness, it shakes their sense of identity to the core, he argues.

Because I don’t want to feel that I’m the only one in this mess, I’m going to start with a generalisation and say that we, all of us, at some point in our lives, start to malfunction, to break down in some way. Those things we once did naturally, when we were younger perhaps, without thought or preparation or trepidation, suddenly require exaggerated levels of care and attention; we become newly complicated and fragile. And as a result, we change. I have been told, by noted professionals, that this mostly tends to happen at a certain stage in our existence, the stage at which birthdays take on an almost mocking quality. A midlife thing, in other words, that tricksy transitional period during which we have to face the abrupt obligation to start living better, wiser and healthier, and to be kinder to our minds and bodies if we want them to continue to remain fit for any sort of purpose.

When I meet new people now, I find I have to restrain myself from saying to them, in a side-mouthed whisper: What about you? Has it happened to you yet, in some way? I crave the comfort, I think, of the communal experience, and to be assured at least that my own malfunctioning is well within the parameters of whatever it is that conspires to make us normal, like everybody else.

Truth is, however, my own body started to fail me two decades ago. I was still young then, in my early twenties, and just starting out as a freelance writer. I was living in a succession of bedsits and studio flats where, in winter time, I would wear fingerless gloves while I worked because the heating didn’t work. As a result, I typed hunched over my keyboard without the slightest regard to posture or ergonomics, and so repetitive strain injury meant nothing to me until, horribly abruptly, it did, a raging fire in my capillaries that roared from crook of elbow to fingertip and back again. The pain felt like hot broken glass and, with no swift remedy on offer, endured for years, often impervious to the ameliorative efforts of the physiotherapist. But I was young, and it didn’t stop me living. Pain was a constant I couldn’t ignore and yet, somehow, ignore it I did.

But by the time I reached my early forties, youth had departed, mortality set in, and my malfunctioning body was something I could no longer overlook. The hectic pace at which I lived was now unsustainable, and the fact that it took me several years to realise this – for of course there were warning signs – probably contributed to its ultimate downing of tools one day in late 2011. I was married with children by then, on aeroplanes most months, crossing time zones while chasing deadlines and battling jetlag. Nothing remarkable in this – a great many more people worked far harder, and travelled further, than I ever did. But, as those noted professionals would sympathetically tell me, everything is relative. I had just happened to reach my own personal threshold. Melodramatically, I crashed.

The long, almost interminable investigation that followed boiled down to just one pursuit: finding out why. Had you asked me about stress levels back then, I’d have shrugged my shoulders in ignorance. Stress for me was like petrol for a car: it filled me up, and made me go. But I was tired now, really quite spectacularly tired, all of the time, levels of depletion that were not revived by a good night’s sleep, or 3-for-2 bottles of Boots’s multivitamins. I was getting viruses from the children, too, and was regularly ill. I got flu once, twice, three times in two years, the last bout so deleterious that I never fully recovered from it. At the slightest physical exertion, the virus would flare up again like fireworks above the bonfire.

This narrative should be depressingly familiar to anyone who also struggles in the maintenance of their health issues, and by all accounts many of us do. Like them, I became a compelling statistic: one in ten Brits today qualify as what doctors refer to as Tired All the Time (TATT). The good news is that TATT never killed anybody; the bad news is that once it surfaces, it lingers like scum on a pond, often without respite. Google, that reliable old bastard, talks of no known cure, of life sentences, of ‘a living hell’. These prognoses did me few favours.

Doctors generally don’t like symptoms like mine because there is no simple pathology to them, no convenient prescription to proffer. A study in the US found that nearly two thirds of doctors felt inadequately trained to care for the chronically ill, and as I became a glumly familiar face at my surgery, my GP in turn began to frown at each successive appointment, because if my blood tests weren’t going to reveal to her what was wrong with me, then what on earth was she supposed to do next?

I was skirting the perimeters of becoming a medical mystery here. Intriguing for others; panic-inducing for me. Six months later, an NHS immunologist wondered whether I might have chronic fatigue before telling me that I didn’t, in point of fact, present as a typical case. Much, much later, I would learn that there is no such thing as a typically typical case, but nevertheless the criteria for chronic fatigue are not unlike the list of ingredients found in a supermarket ready meal: there are an awful lot of them. To qualify for NHS treatment, the prospective patient must shows signs of the following relevant symptoms: an inability to focus on anything for any length of time, known as brain fog; an acute sensitivity to noise and sound; a multiplicity of aches and pains. Depression, too, ‘and you don’t strike me as particularly depressed,’ he said. ‘No,’ I concurred. My only symptom, then, was the fatigue itself.

He discussed with me stress, and then burnout, that defining modern malaise, and shrugged while recommending a course of cognitive behavioural therapy, not for the physical shutdown of my body but my psychological reaction to it. But when I attempted to enrol upon a course, I was denied because I failed to fulfil the NHS’s criteria.

I was on my own with this one. It was at this point that I started to unravel.

When a close friend suffered an aneurysm in the summer of 2013, the drama kickstarted a chain of events in which her care was paramount. There was an ambulance, a gurney, doctors in white coats, a diagnosis, a plan of affirmative action. There was after-care, support groups, regular checkups and happy phrases like ‘all clear’.

With my far less serious, and more elliptical, illness, nothing happened at all. I very swiftly fell off mainstream medicine’s map, withdrew and duly festered in my by now well-established ‘living hell’. This would have been an easy state to maintain were I single and alone, but my wife and children were going nowhere, and so life was not about to slow down on my account. They still needed me. Meantime, my symptoms were getting worse, terrifying sensations of absolute depletion, with no respite. For months, I couldn’t even take my girls to school, to the park, the shopping centre. I could just about minister to them while within the house; otherwise, I was helpless and hopeless, a failed father. I no longer knew who I was, what purpose I served. It was my wife, I fear, who bore the brunt of this, watching on as I shut down, and switched off.

Had I the smarts to view what was happening to me objectively, I’d have surely found it all fascinating. My life had shrunk to nothing within the space of a few months, the old me gone, the new me a variation of Miss Havisham contemplating her cobwebs. When I ask my wife about this now, she admits that she feared she was losing me, that I was becoming someone else: cowed, timid, afraid; a patient. ‘I watched you lose all your confidence,’ she says. ‘And I watched you become so afraid you’d get worse that you simply retreated from the world.’

This, I would later learn, is all pretty textbook. When I speak to Rebecca Stack, a Senior Lecturer in Psychology at Nottingham Trent University, she tells me that when someone is diagnosed with a long-term illness as I was, it disrupts, at its very core, their sense of identity.

‘You find yourself having to rewrite whatever it is you had planned out for your life, in terms of your family, your job, your friends, and whatever you thought you might be doing in the future. Your sense of identity becomes entwined with a new one, your Illness Identity. That takes over. You worry about how long it will last, whether you can control it, if you should take medicine – and which medicine, and for how long.’

There is also the issue of stigma. We don’t like being ill because it makes us feel like ill people, a demographic all of us would go out of our way to avoid. ‘We have certain perceptions associated with illness – dementia, for example, or HIV – and once we take on that identity ourselves then we look at the stereotypes other people might hold against these particular conditions. These can often be very negative stereotypes, which in turn will have a negative impact on the sense of self. Depression follows; anxiety. But this is all the process of adapting, of assimilating, into this new reality. It’s not easy.’

I felt the stigma keenly. My illness was a controversial one, the kind sufferers got angry about online, trolling medical professionals, occasionally sending death threats. Doctors would then pass these onto the media as if to say: ‘See? See what we have to deal with?’

I became resistant towards my new peer group, and by simply clicking off I avoided them altogether. That first consultation with Google on the subject was also my last. Elsewhere, I told very few people about it, and when my wife did – for practical reasons, or simply to vent – I felt compromised. My social life evaporated. I disappeared from it with conspicuous ease.

Though I managed to avoid funnelling my fear into anger, as the long-term ill can, I still felt as adrift as they did, as fearful for my future. I was in my early forties; the prospect of spending the next few decades like this was not an appealing one. Those of us for whom mainstream medicine has been found wanting are obliged to look elsewhere for a likely cure if they hope to ever get better, and I very desperately wanted to get better. So, after three years of inactivity, during which time I grew a predictable beard, worked sporadically, and read hundreds of books in pursuit of distraction, I did just that. I delved into the world of alternative therapy where practitioners reek of positivity and can-do productivity. When you are desperate, you are more open to outliers. Your previous cynicism recedes into scepticism until the scepticism evaporates altogether. Whoosh, gone. Your heart becomes hopeful, every practitioner your likely salvation.

Rebecca Stack tells me that the majority of the general public only ever retain very few bits of information from their doctor on matters of health, convinced they don’t have the  capacity to understand it. I shared a similar ignorance, and so I knew that if my experiment was to work – to immerse myself in this world as fully as I could – then I wouldn’t merely be a passive patient but would play investigative journalist. I would be Louis Theroux, and ask, and ask, and ask my questions, until the answers began to make some kind of cogent sense. Wheels would turn again. I’d find myself.

I met with energy healers and modern-day Buddhists, underwent hypnotherapy and kinesiology tests (by pendulum, as you do), alongside exercises that rewired the brain from its negative setting to a positive one. While everyone else was getting on with normal life, I was doing visualisation exercises in my room. I felt silly doing it, of course I did, but the sense of optimism generated somewhere within me took me by surprise. It all seemed so unexpectedly lucid and sensible, not the happy clappy nonsense I’d feared. Instead, it was eminently practical, in some cases vigorously scientific. ‘Self empowerment’ was a phrase I’d once have instinctively smirked at, and now here I was, self empowering on a daily basis. Me.

‘This is interesting,’ Rebecca Stack says when I tell her about it. ‘A lot of psychology is quite dominated with depression and anxiety, all the things that make life bad, in the hope of getting things back to some kind of normal. But positive psychology, which started twenty years ago with the writings of the psychologist Martin Seligman, focuses more on what we can do to improve well-being, our quality of life. It sounds to me that the process you went through might well have tapped into some of those feelings in a beneficial way.’

I had not heard of Seligman before, and so I look him up. As ever in this area, the vulnerable patient has to fortify themselves a little, if they hope – as I so often did – they might stumble upon another maverick with potentially magical properties. Martin Seligman, who likes to be known as ‘Marty’, boasts an unenviable hairline and, in one online photograph, looks like an extra from Saturday Night Fever. As a rule, the gravely incapacitated would rather their physicians didn’t wear Cuban heels. Nevertheless, his books, which labour under titles like Learned Optimism, Authentic Happiness and Flourish have clearly resonated with a great many people, and so I suppose his teachings have, by association, resonated with me. Thanks, Marty.

A lot of alternative therapy focuses on the reduction of stress, to lift the body out of its perpetual maladaptive responses and take it towards a calmer, healing state. This is why meditation has become so mainstream, all of us belatedly realising just how much stress we are carrying, and quite how heavy it is.

After I finished with my experiment, a full year after I started it, I registered, with as much surprise as giddy disbelief, that it had worked. I had become better. Not magically cured, nothing like that, but undeniably much improved. If my body still struggled to produce sufficient levels of energy, I was no longer hampering the process by reacting to it adversely. My responses were no longer maladaptive, cortisol levels no longer reeling.

I needed to maintain this momentum if I was to keep my Illness Identity in remission. And so I rejoined the world, and reasserted my small place in it. I bought a second-hand Vespa to ride over potholes in search of new thrills. We got a dog, and I walk her every afternoon at the local park where I have become part of an entirely new social group – dog walkers – a disparate group as motley as their animals, and terrific company.

With work, meanwhile, I needed a project. I had a lot of research amassed, albeit evidence of the strictly anecdotal kind, but intriguing nonetheless. I thought I could make a book of it, and though I felt awkward at the prospect of turning something so private public – entering Piers Morgan’s snowflake territory, perhaps – I went ahead and did it, convinced it might actually be of help to others in comparable situations. This was a curious position to find myself in, because I’m not used to writing things that might, even by just a tiny fraction of the public, be considered worthwhile. Today’s newspaper article is tomorrow’s cat litter tray lining. But, after some prevarication, I wrote it. The book came out in February.

What happened next revived me further still. I received a number of very moving emails from sane, compassionate and lovely individuals sharing with me their own struggles and experiences, and craving more advice, more tips; marriage guidance, even. Doctors have been in touch, wanting to discuss its themes, and some appear convinced that I was misdiagnosed all along and believe they might be able to help me yet.

The illness has left its mark, for I remain damaged goods, newly fearful of the world around me in all sorts of ways I had never been before – I err on the side of caution now – but most of me is back. My wife is relieved. And so am I, though I do miss the person I used to be, and I am sad that my children will never meet him but shall rather have to content themselves with this far more sedate character, someone forever looking for a comfortable chair to sit in.

I explain this to Stack, and she offers up some psychological wisdom that I should, by rights, be paying for. ‘Look,’ she says, ‘you have responded to your illness in the way that you feel is most appropriate for you. But it sounds as if you are evaluating these changes you’ve gone through as being negative. But are they really? You have taken an adaptive approach: to be more protective, to take care more, so that you can still work, and still function in the world, and for your family. These aren’t negatives. To me, they sound more like positives. Perhaps you should come to accept that.’

She’s right, of course. I should. And perhaps in time I will.

‘Get Well Soon’ by Nick Duerden is published by Bloomsbury.