Chronic Fatigue Gets A New Name

So, The New York Times reports that the Institute of Medicine has suggested a new name for chronic fatigue syndrome. The proposal is that it should be called ‘systemic exertion intolerance disease’, which is quite a mouthful. But maybe an almost-unsayable name is appropriate for an almost-intolerable illness. Basically, the name is designed to reflect a significant symptom of the condition: ‘a sustained depletion of energy after minimal activity, called postexertional malaise.’

I used to describe the experience of the illness as akin to having a leaky car battery. You could charge and charge that battery, but as soon as you started doing anything you could feel the energy draining away. Quicker than seemed possible you’d be reaching the point of exhaustion. Sleep makes no difference. So during term at the university, I’d be struggling by about the second week in, watching my symptoms come earlier every day in the third, and running dangerously on empty from the fifth onwards, knowing I was just going to feel sicker and sicker and trying to manage the panic about that.

The harder you try to push through the fatigue and the illness and keep going, the worse it will all be when you finally stop. In fact the worse it is day in day out. I always thought that if it was only tiredness I felt, that really wouldn’t be a problem. The difficult part is that you feel extremely ill. There’ll be symptoms – nausea, headaches, general aches and pains, sore throats, dizziness, all that sort of thing – but the hard part to deal with is a kind of essence of all illness. You lose control of your temperature, your heart rate, your blood pressure. All of these experiences are invisible. The habitual words do not convey the reality of the feelings. No one will understand.

When I finally came off work, the suggestion from medics was that I try ‘pacing’. I began with no more than one hour’s activity a day, and would stick to that for a week. If all went well, then the following week I could increase my activity by five minutes. And again if all went well, five minutes more the week after that, and so on and so forth. There would be relapses. I remember several years ago, Mr Litlove and I were on a beginners’ tango course. This was a big ask for me – three hour sessions every weekend. Towards the end it was becoming too much and I intended to miss a session. My mother-in-law, who had been visiting, couldn’t understand it – I didn’t want to miss out, did I? If I was tired the next day I could just sleep in. Of course healthy people think this way. For me, I knew that completing the session would mean three days or so in bed, followed by a long, slow, increase of activity afterwards. And it’s hard to enjoy things when you are aware how expensive they are going to be.

I still think of energy as money. Some activities are a lot more expensive than others – for me, socialising, travel and stress are the most costly (this differs from person to person). But everything costs a little – being excited about something is as energetically demanding as being anxious. Laughing takes energy. Engaging in an intellectual activity doesn’t come cheap. Television is more expensive than a book. I have an expensive personality – my normal demeanour is bright, cheerful, engaged. Even being myself was more than I could afford some days, and of course the sense of outrage and unacceptability is so overwhelming when you cannot even behave like your own self that you (I) tend to push through regardless, out of frustration and stubbornness, and build up a large debt that then takes forever to repay.

Doctors have long wanted to push for depression as a key part of chronic fatigue, but I think that’s putting the cart before the horses. It’s hard to stay positive sometimes when you have an illness that is like a punishment for living. And inevitably, the sort of mindset you need to get better – calculating all the time what amount of exertion you can afford, always playing it safe, shying away from anything demanding – affects your confidence over time. Doing something new, or something you haven’t done in a while, can be frightening when you have no idea how you will feel afterwards.

I write about chronic fatigue for two reasons. The first is to raise consciousness, because it is still such a misunderstood and stigmatised condition. I’ve had a lot of time to think about it, and I’m motivated to find ways to express the reality of living with it. The second reason is that for a long time, I felt terribly ashamed of myself. I thought it was my fault. I didn’t want to confess to all the things I couldn’t do without severe consequences. I hated not being able to live like a normal person. But you know what? Denial is a very expensive habit, and I came to realise it was far better for me to accept the condition, to understand it was part of me, like it or not. And it still is a part of me. The past eighteen months have been a very stressful time for me and my family, and for most of it I kept up a reasonable level of activity. This was encouraging – I thought I was seeing the back of chronic fatigue. But then when things finally calmed down towards the middle of November, I felt the familiar old exhaustion. In December I caught every bug going, every time I tried to raise my level of activity even a little. I resigned myself to more of the same in January. This month, I’ve felt more like myself, but I have to calculate my energy every day and make decisions accordingly (hence minimal blogging for which I apologise).

But even the experiences that take the most away, do give something valuable back despite themselves. If there’s one thing this condition has taught me, it is the resilience of the human spirit. Since 1997 I’ve been on a wild cycle of ups and downs, but no matter how low I have been brought, I have always risen back to the surface. There has always been a return of energy, a renewal of appetite, an improvement in my overall wellbeing. And each time that happens, I have felt acutely, exquisitely, how precious life is. I live a very quiet, peaceful life, but living quietly and peacefully with much time for contemplation turns out to be something I cherish and for which I am profoundly grateful. Not many people have the luxurious time and space that I do for observation and for thought. The blessings only come from accepting the truth of the situation, and that can be hard with a condition that is so poorly understood. In the absence of a cure, perhaps a new name (however awkward!) will help the healthy and the sick understand what’s at stake, and deal with it better.

 

 

Dangerous Ambition

theblazingworldI’ve been wondering whether to ditch the idea of reviewing Siri Hustvedt’s novel, The Blazing World. Not because I didn’t enjoy it or admire it – I did both. But because it somehow seemed difficult to write about. Briefly, the novel concerns neglected artist, Harriet Burden, a woman of great ambition, great intelligence and fierce drive, whose work has been repeatedly overlooked and dismissed by the critics. It is structured as a posthumous collection of disparate writings by and about Burden that trace the development of her life and her last, desperate attempts to prove gender bias by creating three spectacular shows of work that are fronted by men, masquerading as the real artist. This isn’t some pc-driven whine: in the novel it’s noted how many actual women artists were blatantly sidelined, receiving no real recognition until their seventies (Alice Neel, Louise Bourgeois) or their death (Eva Hesse, Joan Mitchell) or indeed not at all – like Lee Krasner who was only ever seen through the frame of her husband, Jackson Pollock. The art world does have a problem with women, preferring ‘their geniuses coy, cool, or drunk and fighting in the Cedar Bar, depending on the era.’

Harriet Burden is driven to the edge of her sanity by the lack of recognition her work has received, and her dangerous ploy, to create work that men agree to show, backfires in all sorts of ways. Her first chosen male artist, a newcomer to the scene, is hailed beatifically and then cannot deal with the fact that he is not the work’s creator. Her second, a gender-bending black man, is too close to the feminine to attract the serious attention of the art world, though Harriet enjoys their collaboration most of all. The last, an already-established rock star of the art world, pretentious Rune, betrays Harriet in the worst possible way. Harriet proves the sexism inherent in art criticism, but she is powerless to change anything, and remains deprived of the satisfaction she seeks.

I thought a lot about Harriet Burden while reading Necessary Dreams: Ambition in Women’s Changing Lives by Anna Fels. Fels’ argument is that ambition is useful to us – ‘coping skills, understanding of reality and sense of self-worth’ are all higher in women who have defined plans for their futures. Women who want to be ‘upwardly mobile via their own achievements’ turn out to be ‘the most psychologically well adjusted.’ But recognition – accurate, meaningful praise from the external world – is consistently withheld from women, and white middle-class women in particular are the group most loathe to go after it. Ambition is understood to be pushy, aggressive, non-feminine. Women will repeatedly say that they have nothing against ambition, that they understand it can be useful, but will stubbornly stick only to ambitions that involve nurturing others.

What I found most intriguing about this book is its insistence on the value and importance of recognition. It’s a tragic myth women tell themselves to try to come to terms with their lot that it’s all about the work for its own sake, Fels suggests. ‘[T]he recognition of one’s skills within a community creates a sense of identity, personal worth, and social inclusion – base cornerstones in any life’. The times we receive recognition are usually iconic moments we remember forever more. ‘Recognition by others defines us to ourselves, energises us, directs our efforts, and even alters mood.’ Fels argues that the times we are happiest and most engaged in our work are the times when we are most valued and validated – and alas for women, cultural validation only comes in the form of praise for selflessness, for stepping down, shutting up, putting their desires away and promoting others.

Honestly? I agree. There is so much of my own experience that resonantes here. Fels notes that: ‘When girls persist in being high achievers, they are subtly penalised by their teachers. They actually receive less attention from their teachers than any of the other student types.’ Yup, that was my experience at school. And the times I flew high and found my work easy and fulfilling were mostly during my graduate days when I had two mentors around me who encouraged me a great deal. When I began working for the university, there was no recognition to be had. In thirteen years teaching, I had two appraisals and only one sentence of praise which yes, I remember to this day (the then Senior Tutor said ‘no one can please all the people all the time, but you get pretty close to it’). The constant lack of recognition undoubtedly contributed to chronic fatigue – I paid out so much energy, and had so little re-energising sense of doing well in return. And I did indeed feel guilty and wrong for wanting recognition at all. Not least because I was aware that it’s so hard to come by. For instance, here’s an intriguing study from Fels’ book:

Two groups of people were asked to evaluate particular items, such as articles, paintings, resumes and the like. The names attached to the items given each group of evaluators were clearly either male or female, but reversed for each group – that is, what one group believed was originated by a man, the other believed was originated by a woman. Regardless of the items, when they were ascribed to a man, they were rated higher than when they were ascribed to a woman. In all of these studies, women evaluators were as likely as men to downgrade those items ascribed to women.’

Essentially, it’s the premise of Hustvedt’s book. Which of course puts women in a complicated position. What else IS there to do but try and find consolation in the practice of whatever work we do, in the full awareness that it’s the only reward we’re likely to get? Another interesting book that’s been holding my attention lately is Art and Fear by David Bayles and Ted Orland. Approval and acceptance are hugely important, they agree, but to jump on the bandwagon and produce commercially successful art is often to lose your identity as an artist, whilst standing out for your own vision is always fraught with inevitable misunderstandings: ‘The problem is not absolute but temporal: by the time your reward arrives, you may not be around to collect it. Ask Schubert.’ It’s a great little book, actually, that has made me laugh a lot, and has some pithy advice.

The lesson here is simply that courting approval, even that of peers, puts a dangerous amount of power in the hands of the audience. Worse yet, the audience is seldom in a position to grant (or withhold) approval on the one issue that really counts – namely, whether or not you’re making progress in your work. They’re in a good position to comment on how they’re moved (or challenged or entertained) by the finished product, but have little knowledge or interest in your process.’

Sensible words, but I doubt they would have helped Harriet Burden. Ambition is like a virus, I don’t think you can just will it away, but it is also a very high-risk strategy, particularly for women and I can’t see that changing any time soon.

 

Writer Beware Writer

Ever since Dan Brown did his best to convince us that a Harvard professor of symbology could be an action hero, thrillers have moved into some unusual territories. Those of us crying out for the directions to the nearest library now turn out to have deeper and darker motives than you’d think possible. I was entertained lately by both Philip Kerr’s Research and Robert Galbraith’s (aka…oh you know don’t you) The Silkworm, books set fully within the world of publishing, where the authors had a great deal of fun at the cost of their profession’s integrity. Readers are more than welcome to join the party, but only if they suspend reality first.

researchPhilip Kerr’s Research opens with a shocking item on the news: it seems that multimillionaire author, John Huston, has shot his wife, Orla, and done a bunk from their luxury appartment in Monaco. Alerted to the news is struggling author, Don Irvine, who knows Huston better than most, given that he wrote a significant chunk of his novels. For Huston, ex-advertising copywriter and business mastermind, used to run what he called an ‘atelier’, a clutch of ghost writers to whom he would send out 70-page synopses, full of technical detail, to have them transformed into blockbusters. John is a man who can’t be bothered with the actual tedium of writing, and who saw from his first contract that there was serious money to be made if it were possible to produce generic fiction at a superhuman rate. Don was the first ghost he hired, and he used to do very well out of it, although he was paid a tiny fraction of the money that Houston glories in.

Then John Huston had an awkward turnaround; he decided he wanted to write something more literary and was tired of the treadmill of his empire. The atelier was disbanded and the men he employed were forced back on their own (literary) devices. When the news of Orla’s shooting reaches the papers, Don is dragged to lunch with the rest of the gang, all embittered, angry men who are delighted to witness Huston’s fall from grace. It makes a pleasant change from staring at computer screens, unable to come up with the plot that was John’s particular genius. (‘Being a published writer is a bit like what Schopenhauer says about life itself: non-existence is our natural condition.’) Don among them seems more loyal and forgiving towards their old boss. In fact, he’s expecting a call for rescue from him at any moment, and when it comes, the men team up in a race across the Riviera, trying to outwit justice. Or maybe, Don is trying to reach some unusual justice of his own.

The engine of the plot is rage and envy inspired in men by other men who earn a great deal more money. It’s structure is a two-handed narrative, as Don and John carry the story in turns, the better to twist and fool the reader. And the pleasures along the way are all about the ill-feeling that exists between genre and literary fiction. Huston’s brief to his atelier writers tells them:

If you want your novel to be a page-turner then make clichés your friends. Clichés – the kind of writing that Martin Amis makes war on – are the verbal particle accelerators to finishing books. Original writing just slows a reader down and makes him feel inadequate. Like he’s thick. Which of course he is but there’s no sense in rubbing that in. My readers actually approve of clichés.’

It’s a very funny book – you can’t help but laugh at the wall-to-wall satire – and it’s very slick. Though you get an ever clearer idea of where it’s headed the further through you get and the ending is not quite the exultant climax I was expecting. But it falls into the category of very pleasurable hokum.

 

the silkwormThe Silkworm is a strangely woven beast. Hold it up to the light one way and it’s dark, violent and grotesque; hold it up the other and it’s light, fun and entertaining. Essentially I think it’s written in Rowling’s easy, affable style, but inside her lurks the soul of a 10-year-old boy who is fascinated with everything disgusting and scatalogical (even the bit-part defunct cat is called Mr Poop).

Once again we have an author gone missing, but Owen Quine operates at the far end of the scale from John Huston. He writes revolting and perverse books of dubious literary merit that hardly anyone ever reads. Only when his body is found, murdered in the most ghastly circumstances, the motive seems to lie in his most recent book. In it Quine has taken revenge for all his perceived slights by portraying in ornately disguised fashion, his agent, his editor, his wife, his lover and his great literary rival. Having just written that sentence I suddenly wonder whether Peter Greenaway was a muse for Robert Galbraith; it’s plausible. Anyway, this part-disguise is in fact all about revealing terrible secrets concerning the above cast, things that they did not want the general public to know. Although the book is only in manuscript form, it’s managed to more or less do the rounds of the literary fraternity in London and so the possible suspects for the murder are legion.

Called upon in the first instance to find the missing Quine, is private investigator Cormoran Strike, the Rubeus Hagrid of gumshoes. A giant of a man but far from gentle, Strike wears his ex-military career in the form of a prosthetic leg, victim of a bombing in Afghanistan. Before we go any further, I would like to issue a plea to get that man’s prothesis sorted out. It’s clearly not doing the job, and I lost count of the times we are invited to be moved to sympathy because of it. I began to have fantasies about creating a detective who got the job done with tact and understanding; who realised the value of good contacts and used them, whose main skills lay in disarming and charming suspects and who looked after himself really, really well. But I forgave Cormoran because I like his secretary so much, the pretty and resourceful Robin who longs to be a detective herself. They make a good pairing.

The inadvertent pleasures of the book are to be found, again, in a slicing and dicing of the literary world, its greeds and envies and duplicities. Though really, Galbraith has more interesting and unusual things to say on the paradoxes of love. This is a long book, almost 600 pages, and its characters are for the most part unlikeable and unlikely, but the plotting is strong and sure-footed and the ending is cleverly done.

Robert Galbraith and Philip Kerr agree wholeheartedly that when writing about writers, it’s the compacted mass of dangerous emotions provoked by the desire to be validated through art that causes all the trouble. Writers, beware. And in both books the expletive count was astronomical. Readers beware. In Kerr this felt like parody, in Galbraith like overcompensation. Doesn’t everybody believe that writers are rough, tough stuff, just full to the brim of murderous violence?

Medical Misadventures

On Friday, Mr Litlove fell off his bike on his journey to work. He was rounding a corner when the bike slowly slipped from under him, and it wasn’t until he was on the ground that he saw the sheet ice. A couple of builders working nearby came over to check on him, but by then Mr Litlove was back on his feet and brushing himself down and being thankful he hadn’t broken any bones. He’d bruised his ribs and his hip, though, and when he limped in on Friday evening after work, he was clearly a man who had sustained injury and wanted some sympathy. Need I say more?

‘So you won’t be going rowing in the morning, then?’ I asked him.

Mr Litlove’s eyes slid away from mine. ‘I expect I’ll be fine,’ he said.

And so of course, the stubbornness of the male being unparalleled, he was up at 6 am and off to the river. And then we went out to lunch, so it’s possible that he overdid things a tad because by Sunday he was very stiff and sore indeed.

I was expecting a skype call with our son that morning. He has an essay paper to do this year and I offered to lend a hand, given that he’s not written one in several years. The topic is science communication, which turns out to be rather fascinating. It’s a jolly good idea for the public to have some notion of what science is up to, but as with all these vague mission statements, things become tricky when we actually get down to nuts and bolts. How much information do we need to have any sort of useful judgement about current developments in science and technology? Who needs to know? And who is going to tell us in the ‘right’ way? When scientists talk about public understanding, what they often mean is public appreciation – getting the power of mass influence behind their research in order to secure more funding. Whereas what often happens is panic or aversion thanks to sensationalist and inaccurate media stories.

Let me give you a little example of some of the issues involved. Back in the 1950s a medical researcher, Alice Stewart, started to collate the figures on infant deaths by leukemia in women who had been x-rayed during pregancy. The statistics spoke for themselves; up to a child a week was dying from the disease and the mortality rate was almost 40% higher in children whose mothers had been x-rayed. Stewart published her findings in the Lancet in ’56, in the British Medical Journal in ’58 and yet the Medical Research Council absolutely refused to accept her conclusions. Stewart was a lone female voice without the backing of a large organisation. Doctors were in love with the technology, which they believed could only be useful. They were unwilling to take any one else’s word on a problem they had not identified themselves – the more authority at stake, the more unwilling people are generally to admit mistakes. And finally, they believed that as doctors they were always healing people; they simply could not hear the opposite. Too many cherished assumptions needed to be overturned and so for the next 25 YEARS doctors continued with the x-rays, and thousands of children died.

Science needs to be in the public eye, because keen public observation keeps people more honest. And the general public is a useful moral barometer, reacting strongly when science moves into territories where ethical issues are complex. But then we have to think about the scares over the MMR vaccine, which were sparked by one set of results that have since been called into question. The real problem is in the calculation of risk, which we are not encouraged by the media to do with any pragmatism. And anyhow, when our health or that of loved ones is at stake, it’s hard to be cool-headed.

I have an interesting calculation of risk of my own underway at the moment. Last week an invitation from the NHS popped through my letterbox to attend a cervical smear test. Oh joy. It’s not the test itself that bothers me, it’s the inaccuracy of the results. One in twenty women screened will register a false positive and have to go through an unpleasant medical procedure in consequence. One in twenty is a lot. On any given day, assuming a 50/50 gender split, ten women will read this blog who have been scared and treated invasively for no reason at all. I’m tending to agree with Germaine Greer on this one.

I readily confess that I am not good with medical procedures – a touch phobic, for sure. And I am terrified by the prospect of falling ill again, having so recently regained (most of) my health from the worst of chronic fatigue. Am I sensible about this? No, of course not. I had a bad viral illness and it took me 13 years to get over it. How could I possibly be sensible after that? But I know for sure that the stress and anxiety over the test and a false positive result would result in another stretch of chronic fatigue for me. More months lost to illness, when I’ve lost too many already.

Don’t worry; I am the least reckless person you’ll ever meet and I daresay I’ll go and talk it through with my nice doctor. But I have a little fable involving Mr Litlove to tell you about. When I expressed my displeasure at the arrival of the summons, Mr Litlove sighed and clearly wanted to say something he thought better of.

‘You think I should go and have it, don’t you?’ I asked.

‘Well yes, I suppose you should just get it over with,’ he replied.

‘You men should try it once in a while. Some sort of unpleasant, embarrassing test with an uncertain outcome. Something that involves shaving your balls and having them weighed or some such. How many men would do that?’

‘Oh don’t make me laugh,’ said Mr Litlove, clutching his sore ribs. ‘Please don’t. It hurts.’

‘And that reminds me. If those ribs are no better on Monday morning, you should go to the hospital and get an x-ray.’

The look on his face was transparent. It said: NO WAY.

‘Casualty won’t be too bad on Monday morning, I expect.’

‘My sister’s coming to stay on Monday,’ Mr Litlove mumbled. ‘I’ll ask her.’

Back in the day his sister was a GP and now works in academia in public health, none of which to my knowledge has gifted her with x-ray vision. But this is typical. He’ll tell me soon enough what to do, but he’d rather walk around with cracked ribs than go to a doctor. What has understanding science got to do with our behavioural choices, I wonder?