I’ve been a bit under the weather for the past couple of days, and combined with the slumpiness I’ve been feeling, I think I have to accept that my recent medical ordeal has triggered my old chronic fatigue. I don’t talk much about chronic fatigue here. When I first began the blog, I had intended to use it as a platform from which I could recount my journey through it (and I hoped, out the other side). Instead I found all I really wanted to do was write book reviews. But I’ve come to the conclusion lately that not wanting to admit to chronic fatigue is one of the reasons why I have it at all. This will sound like madness, I’m sure, although I’ve long been obliged to accept that chronic fatigue is fundamentally counterintuitive. But let me explain a bit more about it.
Over the decade that I’ve had it, I’ve met up with a number of fellow sufferers and comparing notes has resulted in some intriguing similarities. Naturally we all have the same sort of symptoms, but it’s notable that we are all similar personality types and, in the majority of cases, have had similar life experiences. This has led me to the entirely non-medical conclusion that there is a distinct ME profile; people with chronic fatigue are often over-achievers, perfectionists and workaholics, they tend to have an uncertain sense of sensible boundaries concerning what they can take on and what they may achieve, and often have excessive burdens of responsibility. At the same time they are thin-skinned, oversensitive types who suffer from profound generalized anxiety and have harsh self-critical streaks, although this may well not be immediately apparent. Often they hide or disguise the negative parts of their personality or channel the anxieties bound up with them in other directions, like rushing around or talking too fast. ME is a complicated illness for complicated people, who often on the surface seem capable, enthusiastic and driven.
That ‘on the surface’ is telling. I know I am profoundly uncomfortable with admitting to my weaknesses, and I hate to show negative emotions like fear or anger. I will literally run away from a situation so that I can keep them private. Much as I am the first to encourage others to embrace their mistakes as some of the best opportunities life provides to shatter pointless illusions, get real, and make important changes, I’m not at all kind to myself when I falter. All I can think of doing is getting back up on the horse again, shoving the armour back on, heading back out into the thick of things. I think that this is a classic move by chronic fatiguers who persist in maintaining the lifestyles and the patterns of thought that make them ill. Chronic fatigue marks the site of a battlefield in the body between the mind’s determination to pursue certain idealistic goals, and the body’s increasingly allergic reaction to that pursuit, which it recognizes as being intrinsically damaging. I have no idea how this works, but long experience suggests that chronic fatigue is a violent attempt by the body to protect its owner from some situation, perceived as dangerous, by self-sabotage. This battle then takes place within an individual who does not permit themselves mistakes or weaknesses, who is already anxious and over-sensitive and who will struggle against the bonds of limitation, thus tying them more tightly, rather than giving up the unequal fight and settling for a quieter life.
Sounds stressful, right? And it is. The chronic dimension of tiredness (and persistent ill health) is confusing unless we recognize that it’s not just about having been through stress, but about maintaining that level of stress even when the obvious cause of it has gone away. Most books I have read, and the courses recently designed to help ME sufferers, like the Lightning Process, all seem to agree that the root cause of the illness is excessive adrenaline production. Stopping the cycle is the first hurdle chronic fatigue sufferers need to clear, which is easier said than done. As the chronic fatigue sufferer rests and tries to recuperate, so the body becomes fiercely protective and will ensure close down as soon as it feels too much is being attempted. This is fair enough when a system has been wrecked by massive injections of adrenaline, but the sufferers often rely on what makes them sick and rush back to adrenaline-fuelled pursuits. Chronic fatigue sufferers are like drug abusers who manufacture their own speed internally. The process of recovery is very similar to that of class A substance abuse, and as hard to accomplish successfully. But the principles are the same: an exemplary lifestyle and a long hard look at what caused the abuse in the first place.
What brought some of this to mind was reading Naomi Wolf’s eighties classic, The Beauty Myth, in which she explores the subtle but powerful subjugation wrought on women by a society obsessed with image. Now I can’t talk for men here, although I am sure culture does not let them off scot free and that they have their own impeccable and impossible standards to maintain. But it seems to me quite true that women come under acute pressure to keep themselves visibly attractive and that this has more profound consequences than we might think. Naomi Wolf has a snappy way of expressing the effect on women’s self-esteem caused by a mass media celebration of beauty: ‘More women have more money and power and scope and legal recognition than we have ever had before; but in terms of how we feel about ourselves physically, we may actually be worse off than our unliberated grandmothers. Recent research consistently shows that inside the majority of the West’s controlled, attractive, successful working women, there is a secret “underlife” poisoning our freedom; infused with notions of beauty, it is a dark vein of self-hatred, physical obsessions, terror of ageing and dread of lost control.’ Now Wolf is a good one for an attention-grabbing mission statement, but if that sentence seems a little excessive, it is fair to say that women are constantly, naggingly aware of external standards of attractiveness and will suffer quietly from any sense that they are not meeting them.
Where I’m heading with all this is the supreme importance of what’s visible. I think it’s a fundamental desire in human beings to be recognized, to be seen by others for what they are. Of course we long mostly for that seeing to take place with compassion, that our failures should be seen as the product of good intentions, that our weaknesses should be held and comforted as part of our vital humanity. But undeniably, we long to be seen triumphant, successful, attractive, beautiful. I think we confuse beauty with goodness, beauty with success. If we look okay on the outside then we must somehow be recognized as acceptable on the inside. It’s such a powerful desire that we will commit all kinds of atrocities in its name, even if – particularly if – we have to commit them on ourselves. But what we forget is that recognition can be sweet even if what gets recognized is not so very beautiful. A few weeks ago I was having a bickering session with my husband and surprisingly, for he hardly ever criticizes me outright, he stopped and put his hands on his hips and declared ‘Oooooh, you are being so infuriating!’ And as soon as he said it, I couldn’t stop laughing. It was true; I was at my most irritating and being caught and named that way just tickled me to bits. It wasn’t long before my husband had to join in and we completely forgot whatever it was that had so annoyed us a few minutes beforehand. And so I wondered whether the desire to perfect the façade, to look beautiful and successful on the outside is a complete misuse of our need for recognition. Trying to maintain the surface illusion only leaves us empty and dissatisfied. What we need instead is congruence; the ability to keep inside and outside in harmony, even if sometimes what is on the inside is sad or distressed or anxious, or just plain wrong.
Which brings me back finally to chronic fatigue, the most invisible of illnesses. Many’s the time I’ve wished I had broken my leg, so that I wouldn’t be forced to explain, or witness people’s looks of incredulity or disapproval. But I also think chronic fatigue is about amputating what seems negative and refusing to let it show, with the result that it returns as illness. I think it’s another unfortunate truth of being human that what you refuse to countenance as part of your personality simply comes out in forms you then have no control over. Which all leads me to believe that accepting and being exactly what you are, owning your emotions and expressing them with honesty but also with compassion for others, and finding ways to embrace the tough parts of life – the suffering, the discontent, the boredom – with truthfulness and measure are the key factors in finding a path through this challenging life. If only these things that are so easy to say were not quite so difficult to do.