Being Visible

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.


32 thoughts on “Being Visible

  1. Ah, Litlove! A broken leg would never slow you down; broken fingers, maybe! What an intricate web of illness and emotion you detail here. (If ever we needed graphic evidence of the complexity of the body-mind duality, ME should suffice.)

    I’ve come to expect loving but clear-eyed portraits of human nature from your blog, Litlove, and you always deliver. This from today is one of my new favorites: “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 . . . .”

    I would imagine part of what’s so debilitating about ME, for one such as you, is that it invites endless self-analysis, in itself exhausting. I see your desire to share that with us here as a product of your good intentions, and I hope I speak for all your readers when I say we reach out to hold and comfort your vital humanity.

  2. Your post reminded me of how difficult being a woman is. Yes we now have better paychecks but we do pay in other ways quite dearly too!

    I sincerely hope you do feel better. We are here for you.

  3. So moving, Litlove, and as always, so beautifully expressed. I also believe that a combination of honesty and compassion (with self and others) is the way forward, but it is hard because we are conditioned into a kind of diplomacy that seems rude when we break it. However, I am also learning that honesty, kindly given and compassionately meant, can be palatable for the receiver. The problem, though, is being honest with oneself. I am sure that with your long experience of chronic fatigue, you have learnt mechanisms to face yourself with honesty and kindness, and I think that writing here may be one of them. I so often find that if I write something down, it becomes far more palatable and acceptable than if I allow it to grow into a wild thunderstorm in my head. You have grown a very fond and compassionate audience here, who will recognise you for who you are, so if you need to write more, then do.

  4. oh dear, litlove.
    You have honestly examined, you have explained succinctly, and I would imagine you know the reasons behind it all. Please be more kind to yourself now.

    My students would put a rubber band around their wrists and they would snap it when they caught themselves indulging in the habit they were trying to break. I had permission to snap it too, if I caught them when they didn’t catch themselves. I think you now have a handle on when to “snap that rubberband.”

    Of course you are beautiful, in all the ways that are important. I hope you can take care of yourself in the way that you know you should.

  5. All those personality traits compromise an immune system. But as for mistaking beauty with goodness, more often than not, even more than unflawed looks (whatever that is), an unflawed personality is often mistaken for sanity and goodness. A loving husband will still be loving in the face of anger and the other “unacceptable” emotions, but express those unnurturing impulses anywhere else and just think of the names women get called: hysterical, crazy, bitchy. Not to mention: Evil Stepmother. Do you know how much psychic energy it takes to suppress the darker emotions? Immunological research has shown very clearly that doing so does in fact compromise the immune system (check out Pennebacker’s research for example).

  6. I’ve had fibromyalgia since I was 15, and it took me a long time to accept that the doctors didn’t have a miracle drug-that instead, I’d have to change my entire lifestyle to be healthy. I’ve never supressed my bad emotions, but I used to be a hard-core perfectionist who considered anything grade below a 95 failing. And the only great grades were a 97-100.

    Fortunately, I went to a liberal arts college with a lot of great professor who drove it into my head that the grade wasn’t as important as everything else. So I still got good grades, but I no longer freaked out as much about bad ones (my lowest grade in college was a B+). But as a fibro suffererer, the only way I can stay really healthy is if I go to bed at the exact same time every night, wake up at the exact same time every morning, do my yoga at the same time every day, eat a very balanced diet, etc. And for a long time in college, I refused to acknowledge this, because it meant I couldn’t party until dawn on Friday and Saturday nights. Studying abroad in Russia is what really drove the point home to me, and after I came back I did those lifestyle changes, and then I rarely had a relapse. But it’s still frustrating. I’m about to start grad school, so I’m worried that I’m going to make all of these new friends and then not be able to hang out with them as much as I want to. *sigh* But it’s better than not being able to walk or pick anything up for a week.

    I definitely think chronic illnesses like these are our bodies’ way of making our brains behave-as soon as a lot of stressers start piling up in my life, I have to be very careful, otherwise I’ll have a flare-up. Ok-I’m rambling on for no reason. I just don’t get to read the thoughts of other chronic illness sufferers all that often!

  7. I think you may be one the few people I know who’s able to turn the lens of their intelligence and insight onto themselves, and in so doing make out of their own suffering something helpful and true. Which is to say that you are a remarkable woman.

    I want to go back and read this again, but my impression is that stuffing down one’s sadnesses and worries is just a terrible idea. Mostly, when I feel this way, I shut down, and god knows it takes a long time to come back out when you do that. The trouble is that it’s difficult to find an alternative to shutting down that isn’t destructive or self-defeating. You have found one and I salute you for that achievement.

    much love, L

  8. Honesty, compassion, intelligence, insight and a clear way of expressing them. Definitely a remarkable woman! It seems that the more you live with (and write about living with) ME the easier it is to see the patterns and try and change them or lessen their impact.

  9. So true so true so true, all of it. But, at the same time, it’s not that simple… I’m having a severe relapse at the moment because of a hormone treatment I have to do for another illness. This has nothing to do with psychology, this is just my body reacting. So far for the psychologic cause of ME… Why am I so much more ill now when taking the hormones? Nothing changed in my mind, nor in my life…

    Years ago, my life has changed drastically after finding out some very useful supplements (vitamins etc), not after ‘changing my mindset’ (which I have done succesfully too). When I forget to take these supplements I get all my symptoms back, the pain and the fatigue. So, it’s chemistry, my dear, not all of it is psychology (although I’m just like you…I recognize all of the personality traits).

  10. My dear blogging friends – I’ve just been reading through your comments and have been so touched by them. Your support and encouragement means the world to me. Writing about this is one thing – having friends who listen and understand is quite another and you make me feel very lucky indeed to know you all. I’ll reply to you individually tomorrow – I only checked this on my way to bed, not expecting to hear from so many of you! Much love to you all, Lxx

  11. You don’t need me to tell you that I’ve read this sitting here nodding along constantly. Like Eva, I know that the only way forward for me is routine, routine and more routine. I think she has almost touched on what I find one of the hardest things to cope with when she talks about being worried about the new friends in grad school because very often it is well meaning friends who don’t really understand the difficulties that make it harder by trying to persuade you to break the life-saving routine. ‘Just once won’t matter…..’ The trouble is, the ‘just onces’ mount up. On a personal note, I’ll know I’ve really made progress when I do something that doesn’t fit my picture of how I ought to be presenting myself to the world and my first words aren’t ‘I hate me’. Still one of the most constant phrases on my lips.

  12. Dear litlove, what a really wonderful piece of writing, bringing together excitingly so many important streams of thought and feeling and perception. Maybe one day you will write a book about this? I am so happy that I discovered your blog and your writing (I think it was originally through a link from John Baker’s blog). You give me so much pleasure and so much to think about.

    I’m so sorry, though, that its inspiration was that you are having such a rough time at present. Please take care of yourself and I hope you feel much better soon.

    It is shocking, though alas not surprising, to think that your experience of discovering, through our very unhealthy health service, that there is NOTHING WRONG with your breast, was traumatic enough to bring on this relapse.

    It’s interesting to me that here you go back to some of the first things that were said about CF, when it first began to be talked and written about a lot – that temperament has a lot to do with it. Of course this is obvious to you and to me and to anyone for whom it goes without saying that body, psyche and temperament are all one thing, not separate. But sadly it is a dangerous discourse in a medical establishment where this is rarely accepted at all, and I think led to a lot of unhelpful interventions and abuses (psychological and temperamental component means it’s entirely in your head, your own fault etc, not a serious physical illness to be taken seriously, a bit of counselling and being urged to pull yourself together is what you need…etc etc). I guess that is why it is a viewpoint rarely heard these days, and it seems exciting and necessary that you should raise it in this very subtle, perceptive and multi-allusive away.

    This is only one component – and I think you are quite right to raise the overachieving, self-objectification and other components – but are you aware of the American research psychologist and Jungian psychotherapist Elaine Aron’s work on ‘highly sensitive’ people? Whilst this makes me come over very British and cringe at the thought of describing myself as ‘highly sensitive’, I read her books with an incredible sense of excited self-recognition – it has helped me to understand and accept this trait and not blame myself so much for apparently often finding life more difficult and painful than a lot of people do.

  13. Having been one of the lucky ones and not suffering from chronic fatigue, while I cannot claim to understand, I do sympathise. I can substantiate that men suffer from peer pressures as well. Perhaps deciding to opt out of the male games and one-up-manship early has saved me for I have many of the other traits you mention. Inward knowledge is never a bad thing and these reflections could be the way through the disease for you. Coming off adrenaline sounds scary but if that is what is necessary then it has to be.

    I look forward to finding a split infinitive, a mixing of tenses or a dangling participle in a Litlove essay as a sign that the inner perfectionist is at last under control.

    [hugs for a true friend]

  14. Dear Litlove,
    I’m so relieved you’ve come through your recent ordeal and grateful you’ve been able to share your insights so honestly. I do hope your slump lifts soon, it seems you’re heading in the right direction, using your skills to bring light to your experience and raising important questions, in this instance about the body.

    Your thoughts on congruence really resonated with me, as I’m in a similar slump – recovering from a crisis and loss. I think after a shock or ordeal, as one attempts to “pull oneself together”- the conflict between surface illusion and the uncomfortable depths often becomes more apparent.

    I tend to favour an experiential approach and agree that acceptance, allowing sensations to arise, is the way forward. In a moment of calm, we can examine these sensations (emotions & thoughts), discern whether they are helpful or not and move on with greater clarity.

    It seems to me an acceptance of our bodies is the most difficult to embody – which is why it is so important we continue to explore, record and share our experiences.

    My area of expertise is Oriental medicine and currently I’m investigating “integral” psychology (see Ken Wilber or John Beebe) which is also based on a holistic view of reality.
    Without delving too much into the realm of metaphysics, there is a convergence of thought in many fields (philosophy, psychology, quantum physics, ecology, even some areas of medicine) that points to a more holistic conception of life, mind and matter.
    If reality is multidimensional (many things arising and existing at the same time) then we need to address the dualistic/ mechanistic model of reality, which underlies so many assumptions prevalent in our culture – particularly those relating to the body.

    Many thanks Litlove for sharing your continued engagement with life and literature – I do hope you experience a greater sense of wellbeing soon. All the best

  15. “So, it’s chemistry, my dear, not all of it is psychology (although I’m just like you…I recognize all of the personality traits).”

    Only of course, psychology is chemistry too: adrenalin, serotonin, and so on and so on. Hardly surprising, then, that both chemical and psychological interventions may help, and also that thre’s no magic bullet that will always help, because it’s such a complex system. But until conventional medicine and conventional lay people understand and get better at acknowledging that it is a single system, (and they are, slowly, in my experience, but only very slowly) it will always be difficult for those of us who have chronic physical ailments with a strong psychological component to get the kind of help we need.

    That was such a moving exploration of a very difficult issue, LitLove, thank you.

  16. @ Emma: i knew my text sounded too simple. It’s a very complex matter and very hard to describe (and much more if English is not your mothertongue…). What I meant is, in my personal case, although I have cured for almost 95% of the psychological burdens that weighed on my illness, I still remain ill. Apparently I just need a shot of hormones to become a wreck in less than 2 weeks again, whilst before I could call myself almost cured (except from a few minor symptoms). So, what I mean is: fighting the malignant psychology traits doesn’t solve all of it. Even if you do this, you keep a certain physical weakness. I believe I have been born with this malfunction, in brain & body, this wrong ‘chemistry’, although it only appeared when I was 26.

    As a coonclusion I would like to say that several of my family members have the same psychology traits as I have (it seems to be hereditary), but none of them have ME. Moreover, I see heaps of perfectionism and stress in my friends (and even much more than I ever had), who are often young mums with heavy jobs, but none of them have ME. The mystery ME is not yet solved.

  17. David, dear friend, how kind you are to me! And wouldn’t it be awful if I broke my fingers – what would I do?? It’s true that I find it difficult just to be in certain situations, and if you have an overactive brain like mine, it’s very hard to find the off switch generally, and impossible when there’s not much else to do other than think! I suppose it also gives me a (spurious) sense of understanding and/or control over the illness, which helps. But too much thinking is tiring, I quite agree, and being comforted by my dear blog friends is far better therapy!

    Bluestocking – you are a real sweetie. It IS hard being a woman – we still have to do everything better than the men, I find. But the sisterhood is a great strength and comfort. Hugs to you.

    Dear Charlotte – you’re so right. I think of my blog as my really honest place, where I’ll only ever write what seems as close to the truth as possible. And it IS a comfort. I couldn’t agree more than it is better on the screen than rumbling around inside one’s head where it gets magnified by the echo. I worry about moaning too much here, but it cheers my heart no end when dear blog friends like you are so supportive.

    Qugrainne – what a lovely comment from you, thank you so much. It is true that not taking proper care of yourself can quietly turn into a bad habit, and such habits can be the very devil to break. I really do make big efforts to be kinder to myself now, and I’m getting there – slowly, but surely. The encouragement of my blogging friends helps no end.

    Querulous Squirrel – you say it just right. We have to hope for compassion because in its absence the very worst complexion is often put on simple emotional responses. I’ve often wondered how it might be possible to make the human race kinder, when it’s something we all long for, after all. I find what you have to say about suppressing negative emotions quite fascinating, and I’ll be looking up that research you mention – thank you!

    Eva – I find it completely fascinating to read your comment as I never get enough of hearing how other people deal with chronic illness. I have been caught so many times by that ‘just this once’ syndrome. Having a routine helps enormously but I’ve found my working patterns highly resistant to one. I should think more about that. But I should also add that my experience of graduate studies is that the late parties come to a halt for the most part, as people are aware of their professional commitment to their work. I am sure as well that the new friends you make will love you regardless of any minor limitations you may have regarding getting to bed in good time. I couldn’t agree more that stress is the most immediate and irrevocable trigger.

    Dear Bloglily – you are such a darling and I hardly feel worthy of your wonderfully kind words. It helps to write about it all in this blog. And it helps even more than that to have the very best reflection of my struggles sent back to me by my dear blogging friends. You are so right that suppressing negativity leads to shut down which does seem to be an awful state. I have to say I do feel comforted by the thought that it’s not just me who finds it hard to get out of. Big hugs to you and thank you for your wonderful support.

    Pete – oh bless you for being so very, very kind. All these supremely kind comments do counteract the chronic fatigue sense of being a helpless amoeba! I’ve lived with chronic fatigue for a long time now, and it feels to me like doing something to try to work out what it is and where it comes from. It might not be completely right, but it gives me the sense of tracking it down a bit!

    ME/Fibro-sufferer – hello and welcome and I’m so glad you commented. I find it fascinating to hear from other chronic illness sufferers as it is always helpful to compare notes. I agree completely that we know very little still about chronic fatigue and that it is a highly complex illness with a lot of factors that go into it. One of the most effective changes I made was to give up eating sugar which helped stabilise my blood sugar levels. So I agree mind over matter is not all there is. Hormones are one of the reasons mooted for ME and so I’m not surprised they have put you off course. Mine seem to magnify everything I feel, so what might be a tiny niggle one day becomes a real issue another. But I hate the sense of feeling like a victim to my symptoms and so I do concentrate on the psychological as it gives me something I feel I can usefully do. But I do hope that medical science will prove more helpful in the future.

  18. Oh my dear Ann, and when there are so many people in this blog world who love you so. But I understand, I do. And many many people have decided that I would feel so much better for getting out or doing more or returning to work and alas, it just doesn’t work that way. I do agree that routine is extremely helpful and I wonder why my own life is so resistant to having one imposed on it. I must think more about that. And I really empathise with your remark about doing something that seems not in keeping with the outside. We’ll have a pact to tell each other, shall we, when we reach that glorious point?

    Dear Jean – I can’t thank you enough for this wonderful comment. I went straight to amazon on reading it and have ordered one of Elaine Aron’s books (they look fascinating). I really wish that my journey through the screening process could have been quicker – I thought initially it would only mean holding my nerve for a fortnight, and it was spreading the stress over another four weeks that was so problematic. Partly this was my fault because I needed time to get accustomed to the thought of the biopsy, but then I wish I’d known that was going to be an inevitability sooner. When I was writing this, I was often thinking oo-er, I do hope other sufferers aren’t going to be offended by the psychological approach, because it’s been my experience that it’s essential and it’s also helped me a lot to look at it that way. But I know some people are afraid that any hint of mind/body conjunctions means malingering and hypochondria. What’s sad is that the people who suffer these illnesses are often the hardest working people I know and particularly tender to the implication that they aren’t trying hard enough. I completely despaired of Western medicine when I was trying to get help for chronic fatigue – there simply was none on offer, apart from the rather unempathetic prescriptions of pacing and exercise (which makes some people worse rather than better). But as you remind me so reassuringly, people who suffer from chronic illness are very well aware that their whole life philosophy and sense of self is bound up in it, and there can be no cure that isn’t holistic in approach. I’m looking forward to reading the Aron so much and I’m sure I’ll write about it here.

    Archie – hugs to you, too! That last part of your comment completely cracked me up. I’ll have to see if I can insert the odd grammatical howler into my posts as a way to embrace healthy subversion! One of the many things I love about you, Archie, is the way you stand up and proudly, entertainingly, cheekily and wholeheartedly manage to be just yourself. No compromises, no prisoners. I will have to take you as a role model!

    Kirstenjane – I’m so happy to hear from you but so sorry to hear that you’ve been on your own journey of suffering. Your words give me every hope that you have some amazing resources with which to face whatever blow you’ve been dealt. I think the experiential way is certainly the most effective one, and wish I didn’t find it quite so hard to do. But I’m getting there slowly, and making sense of my experience through writing helps a lot too. I am fascinated by what you have to say about integral psychology and will be following up those names you mention. It helps me a lot to have ways to conceptualise what I’ve been going through and to understand how best to move forward. Thank you so much for sharing your knowledge here – it all helps me find new approaches and enriches the old ones.

    Emma – thank you so much for your compassionate and understanding comment. I think that the rise of chronic illnesses just shows how much we don’t understand about our bodies, and their interactions with the mind. In the ten years I’ve had chronic fatigue things have changed a lot. Ten years ago it was just something shameful and poorly understood. Now there are organisations springing up to help and new processes being created to support sufferers and my GP will recognise it and talk about it even if the NHS has yet to accept it as a bona fide illness. So you’re right – we are making advances. Solidarity and information sharing between those of us who suffer is also a very therapeutic thing to do. I’ve been so pleased and comforted by the comments of blogging friends who know what it is to have a chronic illness. They’re isolating things to begin with, so sharing makes a huge difference.

    ME/fibro-sufferer – I would never have guessed English is not your first language! You’re quite right that there is still so much we don’t know about this illness and I can only hope that medical research will be moving in this direction. The one thing I know for sure is that it is a highly complicated illness and that there are all kinds of factors that play into it. Bearing them all in mind is surely a very good thing to do.

    Joe – I’m so very glad to hear that you’ve recovered completely. I have also done the lightning process and I think it’s very good and can be very helpful. It wouldn’t have been enough for me on its own, but it certainly gave me some extremely useful techniques.

  19. I’m afraid I’m with Pete. If this were psychological I can think of a whole lot of other driven, perfectionistic people who should have it instead of me, who was voluntarily working less than full time because I wanted to have more fun. Having said that, stress does drain energy, so removing it can only help.

  20. Oops, I meant to refer to the comment by ME/Fibro Sufferer. Sorry for the confusion.

    One more thing: Focussing on possible psychological aspects of ME does give one a sense of control, but wanting control is itself a source of psychological stress! Accepting reality takes less energy than fruitlessly fighting it. Let the researchers fight it for us.

  21. It’s easy for me to tell you to be kind to yourself because I don’t have ME. It’s easy for me to tell my husband to slow down and be kind to himself when he has MS fatigue because I don’t have MS. If I had either I’m sure I would be struggling just as you and he do. I admire your courage and your strength in not giving up in the face of it all. That said, I think you need the Dalai Lama chant. He is all about compassion and human kindness. As far as cutting back on the excessive adrenaline production, if you’d stop jumping out of airplanes that might help tremendously. Even the Dalai Lama can’t help if your parachute doesn’t open 😉

  22. I love this notion of outside matching with inside, there is so much in just that idea – I think people are fascinated by this (we make judgments on everyone we see based on how we perceive their exterior and just look at how much literature explores this same idea) but at the same time I belive we are often, subconciously or not, afraid of what it would mean to be recognized for who we truly are. Knowing and appreciating when someone pegs me correctly would mean that I have already pegged myself correctly and accepted it, or atleast spent plenty of time in self-reflection. Self-reflection can be daunting, frightening even, and there are many many people who are completely unwilling or incapable of the task.
    That sounds harsher than I want it to sound – I just think that it isn’t always outside and/or social forces that keep us from finding the right external/internal balance, we can make the job just as tough for ourselves.

  23. I’ve read Elaine Aron years ago, and at that time I was wild about it, most likely because I am no less than a textbook example of hypersensitivity (in mind & body). Indeed, you should read it (although it’s not heavy intellectual stuff 😉

  24. Sylvia – yes, I did think of you as I was writing this, as I was fairly sure you came from the opposite perspective. Although I never said it was black and white, either mind or body. I still think it’s a complex mix of both. But I guess chronic illnesses last so long you’re obliged to take up a stance towards them in order to find a way through. Stefanie – Dalai Lama here I come! And I must keep away from those aeroplanes – I knew there was something I shouldn’t be doing 😉 But seriously, you are a sweetie to realise that huge frustration accompanies long-term illnesses. The longing to get on with ‘normal’ life is tremendous and sometimes it’s hard to see around it to the benefits of taking the time out. I send my warmest wishes to your bookman, too. Verbivore – that’s an extremely astute comment. I do so much self-analysis that I forget how offputting it is to some people. And of course however hard you look, you never see yourself completely clearly; there will always be blind spots and I find that frustrating, too. It’s a conundrum, isn’t it? But one I do find fascinating. ME/fibro sufferer – I am so glad that it is a book you’ve enjoyed too! I’ve ordered it now and am really looking forward to reading it.

  25. So much has already been said, but I do want to say that I recognize the person you describe way too well. That is me. And it seems to be my eldest child. THe only way we really knew there were issues at camp were the wetting and him telling me. DUring the day, the teachers thought he was doing great because he does not show the frustrations underneath.

    And watching him do what I do makes me very, very sad.

  26. Dear Emily – I know exactly how awful it feels to watch your child reproduce your own unresolved struggles. And yet that also makes you the perfect person to mother him. Getting a grip on the unhelpful sides of our personalities takes a long, long time I find. But give him a decade of your loving, nurturing support, your sympathy and understanding and then see how very different he will learn to be. It’s got to be the saving grace of motherhood – that we don’t have to reproduce the same stories, even if it takes a while to write new ones. And helping your son will be very therapeutic for you, too. For all the mistakes and errors I think I’ve made, it gives me a real kick to see my son behave differently now to the way I might have done at his age.

  27. @ Litlove: I’ve continued thinking about all of this the last few days, and I came up with the tought that I know no one around me who does such a lot self-analysis as I do, who dares/tries to be so critical about himself. Maybe that is a typical part of our character too?

    @ Emily & Litlove: I have such a child too. Being overwhelmed or very tired but no one sees it but me. “Oh, she does well, doesn’t she, she’s not tired at all…” while I see her blushing and getting hyperactive to fight the fatigue. When she returns from the nursery, she’s totally dead from ‘forcing’ herself all day. Over there no one has noticed anything, when coming home she gives in and needs hours to recover. It’s difficult at times, but at the same time she has a mummy who went through all of this, and can help/guide her better than anyone else in the world. If my parents would have understood me (my nature) better, lots of things would have been a lot less difficult for me.

  28. ME/fibro-sufferer – yes! I think that the analytic capacity does make for an unquiet, restless mind, a desire to know the why of things, an itchy need to understand. I think it’s a tremendous force for good, but like all things in excess, it can be damaging. Trying to get boundaries around it is so very difficult, but worthwhile, I think.

    I am not at all surprised to know you have a highly sensitive child, but I think you have it exactly right. You’re the perfect person to help her. Just being understood makes a huge difference to me still.

    And Emily, if you don’t know them already, I do recommend the works by Elaine Aron on highly sensitive people. I’ve been so impressed by what I’ve read so far and I believe she has a book dedicated to helping children. I will certainly be applying what I’ve read to my son.

  29. And just think, Litlove, that The Beauty Myth was written before so many women starting getting breast implants that I now suspect (many) men feel “entitled” to abnormally large breasts!

  30. I just wanted to let you know that I read your post and all the comments with great interest (and admiration!) but since I’m in the middle of a flare-up of my own chronic illness, I can’t really muster up the energy to join the conversation. So let me just say that I think everyone here has great points, and that the human body really is an enormously complex system that we don’t really understand yet.

  31. Reb – Ha! Yes that’s true! If so, they are going to feel extremely short changed with me. But you have to wonder what else starts to become an expectation with botox around and all the rest of it. If men start to feel entitled to glamourous post-menopausal wives, this is only going to benefit the already huge business of anti-ageing.

    Dew – Oh I am so very sorry to hear that you are laid low! Poor Dewey. I am sending the very best of my healing vibes over to you. These chronic illnesses really are the pits, aren’t they? Take the greatest care of yourself.

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