I find it very difficult to reconcile the contrary visions of health and illness, or even hold them both in my mind at the same time. They slip away from each other like oil and water. After a few months in bed I could not remember what it was like to swim a mile, which I used to do almost every day. I had forgotten the pleasure of cool water on my skin, the comfort of a smooth stroke; I could only imagine it to be cold and exhausting from the vantage point of my warm water bed and interminable fatigue. It happens the other way around too. A friend of mine who is recovery from CFIDS confided the other day, ‘I’m afraid I’ll forget what it was like; I already do on my good days.’ It’s like trying to remember the deep freeze of winter when you are sweltering on the beach in August. Our brains are not well equipped for such exercises, but something compels us to make the effort, to hold contrary pictures in a single vision.
[Page 9]

This was something that worried me for a long time after realized that I could not remember what it felt like to do things. I do not mean I forget them, I can remember doing things when I was little, I remember climbing Uluru (Ayer’s Rock) in central Australia for example, but I remember them in a dry factual way. I remember the chain near the start of the climb, the seemingly endless up-down-up-down hillocks near the top, looking off the top, and of course buying the t-shirt afterwards! But I do not remember what it felt like to climb Uluru. If I try to imagine how it must feel, all I can imagine is how it would be if I did it now, how I could slowly walk to the base of the rock, and maybe climb ten or twenty metres and how much that would hurt me, it’s almost difficult to believe that I did do it once.

This bothered me because I know that imagination and visualization can be useful in recovering from illness, but how so I visualize myself being well if I do not remember it? My psychologist treats many cancer patients and uses visualization a lot, and suggested that I pick something I used to do effortlessly – like riding a bike – and try to picture myself doing that, feeling the wind in my hair and the pedals under my feet and so forth. I cannot do it. If I picture myself riding a bike then my mind automatically fills in the exhaustion and pain and unsteadiness that would occur if I rode now … not at all what I want to picture!

I thought for a long time that this was either an omen saying I would never be well again, or simply a failure of imagination on my part, but I have decided it is neither. It never occurred to me to ask others with CFS about it until after I read the quote above, but everybody I’ve shown the quote to has agreed that it is also true for them, which makes me feel better.

Most people who live with a chronic illness will tell you that relapses are made much worse by the fact that they follow temporary remissions, when we think, with the eternal optimism of well-being, that we have escaped the clutches of pain for good. [Page 16]

As Jungian analyst Adolf Guggenbuhl-Craig observed, ‘Once a person went through life with a melancholic temperament; today the same person has to swallow strong medications until he becomes relaxed and stupidly happy.’ [Page 41]

I was talking to my Aunty Helen a year ago when I realized that had I been sick a hundred or two hundred years ago, it’s possible that I would have been a lot less worried about it – that I would have just been said to be ‘delicate’ or something and allowed to rest and sit down as much as I needed. Seems that we tolerate a rather smaller range of behaviour now that we think we know everything there is to know (ha!) about medicine and psychiatry!

When I was getting sick, feeling tired and achy all over, I kept wondering: is this real or is it just my imagination?, as if my experience were not real. [Page 51]

Everyone I know who is sick feels guilty for ‘not doing anything’, and it is that guilt that often prompts me to overextend myself. When I showed early drafts of this book to friends who are sick, many responded – to my horror – with shame, saying, ‘I didn’t do anything when I was sick, and you wrote a book!’ I used to have the same reaction whenever I read my college alumni bulletin; whilst I was in bed, gathering my strength for a trip to the post office, struggling to remember why I needed to go, my classmates were raising children, working at full-time jobs, serving on nonprofit boards and winning awards![Page 57]

I often felt better as soon as I swallowed my vitamin C, long before it had time to take effect. Medical researchers call it ‘placebo effect’; I prefer to call it magic, for it occurs when something – a pill or a word – is imbued with power and meaning, and so it becomes effective. That is alchemy. [Page 78]

Quick thought: Western medicine tends, I think, to view the placebo effect as something ‘bad’. Something that just clutters up its scientifically ‘controlled’ experiments and that it is closely tied in with ‘deceiving’ the patient. Has there ever been a serious attempt to harness this effect and use it to help people heal?

I have discovered that some of the anguish and embarrassment I have felt since being sick is self-induced; people rarely treat me badly, but I imagine how stupid, lazy or boring I must seem to them, and then feel terrible about it. At some point, at the extremity of my pain and exhaustion, I decided that I simply could not afford to judge myself so harshly; it was the proverbial straw that would break my camel’s back. I have always had the tendency to be self-critical, but my illness exacerbated it to the point of self-destruction. So I whittled my expectations down to the mean proportions of my circumstance and told myself: ‘The way I am right now – today – has to be good enough,’ no matter how frightened, silly, stupid or boring I am. [Page 96]

In any disease, a person is confronted with two very different entities. One, the person is faced with the actual disease process itself – a broken bone, a case of influenza, a heart attack, a malignant tumor. Call this aspect of disease ‘illness’. [...] Illness is more or less value free; it’s not true or false, good or bad, it just is – just like a mountain isn’t good or bad, it just is. But two, the person is also faced with how his or her society or culture deals with the illness – all the judgments, fears, hopes, myths, stories, values and meanings that a particularly society hangs on each illness. Call this aspect of disease ‘sickness’. [...] Science tells you when and how you are ill, society tells you when and how you are sick.
[page 40]

Taken in this context, the international “Change the name of CFS” movement makes a lot more sense. The ‘sickness’ part of this illness is heavy with connotations of laziness, lack of motivation, ‘it’s all in your head’, and being burned out yuppies – by changing the name we would (hopefully) have a chance to start anew building up another societal view of the illness, which now that we have so much evidence of biological problems, would hopefully be a lot less condemning of the patients!

Humans have physical, emotional, mental, existential and spiritual dimensions, and I would guess that problems in any and all of these levels can contribute to illness. Physical causes: diet, environmental toxins, radiation, smoking, genetic predisposition, and so on. Emotional causes: depression, rigid self-control and hyperindependance. Mental: constant self-criticism, constant pessimistic outlook, especially depression, with seems to affect the immune system. Existential: exaggerated fear of death causing exaggerated fear or life. Spiritual: failure to listen to one’s inner voice.

Maybe all of those contribute to physical illness. My problem is, I don’t know how much weight to give each level. Is the mental or physiological cause of cancer worth 60% or 2%?
[page 49-50]

I think very few people manage even a reasonable guess at how much each of these areas is ‘worth’ … I had one doctor tell me – as I was informing him that seeing a psychiatrist was highly unlikely to cure me – that even a broken leg had a psychological component and therefor the psychiatrist would cure me. Well, maybe broken legs do, but I’d still rather go for the plaster cast! He’d jumped from ‘a component’ to ‘the only component’ without a shred of justification. Personally, if only 1% of CFS is caused or perpetuated by emotional problems (even if they’re problems – like secondary depression – which are caused by the illness itself) then I still want to deal with that 1% because I figure that to get better I need every single bit of help that I can get! Well, actually, I only believe this when I’m feeling OK about stuff and haven’t recently been attacked by somebody telling me ‘it’s all in my head’, but it’s a good general theory!

1. The standard argument from perennial philosophy is that men and women are grounded in the Great Chain of Being. That is, we have within us matter, body, mind, soul and spirit.
2. In any disease, it is extremely important to try to determine on which level or levels the disease primarily originates – physical, emotional, mental, or spiritual.
3. It is most important to use a ‘same level’ procedure for the primary (but not necessarily sole) course of treatment. Use physical interventions for physical diseases, use emotional therapy for emotional disturbances, use spiritual methods for spiritual crises, and so on. If a mixture of causes, then use a mixture of appropriate-level treatments.
4. This is especially important because if you misdiagnose the disease by thinking it originates on a level higher than it in fact does, then you will generate guilt; if on a lower level, you will generate despair. Either way, the treatment will be less than effective, and will have the added disadvantage of burdening the patient with guilt or despair caused solely by the misdiagnosis.
[Page 261]