“A change in attitude led to my CFS cure!” – a rant

I don’t share Made in Melbourne’s optimism about this piece in the Age, Layne Beachley’s “Beating Chronic Fatigue Syndrome”. (Yes, she’s selling something – her book and her sports clothing brand.) Beachley writes:

Relief finally came when I sought treatment from a naturopath. I was placed on an extremely restricted diet in conjunction with a nutritional programme of dietary supplements and vitamin injections.

The dietary regimen consisted of no yeast, wheat, sugar, dairy or fruit. Tough but manageable. The hardest part was the ban on exercise. No surfing!

Being so physically active, the experience of my body shutting down on me was too much for me to accept at the time.

I spiralled downhill rapidly as I continued to buy into what everyone was saying about me compounded with self -hatred and impatience.

But I couldn’t begin to overcome the illness until I changed my attitude.

Reading about CFS helped me gain an understanding of what was happening to my body. With greater knowledge I realised that it was okay to feel as bad as I felt.

Once I stopped beating myself up my health started to improve.

For me, articles that trumpet things like “Diet and an attitude change cured my CFS!” are not just unhelpful, but can be positively harmful.

Aside from the gratuitous and inaccurate “Yuppies’ Disease” slam at the start, there is nothing in the article that adds new information to people with no CFS experience or knowledge, little that attempts to break down existing stigma, and plenty to reinforce trivialising and PWD-blaming attitudes. There is nothing about the difference between burnout or “chronic fatigue” or mimic conditions and CFS/ME. There is no realistic attempt at myth-busting, only a grudging “Oh, it’s a ‘real’ disease now” – followed by the idea that an “attitude change” can fix it.

If an attitude change can fix it? That means that the cause is an “attitude problem”.

The institutionalised idea that CFS is an “attitude problem”, an idea that still holds a lot of currency amongst uninformed and prejudiced medicos, has led to the very worst abuses of CFS patients. Maybe Layne did have some psychological issues that needed sorting out – but a throwaway line like that reinforces bigotry and does untold damage to people trying to live with this heavily stigmatised illness.

Everyone who’s ill needs to adjust to coping with that illness. This comes as no surprise to anyone with CFS, people with diabetes, people with arthritis, people with autoimmune diseases. Where the article goes wrong is in the assumption that it’s the attitude adjustment that produced the cure. If an attitude adjustment seems to cure CFS/ME? Guess what, either that was the wrong diagnosis in the first place, or the illness was already going to get better, and the natural desire of all people to seek patterns and to attribute causation drew the connection. Sometimes warts get cured after rubbing them with a potato then burying the potato in a graveyard after midnight at a full moon. That doesn’t mean the potato did it, but humans will ever be susceptible to the post hoc ergo propter hoc fallacy.

The worst CFS-related experiences I’ve had with people in my life is with people who “know” that diet, exercise, positive thinking, antidepressants, vitamins, herbs, energy medicine, or some other cure-of-the-week else “cures” CFS – because they read it in the paper, or know a guy who knows a guy, or “hey my neighbour sells Neways and…”. I’ve gained support from those who have been through this, and from those who know nothing. But people who have a tiny bit of misinformation or have read a few half-truths? They’ve been by far the worst.

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22 replies

  1. I think a change in attitude can help (though not cure) chronic fatigue, but not in a “positive thinking sense”, just that sometimes a bad attitude can make you behave in self destructive ways ie pushing yourself too far. To give a less loaded example: I have bad knees which are made worse by walking up stairs. It took me some time to adjust my attitude from “There’s no alternative to stairs, I’ll just put up with the pain” to “There has to be a ramp or lift somewhere, and it’s worth the extra walk”. But the underlying problem was the mechanical issue with my legs, and as much as attitude helped the main solution was also physical (orthotics)
    The article is a bit ambiguous about what sort of “attitude” she means, and certainly someone could read it as “Feel emotionally good, and you’ll feel physically good!”

  2. I’m someone who’s currently struggling to get a proper diagnosis and treatment for a combination of thyroid, parathyroid and pituitary problems, and dear god I hate those articles. It seems like the woman in the article is probably trying to say “It’s ok to be ill, and knowledge can be power in getting treatment and possibly feeling better” but it just comes across in completely the wrong way: “I did it and so can you! Woo perky! Dairy wheat and sugar evil!”
    Hell, hypothyroidism can be misdiagnosed as CFS, fibromyalgia, depression, kidney failure, diabetes, and a bunch of other conditions. Imagine you’re fat, tired, depressed, and have a raised blood sugar and cholesterol level. Diagnosis: Diabetes! Except not, if something else is going on. Or maybe you’re just a hysterical woman who just needs to lose weight, or have some *#@#!% Bach Rescue Remedy. Gee, I’m not bitter about undereducated and unsympathetic doctors and “helpful” people at all.
    I like what Twisty Faster has to say about the “positive attitude” people she’s encountered in the cancer (and particularly breast cancer) “community”: it’s victim-blaming, patronising, infantalising and particularly directed at women.

  3. I think that the person I know who has CFS gets away with less of this victim-blaming because her problems started with mononucleosis, which she got once and then relapsed three times. I had it twice—we had the same strain—and had similar problems for years afterwards of sleeping more hours than most people and still feeling tired. I have no fatigue problems now, but I remember mono and the time it took to recover and how horrible it was. Anyone who downplays the misery of fatigue or victim blames is a massive asshole. But while I got all better, my aunt had problems that sucked her down for years, and still do to a degree. If you trace it back to mono, though, people believe you a little more.

  4. Agree completely, except for the bit about potatoes and warts -I have, somewhere, seen a study that showed raw potato is actually quite effective at removing warts (though clearly the burying it at midnight in a graveyard bit is not required), although I can not lay my hands on it at the moment.

  5. The dietary regimen consisted of no yeast, wheat, sugar, dairy or fruit. Tough but manageable.
    Not for some of us; some days, I get through my fibro pain because of “simple pleasures” like eating my favorite foods, some of which (GASP!) happen to be things that contain yeast, wheat, sugar, dairy or fruit.
    Also, positive attitude is totally in the eye of the beholder, so to speak. My “realistic” attitude (translation: pain happens; tomorrow might be less painful, but I need to plan ahead just in case it isn’t) is taken by some as “negative,” and some as “positive.” But a Pollyanna-ish ‘tude (like this author seems to have) combined with disdain for anyone who doesn’t follow that exact example is not only ridiculous, but harmful to others who may be dealing with illness or disability in ways that work for them.
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  6. Even though Don has a very visible disability at this point (complete with brand-spanking new wheelchair), we still get people who do this sort of “attitude” stuff.
    So, a friend of his ranted at another friend of ours (who then passed it on to me – oh, i love the chain of gossip) about how he didn’t like it when Don took his pain meds because it made Don “less fun to be around”, and if only he had a better attitude he’d get out more and be more fun.
    I cannot imagine what it’s like for folks with invisible illnesses.

  7. I can’t believe this woman. As a person who has struggled over the past year to get the right levels of her hypothyroid medication prescribed, things like CFS are not just a matter of “a good attitude”.
    It was hellish being unable to sit up, drink enough water to be hydrated and not be bloated, completely and utterly depressed without relief, and experience excruciating kidney pain. Before me and my doctor could find the right diagnosis for me, it was so very scary not knowing exactly why I was in such misery. Just because you can’t see it, doesn’t mean its not there.
    During all that, yes, a positive attitude that things would get better was all that kept me going sometimes, but to suggest that a sunny disposition is all that you need? My levels of disbelief are astonishing.

  8. Gosh, it would help if we were all professional athletes to start with, wouldn’t it?
    And it sounds as if she was misdiagnosed. Maybe she was suffering from simple exhaustion, because of a punishing schedule as a world title holder, compounded by the family issues she had – not CFS at all?
    Sophie – your knees hurt when you walk upstairs? Go figure – my bad knees don’t like to walk downstairs and don’t mind upstairs! Bushwalking down hills is torture! (but I don’t have CFS.)

  9. I’ve been instructed by doctors that my fibro, my anxiety, AND my endo would no longer be bothersome if I’d just learn how to think positive thoughts — the school of thought I like to call “Think Positive! YAY!!!” Because that just about captures how fucking ridiculous it is.
    Oh, and the roundabout explanations — stress feeds into pain therefore the sole cause of my pain is my stress and I’m morally bound to THINKPOSITIVEYAY in response — or that fibro is “just depression” (in that “depression is for fakers” sense) — etc. Saying the same damn thing, but with a fancy face to it to make it seem like they aren’t calling me a whining worrywart.
    And these are just doctors, and that’s not counting the medical professionals who, it seems, just couldn’t wait to refer me out to some homeopath or naturopath or chiro or somesuch, like they were so freakin’ giddy about it that it was quite disturbing. I think the reason for that is they simply wanted to believe that there was an easy fix, one that conveniently fit their prejudices, because if there wasn’t — if that stuff actually DIDN’T work — and they ever came down with anything like my condition — well, they were right screwed, weren’t they? But no, this way, if I refused or neglected to follow through on their excited suggestion, it was just my own fault for not having an open mind, or for getting something out of suffering, or something.

  10. Gah.
    If I had a dollar for every person that thought all of the ills of the world could be solved by ‘thinking in a posistive manner’ and nothing else… I had that one pulled on me by a Counsellor I was ‘suggested’ to see by my head of department – events over the year had begun to get me really down and it was affecting my work. Apart from telling me nothing new or helpful, she implored me to ‘think posistive’ to solve my problems. I don’t know about you, but it’s hard to ‘think posistive’ about moving house twice in 6 months, or having to live with parents that treated you and your husband like infants while you were living with them. Or your father totally discounting your job and how tiring it can be.
    The whole ‘think posistive’ attitude also reminds me of some people I have met that spout the ‘religion will fix everything’ line. We had a woman come to my school to talk to the year 8s about her time as a herion junkie. It was a really interesting time until she got to the ‘And then I found God and he fixed me’ part. *sighs*

  11. It’s everywhere, in every sphere, too, and at every ‘level’ of illness or injury. Part of how it can be so damaging for me is that I am already prone to beating the shit out of myself with pull-up-the-bootstraps nonsense: I would never inflict this kind of ‘attitude’ on anyone else, and get furious whenever I hear people doing it to others – but am quite likely to do it to myself. So thanks, docs and acquaintances, for helping me get or stay sick or hurt by supporting my tendency to be downright abusive in my expectations of my own body. I know not all women do this, but I do think we’re more prone to absurdly high expectations of ourselves to ‘just deal with it’ and press on being an uncomplaining hero of whatever kind – so this kind of swill speaks directly to an existing consequence of misogyny (which can be a major part of how we get hurt or sick in the first place, though certainly not the only way).
    Luckily, the longer I live, the less I do this to myself, and the faster I recognize the swill for what it is in most situations: the perfect marriage of magical thinking, horror of powerlessness, and outright misogyny.
    It’s weird what gets through my rationality, though. When a doc told me that I should treat my long-since neurologist-diagnosed serious and frequent migraines – putting “migraines” in now-famous airquotes – by putting some peppermint oil on my forehead because it would make me ‘feel’ like I was doing something and that I should cut my hair because long hair is vain and stupid and they were probably hysterical tension headaches, I laughed (and complained).
    But when my herniated disc and dislocated pelvic bone were characterized as a moral failing in karate? It took the better part of a (disabled) year to get through the mire of self-blame and fully accept that it wouldn’t have happened if I’d had appropriate supervision in training (and if there hadn’t been the extra-special-sink-or-swim-brutality towards women so they could ‘prove’ that they too can do martial art).
    Ugh, ranting/venting now, sorry (I think rants are contagious, Lauredhel). Point was going to be: in hard to diagnose and/or treat illnesses – even ones as ‘simple’ as depression (which, hello, is often fatal – and is chemical, not moral or attitude-based) or CFS or whatever other life-destroying illness not quickly or easily boxed and fixed, this stuff only gets worse and harder to cope with or defend against.

  12. I like the joke made by Laurence Clark (BBC Ouch! columnist) in his 12% Evil show at the Edinburgh Festival last year. Having reviewed the children’s literature at his special school, he noticed that the surefire cure for disability or chronic conditions seemed to be a combination of a) fresh air and b) Jesus. As an atheist with chronic asthma he is therefore f*cked.

  13. I can’t believe that doctor air-quoted your migraines, Theriomorph. Pratbutcket-fodder, for sure.

    ”[…]the faster I recognize the swill for what it is in most situations: the perfect marriage of magical thinking, horror of powerlessness, and outright misogyny.”

    Quoted for truth!
    Have I peeved here before at the potential ramifications of the “whatever doesn’t kill you makes you stronger” mindset?
    The magical thinking seems to be all over, too. I think some of it boils down to “Medicine can fix pretty much everything these days, so if it can’t fix you, it must be your fault somehow.” There are correlations here with social bootstrapping and the notion that “everyone’s equal now” – therefore, the reasoning goes, if you’re not a rip-roaring financial success it must be your own damn fault too. And the whole lot ties back in to “We’re in a post-feminist world now!” eejitry, too. Is there a word for this phenomenon? The privilege of progress?

  14. I’m loving the ranting, Theriomorph. One of the things that really highlights the gendered aspect of attitudes to disability is the contrast between this kind of “disability as moral failing” nonsense that is directed at people ( and I bet women are the targets more often than not) who have chronic and unavoidable illnesses or disability and the extreme outpouring of sympathy and enormous fund raising efforts on behalf of injured sportsmen. I’m not even talking about professional sportsmen but local club level footballers who receive spinal injuries during a game. I haven’t heard even a whisper of victim blaming directed at them, even though their injuries were avoidable and it will be a cold day in hell before a woman with spina bifida or MS or any other illness will be gifted with a purpose built house and all the equipment they need to maintain the highest possible quality of life, all funded through community events. My sister was part of a group of friends who nursed a young woman during the final months of motor neurone disease. Getting the appropriate equipment so that this woman retained some dignity during toileting proved virtually impossible but a guy who is injured in a game has millions of dollars raised on his behalf. Fucking screwed up society.
    If you are a woman and you have any form of illness, it will be used against you at some point, especially by those groups who are supposed to support people with illness and disability. DADHC in NSW attempted to have a woman with high functioning autism classified as having Munchhausen’s by Proxy because her children also had autism. Her DADHC case managers were clueless misogynists who had no idea how to communicate with someone with ASD and took the path of least resistance – blame the woman.

  15. I have recently heard that the landlady who evicted me for not meeting her high standards of housekeeping has now accepted (a decade later) that I am indeed disabled (she thought I was faking it). However I should be more able-bodied than I am because I’M NOT TRYING HARD ENOUGH.
    Am not sure if that is an improvement.

  16. Apparently the change in attitude can effect a cure even when that change occurs in a near-relative, not just the disabled person. I was told that I need to take up belly-dancing by a case manager. Apparently my son’s challenging behaviours are not related to his autism at all but to my very mild dysthymia. I look forward to the published article showing the causative link between parental dysthymia and autism. Of course this link was fortuitously discovered by the case manager immediately prior to our funding package running out and came with a side serve of shaming. “There are others worse off than you, you know.”

  17. su: Boggle. The case manager is all about the “refrigerator mothers” theory? And belly-dancing is the off-the-shelf cure-all for “dysthymia” now? Bleagh.

  18. I think it was just a post hoc rationalisation for not continuing our funding, Lauredhel. “We can’t afford the man hours” gets translated into “you don’t need this support” and furthermore you need to blah blah blah (my brain exceeded it’s daily limit for patronising garbage after the belly dancing suggestion).

  19. I really hate the bits that play into people’s sense of desperation.
    I swear, if a doctor told me at this stage that cutting off my foot would make Don’s life less difficult, I’d ask if I had to do it myself or if a doctor would do it for me. Talking to Don’s mom about it, she’s much the same – with the special bonus of having blamed herself for having obviously “done something” while pregnant to cause his disability.
    All this stuff – be happier, be healthier, move to someplace else, go to a different specialist, try this miracle cure, eat this miracle fruit, just get over it, it’s all in your head, all of it – it’s just so damned exhausting. It’s part of all that second shift for disability that Amandaw was talking about before, I think. Not only do PWD have to navigate the physical world, they have to do it all with such “helpful” advice – and have to balance how to say to well-meaning people that X is not working and do it in a way that’s Cheerful! And Nice!

  20. Woe, I has been moderated! It is obviously because I’m posting from work instead of setting up breakfast like a good little night auditor. I shall now get back to the grindstone, I guess. 🙂

  21. Ah, the old ‘change in attitude’ chestnut. Infuriating and dangerous nonsense.

  22. Living with is horrible illness is stressful enough, without the bias attitudes towards the illness. I feel some doctors are reminded when they see an illness like ME/CFS just how unpredictable life can be…..and this reminds them of their vulnerability….denial(for them) is the best way to protect themselves.

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