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ME/CFS: A disease at war with itself

Persuasion Smith shares some thoughts on the stigma that comes with ME/CFS …

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We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.

 It is not just a case of stigma. Yes, who wants to admit that they have ME/CFS? But then who wants to openly admit they have AIDS or hepatitis C, or that they wear a colostomy bag?

 All illnesses are stigmatised: when you get ill people prefer to stay away. As Chaucer put it hundreds of years ago, ‘To seek … the company of loathsome lepers … there was no decency or profit in it.’

Society likes to keep its ‘other’ firmly at bay. It is threatened by disease, even if it is not physically threatened, because the ill bring chaos to our culture’s accepted ideas of what is normal and therefore valuable.

Severity is an issue here. Even if you tell people you have MS, so long as you are still quite well with it, as many people are, then you are going to appear less threatening and will be ‘allowed’ to continue as a well person, despite your label. But your label still marks you out as different.

 This does apply to our disease also. You are more likely to be viewed sympathetically, if you are mildly affected and can continue, even in a stunted way, the normal activities of life: relationship, kids, work, social life.

 But ME/CFS carries a double stigma: stigma-max. We are the ‘other’, but we are something else too.

 We are viewed as claiming something we shouldn’t, i.e., the space which ‘real’ or ‘genuine’ sick people occupy. This is ironic since the ‘special space’ is nowhere any ill person wishes to reside.

For us to claim this is deemed highly suspicious and, frankly, despicable.

 We are seen as untrustworthy by insisting that our disease is physical rather than psychiatric (even though the latter is also often ‘physical’ since it affects the brain) so as to award ourselves credit and status. Again ironic, since credit and status is hardly endowed to the so-regarded ‘real’ diseases except in the form of dubious accolades such as the ‘brave fighter’ or ‘tragic victim,’ etc.

Interestingly, even quite severe depression (I exclude schizophrenia and other psychotic disorders which are heavily stigmatised) is often more sympathetically viewed than ME/CFS because at least sufferers ‘accept’ their diagnosis.

We, on the other hand, are not accepting the position accorded to us. We are misbehaving. This goes somewhere towards explaining the often rancorous and punitive attitude towards ME/CFS from the larger community, be it medical, familial or social.

 What effect does this have on the sufferer? A hugely debilitating one.

 It means that we have no identity, nowhere to put ourselves comfortably within this illness. We are left scrabbling around to cobble together some kind of identity in an ad-hoc way without even a reliable name for the disease that tortures us. We doubt our own symptoms, we doubt others’ symptoms.

 This insecurity and lack of integration with the illness, penetrates the ME/CFS community. There is no doubt that we provide each other support and friendship but we also argue amongst ourselves, sometimes bitterly.

Who has ME? Who has CFS? Which is the ‘real’ disease? Which is worse? Can you have ME/CFS and still work? How can you be mildly affected if the primary symptom of the disease is  ‘severe’ exhaustion?

My friend with ME uses a wheelchair but I’m more ill and I don’t. Another friend only suffers pain, I suffer from fatigue … and the comparisons and self-annihilating disbelief and acrimonious competitiveness continue.

I wonder if other diseases have these battles within their community?Do the severe MS sufferers hate the mild ones since it is on the back of their paralysed bodies that the fearsome reputation of the disease is based, while all the more ‘well’ sufferers get on with their lives? If they do, I suspect they are still not quite as at war with each other as we are.

 It is not news that a group that is oppressed and discriminated against falls upon itself. That’s how  factions in revolutionary groups develop. The revolutionaries arise from an oppressed and discriminated segment of society, but then start bickering and infighting.

 Would one definitive name for this disease stop us tearing ourselves apart? Would it inhibit those outside from undermining us? Not unless the science supports it. Unfortunately, our Frankenstein name still encompasses disparate groups suffering from that vague and meaningless term ‘fatigue’ chucked into the stew of ME/CFS. Everyone knows the stew stinks, but that is a subject for another time.

For further reading:

See the author’s blog: http://visitingmrssmith.com

Sign the petition to get ME/CFS a research budget of $250 million a year!
There's a US petition and a global solidarity petition here with a long-term target of 50,000 signatures. Time we were on an equal per-patient funding basis with similar diseases!

{ 55 comments… add one }

  • jimells October 6, 2014, 3:48 pm
    JalapenoLuv

    Finally, each person adds to global warming and uses up health care dollar, especially CFS patients, so sticking around longer harms the group as a whole.

    There must be something seriously wrong with my cognitive abilities today. I keep thinking your message is suggesting that I should die in order to save money and save the planet from global warming. But that can't be right. No one here would ever suggest such a thing, I'm sure of that.

  • persuasion October 6, 2014, 5:47 pm
    JalapenoLuv

    That's true persuasion. If the norm for the elderly became euthanasia centers then the ones electing not to be euthanized would be questioned.

    There's nothing wrong with voluntary euthanasia per se (though I do think there are question-marks surrounding the pressure the ill and old might feel to get rid of themselves due to the climate of functionality the world seems obsessed by at the moment). I don't think anyone would agree to involuntary euthanasia, surely!

  • persuasion October 6, 2014, 5:53 pm
    Ren

    A counter opinion to post #48:

    It's sinister to use a spiritual belief system to encourage people who need medical care to not seek and/or accept medical care. It's sinister to further justify this by citing global warming.

    Individuals with CFS are as worthy of healthcare and healthcare funds as any other individual or group of individuals who need healthcare. You (the reader) whoever you are: You are worthy of the goodness that humanity through the millennia through blood, sweat, and tears has discovered, developed, and preserved.

    Faith healing should not be enforced, and faith healing is not an ethical solution to the problems caused by modern consumerism and population explosion.

    There is definitely a feeling that ME/CFS patients shouldn't be bothering the medical profession (because they don't take us seriously). But also that not being able to be a productive person in the conventional sense (earning, providing, contributing to society) lowers our self-esteem and makes some of us feel we're not worthy.

    Of course, we are worthy, and actually even a person who lives entirely on their own – perhaps having no impact at all on anyone else or society at large – has worth.

    Plenty of examples of hermits being held up as worthy examples of the highest form of human.

    We shouldn't define our worth by the standards of 'normal' society because who says that 'normal' society is right?

  • persuasion October 6, 2014, 5:57 pm
    jimells
    JalapenoLuv

    Finally, each person adds to global warming and uses up health care dollar, especially CFS patients, so sticking around longer harms the group as a whole.

    There must be something seriously wrong with my cognitive abilities today. I keep thinking your message is suggesting that I should die in order to save money and save the planet from global warming. But that can't be right. No one here would ever suggest such a thing, I'm sure of that.

    I think it's just a feeling a lot of ill people get that why should we take up space because we're made to feel so useless. It's hard to feel useful if you're not being useful 'out there.'

    But why should anyone be useful? Perhaps doing nothing is more useful than doing something? At least no harm is done.

    We've got to start believing that we have as much right as anyone else to be here even if the state has to support us. We live, thank goodness, in a relatively civilised society still.

  • jimells October 6, 2014, 7:13 pm
    persuasion

    But why should anyone be useful? Perhaps doing nothing is more useful than doing something? At least no harm is done.

    Certainly for people working for the war machine doing nothing would result in much less suffering.

    Sometimes when I hear people complaining about slackers, I point out that perhaps they are fulfilling a very important role in society by being an example of how not to live. On the other hand, perhaps there really is a right to be lazy.

    Fifty years ago, when automation was just starting to affect manufacturing productivity, we were told how someday we would have leisure time and retirement because fewer workers would be needed to produce the stuff we need to live. Something happened to that idea and now it takes three jobs to support a family instead of the one it took when I was a kid. Instead of working to live, now we live to work, and the "Prime Directive" is Work or Starve.