Conflict

When investigating the conditions variously known as ME, Chronic Fatigue Syndrome and Fibromyalgia you very quickly come to realise that it is a highly controversial issue.  There is a great deal of anger, considerable frustration and a plethora of polemics from all sides.  The fundamental problem is that no one is quite sure what these conditions are.  By which I mean that medical science has not been able to discover the mechanisms which cause people to suffer from the symptoms to which the names are applied.  There is an uncomfortable question mark at the very heart of the issue.  And it seems that no one is completely sure what to do with this uncertainty.  This is why I have the, admittedly rather naughty, tendency to call them by a new name: CUDs -- conditions of uncertain diagnosis.  But before we go on to reflect on this uncertainty at the heart of the issue let us look in more detail at the conflicts which have arisen and how they express themselves.

Varieties of conflict

Conflicts over words

In the October 2006 edition of ME essential -- the magazine of the ME Association five different names are given for the condition we are examining:

Chronic Fatigue Syndrom (CFS) (? another missing here?)
ME: Myalgic Encephalopathy
PVFS: Post viral fatigue syndrome
CFIDS: chronic fatigue and immune dysfunction syndrome

Some might also add Fibromyalgia to this list. It has also at times been called Royal Free disease -- because of an early outbreak; associated with a name common around the turn-of-the-century -- Neurasthenia and many connect it with conditions such as Gulf War Syndrome and Athletic Overtraining Syndrome. 
It has also had more popular and pejorative names such as 'yuppie flu'. Each of these names has a particular meaning.  Some are associated with particular locations such as the Gulf War.  Others are more medical and associated with a particular medical history -- such as Post Viral Fatigue Syndrome, reflecting the fact that many instances of this condition come after a viral illness. 
ME has remained popular in Britain while CFIDS is more common in America.  ME is a particularly interesting name for the interpretation of what the two letters mean has changed.  Encephalomyelitis was introduced in 1956 but is now disliked by doctors because its meaning 'inflammation in the brain and spinal cord' is scientifically unproven.  Encephalopathy, on the other hand, refers to a serious disturbance in brain function and/or structure and is therefore associated with neurological problems. 
ME remains the name of choice for patient organisations but doctors have been tending to move towards Chronic Fatigue Syndrome and I have heard some patients redescribe their condition as CFS.  These two names are now the front line of the conflict about the condition.  Patients groups feel that CFS diminishes their condition and fails to describe it adequately -- focusing as it does on only one aspect of the condition, the fatigue.  There is therefore a tendency to describe the condition as ME/CFS which reflects a desire, perhaps, to call a truce and find a common way of describing the condition.  Nonetheless it is almost impossible to use language to talk about the condition without in some way revealing your position and annoying other people!  Even my tendency to call it a 'condition' will no doubt irritate people who want to call it an illness.

Conflicts within the profession

One of the deepest conflicts over this condition is that between those who view it as essentially biological and those who see it as primarily psychological.  This is well illustrated in a very combative article by Yolanda Lucire.

The debate about chronic fatigue syndrome, as played out in popular publications and the media is replete with stories of charismatic physicians, fighting for the rights of their patients to be seen as having a 'real' disease with unarguably organic pathology.  Such doctors act as magnets for somatizing patients. The history of medicine illustrates that such physicians often fail to recognise psychogenic emotionally caused disorder in other forms as well.

This type of writing is not uncommon, many doctors and psychologists are convinced that the condition is essentially psychological, but that people are irrationally wary of this interpretation.  This has tended to make people who are unwilling to buy into this psychological interpretation skeptical as to whether psychologists have anything to contribute.  Psychological based treatments have, however, been increasingly popular because of the failure to find any clear organic basis which can then be treated.  CBT -- cognitive behaviour therapy has become particularly important in many treatment regimes and most recent research in Britain has been psychologically based.

Lay/medical conflicts

This increasing influence of psychologists in treatment of the condition has been the focus of much anger from lay people towards the medical profession.  They see it as a dismissal of their condition.  Our culture tends to be suspicious of psychiatric illness and it is much more acceptable to have an organic condition with a clearly agreed pathology.  This is clearly why patient groups push for investigation of the organic basis for the condition.

But the uncertainty around the condition has caused a more widespread unhappiness with the medical profession.  People find GPs frustrating because they may have little to offer, fail to value the patient's own expertise in the condition or dismiss them as 'moaners'.  Consultants and experts are also criticised for being too wedded to their particular theories and sometimes using people as guinea pigs.  Which is not to say doctors are never experienced positively, this is increasingly not the case, but most sufferers will have had a pretty negative experience at some point.

Political conflicts

All these conflicts over this uncertain condition have led to an ongoing political conflict which reaches even into the Houses of Parliament.

Recently NICE draft guidelines for ME/CFS have been put out for comment.  (www.nice.org.uk/page.aspx?o=368933).  This provoked a furious reaction from the ME Association criticising it amongst other things as 'not fit for purpose', 'a very unbalanced account of the benefits of CBT', 'a failure to provide information on the very early stages of illness' and 'a failure to provide an adequate description of many important aspects of management'.  Furthermore the All-Party Parliamentary Group on ME was even more scathing 'I am at a loss to know why NICE are doing this and what they hope to achieve' and 'I've read the damn thing.  It's hopeless'.

All of this illustrates the problem that we have in dealing with uncertainty.  Because the condition is uncertain, having no agreed organic (or psychological) origin we start fighting over it.  But for patients the issue is critical, because the condition is not understood and viewed sceptically it makes it much more difficult for people to get the support from social services that they need in order to live reasonable lives.  Many are living in fear that the support which they receive will be removed after their next medical review, even after they have gone through the long battle to get some support in the first place.  Government, however, is worried that because of the lack of diagnostic tools, the condition will become a tool for people to scrounge off the system.  Caught in the middle doctors find it an unrewarding area in which to specialise because it is so difficult to make any real progress.  Much better to be a cancer specialist or heart surgeon than scrabble around with something so uncertain and complex.

Sociological perspectives

There is a different way of looking at this situation.  You will not, however, find it in any of the medical papers, self-help books or publications by the ME community, at least not so far as I'm aware.  It does not have the answer, nor does it have some kind of privileged access to the truth but it is a perspective which needs to be heard and perhaps goes some way to explain the conflicts and could therefore contribute to a more unified and holistic approach.  It is the perspective of the social sciences.  Social scientists have been very interested in the condition and numerous papers have been written about it, charting the conflicts and the way in which meanings have been constructed and understandings contested.

A good example of this is Kristin Barker's book 'The Fibromyalgia Story'.  I would also recommend 'A sociological study of Chronic Fatigue Syndrome and the micro-politics of changing illness construction' by Neville Millen which gives an excellent overview of the debates and controversies .

Kristin Barker's book is subtitled Medical authority and women's worlds of pain which gives an indication of its purpose -- to examine how women's experience has been interpreted and used by medical authority.  It's great strength is the series of in-depth interviews with people who have been diagnosed with Fibromyalgia.  This enables Barker to gain a deep insight into the experience of sufferers and she succeeds in presenting an empathetic account of their 'illness narratives'.  But she does not just stop there, she presents a history of the Fibromyalgia diagnosis, illustrating how it is a socially constructed syndrome, yet without, in so doing, demeaning women's actual experience.  Rather she shows how biomedicine undermines the patients experience and why patients resist a psychogenic interpretation and insist on constructing biomedical interpretations which are in turn supported by the work of self-help groups.  I found reading the book a liberating experience, particularly because it enabled me to clarify my sense of unease about some of the self-help groups understandings of Fibromyalgia and ME.  It enables me, whilst remaining rooted in my own experience, to achieve a transcendent perspective by which I can look wider than my own story and so interpret my illness narratives better.

Fibromyalgia is therefore, in sociological perspective, a social construction -- something constructed out of people's experience, doctors interpretation of that experience and the prevailing socio-political climate.  It does not mean that it is imaginary -- I firmly believe the experience is real and not some kind of psychological creation, but the meanings we give to it and therefore the whole way in which we experience it, is socially constructed.  This is probably true for all illnesses but the uncertainty around the condition makes this even more important.  I believe the same could be said for ME.  In fact I believe Fibromyalgia and ME/CFS are essentially the same condition, Fibromyalgia is essentially a rheumatologists way of looking at the same symptoms and therefore emphasises the physical pain rather than the mental fatigue.  Whether you are diagnosed as having Fibromyalgia or ME/CFS depends partly on which doctor you come across and partly on the way your symptoms initially manifest themselves.  But it is the same mysterious condition particularly characterised by the uncertainty of its diagnosis.

The sociological perspective can get caught up in its own jargon and self-importance but at best it does provide tools to step back from the conflicts and look at the uncertainty surrounding ME/CFS.  It is not a matter of some people being right and others wrong but of us all seeking to find some way of handling this disabling and perplexing condition.  In this perspective the ME/CFS/Fibromyalgia story provides us with an opportunity to wrestle theologically with the uncertainty that so often surrounds illness.  Can we embrace this uncertainty or will we continue to search for an unachievable certainty that only limits our experience of life and potential for growth and joy?

Theological perspectives

Medicine and, like all of life, is filled with uncertainty.  The longer I practise medicine, the more I know how little we know.  Yet people continue to believe that science will eventually discover the cause or cure of all variables.  They demand results 'yesterday,' then cry betrayal when science proceed slowly.  They are surprised when science answers one question only to reveal ten more

Dr Don Goldenberg, a Fibromyalgia specialist, develops this perspective in his book Chronic Illness and Uncertainty, one of the few books which seeks to embrace the uncertainty that is at the heart of the ME/CFS/Fibromyalgia experience.  I believe, however, that what is lacking from this wise and perceptive book is an explicit engagement with the spirituality of illness : a spirituality which can embrace uncertainty.  This is not something Christians have always been good at, we have often been too quick in our search for certain knowledge and that this has tended to create unhealthy religion and oppressive politics .  Nonetheless there are traditions which acknowledge the centrality of uncertainty and doubt in Christian faith, embracing the mystery of God, while still working towards a meaningful and practically useful system of belief that can be trusted.  It strikes me that this is exactly what is needed when you are seeking to live with Chronic Fatigue Syndrome, Myalgic Encephalomyelitis, Fibromyalgia... or whatever you would like to call it!

The experience of living with this condition is one of constant uncertainty.  The initial experience is particularly confusing: you are feeling unwell but there is nothing by which to orientated yourself.  People might mention ME, but this is more than likely to have negative connotations -- a vague psychosomatic illness which may or may not be real.  People seem to find achieving a diagnosis initially satisfying, for they have finally found some firm ground on which to stand.  But the initial certainty soon starts to fade away as it becomes clear that the diagnosis is not a passport to cure and acceptance but merely a gateway into a different kind of uncertainty.  Which treatment will be effective?  Is this new therapy worth trying?  Who is going to accept the diagnosis?  How will my family react to it -- and what are the bureaucrats going to make of it?  Illness of any kind brings with it uncertainty as you wonder how long it is going to last and whether treatments will be effective.  But when a diagnosis is still a contested and uncertain discourse the uncertainty is considerably magnified.  It is therefore critical to have a spirituality which can embrace uncertainty.

Spirituality and uncertainty has not been a subject that has attracted enormous attention.  Doubt has been a more popular subject for reflection -- but if anything uncertainty is a more troubling phenomenon, if you are doubting at least you know what you are doubting!  Uncertainty exists when you are not sure whether to believe or doubt, when there seems to be nothing solid to grasp.  Yet maybe it is possible for this to be a liberation.  When I was physically at my worst -- my body full of inexplicable pain and I had even lost my voice I experienced a kind of epiphany.  I remember thinking that my life would have to consist of nothing more taxing than 'thinking beautiful thoughts'.  My ambitions were all shattered, my plans meaningless all I could do was fall back into God.  Everything was uncertain except for my awareness of the presence of God.  So strange and intangible is this awareness that no amount of worldly uncertainty can take it away.  I just had to let go into it.  I realise that this is a very personal experience and I find it difficult to justify or to explain it but it remains.  And what is more it starts to seep out into my active life.  I did not remain in that place of physical incapacity but gradually I found my way to some answers -- not solutions to all my problems -- but some very practical responses which I will go on to describe later.  Life, it seems to me, is not either uncertainty or certainty but an acceptance of both extremities .  In accepting the fundamental uncertainty of life -- especially for the chronically ill -- and accepting that life is good and from God we find our way to small certainties.  Nuggets of reality which we know to be true, which we can hold onto and which enable us to take the next step.  I do not need to be in control of everything but I accept that there are some things I do not know and some things that I do know.  This is the journey of faith which finds itself through walking in faith, developing reliable beliefs from that experience and so scouring the self into the world and mapping out a way of life.  In this way I believe the uncertainty of chronic illness gives us deep insights into the life of faith: by accepting uncertainty we discover and make accessible what is true and reliable.

The trouble with certainties

As I mentioned previously I have come to the point where I believe I have some certain knowledge about my condition.  Below I tell this story and go on to examine the dilemmas it has created for me.

Trigger points

I have for many years suffered from unexplained pains in many parts of my body.  They began in my hips but over the years spread to my feet and hands and more recently began to affect my lower back, shoulders and even, curiously, my ears.  Things came to a crisis when they began to make speaking painful.  Doctors were never able to give me any kind of explanation, let alone treatment.

Eventually I met a doctor who was prepared to spend some time listening to my symptoms.  He was as perplexed as I was but suggested that I explore connective tissue disorders on the Internet.  As I began to roam through cyberspace I found an American website by a woman who claimed to suffer from Fibromyalgia.  This did not particularly interest me but I was drawn to a book which she recommended called to the Trigger Point Therapy Workbook by Clair Davies.  I purchased the book and found that it was based on some pioneering work by two doctors JG Travell and DG Simons.  In two large medical books called Myofacial Pain and Dysfunction: the Trigger Point Manual they trace the referred pain caused by knots in muscles.  Davies takes their work and shows how self applied massage can release the knots and so cure the chronic pain which they cause.

My first efforts with the book were disappointing.  I tried massaging my sternocleidomastoid muscles to relieve headaches but without success.  I gave up for a while.  Then I was having great problems sleeping because of pain in my shoulders.  One night I got up and started massaging my Trapezius muscle with a golf ball against the wall and, amazingly, I managed to hit the right spot and all my pain immediately disappeared!  The pain did return but gradually I was able to resolve the problem.  My Trapezius causes me recurrent problems particularly in concert with my Levator Scapulae but I now know how to deal with it.

Over three years I have found trigger points all over my body and I have gradually learned how to deal with them.  Recently I have really made progress with my hands by treating muscles all the way from my Scalenes down to the Interosseous muscles in my hands.  Last month when a friend was complaining of pain in her shoulder reaching down her arm I was immediately able to identify trigger points in her Scalenes.  I have often found I am able to identify trigger points when friends have been complaining of persistent pain.  Not that this necessarily provides an instant cure -- there is often more than one trigger point involved in causing pain and they are not always easy to find.  Also massaging trigger points, especially when they have never previously been treated, can be excruciatingly painful.  This often makes people reluctant to pursue the treatment and explore the contribution that trigger points are making to their discomfort.  Trigger point therapy also means we have to take responsibility for our own health rather than passively being treated by experts.  It involves significant commitment and work and it often seems that people are reluctant to engage with this.

Although trigger point therapy has helped all my pain it definitely hasn't been a miracle cure.  I still really struggle with the pain in my feet even after having identified and treated all my trigger points.  It seems to be the case that in cases of chronic pain once trigger points are deactivated the muscles need to be stretched and exercised in order for the pain to be properly dealt with.  I am learning all the time.  But my experience strongly confirms Clair Davies's belief that there is no point in stretching and exercising muscles until trigger points have been dealt with.

The really good thing about trigger points, apart from the relief they've been to my pain, has been the empowering way they've helped me understand and take control of my own body.  I have also enjoyed the learning process and have made some interesting discoveries myself.  My voice problems have been a great concern to me, but doctors -- even ones I've been impressed with -- have had nothing useful to offer me.  I mentioned previously about pain in my ears and I found that by massaging the Masseter muscles in my cheeks and others in the same area I have been able to more or less deal with this problem.  I also found, most surprisingly, and this seemed to help with earwax problems.  As I was fiddling around looking in my mouth for trigger points I began to think about my tongue.  I had enough anatomy to understand that this was a muscle and also be intrigued that Clair Davies doesn't mention the tongue.  I therefore began to start massaging it and found four very painful spots on side of my tongue towards the back.  They felt very like trigger points so I persisted with them.  Quite soon I noticed that my voice seemed to be less painful -- not perfect but definitely better.  Had I discovered a new trigger point?  I don't know, but it certainly made a lot of difference to me.

I know my situation is unusual.  I seem to have some kind of propensity for getting trigger points -- some people seem to think that trigger points are related to the amount of calcium in the muscles, so maybe this is an explanation for my troubles.  Most people seem to suffer from trigger points at some time or another and it would appear that the popularity and success of massage is related to the existence of these knots in our muscles.  But my experience has given me an unusually extensive understanding of how trigger points work and how they can be dealt with by self applied massage. 

Trigger points and health professionals

My greatest disappointment is that it has been so hard to talk to doctors and other health professionals about trigger points -- they immediately think I'm talking about some kind of esoteric acupuncture or other alternative practice when in fact there discovery comes out of mainstream medical research.   Even practitioners who have heard about trigger points don't seem to have the depth of knowledge about them that I have or view them in a somewhat different way.  I am well aware that trigger points are not the answer to all my problems but I'm equally convinced that they must be central to my treatment.  I can see little point in working with a doctor or other therapist who isn't willing to take on board what I have learnt about my body and work with that.  The difficulty is working out exactly how that is going to happen.  The medical practitioner who enthusiastically takes on board the learning of the patient is a rare case indeed.

The trouble is that I am absolutely certain that trigger points are central to my condition and that treating them by self applied massage must be a key part of my treatment.  I am aware that this leaves much uncertain: why I get so many trigger points, what causes the trigger points and why trigger point massage has only reduced the amount of pain I suffer rather than eradicated it.  Nonetheless the certainties that I do have in regard to trigger points makes it difficult for me to relate to people that don't have the same level as certainty as me.  I would hope that my certainty is not blinkered or naive and yet, while I wish to avoid dogmatism, I also don't want to deny what I have learnt through years of practical experience and careful reflection.  Is it possible to develop a partnership between a patient's experience and a doctor's professional skill?  Does they come a point when the doctor becomes the learner and the patient the teacher?  How does the patient's experience gain equal validity and be shared with a wider learning community?

Contextual theology

This reminds me of the struggle for Contextual theology which has been one of my major interests.  Is theology what is done in universities and ecclesiastical institutions or is it what is worked out in the various contexts in which reflective Christians find themselves?  Is Contextual theology merely working out the particular implications of predetermined doctrines in particular marginalised communities or is it in some way what all theology must be, whether the context is a Mexican rubbish tip or the Vatican curia?  Is power always to be held by a central professionalised elite or is control over what is true more widely dispersed amongst all people -- and if it is how then do we arrive at some kind of agreed to truth?  I feel as if I could go on endlessly rehearsing these questions!  They seem to me central to what it means to be a human being in our postmodern world.  But it will also appear that the expertise which has been developed particularly out of the experience of liberation theology in Latin America has much to teach us in thinking about how to manage the conflicts involving certainty and uncertainty in the present debate about ME and Fibromyalgia.

Patient groups are in many ways like the base communities that have been so central in liberation theology.  Within the patient groups new understandings have developed but sympathetic doctors have been particularly important in the same way in which theologians such as Gutierrez and Boff have given shape to the reflections of the base communities, and enabled them to gain international credibility.  Books such as Robert Schreiter's Constructing Local Theologies warn us not to become romantic about the community as a theologian and we need to learn to develop a critical perspective on patient groups without dismissing them as blinkered moaners.  We need to find a way of bringing the insights of patients and patient groups into partnership with the expertise of doctors and avoid the situation which seems to have happened in the Roman Catholic Church whereby liberation theology has been repressed because the institution has felt threatened.

It seems to me that the struggles around ME and Fibromyalgia have a wider significance.  They are at the forefront of attempts to reassess the modern medical experiment of the last 200 years as they confront medicine with a seemingly intractable problem with which it seems ill-equipped to honestly engage.  Perhaps in the same way that out of the intractable problems of Latin America liberation theology has emerged to challenge and shake the theological establishment a self-critical ME/Fibromyalgia community could help create a new, more holistic medicine.  A medicine where partnership between doctor and patient, sufferer and expert creates a kinder and more effective community of healing.

Wilderness

Wrestling with the monster

For all one might want to be positive about ME or Fibromyalgia it needs to be recognised that suffering from these conditions is like wrestling with one's own private monster.  It is a relentless battle to manage the symptoms, manage friends and family, manage the doctors and the 'disability police' who are constantly checking out whether you are worthy of support from the State.  Very often it feels like a hand to hand wrestling match with Grendel after which there is no relief but only even more arduous battles with Grendel's mother !  Everyone who experiences these conditions has to find their own way of fighting the battles.  How then does one survive?  Before offering a personal perspective which draws on the ancient Christian symbol of the wilderness I will examine a few ways that I have seen people coping.

Different ways to handle chronic illness

Anger

Anger is something that most people with chronic illness experience.  Why should I be experiencing this?  Why are the doctors so useless?  Why does no one ever believe me when I tell them what I'm going through?  This is all to be expected.  But it gets more complicated when we consider what people do with their anger for experiencing anger is one thing but how we manage that anger is something else.

Personally I find the anger difficult because it tends to worsen my symptoms.  It makes my muscles more tense and tends to encourage trigger points to develop.  And yet being in pain or being physically limited tends to create an underlying sense of anger and frustration which can easily burst out.  Anger is, therefore, in many ways another monster with which I must struggle -- very much Grendel's mother to the Grendel of my pain.

For other people anger becomes much more central to their struggle.  It can be a motivating factor to struggle against the condition and medical or public ignorance.  For others it seems to have a more negative impact keeping them trapped in a negative resentment which sends their conditions spiralling down into a chaotic situation when nothing makes any sense.  In this situation, it seems to me, that people become enslaved to their monster.

Medicalisation

For some people finding heroes in the fight against the monster is what is most important.  Doctors who will give them a diagnosis.  Therapists who will enable them to relieve their symptoms.  Drugs and other treatments that will provide them weapons in the ongoing battle.  Everyone needs allies of some kind -- certainly my Trigger Point Therapy Workbook is my magic shield which enables me to keep Grendel at bay.  But there does seem to be a tendency in our culture to see doctors as the Beowulf who will come and defeat Grendel while we are the Hrothgars who are in despair until the hero comes.  We want the magic sword wielded by a hero that will cut off the monster's head and bring us peace.  This of course is problematic with the conditions we have been examining because medicine is unable to provide that magic weapon.  Doctors cannot be the hero who solves the problem they can only be allies who will fight alongside us in the shield wall.

Pilgrimage

Fighting the monster is not the only way of telling the story of ME/CFS or Fibromyalgia .  Some people experience it as a rebirth story -- where ME rescues them from an over hectic life and they are able to rediscover themselves.  For some people, perhaps, it turns into a tragedy -- it is the flaw which finds them out and they are not able to recover.  Personally I have found it more helpful to view my story as a quest or a journey, a search for a new way of being.  This certainly involves fighting monsters but that is not the whole story, there is beyond the battles and fight another deeper story which is a pilgrimage.  It is a quest for meaning but in a very embodied way, a search for a way of living with chronic illness -- fighting and defeating it when necessary but also recognising that sometimes you need to come to an accommodation with your monsters.  Sometimes the monsters are not quite what they first appeared to be -- they can be a kind of Gollum , not exactly good but necessary in order to complete the quest.

In particular I feel these conditions can lead us into a wilderness.  A wilderness is a scary and dangerous place but it is also a place which has a role to play in human affairs cut off as it is from ordinary human life.  It is a place where new kinds of freedoms can be discovered and new insights into human nature discerned.

Wilderness and the chronic illness experience

The wilderness experience of chronic illness came home to me when reading Adrian Rose's book Love Never Fails.  This is the story of a young man's struggle with severe ME in which he is bedbound for many years.  As I read the story I was struck by how this young man went through a wilderness experience before discovering a strong evangelical faith.  Those long years of apparently doing nothing were in fact moulding his soul and creating a new person in a way that was similar to the experience of the desert fathers in 4th century Egypt.  Even though he adopted a form of evangelical Christianity which I do not normally find particularly appealing there is an authenticity and genuineness about his story which I found impressive.  It got me thinking about the way in which chronic illness is a modern version of the wilderness.  In the natural world modern transport means that the wilderness is not what it was and we do, perhaps, needs to find other ways of learning the lessons which only the desert can teach.  I have therefore come to believe that a wilderness spirituality is one way of engaging with the monster of ME/CFS -- a way which enables us to enter on a pilgrimage.  Abba Joseph of Thebes -- one of the Egyptian fathers suggested that there are three kinds of people who find honour in the sight of God.  The first of these are those who are ill and tempted and yet accept all these things with thanksgiving

The connections between wilderness spirituality and chronic illness are developed by Andrew Louth in his book The Wilderness of God.  He describes the relationship between Charles de Foucauld and the Abbe Huvelin.  De Foucauld is famous as a modern desert father who lived in the North African desert and Huvelin was his spiritual director.  But Huvelin also suffered from severe and persistent migraines

It seems to suggest that Huvelin lived in an inner wilderness, a desert within, that -- like the literal desert -- afforded him no sense of security, no place of comfort.  It suggests we should see Huvelin as a desert saint struggling in a barren place, inhabited by demons quite as terrifying as any St Anthony faced

Migraines are similar to ME/CFS in that they are poorly understood and yet widely experienced.  They isolate not merely because they are a severely unpleasant experience but because they do not fit into any medical explanation.

Chronic illness is not, of course an experience which is chosen in the way in which the desert fathers chose the wilderness but it is possible to choose a wilderness spirituality as a way of approaching chronic illness.  I am not offering wilderness spirituality as the way to deal with chronic illness it is just one option but I believe it has particular strengths.

A wilderness spirituality of chronic illness

I would suggest that a wilderness spirituality can be characterised in four ways:

• Withdrawal
• Persistence
• Acceptance
• Connectedness

A wilderness spirituality is most obviously a spirituality of withdrawal from the ordinary world.  This is exactly what is imposed on people with chronic illness but we gain some strength by not fighting against this withdrawal but accepting it.  It will not necessarily continue but it is our situation now and there are things to be gained from it which are not possible when we are caught up in the busyness of the world.  Prayer and meditation are obvious possibilities but sometimes these can just be pious distractions from the stillness which is at the heart of withdrawal, people suffering from ME/CFS often just require stillness -- noise can be difficult and the needed to achieve something can easily become another pressure which hinders healing.  I do not understand how it happens but I know that great strength can be gained from learning to be still.  This kind of stillness often leads into activity but it is an activity without any hint of the frenetic -- an activity which is peaceful and persistent.

Persistence is another characteristic of wilderness spirituality.  The desert fathers tell of one of their number who spent 14 years in the wilderness overcoming his anger.  They were suspicious of people who went wandering from one place to another, recommending that monks stayed in their cells for that would teach them everything.  Persistence is very obviously necessary for people who have chronic illness.  Whilst one needs to be open to new treatments, always looking for the solution to one's illness seems to me a profoundly unsatisfactory way of living.  One theme that is very evident from the literature written by people with ME/CFS is the need to find your path and stick with it -- Adrian Rose's story is a good example of this, he was lured into all kinds of treatments conventional and alternative, but he needed to keep true to his emerging Christian faith in order to find his path.

It can be that this kind of persistence makes a person blinkered and narrow but a distinctive characteristic of wilderness spirituality is that of acceptance -- the refusal to be judgemental.  I believe that the struggles of people with ME/CFS or Fibromyalgia have some tendency to make them less likely to be fanatical.  You are faced so profoundly with the weakness and mystery of human experience that it becomes less easy to believe blindly in simple solutions.  This is very noticeable in Adrian Rose's story, he did go through a brief period of intense commitment to Christian healing but soon came to realise that things were not quite as simple as he first believed.  A similar eirenic approach seems to have been at the core of Abbe Huvelin's spiritual direction.

This acceptance and refusal to judge which is so central to wilderness spirituality means that there is also an openness to other people.  The world is not seen as a spiteful place in which everyone and everything is conspiring against the sufferer but it is rather a place of connectedness.  Although the sufferer's experience is unique, it does not isolate for we all, in one way or another, suffer and thus share a common humanity.  We therefore come full circle.  Wilderness spirituality is a spirituality of withdrawal but what is so often misunderstood is that it is not a spirituality of escape.  The monk only withdrew in order to learn how to love.  The desert fathers are often quoted as valuing the one who cares for the sick equally if not above the monk in the desert.  Thus the choice of a wilderness spirituality for those suffering from chronic illness is not taken in order to escape from their suffering or a vindictive world.  Rather it is done in order to learn how to reconnect and become a living, nurturing part, once more, of the great web of human life.

Bibliography

Claire Davies.  The Trigger Point Therapy Workbook.  New Harbinger Publications 2004

Janet Travell and DG Simons Myofacial Pain and Dysfunction: The Trigger Point Manual.  Lippincott, Williams and Wilkins 1992