Practical issues in the management of chronic illness
towards identifying tools for change

This paper will be looking at some tools that are available for changing the way we experience illness and which can make real a holistic approach to medicine for the individual sufferer.  It will be particularly geared to the individual suffering from chronic illness.  In some ways it is a reflection on the NHS expert patients programme as outlined in the handbook Self-Management of Long-Term Health Conditions -- a handbook for people with chronic disease 2002.  The handbook is useful because it illustrates an emerging approach to chronic pain and reflects many contemporary attitudes.  Although I have not myself participated in the Expert Patient Program I have participated in a similar programme run at St Thomas's Hospital to help people manage their chronic pain.  Although these kinds of programmes are a positive innovation, personally I have found them somewhat limited particularly because of the lack of attention to issues of spirituality or meaning and it is this which I will first address.

Spirituality and the self

The Expert Patient Programme is very sensible.  It is very rational and well rooted in common sense.  It tells us that we can choose how to manage our chronic condition

You can choose to:
         suffer and do nothing
         just take your medicine
         or take charge and be an active self manager

In the first chapter it gives seven self-management steps which involve deciding what you want to achieve, planning to achieve them, putting your plans into action and giving yourself a reward.  I'm sure people do find this useful but something about it always makes me feel uncomfortable.  In particular I never liked the idea of rewards -- I don't want to give myself rewards, it makes me feel like child who's been given a sweet for being good.  There is a different way of experiencing illness and medicine, described by Dostoevsky in his obscure but brilliant book Notes from Underground.  When I first read this as a teenager it was a revelation I thought "Yes this is what life is really like".  It starts:

 I am a sick man... I am an angry man.  I am an unattractive man.  I think there is something wrong with my liver.  But I don't understand the least thing about my illness, and I don't know for certain what part of me is affected.  I'm not having any treatment for it, and never have had, although I have the greatest respect for medicine and for doctors... I refuse treatment out of spite.  That is something you will probably not understand.  Well, I understand it.  I can't of course explain who my spite is directed against in this matter; I know better than anybody that I am harming nobody but myself.  All the same, if I don't have treatment, it is out of spite.  Is my liver out of order?  -- let it get worse!

We live in a very rational world.  It is all targets and outcomes, success and achievements, rewards and the little luxuries that make life sweet.  But as was demonstrated in the recent BBC TV series Life on Mars, with its return to the messy world of the 1970s, this orderly rational world can be very dull.  Sometimes, especially when we are pushed to the edge, we want to return to something more real, more visceral... more human.  This is the problem with the Expert Patient Programme, at least as described in the book -- I suspect and am told that the actual meetings when people get together are much more real.  Rationality is only a secondary tool, healing perhaps springs from a more emotional and visceral place -- what I call spirituality.

Spirituality, in its modern usage, is essentially about the meaning that we find or give to life.  It is, perhaps, where we can hold together the rational, sensible parts of us with those more emotional and visceral reactions to life which tend to come to the fore when we are ill.

Finding meaning

The expert patient approach seems to be telling us to find meaning in our illness by rationally managing it so that we can achieve our life goals.  Questions such as 'why am I ill?' or 'what have I done to deserve this?' are not addressed.  This is fine but we do nonetheless tend to find to those questions seeping into our minds along with other such awkward questions as 'what's the point of it all?' and 'what is this illness trying to tell me?'.  These all tend to undermine the 'rational' approach and cause us to look for bigger stories which might help give us a bigger meaning.  Some religions might tell us to submit to the will of God and accept our suffering, not a very popular notion in the West, but as was demonstrated when Sri Lankans were interviewed after the tsunami, it has a dignified strength.  More popular in the West are new-age notions that in some way we have brought the suffering upon ourselves and we must 'listen to our bodies'.  Christians might seek to hear the word of God in their pain, as St John Chrysostom said 'it is not in vain, nor without reason, that we are subject to illnesses'.  We all need to find some story which can encompass not only our physical experience but the way it makes us feel and the questions that it causes us to ask.

The Battle with Despair

Illness threatens to drag us into despair.  It causes anguish to rise up in our souls.  If illness is a monster which we must overcome -- like the monster Grendel which Beowulf fought with his own bare hands, then despair is Grendel's mother -- the second monster which threatens to overwhelm our defences.  This is one reason why a rational approach may let us down -- calm rationality tends not to be much use in the face of gnawing fear and overwhelming anguish.  Certainly calmness and rationality can have their uses -- as they do for the General overseeing the battle from the hilltop, but in the pit of the battle it is the more visceral qualities of courage and bloody-minded determination which are likely to be of more use.

In the struggle with illness -- especially chronic illness, we need to develop a confidence in our own ability to survive.  This may not necessarily be a confidence in our ability to overcome the illness -- death or disability may be inevitable but we need to find some way of feeling that we are still worthwhile and retain a basic human dignity.  Again there are different ways of finding this confidence.  The way other people treat us will have a big effect -- if our illness is distrusted by friends and family it will take a very strong personality to hold onto self-confidence.  Similarly if we feel God is punishing us and there is no way out, this can be oppressive and restrict our ability to respond effectively to our illness.  But any sense of being loved -- whether that is human or divine, will strengthen us and give us some perspective on our illness.  We do need perspective and here the calm rationality of the expert patient approach can be helpful -- the battle can't be fought just by the soldier on the front line we need the General’s eye view from the hilltop.  This will help us make sensible decisions and improve our condition.

We therefore need the courage and strength to fight our illness on the front line of pain and anguish but this needs to go hand-in-hand with a wider perspective: a rational weighing up of options, a determination to pursue programmes which will help us and the wisdom to resist things that don't help us.  This will also enable us to co-operate with people who can help us -- family and friends but also doctors.  The Expert Patient Programme is certainly correct in saying that we can make choices about our illness.  There is no illness, apart from states of unconsciousness, that won't benefit from us deciding to take responsibility for ourselves and manage things as best as we can.  But we must also be gentle with ourselves, recognising the powerful emotional forces that are unleashed in us and that being sensible and rational is not always the best approach.  Illness is a crucible for the formation of the human spirit.  It can literally make us or break us.

Control, management and planning

Although I have argued that management and planning is insufficient to create meaning in the face of chronic illness this does not mean that it isn't important.  I have found that the distinctive characteristic of people struggling with a chronic illness is that they have to exert significant control over their lives, otherwise they descend into chaos.  That busy, energetic life full of family, friends and interesting work with the occasional spice of carefree adventure which seems to be the modern ideal is not possible, rather life has to be reimagined in a quieter and more controlled fashion.

The Expert Patient model provides a template for this more controlled life although I suspect that few people actually follow it religiously -- in fact I suspect that it operates in much the same way as the monastic ideal did in mediaeval times.  It is aspirational and does affect practice but does not very accurately described most chronically ill people's day-to-day life.  Verity Reds Diary -- a story of surviving ME, an interesting but not altogether satisfactory fictionalisation of the life of an ME sufferer is constructed round this struggle with the ideal of orderly control which ultimately gives way to a strange kind of new age fantasy.  It is a kind of modern day Notes from Underground, and again illustrates the limits of rational approach is to chronic illness.

Wisdom and journey

Action planning is a tool that is suggested by pain management programmes.  Personally I have not found it a helpful approach, even though I do have to exert considerable control over my life.  But I don't sit down and work out what I want to achieve and the steps necessary in order to achieve it, my approach is much more instinctual -- I gradually work out, over time, what I need to do and find encouragement in my own ability to keep true to my emerging praxis.  What I find helpful is to think in terms of wisdom -- a knowledge about my condition and what I can and can't do which emerges out of experience rather than a process of rational planning.  In this process when things get worse is important.  It is often a time to reassess and try and work out what I've done wrong, if anything, and how I can improve my self-management.  This has helped lessen my depression when I have relapses, because I know that they will generate a learning which will be helpful in the future.

No doubt different people will find different approaches helpful.  What seems important is to find some process of planning and/or control which will enable the individual to change his/her experience from a random succession of pain, depression and disappointment into something which makes sense and has some sense of journey and purpose to it.  Chronic illness and the struggle with it is not about returning to where we were previously, but it is about a journey into a new place which, while it may not be full of peace and joy, can at least be expected to have some hope, love and a sense of meaning.

Opportunities for change

I have tried to illustrate what are the problems and potential with a managed approach to change and the need for an overarching story or journey in which to locate any attempt to improve health.  I will now go on to outline six key areas which can, I believe, act as tools for bringing about change and gateways to new opportunities. 

  • Honesty and self-awareness.
  • Communication skills.
  • Assertiveness and resistance.
  • Skills and techniques.
  • Community and friendships.
  • Letting go

Self-awareness

I was once offered a job working for a project in west London.  However, when I went through the process of induction issues relating to my disabilities came up -- I hadn't mentioned them on the application form because I had always managed to find ways around them in the past and I liked to focus on my abilities rather than disabilities.  The situation worried my prospective employers and they withdrew the job offer.  Whether they acted illegally or not I don't know but it did make me realise that I was significantly disabled and I could no longer go on pretending I wasn't.

There are political issues around disability which need to be addressed and there is a time for confrontation but if this does not go hand-in-hand with an honest self-awareness of our own situation it will, ultimately, be detrimental.  We need to be honest about what we are experiencing and aware of how this makes us feel -- there is no point trying to make out everything is okay when inside we are seething with anger or overwhelmed with vulnerability.  Illness often increases our self-awareness and this is why it is often experienced at a time of personal growth.  Hard as it may feel, the pain and loss of illness can be transformed into something positive and life enhancing.  Not that we can force this to happen, or in any way feel that this should happen but being honest with ourselves and becoming more aware of what we are feeling will, I would suggest, open us up to new possibilities.

Communication skills

Going to the doctors can be a strange experience.  I wait for ages and am finally summoned in to the inner sanctuary.  At this point my mind goes totally blank and I forget to ask a question that had previously been foremost in my mind or mention the symptom that had been most troubling me.  Only afterwards do I kick myself for my memory loss but I feel too embarrassed to go back.

Patient-doctor communication has become an increasingly important area.  People are realising that it is a key to 'better health outcomes'.  There is, however, a tendency for doctors to criticise patient’s for 'non-compliance' and other forms of 'bad behaviour' whilst patient organisations are often critical of supercilious doctors who treat patients with arrogance.  The situation is, of course, more complex so it is good to see doctors making comments like this 

"In looking at these 36 studies we learned many things. For example, research on non-adherence to doctor's instructions has focused on bad or poor behavior by patients rather than on the clarity of the physician's instructions or whether the physician actually checked to see if his or her instructions were understood by the patient. The physician assumed that the patient understands and thus will comply.” Richard Frankel, Ph.D., IU School of Medicine professor of medicine and Regenstrief Institute research scientist

If doctors can look at their communications skills then it should also be incumbent on patients to look at their own!  Communication, anyway, is a two-way process -- good communication to one person is bad communication to another.  We need to find an appropriate way of communicating with the different people who need to know something about our illness.  Doctors, parents, children and employers will all need a different message and different personalities and intellectual capacities will need to be taken into account.  I have certainly found that writing about my own experience has been helpful to my family in understanding what I'm experiencing and in the same way that my self exploration can help others it is also certainly true that making the effort to communicate with others can give you more insight into your own condition. 

Illness is not something that we experience on our own.  It makes us dependent on others and good communication is a key to turning this into a helpful interdependence rather than an exercise in mutual incomprehension.

Assertiveness

I went to see a consultant about skin problems that had been troubling me.  In the normal process I had to undress and wait for the consultant who was accompanied by a gaggle of students.  When the examination was complete he asked me whether I was okay with taking drugs and I replied that I was.  He suggested that I take a small dose of antidepressants as he felt this could suppress my skin sensitivity.  I said okay but almost immediately knew that I wasn't happy with this.  I never took the medicine and I never went back.

This is, I suppose, an example of being a noncompliant patient.  I just didn't like the idea of taking antidepressants -- even in a small dose not designed to treat depression.  Of course it would have been better if the consultant had fully explained the situation before asking for my consent rather than asking the obscure question about taking drugs.  My mother says that even as a small boy I would be reluctant to do anything until it was fully explained, and I am exactly the same now.  I need to have a high level of knowledge about something before I really engage with it.  I would have had a better experience of doctors if I had been fully aware of this and was more upfront about asking for explanation.  Not that this would necessarily have helped, there are plenty of doctors without the time, inclination or skill to give me the kind of level of explanation that I really need.  Although our medical culture seems to be increasingly encouraging the assertive and empowered patient there are doubts about whether our systems can cope with this.  It requires time and a maturity on all sides which is not easy to achieve.

Nonetheless the ability to be assertive without being aggressive does seem to me to be a key gateway to improving one's health.  I have often found that saying no to treatment has been important for me because I have had to give myself more time to think and reflect on my experience.  Any treatment is more effective when it can be undertaken from a place of confident belief rather than speculative wishful thinking.

Skills and techniques

Some years ago I went on a pain management course.  Much emphasis, on the course, was put on the importance of stretching and we were taught a comprehensive programme of stretching which I followed in a dedicated manner for a number of years but it never really seem to do any good.  Later I learnt about the self massage of trigger points.  This I found of enormous benefit but it did not resolve all my problems, now I am finding that returning to doing some stretches does have a real positive benefit in combination with trigger point massage. 

Much of the Expert Patient handbook is about techniques.  Techniques for taking exercise, techniques for communicating better, techniques for eating and managing medicines -- even techniques for enjoying sex.  This is very helpful and most people will find that there are certain techniques and skills which will be useful to them -- even crucial.  I would certainly say that about trigger points.  Successful techniques are important for a number of reasons: 

  1. The concrete decrease in pain or increase in functioning which they can achieve
  2. The confidence boost you get from finding something that is of real benefit to you
  3. Developing a rhythm to your life around the use of skills and techniques
  4. The increased understanding of your body which they can give
  5. The ability to share something positive with people who are suffering from similar problems

But techniques do not always work.  When therapists confidently tell you that you will experience improvements and you don't it can be a real dent to your confidence.  Techniques are not solutions but part of a management package that you have to put together over time and in which you will become expert -- the recognition of this is one of the strengths of The Expert Patient program.

Community and friends

Michael Mayne's much loved book A Year Lost and Found details his struggle with what he later came to call ME.  Comparing his story with that of others who have suffered from the same condition I was struck by the support he received from his church and family.  He was allowed the space and quiet to recover and it occurred to me that this must have been hugely instrumental in the relative mildness of his experience.  I have also found my family and understanding employers hugely important in enabling me to manage my condition. 

The other side of this was brought home painfully to me when I was pastoring a church.  A lovely, gentle older woman had started coming to the church but she became ill and I went to visit her at her home.  I was immediately struck by the strange atmosphere in the home which she shared with her brothers and son and as she began to share her family history her struggles with her mental health seemed to be largely a very reasonable reaction to the poisonous environment in which she lived.  A little while later she was admitted to hospital and eventually received ECT, this seemed to revive her and arrangements were put in place for her to move out of the hospital into a flat with her son.  But the flat she was offered was in need of extensive redecoration and this immediately depressed her, sending her back into a spiral of degeneration.  I felt completely impotent in the situation -- what could I offer?  I could not offer her a new family, or a new community in which this gentle soul might find some healing, even though this was very obviously what she needed.

So often the quality of our relationships is the key to healing and yet how do you provide new relationships for someone else?  Doctors, councillors and therapists of all kinds can only provide a very limited form of relationship.  People often seem to be looking for a truly nurturing relationship so that they can escape from the poisonous entanglements in which they are ensnared.  This points to the fact, that useful as interventions might be, it is only in the day-to-day realities of our lives that any healing will truly be found and paying attention to mundane experiences should be our first priority.

Letting go

Some years ago I reached the low point in my illness.  My voice had been a problem for many years and I had visited doctors to see if anything was wrong but there was no obvious problem.  I enjoyed drama and public speaking and reading aloud but was aware that this was getting more difficult, then suddenly my voice deteriorated dramatically.  My life seemed to fall apart.  Because of my widespread chronic pain I have to use a voice recognition system to use the computer but with the sudden deterioration I was unable to do this.  I was not able to work.  I was not able to do very much at all.  I remember one warm April afternoon lying on the sofa thinking that my life could now consist of not much more than thinking beautiful thoughts.  Tears came to my eyes but I found a strange peace descending on me.  There was now no more struggle.

From this point I have slowly began to improve.  True, finding the trigger point technique has been important but there has also been an important process of accepting my weak humanity -- I am not the strong competent man I would like to think I am but rather I am frail, self-deluding and not so different from that weak, gentle member of my congregation for whom I could do nothing.  This is not to say I do not have strength or significant competencies but I must let go of them if I am to gain the wisdom that I need.  This is one of the stranger insights that I've gained on my journey.  I do not understand it.  Certainly it is out of tune with those self-improvement gurus who tell us to believe in ourselves and discover our self-esteem, not to mention our cutthroat, competitive world of the market.  Yet it seems to me that to let go, to recognise that I can't cope, to recognise that the world is too big for me, is only being honest.  When we experience chronic illness the myth of masterful humanity disappears: we are not able to manage the planet, we cannot even manage our own bodies!  We have failed, and there is no shame in accepting this, rather it is a place from which to start.  A place from which to rebuild our idea of what a human being is.  A starting point which includes illness rather than seeks to banish it.  Perhaps, in encouraging us to let go of our notions of world mastery, chronic illness has something to offer our fragile world.  And to recognise that our chronic illness might give us gifts to share with others could be a crucial step on a path to healing.