Fighting the Monster
--practical and theological reflections on Chronic Fatigue Syndrome, ME, Fibromyalgia and other related conditions
A practical reflection on living with a chronic condition of uncertain diagnosis......
Beginnings
Something is wrong
No one can give me an explanation
Caring for myself
Getting in deeper with the medics
Trying the alternatives
Despair and hope
Work and Finance
Personal Relationships
Personal Identity
Looking for a diagnosis
Do I have ME or Fibromyalgia?
Medics and ME/CFS/FMS......
The pioneers
The sceptics
The advocates
The sympathetic GP
The 'expert' consultant
Psychologists and psychiatrists
Alternative medicine
Diet
Bodywork
Exercise
Energy medicine
Herbs and supplements
Talking therapies
Concluding comments on alternative medicine
The sociological perspective
The ME and Fibromyalgia communities
Organisations
Web sites
Publications
The controversy of ME
Beyond diagnosis
Coping -- the personal journey
Illness journeys
The role of the mind and the environment
Treating symptoms
Cure and recovery
The politics of pain
A theological reflection
Varieties of conflict
Conflicts over words
Conflicts within the professions
Lay/medical conflicts
Political conflicts
Sociological perspectives
Theological perspectives
Certainties
Trigger points
Trigger points and health professionals
Contextual theology
Wilderness
Wrestling with the monster
Handling chronic illness
Anger
Medicalisation
Pilgrimage
Wilderness and the chronic illness experience
A wilderness spirituality of chronic illness
Bibliography
A practical reflection on living with a chronic condition of uncertain diagnosis
In this paper, I will be using the term CUD -- chroniccondition of uncertain diagnosis to describe the symptoms more normally described as ME, Chronic Fatigue Syndrome or Fibromyalgia. This rather eccentric choice reflects my belief that what distinguishes these chronic conditions is the problems they cause for medical diagnosis -- and therefore for the people suffering from them. I personally do not believe that establishing a recognised diagnosis is the key for those of us suffering from these conditions (although obviously a diagnosis leading to an effective treatment is to be welcomed); rather I believe we need to take more seriously and listen more attentively to people's illness stories. These conditions rather than being a problem for medicine are actually an opportunity for medicine to re-evaluate itself and focus on the human condition rather than technological advance, predictable outcomes and quick fix solutions. I will also be addressing the question of what we can do if we know someone who has a CUD -- for the individual cannot be treated in isolation. The response of the community around the person who is suffering is central, both to the individual, and to those whom he or she loves.
My main qualification for writing this is my over 20 years experience of living with 'a chronic condition of uncertain diagnosis' which replicates many of the symptoms often associated with these kind of conditions and is perhaps closest to what some people describe as Chronic Myofascial Pain Syndrome[1]. Through my research fellowship with Wholecare I have also had the opportunity to read more widely and talk with other people who suffer from CUDs. My approach reflects my social science background -- I am a community worker with a Masters in applied anthropology; and, somewhat less obviously, my first degree in theology and experience seeking to do contextual theology in inner London. This experience has made me sceptical of all grand solutions and technological master plans -- change is possible but it is a long, slow process requiring dedication, reflection and good fortune. This paper is, therefore, very much a work in progress. I claim no solutions only a desire to join with others on the journey to rethink our attitudes to chronic illness and celebrate our lives in all their peculiar variety. I write in the first person reflecting the centrality of my own experience in what I write but I also write in the first person plural, reflecting my belief that what I write is not purely personal and hidden but is also part of a common human experience of chronic illness. I trust you will forgive me if I do not always reflect your experience!
The paper begins with the early experiences of illness and those difficult times when we begin to realise that our condition is chronic and not easily diagnosable. It then goes on to look at the search for a diagnosis and the way CUDs resist this diagnosis and the response to this difficulty. It seeks to look at the issues from a number of different perspectives -- the sufferer and their friends and family, medical and alternative practitioners and the support/pressure groups. I also include a look at some of the resources available. The next section looks beyond the issue of diagnosis and contains my own reflections on the nature of CUDs, what they mean and how to live with them. I finish with a theological reflection on living with these conditions which was given as a paper to a WholeCare conference in 2007 and from which the title of this paper is taken.
Beginnings
The start of a CUD is perhaps the most difficult part of our illness story. So it is worth giving it particular attention
Something is wrong
The first indication of a CUD is probably the vague sense that something is wrong. We may be taking longer than we thought to recover from a viral infection, or the pain from a road traffic accident may seem to be persisting forever. Or perhaps the problem just seems to come from nowhere, almost imperceptibly growing until we find ourselves limited and unable to comfortably operate as we previously did. Our reaction to this depends on our personality, we might find ourselves invaded by fears, we might blithely believe we will get better, but we will, almost certainly, find ourselves wondering what is going on.
No one can give me an explanation
At this point we will probably go to a GP. This may result in a clear diagnosis or a referral to a consultant and some course of treatment. The course of a CUD will, however, be different. Doctors will shake their heads. Tests will come back negative. But the pain and the fatigue will continue. This is a critical point. The medical process has failed because it is unable to diagnose our condition. What are we going to do? We may pursueconventional medicine more intently -- maybe scouring the Internet for explanations. We might decide to take the alternative route, going to see a dietician, perhaps, or attending Christian healing services. These all may be of value to us but it seems to me that there is something more important to do first.
Caring for myself
These are dark and difficult days. We are probably trying to keep going as we did previously, juggling work, family and social life but it just doesn't work any more. We take time out to go and see doctors but they haven't got anything useful to say, let alone any way of reducing our pain and fatigue. Our world seems to be closing in and our horizons narrowing month on month.
What we need to do is stop. But that is the most difficult thing to do -- the demands have not lessened although our ability to act has been greatly diminished. All our time is taken up with doing the basic necessities that we need to do in order to keep our life together. Other people's reactions to us will be crucial. If our employer and/or family members are sympathetic then we will be lucky, often they will only increase the pressure on us. The same might be said for our church.
Eventually our CUD will make us stop. But I believe our long-term health will be better if we can stop before that. Our priority must be to learn to care for ourselves, to learn to listen to what is going on in our body, irrespective of any diagnosis or good advice. Our body has ceased to be the neutral instrument in which we unconsciously live our life and has become the central factor in our day-to-day existence. The priorities are no longer making our body look good and presentable but trying to find some way for it to feel less like a lump of unwieldy flesh which we drag around hour by hour, day by day.
If Socrates words 'know yourself ' are a good guide to living then perhaps sufferers from CUDs need to rephrase this as 'know and care for yourself '.
The important question is, of course, how do I care for myself? Personally I find space, solitude and quiet crucial but I also need to balance this with the stimulation of friendship and fellowship. Sometimes what we really need to do for ourselves might seem strange to other people -- I find a week in a cottage in the middle of nowhere on my own very beneficial. Other people, however, seem to regard this as eccentric. One of the benefits of CUDs is that they push us to really consider what we need, rather than what is conventionally considered to be good and worthwhile. We may well discover that things we thought we liked and enjoyed are actually pointless and unnecessary. The important thing is thatwe need to make this journey for ourselvesso that we can find the space in which we feel relaxed and therefore able to make appropriate decisions in the midst of our pain and fatigue. Family, friends and pastors should above all be trying to create this space for anyone suffering from a CUD.
For the Christian this ability to care for ourselves is intimately connected with our spiritual life. Michael Mayne found that a year living with post viral fatigue syndrome gave him a new understanding of the importance of stillness and not being overactive. Chronic fatigue can force us into a kind of wilderness, but -- as church history teaches us -- it is in the wilderness that St Anthony first developed the monastic spirituality which has been so crucial to Christianity. In learning to care for our true selves -- rather than the busy, successful persona which we so often try to project -- we can find ourselves remade. This is explored more fully in the theological reflection at the end of this paper
Getting in deeper with the medics
It is perhaps inevitable that ourCUD will cause us to consult a variety of medical specialists. The major benefit of this will be negative -- it will enable us to rule out diseases and illnesses which we do not have. We may be in an area which has a clinic which specifically addresses ME or Fibromyalgia. These seem to be beneficial for some people, although there is always the danger that we will have to put up with a doctor who is fixated on one particular cause and treatment regime for our condition. This may make us feel like a guinea pig. We will go on to look at treatment regimes later but a good rule of thumb would seem to be that a place which takes our symptoms and experience seriously rather than imposing a particular interpretation on what we are experiencing is more likely to be beneficial to us. I believe that although finding a cure might be difficult or impossible there are many simple things that can be done to make our experience of a CUD better.
But in order to get what we can from the medics, skills in managing the medical system are critical. This is a difficult business for not only are we feeling weak and vulnerable but many medical environments are rather cold and unforgiving places. Having friends and family to accompany us through the medical maze can be very useful. The following are some key points that I have picked up along the way
- Be well-prepared. Write down our symptoms and treatments which do and do not work. This will help you say everything you want to say.
- Do not intimidate medics unnecessarily. Unfortunately many medics feel very uneasy when you arrive with sheets of Internet printouts. As they are gatekeepers to services you may find useful this is something to avoid.
- Do not let the medics intimidate you! Do ask the questions you need to ask. Don't accept treatments you aren't happy with. Make sure they provide you with the amount of knowledge you need to make informed choices. Remember that sometimes the most friendly medics are actually the most patronising and the least willing for you to make informed choices.
- Seek peace and pursue it. Although the medical establishment is problematic, particularly when treating CUDs, there are good doctors out there. A relentlessly combative attitude is not going to help you in the long run.
- Good communication is the key. A doctor who is able to communicate with us well about ourCUD is likely to be able to help us -- even if it's only to tell us what isn't wrong with you! But we also need to work on our communication skills. It is two-way communication that is critical.
Trying the alternatives
Most people with a CUD will at some point consult an alternative practitioner. Some will see them as their first resort, but more often, perhaps, it will be out of desperation to see if something can be done to help.
One, often commented on, advantage of alternative practitioners is that, because they are being paid directly by the patient, they are able to give people more time. This is generally the case but it does not necessarily mean that they are any better listeners than traditional medics. In fact they can often be more blinkered and limited in their perspectives. This may be encouraged by their marginalisation from mainstream medicine which causes them to defend their speciality against its detractors. My experience is that what we are looking for from alternative practitioners is exactly the same as we're looking for from mainstream medics -- a humility in the face of our perplexing symptoms, the ability to communicate well and a breadth of wisdom beyond their speciality.
Alternative practitioners are, by and large, more open to a holistic approach -- which will encourage them to see our CUD in the context of our whole life rather than simply as a medical problem. They do tend, however, to be weaker on a rational approach which is able to explain what is going on and what they are trying to do. This can be ultimately disempowering and, at worst, manipulative. Personally I find a rational approach which tries to explain to me what is going on very important, which is perhaps why I am quite sceptical about alternative practitioners.
Alternative practitioners also tend to be more open to spirituality. The trouble with this, of course, is that they may be coming from a very different place fromourspirituality. Although I respect other religions and spiritualities I find that it is only a Christian spirituality of illness that works for me. I have friends that find the idea of chakras, for instance,very helpful, but I have only been able to relate to them when I subsume them within a prayer based on the ladder of faith in 2 Peter. Again what seems to be necessary with CUDs is to find an approach to healing which resonates with our soul. Anything else will just leave us feeling uneasy.
Despair and hope
As I understand it, some people have been able to fight their cancer by visualising the cancer cells and the battle against them. One of the troubles with CUDs is that no such visualisation is possible because no one really understands what is going on. Even the symptoms themselves seem to shift around in a disconcerting way. The battle, therefore, seems to be between despair and hope. It is not possible to simply medicalise CUDsbecause they can't be diagnosed -- at least not in a way which will receive universal approval. This, in some ways, can be turned to our advantage as it will locate our struggles, not in a rarefied world of medicines, cells and physiological processes but in our day-to-day lives. I go on to explore some important aspects of this.
Work and Finance
A CUD will almost inevitably affect our ability to work and therefore be a severe strain on our finances. This is made worse by the fact that the social security system is not very sympathetic to illnesses which the medical system can't diagnose. It seems to me that we are often caught in a double-bind by our undiagnosable condition. What we need to do is to work less, giving ourselves more time for relaxation and not pushing ourselves beyond what feels comfortable. But what we also need is a pleasant environment in which to relax and access to the various treatments and appliances which will enable us to function more adequately. And of course these require money which our need to work less denies us.
It is perhaps at this point that the value of a supportive community is most evident: Parents who will provide a relaxed home to which we can retreat. A partner who will be able to support us financially. A church community that will not only pray for us, but provide the practical support that we, and perhaps most importantly, our family and partner needs. This kind of support is crucial in enabling us to avoid working so hard that we never have the space to recover. I am surethat the lack of this kind of support is a major contributor to the perpetuation and worsening of CUDs.
Personal Relationships