CFS and the facts of life - an article for clinicians
Much has been made of the fact that when badly "administered", Cognitive Behavioural Therapy can be less than helpful in the management of Chronic Fatigue Syndrome. Indeed, despite now very strong evidence (see the recent JAMA review) that CBT is an effective intervention, there was a recent patient conducted survey which showed a high degree of dissatisfaction with implementation of this treatment.
However, we professionals would like to minimise this finding, we cannot ignore the fact that there is a very real problem. It would seem that for some sufferers, the key ingredient of best practice CBT - collaboration - is missing. The experience of this group of dissatisfied customers is that of treatment as rote prescription uniformly administered, a one sided exhortation to do more, exercise, sleep less. Coupled with this is the perception of a lack of empathy for very real pain, distress and disability.
The problem may well be that some of our treatments are too evidence based. Thoroughly convinced as were are by the evidence, we all too easily fall into a repetitive giving of advice, encouraging the patient to do the right, evidence based thing - do more, exercise, sleep less. What this fails to address as an approach, are the very real reasons why a client may be sceptical or anxious; their wariness of yet more professional advice; the complex reasons why the imposition of a routine on their current life feels nigh on impossible.
Advice is only useful if tailored, if presented with an awareness of the context in which it is to be applied. The factors that maintain and perpetuate pain, fatigue and disability are manifold, and each client will have a unique set of factors in play. Depression, loss, over-working, sleep disturbance, high self expectations, exhausting interpersonal strife, litigation, illness, work and family responsibilities, poverty, hopelessness-the list is of course endless. But unless we have some awareness of the client's life experience, we cannot, but in the most straightforward cases, proceed to give advice.
Evidence based practice is not enough - our practice must also be based in empathy, understanding, alliance and respect. Although there are no shortcuts to achieving these, an awareness of some of the recurrent issues and the unique nuances of practice involved in working with CFS may aid the practitioner in better understanding and working with these clients.
"I can't get better if I have to prove that I am ill…"
Chronic Fatigue Syndrome is constantly having to prove itself. It is hard to imagine how anyone confronted with a sufferer (an awful, but accurate term) of CFS could fail to be convinced by the reality of their symptoms. However our society seems to constantly need to remind itself that this suffering is real. Questions in the house in the eighties, the Royal College of Physicians and Psychiatrists report in the nineties, and now this most recent government report, each repeating the same point -real illness, real people, real suffering.
Of course the political debate is only a reflection of the struggle of individuals to be taken seriously. Most of the people I see have had to fight long and hard to get a diagnoses and referral, and typically will have encountered numerous health professionals who will have been quite explicit in there disbelief.
Part of the blame can be directed, and often is, at Descartes. From him, and his enlightenment descendants, we inherit the idea of the person as an animated corpse, a purely material body inhabited and animated by a non-physical, abstract mind/soul. As a framework for explaining illness this model has serious limitations, particularly when confronted by illnesses which have no clear physical origin.
Within the dualist framework, if there is nothing wrong physically then there is only one other place to look - in your mind. Add a dash of Freud, and we have the completely unsubstantiated, but amazingly pervasive notion that medically unexplained physical symptoms must be the expression of unconscious psychological distress. All we then need do is convince the patient that they are really depressed/personality disordered and things will move along nicely. I have seen many casualties of that approach.
However Descartes cannot take all the blame. Another kind of dualism is also at work here, what we might call cause/cure dualism. A great majority of us, patients and professional alike, are infected with a surprisingly simplistic notion of disease. If something is wrong with us, we expect that a doctor will find the cause. Once the cause has been found the doctor will then give us the cure - or tell us to wait around a few years until one is found. Cause-illness-cure. Again, this framework suffices in daily life, but anyone who has brushed with conditions more serious or chronic than flu will know that this is not how illness works.
Take diabetes or heart disease. In each of these a complex interplay of factors - genetics, personality, life style, life events to name a few - may lead to some predisposing vulnerability to develop illness. Then certain key events - stress, infections, more life events - may precipitate the onset of the illness. Yet another set of factors - constitution, treatment, management, ones ability to comply with - will affect the prognosis. Few diseases are simply caused or cured.
Chronic Fatigue Syndrome is no different from any other disease. A certain set of factors make one more likely to get it. Another set of will effect the prognosis. It differs from other diseases only to the degree where we cannot detail every physiological process at work, but this is true to some extent of most of them.
However, Chronic Fatigue Syndrome differs from others diseases in one crucial way, it contains a perpetuating ingredient that none other contains - disbelief. I have seen the effect of this in both children and adults and it is devastating. Imagine being burdened with literary crippling pain and exhaustion, for years, to be told that there is really nothing wrong with you, by the people you have turned to for help and support. As one Canadian academic put it in the title of a paper - "how can I get well if I have to prove that I am ill?"
Hearing the Story
The perpetual battle for validation that most sufferers of CFS are caught in is literally, physiologically exhausting, depressing and dispiriting. It affects the course of the illness. No other sufferer of chronic illness has to fight this bizarre battle to have the facts that they live with every day legitimized by a hostile authority. As long as CFS has to prove itself, that much longer will sufferers suffer. As therapists, our first and last concern is to take the suffering of clients seriously. All this involves is listening.
As yet another health professional recently come in on a unfolding illness narrative, our first duty is to find out the story so far. This involves nothing more than listening, but it is surprising how novel an intervention this is for many clients. We must be particularly aware of previous experience of expert advice, often contradictory and at odds with our own evidence based wisdom. Our first concern then is to get to know the client, to show them that we want to hear their story.
Until we know who we are talking to, we should refrain from advice, however well intentioned. As a therapist, my first question is to ask what physical symptoms have brought them to me. I do not enter into debate about whether these symptoms are real or not. Patently they are real, and by showing my interest and belief, I circumvent the need for them to prove themselves as ill to me. Thus we get to hear the real story.
Through their own experience, every client will be managing as well as they currently can. In suggesting that they manage things differently, we are in danger of implying they are not managing well enough. Rather we must position ourselves alongside the client. As an ally, aware of the stresses and strains of their life, we can support the client in dealing with them.
Framed thus, our new suggestions are not contradictions, but additional strategies, worked out with the client, new ways of helping them deal with whatever they have to deal with. This therapeutic alliance can only be built on trust and understanding, and our first few sessions should be directed to building this, not blanket prescription. We must listen.
Roadblocks on the Road to Recovery
Having listened, our joint work is then to help the client to map and travel a way out of their current situation. No one wants to be this ill, to feel this bad. They have tried to pull themselves together, they have tried to pull their socks up. They have paced and exercised and rested. They have told themselves it's just depression, diet, imbalanced Chi. None of it has helped.
Our duty as therapists is to help them find a workable, comfortable way forward, a pace of gradual and sustainable change. Rehabilitation in short. However on the road to recovery, there are many blocks and speed bumps - as with any condition. With some awareness of the kind of blocks particular to CFS, we can better help clients overcome them.
CFS is not depression, they have different neurochemical profiles, "feel" very different in clinical work. Which is not to say that people with CFS don't get depressed- indeed people with CFS would seem statistically more prone to experience depression - but the conditions remain distinct. Depression that has progressed to the extent where it impedes working on recovery (for which the client needs a fair degree of self-motivation), certainly needs to be addressed independently, and there is a good argument for anti-depressants in these cases.
However, the depression associated with CFS - and most clients are clear that their depression is secondary to their fatigue - is often of a particular kind, principally characterised by loss, frustration, anxiety and hopelessness.
Loss is an underestimated part of CFS. Many of the roles by which we define ourselves will have been profoundly altered, or lost entirely to CFS. Work roles and social positions, our place in the family and our relationships with friends and partners, parents and children - none remain unaltered. This is particularly marked in children, where the automatic network of school friends and peers often disappears overnight, leaving them isolated and unsupported.
Perhaps more devastating is loss of time. Many sufferers in twenties and thirties will have spent much or most of their adult lives trying to manage an illness, at the expense of the career building and relationship formation that most of us devote these years too. There is also loss of future - the career and personal goals that structure most of our life journeys are lost in the blank horizon of ongoing illness. Many sufferers complain of their lack of ability to plan for the next day, the next week, let alone planning and building a future.
Inevitably then, part of the work of coping with CFS is the work of mourning - mourning what has been lost and what can never be. Hopelessness and frustration are key here too. Wanting but not being able to have - a future, a career, a family, whatever - a desire for the unattainable is the essence of frustration, particularly when you know you could get it, if only you felt better. This frustration easily gives way to helplessness and hopelessness. It is part of our work not only to help a proper acknowledgment of loss, but also to help in building a vision of a realistic and attainable future.
Key to this, is the installation of a sense of hope, a maintenance, on the part of the therapist, of a certain optimism that things can change for the better. Many clients have lost this, or been explicitly told there is nothing they can do but wait to get better. Encouraging a sense of hope and control is crucial to moving on into recovery.
Many clients live in a state of precarious status quo. They will often talk in terms of a tightly rationed energy budget. They have so much energy to divide between, say, shopping, keeping on top of the housework and looking after their family. Any increase in expenditure in one area takes precious reserves from another. Unexpected demands - life events, applying for benefits, other illness, relationship problems - can wipe out existing reserves at a stroke. Only by very carefully pacing themselves can they maintain their current commitments.
I recently suggested to a client, whose main demands were looking after her mother and her pets, that she add a five minute walk to her routine. She seemed hesitant, worried. Exploring this it became clear that for her a five minute walk was energy wasted, could potentially compromise her ability to look after her dependents. Ultimately my five minute walk was for her a vision of herself as bedridden, her mother in a home and the animals taken away. Only by careful exploration of these fears, and real negotiated, achievable goals could this client move on. I may think I know that a five minute walk will do her good, she doesn't.
Letting go of support
Many clients have built up an infrastructure of support, a coping network, to help them manage their illness. One of my clients had, over the years, established a rota of friends and volunteers, who visited two or three times daily to help her with meals, washing, housework etc. Mostly she was in a wheelchair, and walked only with crutches. She wore a neck-collar to support her head. For her, the road to recovery involved the gradual dropping of each one of these props. To put it in her words, she had to "wean herself of" her network of support, her chair, her crutches, her collar.
Each new reduction in her dependence was a step into the unknown. This required enormous courage and persistence. Each move back into (her words) "real life" was potentially that step too far that would send her into relapse. The spectre of the bed and the wheelchair is never far from the mind of many sufferers.
This weaning is not quick. Two years later we carry on the journey, though her strides are that much firmer and more confident. Therapists used to working with anxiety must acquaint themselves with a far slower pace of change, much less spectacular progress. They must acquire patience, and lower their own unrealistic expectations of speedy recovery. In short, we must fall into pace with the client.
People who do too much
It is here that we enter the territory of client's self expectations. It is not uncommon to find clients whose sole reserve of energy is devoted to doing their work, housework, family maintenance or study to the utmost of their strained ability. Barely keeping their head above water, working far beyond the call of duty, they are often in a state of constant tension and exhaustion. As with the client mentioned above, this state feels dangerously precarious, any increased demand threatens their ability to cope with everything else.
Rest, relaxation and enjoyment are the fuel that keep most of our fires burning. However for many sufferers, these three seem like luxuries they can ill afford. Guilt can play a strong part in maintaining this pattern. My suggestion to one overworked mother/housewife that she take time out during the day for herself met with strong reluctance. Exploring this unearthed what the cognitive therapist Christine Padesky would call a rule for living: "I can only rest if I've done everything that I need to for everyone else."
My suggestion to prioritize herself sounded positively immoral, an encouragement to be "selfish". "Should thinking" is a common habit here - I should be able to look after the kids, do all the ironing, cook all the meals, cope with everything and then some, I should…
By blanketly encouraging clients to do more, we are in danger of playing into this belief system, of encouraging yet more "me last" behaviour. Encouraging clients to dare to rest, to enjoy, to relax, to question and drop their high self standards is often a far more valuable therapeutic investment. One client of mine, a teacher, described her own standards as being like "having a school inspector in my head, constantly telling me I wasn't doing well enough". It was part of our work together to take this inspector outside and shoot him.
This is closely linked to perfectionism. The trap of perfectionism was graphically described by another client: "I have such high standards for doing the hoovering in my house, that I haven't been able to do it for four years." In the words of David Burns, we need to encourage our clients to "dare to be average" - to not get or expect an A plus, to not hoover for England. In doing so they realise, paradoxically, that by lowering their standards, they achieve more.
Looking after the Environment
One of the potential blindspots of cognitive behavioural therapy is its lack of environmental awareness. By its emphasis on how it is not so much the situation, as the individuals interpretation of the situation that is the problem, we easily lose sight of what some analysts call The Real - the insurmountable facts of living that remain no matter how we look at them. Telling a mother in an abusive relationship, on benefits, living on a bleak estate, that her problems all lie in her interpretation of things is not only useless, it is wrong. Unless we help her change her circumstances, little else is going to change.
By locating the problem in the individual and their interpretations, we also easily forget the network of relationships in which they live their lives and how this can effect their wellbeing. This was dramatically illustrated by one client.
For twelve sessions, she had come along with her partner, who was apparently very supportive, an together they had done everything right. Pacing, consistency, sleep management, graded increases in activity were all done by the book. But she wasn't any better. She then missed the next session, and I didn't hear from her for a month. I then got a phonecall: "I've left my partner. I don't have a clue what I'm doing or what I'm going to do, I'm scared as hell, but I'm not fatigued anymore." This change persisted, and what emerged in subsequent sessions was that for years she had felt stuck in a relationship that was emotionally and physically draining, but that she felt too ill to leave.
Of course this is an extreme case, but it alerts us to another factor we easily miss out of our fatigue equation. Unless clients feel they can trust us, and unless we explore, without prying, their network of relationships, their interpersonal styles, we will miss vital information. A famous seventies self help book was entitled "Women who love too much", and however cliched the concept may seem, being stuck in a relationship where the support is unreciprocal has real physical effects. Of course this applies to men too.
Empathy is not enough. It is all well and good to say, oh you poor thing, but as long as we remain there, we are only encouraging them to be victims of their circumstance. Empowering them to make changes, not in necessarily leaving their relationships, but in changing their own behaviour and expectations within it, is the only way that change will happen. Ideally we are also working with their families or partners, with those others who have become involved, seeing them all through the unsettling process of change.
If we have been ill for a while, and we are responsible for the daily running of the house, it is amazing how quickly things pile up. The washing, the dusting, the washing up, the bills, the work commitments, the social obligations… Imagine then having been ill for several years. Many clients describe living in an environment which is literally out of control. Having not been able to keep order for some time, order has gone out of the window. The ensuing chaos is so daunting, so out of proportion to their current ability to manage it, that it becomes yet worse. This of course produces yet more exhaustion - a mountain of washing up is much more daunting than one mornings teacups.
Consequently many clients live in environments that are actual embodiments of their inability to cope, an inescapable reminder of their disability. I have spent many sessions painstakingly going through the categories of household objects, their potential for ordering, trashing, recycling - gradually over months bringing some workable order back to the environment they live in every day. Like Maslow's hierarchy of needs reminds us, unless we begin with the basics of comfortable and restful shelter, we cannot proceed to fulfil our more lofty desires.
Work and Money
And this brings us to the subject of money. The British are famously even more shy of asking about money than they are about sex, but unless we do, we are missing a crucial factor which is often implicated in the maintenance of disability. Many clients are, to put it at its most stark, getting money to be ill - from the state or from private insurance.
Currently in Britain it is very difficult to make a smooth transition out of benefit dependence, to "wean oneself of it". If one is deemed fit for work, benefits are abruptly stopped. Of course the only way to become fit for work, is to gradually ease oneself back into it, but often, as soon as a first step is made, the whole benefit is threatened. This is the famous benefit trap, and it is as real for CFS sufferers as for any other unemployed person. As professionals the best that we can do is liaise with employers, insurers and the state, acting as advocates for the client, trying to ensure as much as possible that their return to work, if such is their goal, is as easy as possible.
Returning to work is often the biggest step a client can take. Taking the decision to come of benefits, to officially declare oneself well and to return, as it were, to the frontline, is probably one of the biggest risks they will ever have taken. Often they will choose a very different career path, indeed a very different life path, to the one they were on prior to illness. Having a long time with very little energy, focuses people minds on how they wish to spend it in a way that most of us will never know. This often leads to a re-prioritizing of life goals - not uncommon is a move from financial and status driven ambitions, into more personal and spiritual ones.
Career advisor, life coach, insurance and DSS liaison officer, grief councillor, marriage guidance councillor, family therapist, motivational interviewer, time and motion expert, domestic scientist, financial advisor. There is much more to treating CFS than graded activity and sleep management. However these various roles share a common trait when done well - an ability to problem solve.
The blocks and impediments to recovery in CFS will not go away on their own, unless one is very lucky. Be they interpersonal, physical, emotional, social or financial, they must be got over or round. We have to develop with the clients a precise, detailed understanding of their current situation, then be able to explore and negotiate with them possible routes forward. Above all we must remain patient and optimistic, be prepared to fail and start again. If it was really so easy to get over, the client wouldn't be stuck.
Chronic Fatigue Syndrome, like any other chronic illness, is a condition that gradually co-opts more and more aspects of the client's life. Without a detailed awareness of how the illness has woven itself into the daily texture of the clients existence, we cannot really help them. Evidence based practice must be coupled with a client centred awareness of how that evidence is best applied in any particular case. Without this awareness, without empathy, trust, understanding and respect, all the evidence in the world will not help us work with clients or help them to benefit from the results of our research based knowledge.
Author: Vincent Deary