Living Better with Chronic Fatigue Syndrome (M.E.)

by Dr Roslyn Woodward, PhD


Dr Woodward, a counselling psychologist, is a Visiting Fellow in the National Centre for Epidemiology and Population Health at the Australian National University in Canberra. She presented this paper at the symposium 'M.E. - The Patient Oriented Approach'. which was held in Dunedin, New Zealand, on February 10-12, 1995. The paper is reprinted on this internet site with the kind permission of Dr Woodward.

Illness Management

When I am talking about illness management I am not talking about 'treatments'. I am talking about the factors which can make a difference to the way that people live their day to day lives when they have a chronic illness. These factors are relevant in the management of any chronic illness and can be put under four headings:

1. The illness itself
What is the nature of the illness and how does it differ from other illnesses in its impact? Each chronic illness has specific characteristics, not only in the impact of symptoms and their effects, but also in the way the illness begins and develops over time, whether it diminishes, relapses, remains constant or becomes terminal.

2. The individual's health history and life circumstances
The capacity and opportunity to alter aspects of day to day living to promote better illness management may be affected by a person's particular health history. Previous poor health or current severity of illness can be very important factors. Similarly, socio-economic circumstances can mean that an individual has to make choices, at times, between maximising health outcomes or maintaining income or continuing to play a significant role within their family or other relationships.

3. The individual's understanding and response to the illness
The way people interpret and understand what is happening to them can determine their adaptation to the illness they have. Self esteem, a sense of potential mastery over the illness or other aspects of one's life can be influenced by the degree to which a person can make sense of an illness at a biological level. As well, though, intensely personal symbolic associations relating symptoms to failure, sin, justice, punishment, guilt or fear can create an overlay to the experience of illness and subtly influence, often adversely, individual attempts to understand how and why this illness has occurred.

4. Social and medical responses towards the individual and his/her illness
Those who live with, work with, or provide professional care for people with a chronic illness can significantly affect the way an individual manages day to day life. Family, friends, colleagues and professionals may have difficulties knowing what they can and should do that will be helpful. Professionals are also poorly trained, in the main, for providing support and care for people. As well, they may have to juggle concern for the individual with a medico-legal responsibility for assessment about the legitimacy, likely chronicity and severity of an illness.

Living with and Managing Chronic Fatigue Syndrome

So far I have been talking about chronic illness generally. To what extent is CFS a chronic illness?

This table (Table 1) summarises the changes that occurred in the health status of my group over the three interviews. These assessments have been based on a modified version of the scale in Dr Bell's book (Bell, 1990).

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Table 1: Changes in health status over time

Interview" Status

Overall, with time, the majority of participants experienced improvements in their health, although ten stayed severely ill and many had extended periods of ill health, with absences from work or being home-bound. No-one had recovered although five people declared themselves recovered at various stages during the study.

So it does seem relevant to describe CFS as a chronic illness. It is also relevant to stress that the illness can and does ease to some degree over time for many people. On the basis of my findings, that easing has less to do with specific treatments and more to do with people learning how to manage their illness.

Before drawing together the common threads associated with effective management of this illness, I will spend the next few minutes briefly providing you with a context for my arguments by reviewing what happened to the people in my study, under the headings I used earlier.

1. What are the effects of CFS?
This is an illness with a wide range of symptoms and marked differences in its severity. So CFS did not affect everyone in the same way. Nearly everyone mentioned disabling levels of fatigue, tiredness or exhaustion, even though many said these were not the worst aspects of the illness, just the most common symptoms. Most, but not all, described disabling cognitive symptoms.

However, only some people experiences some of the other prominent symptoms such as muscle and joint pain, emotional lability (mood swings), nausea, sleep disturbance, gastrointestinal problems, balance problems, etc. And some of these symptoms occurred for some people only sometimes, perhaps for a few weeks and then never again or perhaps they recurred occasionally.

For most, this was a changeable illness. It was usually relapsing, sometimes with minor relapses during the course of a day or with major relapses over months and years. Sometimes new symptoms developed or old symptoms disappeared.

For almost 80% of participants, the initial phase was not the worst time with the illness.

What seems to be the case was that the more symptoms a person had, or the more changeable the illness was, the more difficult it was to manage. These characteristics made it difficult to concentrate on or evaluate a particular strategy. Similarly, the more pronounced the cognitive symptoms, the more difficult it was to devise and interpret a strategy, sometimes it was simply too difficult for people to make sense of what is going on when their cognitive symptoms were very marked.

2. The individual's health history prior to CFS and life circumstances
Participant in the study came to CFS with diverse health histories. Thirty per cent described themselves as either extremely fit or very healthy prior to developing a viral illness. Forty per cent described the onset of a viral illness at a time when they felt they were 'run down'. Thirty per cent had a more gradual onset (sometimes over years) associated with a series of injuries or different illnesses, allergies and chronic pain.

In other word, participant's previous experiences of good health and what they had been capable of doing on a day to day basis were different as were their notions of 'recovery'. Past health problems were also difficult to separate from those of CFS - indeed, as Kathleen Maros (Maros, 1991) had argued, CFS seemed to exacerbate the effects of past injuries and illnesses.

Life circumstances also differed, both prior to CFS and following its development. By the time of the first interview, 25 were in full time or part time employment, 5 were maintaining study and the remainder were either unemployed, on sick leave or retired due to ill-health. More than half were currently married and had children. Hence the majority were trying to maintain family life, usually on a reduced income or an income that was difficult to maintain due to ill- health. Others were relying on family members or social welfare to provide financial support during their illness. Several also had spouses, parents or children who were ill (not necessarily with CFS), needing care and support on an ongoing basis.

3. The individual's understanding and response to CFS
During the early and later stages of illness, all participants had in common a stated style of 'pushing through', 'striving to overcome' or 'ignore' health problems. Most did this by choice as they had always used this style to cope with other challenges in life; however, 30% felt they had to 'push through' because of ill health in other family members, financial demands or expectations of other family members.

In" part this response was also influenced NATURALSIZEFLAG="0">y the uncertainty associated with the illness - its changeability and diverse symptoms. Most assumed - perhaps not surprisingly - that it was only a passing problem, one that could be dismissed. However, this response became more problematic as time went by and in some instances because of the severity of the illness. For those without a diagnosis (only 11 had a useful diagnosis within twelve months), their style of 'pushing through' became driven by self doubt and by fear of the other possible explanations for their illness such as undiagnosed cancer or psychiatric illness. The need to maintain the semblance of day to day life became very powerful in these circumstances. Some tried to do more than usual such as additional exercise or careful diets.

As time went by, this style of coping seems to have contributed to a debilitating downwards spiral of self doubt, counterproductive activity and declining ill-health. For those with difficult relationships or painful histories, this downwards spiral was exacerbated by, and in turn exacerbated their struggles with, the day to day problems or their past problems.

4. Social and medical responses towards the individual and his/her illness
The spiral I have just described was generally broken only when people began to have an understanding of the nature of their illness. Those who received a diagnosis early in their illness rarely became as ill as those who went for years without an adequate explanation. They also felt less distressed by their illness, less inclined to doubt themselves, less likely to feel the need to prove themselves.

As such, medical and social responses played a very important part in the longer term health outcomes for people. Being seriously or chronically ill without an adequate explanation tested individual self confidence, with adverse affects. The lack of a diagnosis and relevant information also tested relationships, as family and friends also had to live with uncertainty as well as the often desperate efforts of the individual to overcome the illness.

At times the lack of a diagnosis or the controversy associated with it hindered people's efforts to maintain some degree of financial independence. They had to continue to 'push through' so that they could present their case to welfare services or to convince family of their genuine need. Without exception, those who had to engage in these processes went on to become extremely ill - their downwards spiral was much more pronounced. Isolation, a deep sense of anger and despair usually followed. In contrast, family support and belief could ameliorate the worst of people's self doubt and ease the worst of their despair.

 

Conclusion

My suggestions about the management of CFS emerged from the findings I have just described. As I have said in different ways, this is a difficult illness to manage for a variety of reasons - its debilitating symptoms, its uncertainties over time, its chronicity and its still controversial status. However, there are some common threads to its management:

1. Knowing your illness and know how it differs from others
CFS does not affect everyone in the same way, hence the management of its effects will differ from person to person. The treatment that relieves one person's symptoms may not be effective for someone else. That one person can maintain an exercise program may say more about their health status prior to CFS (and their current health which generally has to be pretty good) than about what is possible for all people with CFS.

In getting to know the illness during periods of better health, it can be useful to read widely, to keep charts or graphs and for individuals to ask those close to them what they have most noticed. Attention should be given to any patterns over time, as many people begin to be aware that there are times of the day or the month (if they are women) when they have more energy or when symptoms are less pronounced. A record of treatments and their likely effects can also be handy, together with some assessment over a longer time.

This personalised information can induce a greater sense of control over the illness and the changes it brings, particularly if it is used to notice and monitor change over longer periods of time.

2. Developing new priorities
Given this is a chronic illness, it is important to readjust hopes and expectations around work, study, family and other interests. It is a time for finding new meanings. What was possible once may be a very unhelpful guide to what is and what will be possible. Similarly, what is possible for one person may not be possible for another. This is true whether we are sick or well. We can't all be marathon runners or great salespeople or whatever. As a society though, we seem to be forgetting this and aiming for the peak rather than moderate or even lower levels of achievement.

Most importantly, during periods when the illness appears to be easing, it is important to maintain the new priorities, not returning too quickly to the old more demanding ones. People in my study said this was one of the hardest things to do. Yet it was clear that a rapid return to 'normal' activities when there was a return to better health was associated with subsequent relapse.

To maximise the number of possibilities in a day, many said that there was a need to simplify day to day activities through routine and self discipline. Routines (which some recorded on paper and kept in prominent places to help them remember the processes such as morning activities prior to going to work or having the family go to school) also helped to ease some of the cognitive problems - perhaps through not having to remember so many things. Lists were important adjuncts to all sorts of processes though they could exercise a kind of tyranny (for the individual and their family) if following them became more important than using them as a guide.

3. Monitoring and pacing
I see this as the single most important strategy that any person can adopt. It usually involves a major shift from what seems to be the person's usual coping style of 'pushing through'. But those who had developed ways of listening to their body or measuring out time each day so that they remained within the limits or their current health were the ones who had managed to produce either a move toward better health over time or longer, more sustained periods of better health. Again though, there is no simple message about this. One person may be able to work solidly for an hour and then have to rest; another may be able to talk for ten minutes and then need silence and rest.

Many people are not good at listening to their body so that a self imposed limit to any activity may be more useful. What seems to be important is to stop before exhaustion sets in and to prepare for major events with rest.

I have now mentioned rest several times. It is very important, but I am not talking about total rest. Those who chose to experiment with total rest for some weeks or months as a curative measure found it very bad for their moral and not particularly useful for their health. There are some who need total rest for a time simply because they are so sick - that is different to using total rest as a management strategy. The important point is to alternate rest with periods of activity that restore a sense of purpose or meaning in life. Rest also differs from person to person. For some it is a rest for the mind through disciplined meditation, for others it is quietly sitting in a chair or lying down.

4. Learning when to 'Let be'
In learning to manage CFS, self control and self discipline become extremely important. But none of use can control all the aspects of our lives. Excessive self control or behaviour which is directed at controlling the behaviour of others can become very damaging, not only for relationships but also for personal well-being. Trying to control too much is highly correlated with depression as the effort required is too often associated with failure. It can also mean that people get caught up in trying to 'push through' with issues that they may not be able to win.

So it is important for the sick person to view themselves and those around them with compassion. Chronic illness makes living day by day very difficult and the sick person needs to acknowledge their achievement in simply 'getting by'.

Managing these changes can become easier when people find 'kinder friends', friends who make allowances for their changed pace, the associated levels of disability and different needs.

 

 

A role for doctors, health professionals and family

Doctors, health professionals and family can make the difference between whether a person is able to manage or not. In brief the major need of the individual is a framework for understanding their illness. Without a framework, self doubt can drive a person into counterproductive responses. One of the most important contributions that a doctor can offer is a considered diagnosis, followed with information (sometimes written) and support. Family and friends can help to sustain the individual by their sensitive feedback and general support and understanding.

To finish, I think it is important that I say that the scope for change is dependent to some degree upon the severity of a person's illness, their past histories and their present circumstances. Nevertheless, despite my emphasis on chronicity, I do believe that people can get better from this illness or at least live better lives over time. I leave the last words on this to people in my study:

You do get a bit better. Generally speaking that is true for long term people. Things do calm down. It does become manageable because you have to manage it. There is almost no choice about that.

I think that I am managing this illness better, not that it is going away or that I am getting better... However, I am now able to fit more into my life so therefore my life is better.

Reprinted from Emerge, June 1992.