Demographic census estimates indicate that approximately 9. 5 million people in the UK (18. 2 per cent) have a chronic disease, health problem or disability (Census, 2001). Understanding the social, economic and psychological implications of conditions which have long-term disabling effects would make a significant contribution to individuals who live with the disabilities and to their supporting professionals and family members.
It is the purpose of this paper to expand this understanding by discussing the functional limitations, psychological history, and the individual as well as social aspects of a chronic progressive neurological disease, multiple sclerosis. Multiple Sclerosis (MS) is a chronic disabling disease which attacks the central nervous system (O’Brien, 1987). It is characterised pathologically by areas of inflammatory demyelination (breakdown of myelin) that spread throughout the nervous system over time (Mitchell et al. 2005). The etiology of MS appears to involve autoimmune disruption of myelin which results in various disabling neurological symptoms from bladder dysfunction to paralysis (Mitchell et al. , 2005). Although the progression of the disease is highly variable, the majority of patients eventually develop severe neurological disability due to white matter lesions (Nicolson and Anderson, 2001). Only one in five patients will either remain stable or avoid significant disability during their lifetime.
MS usually features a relapsing and remitting course, especially in the preliminary stages of the disease. It typically affects young adults, the mean age of onset being between 29-33 years of age in most reported series (O’Brien, 1987), with women being affected more than men in a ratio of approximately 3 : 2 (Matthews, 1993 cited in Nicolson and Anderson, 2001). It is a disease with an unidentified cause, an unsure prognosis and for which there is no effective cure (O’Brien, 1987).
The current paper discusses MS in four parts: It will first discuss the general functional limitations experienced by patients of MS with specific emphasis on fatigue and spasticity. It will use case studies, personal narratives and other relevant literature to evaluate the implications of such symptoms. Second, it will briefly consider the psychological history behind the disability with reference to the Disability Rights Movement in America. Third, the paper will relate the original limitations and symptoms discussed to psychological concerns and affects, coping strategies employed etc.
Lastly, the symptoms of MS will be considered from a broader social perspective. Societal attitudes towards the disability and collective symptom management will be included to consolidate the arguments put forward. Functional Limitations of MS As a neuropsychiatric disease which affects young people, MS threatens personal autonomy, independence, dignity and future plans (Boeije, Duijnstee, Grypdonck and Pool, 2002). As a relapsing-remitting disorder MS patients encounter an unpredictable course (Confavreaux, Vukusic and Adeleine, 2003 cited in Mitchell et al. 2005); as an incurable progressive disease patients have to deal with a number of hurdles over time. These features collectively imply that MS can threaten general wellbeing to a relatively large extent (Mullins et al. , 2001). This section will briefly outline the spectrum of functional limitations faced by MS patients and then explicitly focus on two major components that threaten their well being. Several neurological complications have been shown to play an essential role in the personal burden of the disease.
The onset of MS generally begins with “sensory disturbances, unilateral optic neuritis, diplopia, Lhermitte’s sign (trunk and limb paraesthesias on neck flexion), limb weakness, poor coordination, and gait ataxia” (Mitchell et al. , 2005; p. 556). Additional burdens stem from neuropsychiatric complications which occur partially as a direct consequence of demyelination and inflammation and partially due to the psychological effect of adapting to an unpredictable disease (Feinstein, 2004).
The dominant neuropsychiatric symptoms of MS include (in decreasing order of frequency) anxiety, depression, cognitive impairment, irritability and anger (Feinstein and Feinstein, 2001). The less frequent features include disinhibition, delirium, psychosis, dementia, apathy, emotionalism, and behaviour disturbances (Feinstein and Feinstein, 2004). For a number of years, these psychological and psychiatric dimensions have only found the interest of specialists in the field and has hardly had any empirical clinical trials or used by clinicians when assessing the effect of the disease (Fischer, Priore, and Jacobs, 2000).
However, there is an increased recognition that psychological, social and psychiatric aspects form important theoretical bases for understanding the symptoms of MS. Nevertheless, symptoms associated with the loss of functioning can be physically and emotionally painful for the individual. The most common symptoms are fatigue and diplopia which may turn into more serious limitations as the disease advances but the nature and severity of the problems are subjective and increasingly heterogeneous (Mullins et al. , 2001).
Some individuals may experience few exacerbations of the illness whereas others may have a rapid decline of function and eventually become dependent on wheelchairs as they are unable to transfer unassisted. The following section will describe such a functional limitations (fatigue), its psychosocial correlates and critically evaluate whether it can be clearly distinguished from fatigue experienced by normal adults. Fatigue Fatigue is the most common complaint reported by MS patients (Monks, 1989; Krupp et al. , 1988) and also possibly the most difficult symptom to treat and understand.
Family members, friends and even patients may sometimes incorrectly perceive fatigue as laziness and neglect its importance whereas in actual fact, it can have a devastating impact on the daily functioning (Murray, 1985; Frcal, Kraft, and Coryell, 1984 cited in Schwartz, Coutlhard-Morris, and Zeng, 1996) and the overall wellbeing of the majority of people with MS. In addition, fatigue is also a major reason for unemployment among MS patients (Edgely, Sullivan, Dehoux, 1991) but this is outside the scope of this paper (See McLaughlin, Bell, and Stringer, 2004 for MS and employment).
The prevalence of fatigue among people with MS suggests that approximately 77% of patients experience fatigue to varying degrees (Frcal et al. , 1984) as opposed to the original statistics reported by Ivers and Goldstein (1938) which suggested only 3% experienced it. However, fatigue among MS patients is not of a homogenous nature (Schwartz et al. , 1996). Four specific types of fatigue have been distinguished out of which one is unique to MS: a. Physical exertion (experienced by general population after strenuous physical activity) b.
Depression (change in appetite, sleep disturbance, poor self esteem and other clinical signs) c. Nerve Impulse Fatigue (nerve impulses which control particular muscles are overworked) and d. Idiopathic Lassitude (abnormal sense of tiredness or lack of energy – unique to MS patients). Idiopathic lassitude has been referred to as a feeling of tiredness that is disproportional to the amount of energy expended and to the level of disability (Scheinberg et al. , 1980). Patients have described it in terms of weakness, tiredness, fatigue, and lack of energy or stamina (Monks, 1989). Similarly, Krupp et al. 1988) described fatigue in MS as a sense of physical tiredness and lack of energy which is distinct from sadness or weakness. However, it is indefinite whether these descriptions differentiate this type of fatigue from the previous types discussed above (Schwartz et al, 1996). Patient surveys report that fatigue in MS generally occurs daily, and worsens as the day progresses (Krupp, 1988) usually resolves within a few hours and may fluctuate in length (Frcal et al. , 1984 cited in Schwartz et al. , 1996).
Normal adults and MS patients both report that fatigue is aggravated by exercise, stress and depression (Krupp et al. 1988) whereas it is reduced by rest, sleep, sex, positive experiences (Krupp et al. , 1988), moderate exercise, relaxation/prayer, and cool water (Frcal et al. , 1984 cited in Schwartz et al. , 1996). To distinguish this idiopathic lassitude from other types of fatigue, researchers have looked at features that differentiate fatigue in MS from the experiences of normal or other patient populations. When compared with a normal population, fatigue in MS “worsens with heat, prevents sustained physical activity, interferes with role performance, and causes frequent problems” (Schwartz et al. 1996 p. 166).
Spasticity Another important functional limitation brought about by MS is spasticity. This term generally denotes various forms of stiff muscles, increased muscle tone (degree of resistance to flexing a muscle) and hyperactive reflexes (Nicolson and Anderson, 2001). Immobility and contractions are common symptoms of severe spasticity. The spasticity in MS patients is caused by plaque formation in the white matter in the spinal cord (Wassem and Dudley, 2003). The plaques interfere with the motor pathways and instigate an increase in the excitory responses within them.
It has also been found that the longer an individual has MS the more chances of him/her suffering from spasticity (Nicolson and Anderson, 2001). The Multiple Sclerosis Society (1999) conducted a study which found spasticity to be clinically significant and requiring medical treatment in 47% of the sample. 74% of the sample had some experience of spasticity and of those 70 percent agreed that the severe spasms and pain affected their quality of life. Spasticity can physically affect a person in a number of ways where the lower limbs are typically more severely affected than the upper limbs.
The following effects of spasticity are presented which debilitate MS patients and limit their day to day activities (Nicolson and Anderson, 2001): * Difficulty moving limbs * Loss of dexterity * Fatigue * Muscular shortening and deformities * Uncontrolled spasms While there is evidently some overlap with the neurological dysfunction caused by MS itself (e. g. bladder dysfunction and fatigue), spasticity has a distinct and additional physical limitation of these dimensions (Charmaz, 1987).
Its treatment is multi-disciplinary and focuses around physical/physiotherapy, management of exacerbating factors and drug treatment, all of which target individual goals such has improving function and relief from pain (Ward, 1999). Psycho-historical perspective The functional limitations of symptoms of MS as discussed earlier, threaten individual wellbeing and quality of life. Core values such has health and independence have shaped the Western ideas of quality of life. Almost 20 years ago, Irving Zola wrote “We must expand the concept of independence to include both physical and intellectual achievements.
Independence should take into account not only quantity of physical tasks but also quality of life” (p. 355). Statements such as these contributed to societies focus on the treatment of persons with MS and other disabilities as a civil rights issue. The fight for independence through an acknowledgement of interdependence precipitated the change in social policy which outlined fair treatment of persons with disabilities (Harrison, 2002). This section of the essay will briefly consider an important critique which has emerged to challenge status quo assumptions about disability; the Disability Rights Movement (DRM) in America.
It provides a strong argument which interrogates the medicalized view that has significantly shaped public perception of disability. Historically, the only choice people with disabilities had in their personal struggle to survive was to individually resist isolation, even death, by relying on others. This meant, practically speaking, begging and becoming dependents of family or charities. That has begun to change. Now there is a movement of empowered people that seeks control of these necessities for themselves and their community. Charlton, 1998, p. 165) Disability has been present in a shadow if not in print throughout history yet history has failed to include disability other than in medical case histories (Longmore and Umansky, 2001). With an aim to fill in the historical gap to include disability in history, Longmore and Umansky have edited an anthology of essays that capture the social cultural and political history of disability and disability rights activism. The origin of the DRM is generally associated with the late 1960s through to the present.
During this time, civil rights protests for accessible housing, transportation, employment and education invited new debate about self determination and the ‘real’ meaning of access (Longmore and Goldberger, 2000). Studies show that disability advocates challenged public perceptions and raised consciousness about social justice and living conditions for the millions of people who live with disabilities (e. g. Shapiro, 1993; Block, 1997). The DRM features a rich and varied history of emancipation by individuals claiming rights and demonstrating actions that should have earned a more pivotal role in western history (Ware, 2001).
Because the role of the DRM has been neglected from common understanding, its reintroduction into the collective consciousness will prove to be a long and arduous process. Having considered the social backdrop that MS has evolved in, the following sections will present psychological issues surrounding MS and then focus on specific psychological impacts of spasticity and fatigue, followed by a collective look at societal reactions and attitudes towards MS and its patients. Psychological Issues and Adjustment to MS
The debilitating nature of the disorder and its unpredictable natural development causes uncertainty about the future health and well-being of MS patients. Thus, it is not surprising for MS related symptoms to lead to negative emotional responding. The degree to which this occurs may be partly dependent on the way in which people cope with MS and the dynamic symptomatology related to the disability (McCabe, McKern, and McDonald, 2004). MS patients are required to cope with deteriorating health, changing social and close relationships, and an increased need for support (McCabe et al. 004). Their well being is largely dependent on how they adjust to such changing circumstances. It is also conceivably difficult for the individual to cope with events and changes which are beyond his/her control thereby leading to negative reactions, helplessness and cause depression (Feinstein and Feinstein, 2001). MS patients have a significantly increased rate of depression compared to the general population. Studies have shown point and lifetime prevalence rates of major depression to be 15 and 50% respectively (Minden and Schiffer, 1990).
An evaluation of all these variables and their inter relationships is needed to provide an assessment of why different people with MS respond in different ways to the same objective situation, why they use diverse coping strategies and the effect these strategies have on psychosocial adjustment (McCabe et al. 2004). One potential reason for differential coping strategies and different levels of adjustment is that individuals who are more debilitated or have experienced the illness for a longer period may demonstrate a more impaired response. Substantiating this claim, Devins et al. 1996) reported that as the level of disability among people with MS increased, the psychosocial functioning (psychological well-being and level of distress) decreased. Conversely, another study found no relationship between mood and severity or duration of MS, but found that levels of both mental and physical fatigue were increasing as the level of anxiety and depression went up (Ford, Trigwell, and Johnson, 1998).
However, the degree to which participants coped with MS symptoms and how effective the coping strategies were in alleviating fatigue or negative affect was not explored (McCabe et al. 2004). Noy et al. (1995) also reported that depression and anxiety were not related to disease duration and severity, but suggested that denial and other coping strategies may confound the levels of negative affect experienced by participants. Even though coping strategies were not the major focus of the above studies, the reason for the mixed results in the respondents affective reactions may be due to the differential response of the participants to the illness, particularly the coping strategies they used.
Research has found that avoidance and other variations of emotion-based coping were associated with poorer adjustment (depression, social adjustment, distress) among people with MS and that problem-based coping was associated with some aspects of improved adjustment (Pakenham, Stewart, and Rogers, 1997). In a further longitudinal study, Pakenham (1999) measured reliance on problem-focused coping, reliance on emotion-focused coping, and level of disability at Time 1. Then at Time 2 (12 months later) depression, social adjustment and distress were measured.
The study found that levels of depression, social adjustment and distress were predicted by less disability at Time 1 along with greater reliance on problem-focused coping and less reliance on emotion-focused coping at Time 1. Further studies on adjustment have typically been based on the coping model of Lazarus and Folkman (1984) to MS have also focussed on psychosocial factors that are amenable to intervention. Results suggest that perceived stress and coping strategies such as avoidance and wishful thinking contribute to difficulties in adjusting to MS (Jopson and Moss-Morris, 2003).
On the other hand, personality traits such as optimism coupled with problem-based strategies which focus on maintaining health or ways which compensate for the disability, and “cognitive coping strategies such as positive reframing and goal setting appear to enhance adjustment” (Jopson and Moss-Morris, 2003; p. 504; Jean, Paul and Beatty, 1999 cited in Jopson and Moss-Morris, 2003). However, there is even some evidence that patients’ perception of their illness may play a more important role in adjusting to the illness than their actual coping strategies employed. Wineman et al. 1997) assessed MS patients’ perceptions of the unpredictability of their illness in along with coping strategies. They reported illness unpredictability to be more important as a predictor of adjustment than coping. Similarly, a number of studies using the illness representation model show that perceptions of illness by patients is more important than coping strategies used (Heijmans, 1998). Spasticity and Fatigue: Psychological Impacts Nicolson and Anderson (2001) conducted a qualitative and in depth study where they sought to understand MS related spasticity and its effect on quality of life and the way it is coped with.
Their research considered subjective perceptions of the psychosocial impact of MS related spasticity and the various ways in which people with MS experience and give meaning to the spasticity-related problem in the context of their life. They found their objectives met by the identification of 5 distinct themes relevant to their aims which were constructed from the clusters of subthemes. They identified i) living with the physical effects of spasticity ii) embarrassment, iii) emotional and psychological problems, iv) friends and relations and v) healthcare provision.
The themes emerged as a result of three similarly focused discussions thus the content and labels of the themes were expected (Nicolson and Anderson, 2001). The psychosocial aspects of MS (if not directly related to spasticity) have already been discussed, but the subthemes derived from the transcripts provided details of the context in which MS and spasticity related symptoms are experienced (Nicolson and Anderson, 2001; their emphasis). There seemed to be an overlap in the way that MS symptoms and spasticity were brought together.
It was expected that for the respondents, there was little need for separating them, as they were all part of a very individualised experience of the disease, and their concerns were more about their quality of life and the impact of the disease. It is clear that this disability brings the body beyond the control of the individual and attacks the sense of the autonomous self (Charmaz, 1987) and makes it near impossible to regard oneself as an integrated, competent entity with a future (Nicolson and Anderson, 2001). Fatigue also seems to have a similar psychological impact.
A closer examination of the qualitative features of fatigue in MS patients demonstrated that 67% of MS patients as compared with none of the normal healthy adults reported that their fatigue impaired their ability to perform daily responsibilities (Schwartz, et al. , 1996). Therefore, because fatigue in MS appears to have a correlation with impaired role performance, it would be more appropriate to measure fatigue in terms of subjective severity and in terms of its impact on daily activities. Although clinical depression may cause fatigue among normal able-bodied adults (Krupp et al. 1988), fatigue in MS has not been associated with depression (Krupp et al. , 1989). Likewise, pharmacotherapeutic interventions for fatigue in MS do not affect depression (Canadian Research Group, 1987), and MS patients who suffer from fatigue are less depressed than chronic fatigue syndrome patients who report comparable levels of fatigue (Pepper et al. , 1993). Therefore, it can be concluded that MS and its symptoms have various neurological and psychosocial factors which have an impact on the daily functioning of the individual and his/her adjustment to the disability.
However, one of the difficulties in interpreting the literature on adjustment to MS is that studies often only consider a single area of adjustment such as depression (Wineman, 1990), self esteem (Matson and Brooks, 1977) or illness related disability (Ridder et al. , 2000). Thus, there is a strong need to operationalise adjustment through a range of variables including physical, vocational and social disability, fatigue levels, self esteem and a number of affective variables (Jopson and Moss-Morris, 2003).