Multiple Sclerosis, employment and stigma: a break in everyday life

Multiple sclerosis (MS) is a chronic disease that is one of the leading causes of non-traumatic disability in young adults. As such, it has diverse care needs. Within the daily life of the population with multiple sclerosis, employment plays a fundamental role, producing alterations in the health and quality of life of people with sclerosis who lose this productive activity.

What is multiple sclerosis?

According to the National Multiple Sclerosis Society, multiple sclerosis (MS) is an unpredictable disease of the central nervous system that disrupts the flow of information within the brain, and between the brain and body.

Worldwide, it has been described that sclerosis shows a direct relationship between the prevalence and incidence of the disease and a specific geographical distribution proposed by Kurtzke in 1975², characterized by a latitudinal gradient, with prevalence increasing as it moves away from the equatorial line ^3,4.

Multiple sclerosis in data

Regarding the extent or epidemiology of the disease, multiple sclerosis Spain (MS Spain) provides the following figures that come from the Spanish Neurological Society in 2019::

2,500,000 people have MS worldwide.
700,000 people have MS in Europe.
55,000 people have a diagnosis of MS in Spain⁵.

Therefore, the prevalence rate in Spain is considered to be medium-high, with the highest figures originating in areas with higher latitudes. Over the last few decades there has been a gradual increase in this prevalence, with the figure currently standing at between 80-180 cases per 100,000 inhabitants⁶.

Everyday life in people with multiple sclerosis

Given that MS currently has no curative treatment, it is essential to implement strategies aimed at preventing the progression and complications of the disease, as well as coping with and accepting the diagnosis.

Stigma and self-concept

One of the most neglected aspects in this population is the self-perception of stigma related to their daily life. The definition of stigma has evolved considerably. From Goffman’s classic conception of stigma as an attribute or characteristic that expresses a devalued social identity, the concept has been broadened to include stigma as a social process rather than as an attribute. This stigmatization process begins when the dominant groups in a society identify certain human differences, culminating when these differences lead to various forms of rejection, exclusion and discrimination⁷.

It is interesting to establish the close relationship between the term stigma and self-concept. The term self-concept, like that of stigma, has also undergone modifications and evolution over the years. Traditionally, it was understood as the set of perceptions that a person maintains about him/herself based on personal appraisal and that of significant others, advancing in the 21st century to the concept that he/she has of him/herself as a physical, social and spiritual being. Kielhofner, for his part, recognizes that participation in productive activities plays an important role in the creation of the identity of the human being⁸.

Both concepts show a great influence in the daily life of people with multiple sclerosis, given that the resulting processing of a body that reacts, added to the confrontation that these produce in the environments and an attitude that is not always favorable9 , generates that these people show problems in the participation of daily activities and therefore obtain a negative result in the occupational balance.

Employment

Work, or employment, is part of the human being and is understood as that capacity of a remunerated nature that is exercised for a specific period of time. The loss of a job is usually one of the greatest concerns of all people. Therefore, when talking about multiple sclerosis, job loss is a common event that negatively affects the person’s quality of life.

Authors such as Kielhofner (one of the main influential theorists of Occupational Therapy), recommends that participation in work plays a fundamental and primordial role in the creation and maintenance of the identity of the human being.

On the other hand, the Framework for Occupational Therapy Practice goes further. In it, the term “work” includes the activities necessary to participate in paid employment or volunteer activities. In addition, it also encompasses different items such as: job search interests and activities, job search and acquisition, job performance, or preparation and adjustment for retirement, among others.

Work activities in the lives of people with MS

As in the basic activities of daily living and instrumental activities, work activity has also acquired a very important value in the daily routine of those affected by sclerosis after the diagnosis, where fatigue and cognitive problems play a fundamental role¹⁰.

Moreover, several authors report that job loss is one of the major concerns of users with MS^11,12The change in the worker’s role can lead to a decrease in self-esteem and great frustration. This is why there are also alterations in the health and quality of life of users after the loss of this productive activity^13,14. In addition, in the vast majority of cases, self-esteem is related to work achievements, resulting in a destructuring of the users’ life goals, which have to be modified or adapted.

Self-perception of multiple sclerosis: the person in front of his occupations

Therefore, I would like to bring you closer to a study that we conducted in 2019 and that will see the light in the month of June within the new issue of the Chilean Journal of Occupational Therapy. In this study, it has been proposed to know the perception about the daily life of the population with multiple sclerosis in the area of A Coruña, from a quantitative and qualitative perspective. Among the results, it is worth highlighting the loss of the role of worker in the daily life of these participants.

During the interviews and administration of tools, paid work has been one of the most relevant topics, even more so than occupations related to socialization or leisure, given that the vast majority of those affected have been forced to abandon their work due to the impossibility of carrying it out or making it compatible with the appropriate rehabilitation treatment.

Extracts from interviews with people with multiple sclerosis

U5: “My professional activity no longer exists and it was something, let’s say quite important both quantitatively and qualitatively in my life. (…) And that… I miss working very much”

U10: ““I was distressed and I needed to feel fulfilled. And I asked to be discharged… I was working for fifteen minutes and my leg did not resist. So since then I have been on sick leave and my wallet has noticed it… I have had to stop participating in some of the things I liked”

This process presents diverse stages, from the diagnosis of the disease, going through a process of assimilation at the initial moment until the outcome, seen as the loss of the job. Likewise, it is observed that this has a negative impact on the daily life of this population, with what this implies for their social role and identity, both of which are altered.

U6: “The first year I was on sick leave for almost the whole year, so my expectation was to go back to work and well… Well, by January I join… By March I join… And when you see that this is not going to happen and that they give you the disability, you say: poof, but what’s going on here? My life is over…”

The change in the role of worker can generate a decrease in self-esteem and great frustration. This is why there are also alterations in the health and quality of life of patients after the loss of this productive activity. In addition, in the vast majority of cases, self-esteem is related to work achievements, causing a destructuring of the users’ life objectives, which have to be modified or adapted.

Bibliography

García A, Ara JR, Fernández O, Landete L, Moral E, Rodríguez-Antigüedad A. Consenso para el tratamiento de la esclerosis múltiple 2016 [Consensus for the treatment of multiple sclerosis 2016]. Sociedad Española de Neurología. 2017;32:113–9. doi:10.1016/j.nrl.2016.02.026.

Kurtzke JF. A reassessment of the distribution of multiple sclerosis: Part One. Acta Neurol Scand. 2009;51:110–36

García-Cano B, García-Cano F. Epidemiología de la Esclerosis Múltiple: revisión bibliográfica [Epidemiology of multiple sclerosis]. Hygia de Enfermería. 2017;94:24–7

Koch-Henriksen N, Sørensen PS. The changing demographic pattern of multiple sclerosis epidemiology. Lancet Neurol. 2010;9:520–32. doi:10.1016/S1474-4422(10)70064-8.

Esclerosis Múltiple España. Qué es la Esclerosis Múltiple [Internet] [What is Multiple Sclerosis]. [Consultado el 14 de Diciembre de 2018]. Disponible en: https://www.esclerosismultiple.com/esclerosis-multiple/que-es/ .

Pérez-Carmona, N., Fernández-Jover, E., & Sempere, Á. P. (2019). Epidemiology of multiple sclerosis in Spain. Revista de Neurologia, 69(1), 32–38. https://doi.org/10.33588/rn.6901.2018477

Kielhofner G. Model of Human Occupation: theory and application. Lippincott Williams & Wilkins; 2008.

Kos D, Duportail M, Meirte J, Meeus M, D’hooghe MB, Nagels G, et al. The effectiveness of a self-management occupational therapy intervention on activity performance in individuals with multiple sclerosis-related fatigue: a randomized- controlled triall. Int J Rehabil Res. 2016;39:255–62.

More references on multiple sclerosis

Kobelt G, Langdon D, Jönsson L. The effect of self-assessed fatigue and subjective cognitive impairment on work capacity: The case of multiple sclerosis. Mult Scler. 2019;25(5):740-749. doi:10.1177/1352458518769837

Maurino, J., Martínez-Ginéz, M. L., García-Domínguez, J. M., Solar, M. D., Carcelén-Gadea, M., Ares-Luque, A., … Honan, C. A. (2020). Workplace difficulties, health-related quality of life, and perception of stigma from the perspective of patients with Multiple Sclerosis. Mult Scler Relat Disord, 41.

Evangelina V. Cores, Sandra Vanotti, Débora I. Burin, Daniel G. Politis, A. V. (2014). factores asociado con la situación de pacientes con EM [factors associated with the situation of patients with MS]. Neurologia.Com Rev Neurol, 58(4), 175–183.

Vidal, V., & Abal, P. (2021). Alimentación, descanso y sueño: repercusiones en el desempeño ocupacional de las personas con esclerosis múltiple. Npunto, IV, 165–171.

Vidal, V., & Abal, P. (2021). Alimentación, descanso y sueño: repercusiones en el desempeño ocupacional de las personas con esclerosis múltiple [Eating, rest and sleep: implications for occupational performance in people with multiple sclerosis]. Npunto, IV, 165–171.

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Cognitive rehabilitation exercises for people with multiple sclerosis

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