scholarly journals Chronic Illness as a Source of Happiness: Paradox or perfectly normal?

2013 ◽  
Vol 5 (1) ◽  
pp. 265-278 ◽  
Author(s):  
S. Hoppe
Keyword(s):  
Multiple Sclerosis ◽  
Chronic Illness ◽  
Medical Anthropology ◽  
Disability Studies ◽  
Happiness Paradox ◽  
Perfectly Normal

In this paper I analyse the relation between happiness and chronic illness from the perspective of medical anthropology and disability studies. By looking at the disability paradox I deconstruct society’s view of people with a disability. I argue that the disability paradox is problematic as it ignores the views of people with a disability. Moreover, such a paradox reinforces the idea that living with a chronic illness or disability is a devastating experience and that happiness and disability are mutally exclusive realities. Based on empiric examples of people who suffer from Multiple Sclerosis I demonstrate that people with a chronic illness can experience happiness in spite of illness, but also as a consequence of it. 

Emotional responses of children and adolescents to parents with multiple sclerosis

2005 ◽  
Vol 11 (4) ◽  
pp. 464-468 ◽  
Author(s):  
Rivka Yahav ◽  
Janine Vosburgh ◽  
Ariel Miller
Keyword(s):  
Multiple Sclerosis ◽  
Chronic Illness ◽  
Children And Adolescents ◽  
Emotional Responses ◽  
Emotional Reactions ◽  
Control Group ◽  
Household Tasks ◽  
Active Protection ◽  
Fear And Anxiety

The effect of a chronic illness of one parent on children is determined by a complicated interaction of various emotional components. Our focus was on the children’s and adolescent’s emotional reactions and feelings towards their multiple sclerosis (MS)-affected parents, including: degree of responsibility, obligation and concern, yielding behaviour and active protection, fear and anxiety related to the state of illness, their sense of burden in connection with household tasks and errands, and anger. Fifty-six children, ages 10=18, each having a parent with MS, were examined. The results were compared to a control group of 156 age-matched children with healthy parents. Feelings were examined by means of a questionnaire previously constructed by us. We found that children of parents with MS felt more responsibility and obligation than children of healthy parents. They also exhibited more yielding behaviour, more fear and anxiety related to states of illness, a greater sense of burden and a greater degree of anger. We consider the interaction between the sex of the parent and the sex of the child in connection with these feelings and discuss the implications of the ‘parental child’ role of these children.

Multiple sclerosis and quality of life: a qualitative investigation

2002 ◽  
Vol 7 (3) ◽  
pp. 151-159 ◽  
Author(s):  
Maggie Somerset ◽  
Deborah Sharp ◽  
Rona Campbell
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Chronic Illness ◽  
Social Services ◽  
Personal Control ◽  
Theory Approach ◽  
Illness Trajectory ◽  
Personal Assistance ◽  
Acceptable Quality

Objectives: Many people who live with long-term illness experience a decline in their quality of life. The primary aim of this qualitative study was to identify aspects of life that contributed to the quality of the lives of people who had one particular chronic illness, namely multiple sclerosis (MS). A secondary aim was to use this information to highlight areas where there was potential for effective intervention by health or social services. Methods: Sixteen people with MS who lived in a variety of circumstances and had a range of disabilities were interviewed in depth. Views relating to personal experience of chronic illness, diagnosis, living with disability, and conventional and alternative treatments were explored. Transcripts were analysed using a grounded theory approach. Results: Analysis of the interviews revealed that being subjectively reasonably happy and as socially active as desired was central to an acceptable quality of life. The extent of the personal control that participants were able to exert and their individual illness trajectory were found to be central to whether or not this aim was achieved. In addition, the importance of social comparison was revealed, although its influence upon quality of life was somewhat inconsistent. A number of other factors were found to play an influential role in the quality of people's lives. These are described and plausible links between factors are proposed. Conclusions: Many aspects of living with chronic illness are unavoidable, but health or social intervention can affect others. Inappropriate personal assistance may result in dependency, which detracts from personal control and worsens quality of life. When appropriate, however, support may have beneficial consequences. By recognising the specific factors that link personal control and the illness trajectory, appropriate and timely support can be negotiated.

scholarly journals (Dis)abling practices and theories?: exploring chronic illness in disability studies

2016 ◽  
Vol 19 (1) ◽  
pp. 1-6 ◽  
Author(s):  
Hanna Bertilsdotter Rosqvist ◽  
Hisayo Katsui ◽  
Janice McLaughlin
Keyword(s):  
Chronic Illness ◽  
Disability Studies

scholarly journals “Like Bananas with Brown Spots”

2019 ◽  
Vol 8 (4) ◽  
pp. 169-194
Author(s):  
Aparna Nair
Keyword(s):  
Chronic Illness ◽  
Disability Studies ◽  
Research Process ◽  
Social Contexts ◽  
Individual Perceptions ◽  
Building Resilience ◽  
The Family ◽  
Indian Childhood ◽  
Building Community

Employing an analytical autoethnographic methodology, this paper examines how the polysemic meanings and punctuated character of epilepsy produces social and corporeal vulnerabilities in an Indian childhood. The paper further establishes the importance of the family in influencing individual perceptions and constructions of chronic illness as well as in building resilience or increasing vulnerabilities. In examining the process of research, this paper also makes an argument that disabled researchers in the field can become vulnerable in multivalent ways but also argues that the act of disclosure of epileptic/disabled identities during the research process can become central to building community and resilience. This paper also complicates the often North-centric narrative of disability studies and underlines the importance of social contexts around individual categories of disability or chronic illness.

scholarly journals Impacts of chronic illness on families; Experiences of Iranian family of patients with Multiple Sclerosis; A Qualitative Study

2017 ◽  
Vol 5 (1) ◽  
pp. 13
Author(s):  
Hossein Ebrahimi ◽  
Hadi Hasankhani ◽  
Hossein Namdar ◽  
Esmail Khodadadi ◽  
Marjaneh Fooladi
Keyword(s):  
Multiple Sclerosis ◽  
Chronic Illness ◽  
Qualitative Study ◽  
Iranian Family

scholarly journals Un/covering: Making Disability Identity Legible

2017 ◽  
Vol 37 (1) ◽  
Author(s):  
Heather Dawn Evans
Keyword(s):  
Chronic Illness ◽  
Disability Studies ◽  
Life Experiences ◽  
Daily Life ◽  
Identity Negotiation ◽  
Pivotal Role ◽  
Disability Identity ◽  
Social Settings ◽  
Disability Stigma ◽  
Invisible Disabilities

This article examines one aspect of disability identity among people with non-apparent or "invisible" disabilities: the decision to emphasize, remind others about, or openly acknowledge impairment in social settings. I call this process "un/covering," and situate this concept in the sociological and Disability Studies literature on disability stigma, passing, and covering. Drawing on interviews with people who have acquired a non-apparent impairment through chronic illness or injury, I argue that decisions to un/cover (after a disability disclosure has already been made) play a pivotal role for this group in developing a strong, positive disability identity and making that identity legible to others. Decisions to pass, cover, or un/cover are ongoing decisions that stitch together the fabric of each person's daily life experiences, thus serving as primary mechanisms for identity negotiation and management.

scholarly journals Maintaining quality of life in multiple sclerosis: fact, fiction, or limited reality?

2010 ◽  
Vol 68 (5) ◽  
pp. 726-730 ◽  
Author(s):  
Alina Gomide Vasconcelos ◽  
Vitor Geraldi Haase ◽  
Eduardo de Paula Lima ◽  
Marco Aurélio Lana-Peixoto
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Control Group ◽  
Pertinent Data ◽  
Related Quality ◽  
Health Related ◽  
Healthy Control ◽  
Happiness Paradox ◽  
Important Marker

Health-related quality of life (HRQOL) is an important marker for health-related impacts on individuals with chronic diseases. This HRQOL study compares multiple sclerosis (MS) patients to a socio-demographically-matched healthy control group. HRQOL was assessed by means of a modular instrument (DEFU/DEFIS), which allows comparisons between diseased and healthy individuals. Main goal of the study was to obtain pertinent data to build a more reliable theoretical framework concerning HRQOL in MS. Another aim was to test the hypothesis of the so-called happiness paradox, according to which disabled individuals could maintain reasonable levels of HRQOL. Results show that MS individuals present lower levels of HRQOL in comparison to healthy controls, arguing against the happiness paradox hypothesis. Preservation of HRQOL levels against certain levels of disability may be restricted to a group of patients.

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