Personal Illness Narratives: Rheumatoid Arthritis (RA)

Personal infirmity Narratives Rheumatoid Arthritis (RA)IntroductionThis essay employs excerpts from the story of a 38 year old woman named Francesca, a lady who has been apt(p) a diagnosis of decrepit arthritis (RA), to illustrate key concepts physical body the sociological, and psychological literary scats. This approach allow for illustrate the writers ability to critically appraise the literary works, its relevance to the narrative in question, and using narrative, places these concepts within a real life clinical situation. This in turn provides insight into the value of narrative as a methodological approach in the 21st Century and how it intertwines with the prolific tapestry of sociological theories and concepts that be available to the researcher studying the current sociological evidence base. For the procedure of this assignment, peer reviewed articles and textbooks were searched within the past 10 years.The work introduces RA as a clinical entity (pivotal to consciousness the comments of Francesca) and goes on to outline the use of narrative, get downicularly its emolument in the study of degenerative disorder. The essay then goes on to coer some key important issues, namelyThe biomedical versus the sociological approach of disease managementThe development of Personal Illness NarrativesSociological perspectives on printingChronic Illness and Disability well-disposed social organization of medical k directlyledge and the political science of DisabilityLabelling flaw.For each of the above, concepts are presented and mapped against selected statements from the narrative of Francesca (written in italics for clarity). These statements illustrate real world info gleaned from Francesca valuable comments that are grounded in the experiences of a soulfulness donjon with a chronic disease. The work also contains an appendix comprising a reflective postscript which outlines the way that the work evolved from earliest outline, to the finished product.Rheumatoid arthritis (RA) is a chronic inflammatory disorder that affects not only the synovial joints but multiple body systems (Goodacre 2008). The exact cause of RA remains unknown it is a disease that affects more women than men, often of a new(a) or middle age demographic un equivalent osteoarthritis which affects predominately older community. RA follows a somewhat occasional course of exacerbations and remissions. RA carries huge psychological problems in view of its unknown aetiology, uncertain prognosis, and hurt of function. Additional symptoms include early morning stiffness, pain, limitation of activities of nonchalant living, and socio- economic problems inas often as it whitethorn apply a severe impact upon a persons ability to work and function in society (Kojima et al 2009). The raillery now begins with a section on models of illness.Biomedical and biopsychosocial models of diseaseThe biomedical model of health takes the reductionist view tha t people are biological entities (Lewis 2009 p745). In the clinical management of RA at that place is some merit in this biomedical approach, for congresswoman the monitoring of inflammatory mediators in the blood as a marker of disease activity or responses to drug intervention is well established in the literature (Lee Kim 2009). This biomedical approach is reinforced by the GP comments from the narrative, i.e. That there was no cure and that the tablets were the key to preserving normal function. This approach may contribute to Francescas frustration, as it ignores the wider psychological and sociological ramifications of living with a chronic enfeeble disease such as RA. It is unclear form the narrative whether the GP tempered his comments by adding that there are means by which the signs and symptoms of RA give the sack be successfully managed.Critical appraisal of the literature reveals that biopsychosocial models advocate a more holistic view of illness, for example accor ding to Smith (2002) the biopsychosocial model seeks to hook not only the client and his or her illness but also their capacity to deal with being ill. The value of adopting the narrative approach as part of the biomedical model is effectively illustrated at the point where Francesca statesI just burst into tearsAt the perceive effect that this illness pass on have upon her loss of function in the future.So whereas the biomedical model will operationalise function using objective outcome measures, here the use of narrative permits a biopsychosocial approach that provides rich client centred data on how it feels to be diagnosed with chronic and currently incurable disease. This in turn git help to inform our understanding of Rheumatoid arthritis as a disease thereby influencing the social construction of medical knowledge by giving voice to service users (Balen et al 2009).The Study of Personal Illness Narratives.Illness narratives concern a persons views and beliefs about their illnesses and the effect on their lives (Hydn 2007). There is increasing acceptance and recognition of the valuable usage that such grounded narratives play in understanding the journeys that people with chronic diseases such as RA have to embark upon if they are to manage their illness on a day to day basis. For example Haidet et al (2006) found in a narrative study of people with diabetes that people narrated four illness-management strategies whose story elements were in dynamic interplay, each with unique variations for each individual revealing a level of complexness that had not been previously pull outd.As a method, narrative provides rich data (Furman Cavers 2005 Poindexter 2002) and in this case gives a voice to Francesca that would former(a)wise remain unheard (Grills 1998).Much can be gleaned from studying Francescas narrative, for example Francesca begins to paint a realise of her hopes and fears upon being given a diagnosis of RA combined with an insight into her pa st and thoughts about the future.Francescas narrative provides us valuable insight into her views of the self- a key component of narrative (Voilmer 2005), her relationships to others, and how these relationships have changed or may change in the future. In her narrative Francesca gives us some insight into the pain of living with rheumatoid arthritis, in her comments we can detect also a stark dichotomy in that she notes how healthy she had been in the past then uses the term Excruciating to describe her current pain, thus Francescas narrative hints at the loss of self in that she will no longer be a dancer or point a valid spouse as exemplified by the narrative quote.I wont be the woman he fell in love with here she literally describes herself as becoming another person. Here Francesca is able to provide the reader or researcher with valuable learning on the loss of the self, which resonates with other narrative research (Roe Davidson 2005 Doba et al 2007). Francesca goes furth er and also hints at the change in her illness self concept (ISC) that is to say the extent to which a person is defined or consumed by their disease or disability (Morea et al 2008). Francesca also hints at the concept of disease as a biographical disruption, describe by Bury, this is said to occur when a persons planned future cannot unfold as planned. (Bury 1982)will he even want to marry me? Im too young to have this.What makes Francescas narrative particularly interesting is the fact that she is a twin this may emphasise any change in self since she has in warmheartedness an unchanging control (her twin sibling) to against which to compare herself as her disease, her self identity (and possibly disability) progresses. The next section outlines sociological perspectives on depression.Sociological perspectives on depression.Francescas depression is likely to be multifactorial for example there is evidence that the disease RA itself causes depression (Kojima et al 2009) as will l iving with pain. From a sociological perspective Francescas strained personal relationships may contribute to depression, for example her fear of being rejected as a potential spouse (Waite Gallagher 2001), see below.will he even want to marry me?This feeds in to the earlier section on biomedical versus biopsychosocial models of health and illness and the different paradigms or world views in which they are situated. A biomedical explanation of depression is likely to focus on the biochemical aspects of the person whilst a more sociological approach would sleep with the impact of socio economics, personal relationships and so on (Covic et al 2003). Caution is fatalityed however here since the pithy excerpt of narrative that we have provides no demand evidence that Francesca is in fact depressed, indeed a review of the literature suggests that there is a tendency to over diagnose depression (Parker 2007).Chronic Illness and Disability.A chronic incurable disease such as RA would require Francesca to make significant adjustments to her life over time. The sociological literature now provides increasingly refined conceptualisations of these adjustments, acknowledging that the experience of chronic disease necessitates adaptations in multiple domains of the persons life. This adjustment is often referred to as a trajectory (Stanton et al. 2007). This concept, introduced by the sociologist Strauss in an move to capture experiences and behaviours occurring in response to chronic illness (Strauss Corbin 1998), goes beyond depicting the physiologic unfolding of disease and encompasses the total organisation of work done over the course of the illness (Strauss et al 1984). Francescas narrative hints at this changing trajectory tracing the commencement of her life changes to a time six months ago when she was much more active and defined herself as a dancer. Furthermore Francesca looks to her future and wonders about her ability to fulfil the stereotype of a perf ect spouse.It is important to hold with how Francesca and her fianc will make virtuoso of the illness. The term illness cognition has been defined as a patients own implicit common sense beliefs about their illness (Leventhal and Nerernz 1985, p. 517). When people experience symptoms, they embark upon a cognitive search which enables them to interpret and make sense of the symptoms they are experiencing. Typically a critical review of the literature distils out into five categoriesIdentity, including the description of symptoms experienced and their meaning (e.g. pain, fatigue).In the narrative Francesca describes her pain as Excruciating for example.Belief about causes (e.g. accident, genetics or stress). raft like to have a label for their symptoms for legitimisation although, once given, people are likely to interpret diverse symptoms as evidence of the label. Francesca has problems with causality and is likely to do so for the foreseeable future since there is no established medical cause for RA.Timeline (beliefs about duration and time for recovery), namely is it acute or chronic? These beliefs will be re-evaluated as time progresses.Consequences (e.g. loss of lifestyle, goals in life). These representations may only develop into more realistic beliefs over time. Francesca uses the narrative to discuss the change in her life from active dancer to unappealing spouse within the space of six months.Beliefs about controllability. (Furnham, 1989 Landrine and Klon rack up 1992, 1994)These categories are pivotal to understanding how people make sense of, and decisions about managing a changeable chronic disease such as RA. Evidence of Francesca attempting to make sense of her symptoms by embarking upon a cognitive search may be seen in the example belowI couldnt understand it Im the healthiest person I know. Ive never had problems with my health never had a day off downhearted in my life. I never go to the doctor, no matter what, Ive always been fit as a flea.From the narrative provided we also have limited information concerning Francescas partners views, for example (although not from Dave himself)Dave wore me down, telling me Ive got to see a doctorThis may be interpreted in various ways, not least that Dave was keen for Francesca to obtain a diagnosis and thereby a label to legitimise the illness, whether such labelling is disabling or enabling is not fully resolved in literature (Huibers Wessley 2006). Francescas comment does however open up the interesting issue of how partners cope with chronic disease, in RA in particular there is evidence that a strong marital relationship correlates with the couples psychological adjustment to the illness (Mann Zautra 1990). These authors go on to claim that in RA, partners are most affected by their perceived vulnerability to disease and manage ability, whereas the wives who have RA were more affected by pain itself and how they will cope with the effects of the disease- reflected in F rancescas comments belowI started having excruciating pains in my feet when I woke in the morningTo further corroborate the findings of Manne Zautra (1990) concerning male worries about coping at a more reckon level see the example belowDave has been great but he has his own worries hes just been laid off from his job and hes worrying about paying for the weddingMann Dieppe (2006) have also more recently acknowledged coping differences between males and females in RA, (n = eight women with RA ages 31-60 years and their partners, and 4 men with RA ages 43-75 years) although methodologically their sampling may be flawed in that those couples currently experiencing severe martial problems are unlikely to submit to the type of phenomenological interviews that they undertook.The social construction of medical knowledge and politics of disabilityIt is not possible in an essay of this length to provide a full account of the politics of disability, to begin with since the topic is mul ti-factorial, fluid and indeed is covered to an extent in the other sub sections of this work, furthermore we have insufficient data from the narrative to comment in depth. Kitchen and Wilton (2003) comment that our views of disability as a medical entity viewed in paternalistic terms have changed in favour or equality and empowerment. However Francesca can expect to experience a host of politically related issues, for example social exclusion and poverty (Foley Chowdhury 2007).Francesca has already stated in her narrativeIve got to work- we need the money.In terms of medicines social construction, as far back as 1982, Wright Treacher (1982) claimed that medical knowledge inevitably contains a social component incorporating moral value and prejudices, and that diagnosis ascribes a certain meaning. We still see this thirty years later where the GP abruptly (allegedly) advocates of drugs to preserve normal function. This reinforces the paternalistic medical approach. RA in its early stages does not present with any obvious physical deformity and affects the young demographic, it is conceivable that she may experience disbelief from her peers this may in turn make her life difficult in an era of financial unease, Government budgetary cuts and political uncertainty.Labelling.Labelling theory (social reaction theory) has its roots in the work of sociologist Howard Becker (Becker 1997). It centres on peoples tendency to negatively label those who are different from ourselves. As a person with chronic arthritis Francesca will not be immune to this labelling, for example being labelled as disabled or arthritic are all real possibilities. Arthritis organisations and acts such as the Disability Discrimination Act ( DDA) are at great pains to encourage activity and maintenance of full function and contribution to society, however all this may be negated by her GPs comments that there isno cure and I had to take tablets everyday to be able to function normally.Labels ca n however be positive, Francesca describing herself as glamorous for example on two occasions in the narrative, and her previous label of salsa dance teacher is something that defines her in a positive way.Yes, Im a salsa dance teacherStigmaStigma has recently been defined by Scambler (2009) as a social process, experienced or anticipated by exclusion, rejection, blame or devaluation that results from experience, perception or apt anticipation of an adverse social judgement about a person or group(p441)Francesca may feel stigmatised by all of the factors previously discussed, attitude of her GP, loss of self, worry about the future, inability to act out the role of spouse. Factors such as depression, the lack of a cause for her RA and her inability to teach salsa dancing may amplify her feelings of being stigmatised, it is also important form the wider perspective to acknowledge that stigma may affect Francescas partner. Struening et al (2001) for example reported that 43-92% of c aregivers (to people with mental health problems) reported feeling stigmatised, again this suggests that living with this disease does not only affect Francesca but also her partner.ConclusionThis essay has occupied extracts from the narrative of a 38 year old lady with Rheumatoid arthritis, to illustrate some key sociological concepts. The essay has provided a valuable hazard to map some key concepts from the literature onto a narrative excerpt. Whilst the essay has not been able to enter the field in great depth It is a testament to the thick description provided by patient narratives that such a wealth of information can be generated form a relatively short piece of description.ReferencesBalen,R., Rhodes, C., Ward,L., (2009) The Power of Stories Using Narrative for Interdisciplinary Learning in Health and Social CareSocial Work Education The International Journal, pp1470-1227.Becker, H., (1997) Outsiders. New York, NY. Free Press.Covic, T., Adamson,B., Spencer,D., Howe,G., (200 3) A biopsychosocial model of pain and depression in rheumatoid arthritis a 12-month longitudinal study Rheumatology, Vol 42 1287-1294.Doba, K., Nandrino, J.L., Lesne, L., Humez, L., C.(2008) Organization of the narrative components in autobiographical speech of lean adolescents A statistical and non-linear dynamical analysis New Ideas in Psycholog,y Vol 26 (2) pp 295-308.Foley,D .,Chowdhury, J., (2007) Poverty, Social Exclusion and the Politics of Disability Care as a Social Good and the Expenditure of Social Capital in Chuadanga, Bangladesh Social Policy Administration, Vol 41 (4)pp372-385.Furman, R. ,Cavers, A., (2005) Narrative poem as a source of qualitative data The Arts in Psychotherapy Vol 32 (4) pp313-317.Furnham, A., (1989). Overcoming psychosomatic illness lay attributions of cure for five possible psychosomatic illnesses. Social Science and care for, Vol 29 pp61-67.Goodacre,J., (2008) commonality chronic inflammatory arthropathies. in Porter,S (eds) Tidys Physiothera py 14th edition. Churchill Livinsgtone Elsevier.Grills, S..(1998). Doing ethnographic research fieldwork settings Thousand Oaks. Sage Publishers.Hahn, H., (1985)Toward a Politics of Disability Definitions, Disciplines, and Policies Social Science Journal, 1985 Vol. 22(4) pp87-105.Haidet, P., Kroll,T.L., Sharf, B.F., (2006) The complexity of patient participation Lessons learned from patients illness narratives Patient Education and Counselling, Vol 62 (3) pp323-329.Huibers,M.J.H., Wessely ,S., (2006) The act of diagnosis pros and cons of labelling chronic fatigue syndrome Psychological Medicine, Vol 36, pp895-900. Cambridge University Press.Kitchin, R. ,Wilton, R., (2003) Disability Activism and the Politics of Scale. The Canadian Geographer, Vol 47, 2003.Kojima ,M., Kojima, T., Ishiguro, N., Oguchi, T., Oba, M., Tsuchiya, H., Sugiura, F., Furukawa, T.A., Suzuki, S., (2009) Psychosocial factors, disease status, and quality of life in patients with rheumatoid arthritis. S.J Psychosom Res , Vol 67(5) pp425-31. Epub 2009 Mar 5.Lee, W.S. Kim, T.Y.,(2009) Measuring of ESR with test 1 is more useful than the Westergren method in rheumatoid arthritis. Am J Clin Pathol, 2009 NovVol 132(5) pp805.Leventhal, H., Nerenz, D.R., Steele, D.J., (1984). Illness representations and coping with health threats. In Baum A, Singer J, eds. Handbook of Psychology and Health, Hillsdale, NJ Erlbaum. pp219-252.Morea, J.M., Friend, R., Bennett, R.M., (2008) Conceptualizing and measuring illness self-concept A similitude with self-esteem and optimism in predicting fibromyalgia adjustment Research in Nursing Health, Vol 31 (6),pp563-575 make Online 21Jul2008.Mann,C., Dieppe, P.,(2006) Different patterns of illness-related interaction in couples coping with rheumatoid arthritis Arthritis Care Research, Vol 55, (2), pp 279-286.Mann, S. L., Zautra, A. J., (1990). Couples coping with chronic illness Women with rheumatoid arthritis and their healthy husbands. Journal of Behavioral Medicine, Vol 13 pp327-342.Parker, G., (2007) Is depression overdiagnosed? Yes. BMJ. Vol 335 (7615), p328.Poindexter, C.C.,(2002) Meaning from methods Re-presenting Narratives of an HIV affected caregiver Qualitative Social Work, Vol 1 pp 59.Roe,D., Davidson, J., (2005) Self and narrative in schizophrenia time to author a new story Med Humanities,Vol 31 pp89-94.Scambler, G., (2009) Health-related stigma. Sociology of Health Illness, Vol 31 Issue 3 pp 441-455 Published Online 1 Apr 2009.Smith, R., (2002) The biopsychosocial revolution. J Gen Intern Med, Vol 17(4) pp309-311.Stanton, A.L., Revenson, T.A., Tennen, H., (2007). Health Psychology Psychological Adjustment to Chronic Disease. Annual Review of Psychology, Vol 58 pp565-592.Strauss, A.L., Corbin, J.M., Fagerhaugh, B.G., (1984). Chronic illness and the quality of life, 2 Ed. St. Louis Mosby.Strauss, A., Corbin, J.M., (1998) Basics of Qualitative Research Techniques and Procedures for Developing Grounded theory. Thousand Oaks, Sage Publi shers.Struening, E.L., Perlick, D.A., Link, B.G., Hellman,F., Herman, D., Sirey, J.,(2001) Stigma as a Barrier to Recovery The Extent to Which Caregivers Believe Most People Devalue Consumers and Their Families Psychiatr Serv,Vol 52 pp1633-1638, December 2001.Vollmer, F., (2005) The Narrative Self. Journal for the Theory of Social Behaviour, Vol 35,(2), pp189-205(17) Blackwell Publishing.Waite L,J., Gallagher, M.,(2001).The case for marriage why married people are happier, healthier, and better off financially. New York, NY Broadway Books.Wehowsky, A., (2000) Diagnosis as care diagnosis as politics International Journal of Psychotherapy, Vol 5, (3), pages pp241 255.Wright, P., Treacher, A. eds., (1982) The Problem of Medical Knowledge Examining the Social Construction of Medicine (Edinburgh Edinburgh University Press.Appendix Reflective postscriptThis is written in the first person since it is a reflective piece of writingThis was a challenging yet bewitching project to complete. I was unsure how to approach the topic and how much weight to attach to the various theories available and the comments of Francesca , once it became clear that I was actually arduous to explain what was going on with Francesca by using academic theory to illustrate her comments the task became rather enjoyable. Tight word count restrictions as always meant that I had to do some brutal editing, but the positive side to this is that it makes one more selective in ones writing. For example my earliest version was laboured on sociological theory and light on mapping this theory to the comments of Francesca, whereas the final version makes more explicit links between what Francesca says and the theory cornerstone why she says it.The fact that I had some real comments to sink my academic teeth into made the process of literature searching interesting and relevant since I was able to think about Francescas comments and her personal situation for each search that I undertook.The areas t hat gave me most difficulty were the political aspects of disability since they seemed so wide ranging and actually intertwined with everything that I was writing about. All in all I have learned a great deal about the usefulness of narrative form this project.