My Life with Rheumatoid Arthritis - Case Study Example

Institution : xxxxxxxxxxx Title : xxxxxxxxxxx Tutor : xxxxxxxxxxx Course : xxxxxxxxxxx @2012 SECTION A: Case Study I am a 35 year old, living in Mt. Isa, North Western Queensland with my husband and a seven year old son. I suffer from Rheumatoid Arthritis (RA) and have had to cope with it since its diagnosis five years ago. It has caused some deformity in my feet and hands. Specifically, my fingers have developed bumps, which I came to know are called nodules. It has also limited movement in my wrists, while my toes have developed calluses at the bottom and the pads of the feet. My knees have not been spared either, as they are always a bit swollen. Because of my condition, a lot of the things which people even do not think much about, for instance cooking, bathing, sleeping and driving are very challenging to me. SECTION B: Disability Awareness a) Effects of the Disability RA causes complications in various parts of the body. It usually begins with the joints, causing much pain which becomes worse during morning hours (Lahita, 2006). The pain is often symmetrical for instance occurring in both legs. It also affects the heart, doubling the chances of the patient having a heart problem and leads to chronic inflammation which causes damage to the blood vessels (Marc, 2009). According to Hochberg (2006), RA is a common cause of inflammation in the pericardium, a sac-like feature that surrounds the heart. If not treated, this can lead to fever and sharp chest pain. RA affects the lungs, with about 10% of those suffering from it also developing lung problems (Marc, 2009). This usually takes the form of inflammation of the lung lining that leads to pain during breathing, scarring of lung tissue and a heightened risk of emphysema. The condition is further associated with mood disorders and depression. Chronic inflammation has a close relation with imbalances in hormones and neuro-transmitters which in turn affect the way a person feels (Lahita, 2006). Blood vessels are on their part affected, as they narrow down and become inflamed, leading to Vasculitis. This in turn results in disease of the coronary artery. The nerves are also affected, as some RA cases are also associated with peripheral neuropathy (Marc, 2009). This is nerve damage which results in numbness and burning in the patient’s hands and feet. In addition, the inflammation of vessels denies the nerves enough supply of blood which causes even greater nerve damage (Lahita, 2006). b) Effects on the Family Unit RA’s main effect is the slowing down of mobility (1800wheelchair.com 2012). Because of this, the sufferer can no longer be able to do various simple tasks. For instance, mopping and vacuuming might have to be reassigned to another person in the household (MediFocus Guide 2012). Others will also have to open jars and do other small activities. Because of the change in responsibilities, some family members might resent the person having RA. RA patients also easily get exhausted, and other family members are therefore forced to adjust to changes in daily life so as to accommodate the patient (Tavares, 2007). Some things which were done together with the family might become impossible as RA requires more time on tasks, finding new ways of working and minimizing effort (Lahita, 2006). According to MediFocus Guide (2012), one common effect of the disease is depression. This has a direct implication on the family members. Some patients may sink into self pity, especially in times when they are having long flare-ups. The resulting emotional outbursts and sullen moods will be hard for the family as they are unable to help or even understand the kind of pain that RA causes. The family members may therefore end up with wounded feelings and frustration as a result. Tavares (2007) adds that RA is also usually not easy to detect, unless at an advanced stage. Family members may therefore believe that the patient is exaggerating the immobility and pain so as to evade certain responsibilities and chores. The sufferer will in turn feel frustrated at those who do not understand her. Lastly, RA requires a lot of medical intervention. The other family members will therefore have to spend more time on the patient, and this might be a challenge to some. c) Sources of Organizational Support At the national level, one organization offers particularly helpful assistance to people with RA. Arthritis Australia has a website that anyone can use to access useful information that is relevant to his or her state or territory. In my case, the relevant site is www.arthritis.org.au. This has a lot of information relating to seminars, self-management courses and other forms of support groups available (Arthritis Australia, 2010). There is also Arthritis Queensland Support Groups, an organization which offers opportunities for people having different musculoskeletal conditions to join hands in improving their situations through discussion and other forms of approaches. It has branches around Queensland State, including Mt Isa, and it works according to the principles of self-help groups. Its members can share ideas, information and experiences that help in self-knowledge and support of others (Rogers-Clark & Mccarthy, 2005). Locally, Rheumatoid Arthritis Support Groups Mt Isa is a resourceful group that also carries blog and website information that is relevant for patients (Bullot & Woyzbun, 2009). SECTION C: DAILY LIVING Time and Activity Difficulty on a Scale of 1-4 The Barriers Faced Personal Solution to Challenges Approximate Financial Cost 6.40am: Getting up from bed 3 Stiffness of the knees, making standing difficult An electronic bed which is adjustable, especially its height $ 140 6.45am: Going to the bathroom 3 Difficulty in movement Having a wheelchair for in-house mobility $ 100 6.50am: Using the toilet 4 Pain and difficulty in sitting due to knee and hip stiffness Adjusting the toilet seat using a raised attachment $65 7. 10am: Getting up from the toilet seat and moving to the kitchen 2 Difficulty in movement The wheelchair will still help $0 7.20am: Preparation of breakfast for my children 3 Impaired finger dexterity Large size grip handle for knives, and use of a lid gripper pad for opening jars 0 investment as the items are already available 8.00 am: Brushing of teeth 2 Difficulty in moving hands Use of electric toothbrush and a Y- shaped floss-holder $ 20 10.00am: Daily hair shampooing routine 2 Difficulty in raising and using hands Use of a scrub brush $ 0 11.30am: Rising back to house chores after a rest 3 Inability to move my limbs due to Stiffness after rest Taking a warm shower before chores to ease joint pains $ 0 12.00pm: Cleaning the house 2 Difficulty in bending The use of a long attachment on the vacuum cleaner handle $ 10 6.00pm: Preparation of dinner 3 Difficulty in holding pans Use of special grippers for the handles $ 30 8.00pm: Cleaning of dishes 3 Difficulty in hand movement Use of a dishwasher $ 110 SECTION D: CHALLENGES 1) Social Restrictions RA causes physical activity to be harder, meaning that the patient will have to stop taking part in sports. Difficulty in moving will also make going to social places a lesser priority and as a result, the person reduces contact with others and becomes more isolated (MediFocus Guide 2012). The disease also affects social interaction in other ways. For instance, Brown (2005) explains that if a mother initially used to go to school to pick her child and took some time to talk to other parents in the school compound. RA will make getting out a difficult task therefore she remains inside and misses the chance to chat with other parents.  Social activities usually involve going out and for instance, taking alcohol. Alcohol is specifically not recommended while taking some of the RA medications. For most people, it has an immediate negative effect on their symptoms and they have to keep off it (Lahita 2006). For some therefore having to stop drinking alters their interactions with friends as it becomes difficult to indulge in their shared pastime. In addition, RA patients tend to turn down invitations, especially at night because at the time they tend to be too tired after a day of struggle (Hochberg, 2009). Both family and friendship relationships are strained when one develops the condition. According to Orto & Power (2007), the loss of independence and pain that comes with it can lead to feelings of frustration, anger and depression, which in turn affects family and close friends. Lack of understanding might lead to avoidance of the patient, therefore making him or her be isolated. There is also the tendency by the patient to be more careful in choosing friends. This is because there emerges the fear that the new friend might not to be understanding. There are instances where a friend deserts someone when diagnosed, or when the condition worsens, making him or her to fear rejection. They might therefore withdraw from social contact in many situations. Postponement of social events and commitments is a common feature in the life of an RA patient. For instance, if a woman was going for a non-work related event and feels too tired, they are likely to skip it. Some of the others may on their part think it is deliberate, especially if it is repeated, therefore straining relationships (Orto & Power, 2007). Within marriage, sexual intimacy is often limited due to the disease. The joint pains, tiredness and soreness associated with the condition might limit sexual activity, therefore making it necessary for the spouse to be understanding and accommodative. Failure to do this might create tension in their relationship (Murphy & Pardeck 2005). 2) Community/ Environmental Challenges RA patients face various environmental challenges, and the main one of these is accessibility of buildings and other areas. According to A Step Forward (2012), physical inaccessibility acts as a barrier to use of essential services. Inaccessibility is an issue in public transport, pavements and housing and reduces mobility and challenges in some transport routes usually make it hard to reach other services for the disabled. Taxis, buses, coaches and trains at times do not have provisions for us and where available, there are only wheel-chair ramps which a person with RA might at times not find useful. There are instances when one is not able to get onto a bus because of total inaccessibility. There are a few buses with low floors, but one never knows exactly at what time they will turn up, because they serve everyone else. They might also not turn up or in rare cases, might even run out of space before the disabled are fully catered for (Goggin & Newell, 2008). The absence of such buses often implies reliance on taxis. However, travelling regularly using taxi service is quite expensive. The construction of regularly used buildings such as banks, hair-dressers, high street-shops, theatres, sports centres and restaurants is at times not sensitive to the disabled. While some have removed some of the obvious barriers such as through addition of steps to the doors, there are still others that are not adequately set up. For instance, while an automatic door might be present, the aisles tend to be too narrow for a person who is using crutches (Bullot & Woyzbun, 2009). In order to deal with the environmental issues, I have learnt to utilize parking spaces for the disabled whenever I drive. I also have a list of service outlets such as offices and shopping centres that are friendly to the disabled. I avoid dependence on public transport when I am in a rush and in such instances drive to wherever am going. Because I tend to slow down when walking along pavements and other walking spaces, I tend to walk at the sides where I may not block other users. So as to deal with the environmental barriers, there is need not only to formulate regulations, but also enforce them. According to Falvo (2005), there should be greater monitoring to ensure that only people who are disabled can access special parking slots. In addition, public buses should have specific times for the special buses so that everyone will know exactly when to expect them. All passages, both in buildings and outside should be wide enough to allow for both wheelchairs and those using crutches. Stairs and steps should be made as flat as possible and should be minimally steep so as to reduce the climbing effort. 3) My Reaction in Terms of Self-Esteem Self esteem relates to how an individual views him or herself and therefore attach worth to existence (Miyahara & Piek, 2006). As a person with disability, it becomes a challenge to view oneself as first, a person. Therefore, it becomes a struggle to allow myself to view the disability due to RA as just one component of my life, and not the only one. There is also a problem relating to the stereotypes and discrimination that we face in the society (Chang & Johnson 2008). The society emphasizes a lot on looks, similarity to others and speed as the measures of how ‘normal’ a person is. This places a lot of pressure on the individual to meet the set standards and therefore the possibility of low self-esteem (Newman, 2000). Having recognized the impact of my disability on self-esteem, I would react by becoming more positive and organized in dealing with the condition. I would first minimize the negatives in my perception and maximize the positives instead. I will focus more on my abilities and overlook limitations. This does not imply failing to acknowledge my disability, but looking at and developing the abilities that I appreciate and feeling good about my work. I will avoid making unrealistic comparisons. This will involve accepting that with my disability, I will not be able to compete with everyone, but can still perfect my strengths further. Rather than compete, I will set goals which are realistic. I will allow myself to take more time in doing tasks that I know other people or even myself used to take shorter times to achieve before sickness. Avoidance of over-generalization will be a major objective for me. In case there is something that I am unable to do anymore because of the disability, it will be unfair to convince myself that I am an overall failure. This is because the things I can do are still many. I will not tie every aspect of my self-worth to one event or attribute. Most of all, I will always appreciate myself in every way. This will include appreciating the disability. Although I at times feel that I is an annoying aspect of my life, I will need to always focus on the positive elements of my disability. One of the ways through which I will do this will be listing my strengths including the ways in which my disability and ways of coping can actually be an asset. 4) Effective Rehabilitation While the society tries to take care of the disabled, the end result is in many cases paternalism, which is not good for its targets. Although well-intended, good intentions end up being bad for policy (Brown, 2005). This is especially applicable in the disabled who end up being denied a fundamental right to choose what they want in their lives, in the pretext of protection (Falvo, 2005). Decision-making and independent living is compromised whenever systems try to offer protection and makes them feel less human. People having disability encounter pity in many instances. Chang & Johnson (2008) recommend that in an effective rehabilitation however, the health practitioner needs to facilitate a situation where the patient does not feel pitied as most disabled persons react negatively to it. Instead, what is required is a feeling of being understood and being assisted. Pity is translated to be a loss of being human and instead, the patient becomes an object, a disability and a problem. Feelings of helplessness may accompany disability. The person conducting the rehabilitation should ensure self-efficacy and independence for the patient. All measures should seek ensuring that he or she can do as many things as possible alone. Recommended changes should enable one to continue living as before and accept the new challenges that come with special needs (Mitchell, 2012). Most of all, there is need to emphasize the need for group support. They should not necessarily give up things that they loved doing before just because of the disease, but rather having to identify creative ways to accomplish the tasks. The rehabilitation should seek to encourage the person to continue working, travelling and maintaining close relationships with family and friends (Falvo, 2005). The patient will need to access all forms of advice and support from health practitioners, counselors and support groups that are available to deal with the condition. According to Brown (2005), learning more about the disease and how to use medications and therapies will be important as well as empowering care-givers to be aware about the changes that accompany the disease. This is because care-givers are likely to be confused when for instance, the patient feels depressed or angry while being assisted. Joining support groups should be encouraged (Marc, 2009). According to Rogers-Clark & Mccarthy (2005), the groups empower the individual as he or she feels more in control of the situation once they accept it, and still add on to the idea of independence. The groups offer a venue for sharing hardships, information and experiences therefore aiding the coping process. Chang & Johnson (2008) add that the health practitioner should also strive to offer counseling when needed as part of rehabilitation if possible, involve the spouse or care-giver in the rehabilitation process so as to assist them in coping with the challenge that arise while living with or caring for the person having RA. Bibliography Arthritis Australia, 2010, Women's Insights into Rheumatoid Arthritis, Arthritis Australia: Forest Lodge, N.S.W. A Step Forward, 2012, Mobility Problems, Accessed on 27 November 2012 from Brown, P, 2005, Enduring Life Challenges with a Disability, AuthorHouse Publishing: Bloomington Bullot, M and Woyzbun, L, 2009, A Picture of Rheumatoid Arthritis in Australia, Australian Institute of Health and Welfare: Canberra Chang, E and Johnson, A, 2008, Chronic Illness and Disability: Principles for Nursing Practice, Churchill Livingstone/Elsevier: Sydney Falvo, D, 2005, Medical and Psychosocial Aspects of Chronic Illness and Disability, Jones and Bartlett Publishers: Toronto Goggin, G and Newell, C, 2008, Disability in Australia: Exposing a Social Apartheid, UNSW Press: Sydney Hochberg, M, 2009, Rheumatoid Arthritis, Mosby/Elsevier: Philadelphia Lahita, R, 2006, Rheumatoid Arthritis: Everything you Need to Know, Avery: New York Marc, M, 2009, Rheumatoid Arthritis, Greenwood Publishing: Westport MediFocus Guide, 2012, Medifocus Guidebook on Rheumatoid Arthritis, MediFocus: Silver Spring Mitchell, W, 2012, Perspectives of Disabled Young People With Degenerative Conditions on Making Choices with Parents and Peers, Qualitative Social Work, Vol. 11: 621 – 643 Miyahara, M and Piek, J, 2006, Self-Esteem of Children and Adolescents with Physical Disabilities: Quantitative Evidence from Meta-Analysis, Journal of Developmental and Physical Disabilities, Vol. 18 (3): DOI: 10.1007/s10882-006-9014-8 Murphy, J and Pardeck, J, 2005, Disability Issues for Social Workers & Human Services Professionals in the Twenty-First Century, Haworth Press: Binghamton Newman, S, 2000, Understanding Rheumatoid Arthritis, Routledge: London Orto, A and Power, P, 2007, The Psychological & Social Impact of Illness and Disability, Springer Books: Berlin Rogers-Clark, C and Mccarthy, A, 2005, Living With Illness: Psychosocial Challenges for Nursing, Elsevier Australia: Sydney Tavares, R, 2007, Understanding Near-term Care of Very Early Rheumatoid arthritis in a National, Multi-Centre, Randomly Selected, Historical Inception Cohort of Newly Diagnosed Disease, University of Toronto: Toronto 1800wheelchair.com, 2012, Disability Etiquette: Beyond Wheelchairs, Accessed on 28 November 2012 from Read More