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Health, like beauty, lies in the eyes of the beholder and a single definition cannot capture its complexity. To this end, this essay aims to explore what health means to me and how it has been influenced by the experience of coping with my mother’s chronic illness. To me, health transcends the absence of disease to include the physical, psychological and social well-being of a person; it means the empowerment of the individual, and is the foundation of a fulfilling life; it also means caring about the people who care about you and whom you care about.
For a period of time, my mother has been complaining of pain in her joints, hips and more recently, her back. I always had a bad feeling that there was something sinister about her pain even though our general practitioner could not pinpoint anything serious after several differential diagnoses. However, as she has a family history of joint pains, I chose to be in a state of denial to her pain and attributed it to a ‘genetic’ condition she had that would go away with time.
However, that was not the case. My family observed that my mother was getting more emotionally irritable as time went by, and the nagging pain meant that she often found reasons not to take part in social activities that we organized. It got to the extent that she was constantly lying in bed and could not do her favourite activities, such as going to the market, without considering the amount of movements she would have to go through. The radiating pain also gave her sleepless nights and all these were taking a toll on her quality of life, among many other factors. It was debilitating. And as her daughter, I felt helpless. More so because I was studying medicine, and was plagued with the guilt of not being able to relieve the suffering of the person I loved the most.
The persistent pain worsened and my family decided to consult a specialist for a second opinion. A tumour was suspected. While the specialist made his diagnosis, I was very worried for my mother. I tried to prepare myself mentally to cope with the worst case scenarios, and this affected me emotionally and psychologically. I had no one to turn to as I did not want to worry others, and was at a loss of what to do. The results later revealed that my mother was diagnosed with a benign tumour (spine haemangioma). The specialist said that it was the lesser evil because it was not malignant, but that she would feel chronic pain throughout her life. What provided comfort to my family was the knowledge that there were treatments available to contain the tumour through methods such as radiotherapy and physiotherapy.
It pains me to know that the person I love would be put through suffering both from the disease and its treatment, and I wished I could be the one going through it instead. Upon reflection, I realize that I had not been dealing with my emotions effectively. The fear of finding out more and my escapist mentality had prompted me to create an internal barrier, such that I could not provide the care and support for my mother as I would have liked her to have felt.
Witnessing her chronic suffering has made me realise that health does not merely mean the absence of disease but it requires a more holistic view which encompasses the physical, psychological and social well-being of a person. I used to think of health as merely the absence of physical pain that arose from diseases, and to this extent, the physician’s task of relieving “suffering” was merely to alleviate the immediate physical pain and discomfort. However the literature I was exposed to on the nature of suffering in ill persons made me come to the realisation of my limited understanding of the term “suffering”. Through my research to understand the multi-faceted dimension of a person, and what suffering entails, I hope to be able to better understand what my mother is going through (albeit only the tip of the ice berg).
As the Catalan proverb goes, “from the bitterness of disease, man learns the sweetness of health”. I have too often taken for granted the gift of health that empowers a healthy individual to pursue things that matter in life – not only one’s aspirations or happiness, but down to the little things that affects our everyday living. For instance, I have seen how the chronic pain influenced my mother’s daily routine, and brought much discomfort when travelling or doing household chores. I have come to appreciate that health enables individuals to use their body as a vessel to fulfil their dreams and satisfy their needs without being tied down or be restricted by suffering. Health is thus the basis which enables people to pursue happiness and wealth, aptly worded by Elbert Hubbard, who said, “If you have health, you probably will be happy, and if you have health and happiness, you have all the wealth you need, even if it is not all you want”. It takes a loss of health to appreciate these words of wisdom.
I always thought of Health as merely a personal responsibility and a duty that an individual owed only to himself. However, this experience has prompted me to comprehend how the absence of health in individuals will affect the mental, social and physical health of their loved ones as well.
The academic literature available allows me to gain a deeper insight on what health means to me and allows me to make sense of my experience in a broader context through considering the perspectives of others.
Through examining the concept of human suffering brought about by the absence of good health, I learnt about the distinction between suffering and pain. A person who is in pain may not feel a proportional sense of suffering it is similarly possible for one to suffer even in the absence of pain. (Sanders 2009) In light of my mother’s chronic illness, I was prompted to examine the literature on human suffering which made me realised that my understanding of the word ‘suffering’ was limited at best. While I had always aspired to be a doctor to relieve the “pain and suffering” of people, I was of the view that human suffering was synonymous with physical pain brought upon an ill person due to diseases. However, literature has shown that suffering goes beyond the physical pain, and suffering defined merely as pain, disregards the “broader significance of the suffering” experienced by the ill. (Charmaz 2008)
Suffering includes physical pain, but it is not limited to it. It can be understood by examining the many aspects of a “holistic person” and when any of these aspects is threatened, suffering ensues. These aspects may include a person’s past, his or her role in society, relationships with others, day-to-day behaviour, and perception of the future. (Cassell 2004) The persistent pain my mother experienced affected her ability to do things that she had long associated herself with, such as playing tennis or climbing the stairs. In addition, my mother may have seen herself as being defined by several societal roles, such as being a wife, mother, caregiver to her parents, and a useful member of society. If the pain overwhelms her and restricts her from fulfilling these roles, she may see herself as being less than ‘whole’, and this may contribute to her perpetual suffering.
In considering the “holistic person” and the suffering which impacts upon the many aspects of a person other than physical afflictions, it confirmed my understanding that health should also mean the physical, psychological and social well-being of a person. By understanding the multiple aspects of a personhood, I now better appreciate why medical education is shifting its emphasis from the traditional reductionist biomedical model of medicine to the biopsychosocial model of health. The limitations of the biomedical model is that it treats diseases in terms of abnormal physical mechanisms (Engel 2002) and this is inadequate in relieving sufferings in patients, as we now understand it to transcend the physical mechanisms to also encompass the holistic well-being of a person. The implications of the failure of physicians to understand the nature of sufferings can “lead to medical interventions that (though technically adequate) not only fails to relieve suffering but becomes a source of suffering itself”. (Cassell 2004)
This reflective practice also gives me a timely opportunity to evaluate my emotions and thoughts against that of the wider community. Relevant academic studies have shown that chronic illnesses also has an impact of the lives of caregivers. (Jung-Won & Zebrack 2004) The emotions and thoughts that I felt were validated by researchers that show that receiving news of the chronic illness of a loved one can provoke emotions such as sadness, denial, grief and guilt. This may be due to guilty feelings of not giving adequate support to the ill person or it could be due to the emotional pain of feeling the loss of a loved one’s health. (McIntyre 2005) It is important to attend to the impact of chronic illness on caregivers as research has shown that the holistic health of a caregiver has the potential to influence the health outcomes of persons with chronic illness. (WE 1999) Suggested methods of coping with these emotions include talking to someone; being informed about the disease as it gives the caregiver a sense of control; and accepting that there is a limit to the relief that a caregiver can provide. (familydoctor.org 2010)
In light of the reflective writing and the academic literature reviewed, I hope that this will help me to come to terms and cope with the negative emotions I felt since receiving news of my mother’s tumour. I can approach this by confiding in someone I am comfortable with, confronting my escapist mentality by finding out more about my mother’s spinal haemangioma, and being aware of the treatments that she is going through. Her treatment is likely to expand over a long period of time, and she would need much emotional support and love from me. I have to be open to discussions about her illness and not evade any conversation on the topic as I did before.
This reflective practice has also helped me to be more understanding and sensitive to the suffering of patients and their families. As a medical student, I have been made aware that the suffering of patients extends beyond physical pain, and that it is necessary for physicians to focus on patient-centred medicine and attend to the biopsychosocial model of health. It is also important to be aware of the impact that caring for a chronic ill patient has on the caregiver. To this end, I can be proactive as a future practitioner in asking caregivers how they are coping, and provide them with support services that they can turn to. I have also realised the important roles that practitioners play in preparing caregivers for the transition of roles to care for the ill, and in helping them anticipate changes that may occur in their lives. This gives caregivers a better sense of control over the situation, and increases their confidence in caring for the patient.
A major takeaway from reflecting on what health means to me has been my understanding of the importance of medical practitioner to focus not only on curing diseases but also to relieve the sufferings of patients, understood holistically. To me, health transcends the absence of disease to include the physical, psychological and social well-being of a person; it means the empowerment of the individual, and is the foundation of a fulfilling life; it also means caring about the people who care about you and whom you care about.
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