Chronic illness may cause ‘biographical disruption’. Explain what you understand by this term and drawing on the experiences of your patient. Discuss the different ways in which chronic illness impacts on an individual.
Medical encyclopaedia defined disruption as the ‘morphologic defect resulting from the extrinsic breakdown of, or interference with, a developmental process.’ In other words, it is the interruption or impediment of a progress. Therefore, biographical disruption is described as how the chronic illness can lead to the loss of self-identity or social interaction in an individual.
In this report, I will discuss how chronic illness impacts patients in terms of their behaviour, daily lifestyle, relationships with partners or family members and acceptance of their illness as well as how they cope with it. This report will be illustrated based on my patient’s experience, Ali, a 58-year-old retired office worker from Gelang Patah.
Onset and Getting a Diagnosis
Chronic illnesses are non-communicable diseases which develop gradually over time. They generally cannot be solved instinctively and are barely to be cured ultimately. In most cases, chronic illnesses are more likely to be insidious where the patients have mild or no symptoms. However, the transition between being asymptomatic to having a chronic illness diagnosis can be challenging for the patient.
My patient, Ali, was diagnosed with hypertension in year 2010. Hypertension refers to an elevated systolic blood pressure of 140mmHg or greater and diastolic blood pressure of 90mmHg or greater. It is also a risk factor of myocardial infarction, chronic kidney disease, and stroke. It has been determined as the third leading cause of death worldwide by the World Health Organization and given a reputation as a ‘silent killer’.
Before Ali was diagnosed with hypertension, he experienced tiredness and nausea every day. He was shocked because has always led a healthy lifestyle and did sports regularly. Thus, he denied the diagnosis that the GP gave him. At first, he did not follow the routine of taking the medicine, but insisted in taking some herbs to relieve the symptoms. However, it showed no improvement in his condition. Then, he started to take his medication as indicated. Few days later, his symptoms were relieved and he accepted the truth that he is suffering from high blood pressure (BP).
Before finally accepting his illness, Ali went through a stage of denial which was described by Freud as a way to protect the ego from anxiety, a defence mechanism, by not admitting that he would never return to his previous way of life and require medication for the rest of his life.
Coping with chronic illness
Managing a chronic illness is far beyond medicating as it also involves how well a patient adapts to the effects of the symptoms in their day-to-day living. It is important how a patient manages his or her health, emotion and daily life as they can determine the efficacy of the treatment given to the patient. Besides, rather than formal healthcare and coping-with-life-changes being core domains, they should eliminate health-compromising behaviours by self-regulatory efforts, and adopt health-enhancing behaviours. Ali said,
“I had to adapt by changing my lifestyle including my diet, controlling my temper and reducing heavy workloads. Sometimes I feel that I am weaker than ever, no longer as fit as what I used to think I was. ”
The large submerged portion of hidden mass of the iceberg corresponds to the undiagnosed cases which are presymptomatic and unapparent. About one-third of population with high BP are not aware that they have it. In other words, the extrinsic problems of what the patients present are the small constitution of the tip of the ice while the undiagnosed hypertensive patients represent the intrinsic complications deep below the surface.
Figure 1 Illustration of Iceberg theory
In addition, recent studies indicated that 58% of diagnosed hypertensive patients are receiving appropriate treatment and can communicate effectively with health care providers as well as actively self-manage their illness. This shows the difference between the two groups of individual and the success rates to reduce mortality and premature death of hypertension.
Chronic illness sufferers have to learn to manage their symptoms to get better. Parson’s sick role model states the obligations, ‘a sick person (patient) must get well as soon as possible’ and ‘must seek professional help’.[14, 15] Hypertension is a preventable disease, thus it is the patients’ duty to accept the medication regime. Therefore, for Ali to get well, he must actively learn to manage his illness at the same time be guided by doctors (professional role).
Relationships with family members and Daily Living
Chronic illness brings a vast impact to the patient and the family. Since the onset of Ali’s illness, there have been some marked changes in his relationship with his wife of 33 years, Mira, who has taken up the responsibility to monitor his health. He finds it hard to accept that he is a patient who requires more care and attention from his wife of whom he used to take care. Despite this, Ali mentioned that the strength of his marriage had improved as he described them being closer than ever although he frequently feels frustrated due to his dependency on Mira. He now appreciates her more than before.
Furthermore, Ali’s children who are highly educated always show concern for their father by checking up on him and advising him on his daily diet and exercise regime.
Stigma and Isolation
Stigmatisation commonly occurs with chronic illness. Stigma is described as depreciating a character which then causes the individual to be discounted. It happens mainly when the patient is diagnosed with certain diseases and they are treated as abnormal or handicaps. This scenario can lead to unhappy consequences. It is then called as “deviant conditions” when they are not accepted by the society. However, Ali did not feel stigmatised at all as hypertension is one of the commonest diseases among the population. In Malaysia, the prevalence of hypertension was 42.6% in the year 2006 for the residents aged 30 years and above. Furthermore, some of his friends are having the same illness; they generously shared their experiences, ways to handle the disease and methods to control BP.
Changes in lifestyle and Uncertainty
Life is full of uncertainties. Chronic illness contributes to unpredictable events due to the nature of the illness that can restrict some patients from leading their normal lifestyle. In addition, asymptomatic illnesses could result in distress in patients and their carers when they do not know when the disease will worsen. For Ali, he is uncertain when the BP might be raised as he knows that elevated systolic pressure above 200mmHg increases the risk of mortality from stroke whereas Mira needs to get ready whenever she realises that Ali is unwell. Ali admits to feeling stressed most of the time as he is afraid that a sudden rise in BP may trouble his family, particularly his wife. Mira spends most of her time with Ali, worrying that something bad will happen to him if she leaves him alone.
Uncertainty can persist throughout the course of chronic illnesses, not only at diagnosis or onset. In Ali’s case, this led to the feeling of fear and uncertainty to both Ali and his wife about what could happen to him. Stroke is the main concern for Ali as this thunderclap attack will have a huge impact on his independence and quality of life, forcing him to become a burden for his family members.
In conclusion, chronic illness is not merely a medical condition but it can cause several forms of biographical disruptions that can significantly affect a patient’s life. ‘Biographical disruption’ is one of the major aspects of living with a chronic illness because it can affect the patient’s role in the family and his or her relationship with the family members. In a wider context, it also impacts their daily life and relationship with their friends, colleagues and the community. It could potentially alter the focus of their life against their wishes and retrain them from succeeding theirs previous plans of life such as employment and hobby. For instance, Ali had thought of delaying his retirement, however, he was restricted from accomplishing jobs that he was being assigned to after being diagnosed with a chronic illness. The ability in performing tasks is diminished. Sometimes they are stigmatised as a ‘disabled’ by society.
Each and every chronic illness sufferer will undergo different disruptions and changes in their life. Nonetheless, care, attention and support from the family members and society are essential to reduce the impact of the illness. Additionally, improvement on palliative care is necessary to improve the patients’ quality of life. It is important to note that the healthcare system also plays a big role in understanding the social behaviour that surrounds their patients for an efficient and effective health provision to be given.
List of Figures
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12.Ciulla, M.M., G.L. Perrucci, and F. Magrini. Adaptation and Evolution in a Gravitational Environment — A Theoretical Framework for the Limited Re-Generative Post- Natal Time Window of the Heart in Higher Vertebrates. May 22, 2013
14.61% of Malaysians UNHEALTHY. 2012 Tuesday, 12 June 2012]; Available from: http://www.malaysia-chronicle.com/index.php?option=com_k2&view=item&id=34769:61-of-malaysians-unhealthy&Itemid=2#axzz2qjcz5j7l.
16.Burke-Smith, A. and D.F. McGowan. Introduction to Medical Sociology Available from: http://www.icsmsu.com/exec/wp-content/uploads/2011/12/ABS-Sociology.pdf.
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