The Patient’s Narrative of a Tuberculosis Patient

This is a narrative or a journey of a tuberculosis patient (Abdi Adan – not his real name) who is a homeless person in London. The purpose of the narrative is to help us understand psychological, cultural, and sociological perspectives from the patient’s point of view. In the past few years, there are considerable interests in the patient narratives, particularly in medicine, social sciences, and humanities (Bury, 2001).

Bury also observes that narratives of “patients and lay people have become the centre of attention for health related settings” (Bury, 2001). He also highlights that transformation in morbidity patterns, improvements in the availability of data about illness and disease, and the public debates concerning medication effectiveness have contributed to the demand for patient’s narratives.

Abdi Adan is a tuberculosis (TB) patient in the UK. He is also a homeless person in London. This makes the story unique to patient narratives because Abdi Adan is a vulnerable patient (Larkin, 2009). Abdi Adan is likely to die at the age of 42 years as Talha Burki reports (Burki, 2010). He may die from “a drug overdose, liver failure, an act of violence, suicide, cancer, or tuberculosis” (Burki, 2010) because of homeless.

Today, London is the leading place in Western Europe with many cases of TB among homeless individuals. Homeless people like, Abdi Adan are prone to TB because their conditions provide a good environment for the TB pathogen to multiply.

Outside the city of London in the abandoned building, I met Abdi Adan. He was a 30-year-old man with a frail look. He looked weak and hungry. From the look on his face, Abdi Adan must have been starving. He led me to a corner where he sleeps at night. The place is a small corner that cannot accommodate a closet, but he must coil himself there to avoid the night chills. As we settled down on the mat, I offered Abdi Adan a loaf of bread and a bottle of juice, which he took. He comments that, “there is no space and place to sit, I hope you are comfortable”. Thanks Abdi Adan, I am fine, my hostel is small too, I commented.

Abdi Adan was diagnosed with TB a year ago during a TB treatment for homeless patients in London. He informed me that one of his friends noticed that he had a constant cough, lost weight, and looked weak. However, he claimed that the cough was dry and would eventually disappear and that he had lost weight because of a poor diet. Luckily, Abdi Adan met health care workers on a TB treatment for homeless individuals. This is how Abdi Adan learned about his TB condition. Abdi Adan realised that he needed to start a long journey of TB treatment immediately.

From what I could observe, Abdi Adan lived in a complete poverty. This made me link TB and poverty. I noticed that other people also shared the abandoned building. It was overcrowded with no proper sanitation. These factors, together with the poor nutrition, could have contributed to the poor state of Abdi Adan’s health.

TB is an infectious “bacterial disease that commonly affects lungs” (Burki, 2010). TB is an airborne disease that comes from infected individuals. Its main symptoms include “coughing, chest pain, fever, weakness, weight loss, and night sweats” (Burki, 2010). The increase in the number of TB cases in London has sparked the public debate about the effectiveness of TB drugs and treatment.

The treatment may last for eight months, but this must be a continuous process without any interruption. Abdi Adan is a homeless person who experiences other challenges. For instance, he kept on moving from one place to another. This had reduced accessibility to medical centres and other places he could receive medicine. Abdi Adan informed me that at some point he stopped receiving treatment and medication. As a result, his condition developed to multi-drug-resistant TB.

This condition complicated his treatment because Abdi Adan needed expensive second-line drugs and chemotherapy. Abdi Adan informed me that his condition started deteriorating when he moved to the UK more than two years ago as an illegal immigrant from Somalia. Abdi Adan had not arranged how to stay in London. As a result, he ended up in the street like other illegal immigrants. Abdi Adan blamed poverty, various needs, poor diets, and vulnerability as the major contributors to his condition.

Abdi Adan gave me an opportunity to understand his sociological perspectives and experiences as a homeless TB patient. He often referred to his place as ‘Base’. People at the Base were his closest associates, but they showed mixed feelings. Abdi Adan experienced social stigma with his TB condition. He explained to me that most people had alienated and forced him to a small corner in order to curb the spread of the disease. As he kept on moving from one Base to another, he lost contact with health care workers who visited TB patients. His conditions became worse.

I realised that people at the Base had important influences and roles in the lives of others. Given Abdi Adan’s health condition and nature of the Base, majorities typically had the same interest and values i.e., to survive for another day. Abdi Adan informed me that it was difficult to get assistance from a member of the community within the Base because they all faced many challenges.

As I listened to Abdi Adan when he narrated his experiences within the community, I noted that it was necessary for health care workers to understand the plight of homeless TB patients. Health care policymakers needed to create a plan that was “respectful and collaborative” (Stein-Parbury, 2008) in order to tackle high rates of TB cases among homeless people in London. This could lead to effective delivery of health care services and enhance general health of homeless people as a community.

As Abdi Adan narrated his story, I noted the need to find out perceptions of TB within homeless individuals and to comprehend the roots of their perceptions and other factors that contributed to their state as homeless people. I also realised that there was an urgent need to develop specific approaches of fighting social stigma among homeless people with TB conditions.

Abdi Adan informed me that he had not established any beneficial relationship with the health care providers. In fact, he told me that most of the time he would miss appointments with mobile health care workers who made follow up visits. I realised that the delivery of TB health care services to homeless individuals like Abdi Adan was low (Story et al., 2007). On this note, I noted the need for an urgent participatory action research in order to determine the best ways of getting homeless TB people to participate in TB awareness campaigns within their communities.

Abdi Adan has no family in the UK. As a result, he cannot receive influential help that other patients get from family relations and other related social networks. With regard to TB outcomes, family influences can show itself through supports like care, adherence to medication, and improve other patient behaviours.

These support services have positive outcomes on TB patients. However, this is not the case of Abdi Adan. On the contrary, people who are close to Abdi Adan are not his family, but associates within the same building. People have misconceptions about Abdi Adan, and they have increased the level of stigma. They have isolated him, and now Abdi Adan experiences social ostracism. TB usually affects social networks of patients. Abdi Adan informed that his close friends and associates often considered his condition as a source of stress for fear of contamination with the drug resistant strain.

I concluded that Abdi Adan missed positive support from family members and friends. On this regard, I realised that successful TB control systems must address the social stigma and the role of family and friends. Still, a proper method was necessary to cater for homeless individuals like Abdi Adan. Therefore, health care providers should not ignore positive influences of family and friends in combating TB. However, the challenge is how to identify the best methods of working with homeless TB patients in order to maximise effects of treatment given their social situations (Weiss & Lonnquist, 2006).

From the narrative of Abdi Adan, it appears that social stigma with regard to TB has a common face. I learned that social stigma had negative effects on treatment and care services to Abdi Adan. Abdi Adan tried not to reveal his condition to people at the Base for fear of social isolation.

Abdi Adan also informed me that at some points he felt a strong sense of personal rejection due to stigma. This made Abdi Adan to keep his condition to himself. At the same time, Abdi Adan did not adhere to treatment due to stigma. Therefore, health care providers should identify sources of stigma and impacts of social stigma in order to provide effective interventions.

Studies have shown that social stigma among TB patients has remained an issue throughout the world (Shetty et al., 2004). There are anecdotal reports of jailed TB patients who have failed to complete medication or adhere to treatment. However, such reports have not investigated circumstances that lead to failure or lack of adherence to treatment among TB patients. Based on the narrative of Abdi Adan, I realised that it was important to classify TB stigma from a range of viewpoints in order to understand sources of stigma, potential impacts, and develop effective strategies that could address and lessen stigma among TB patients.

Given Abdi Adan’s account of his experiences, I realised that it was imperative to propose methods to allow public health community workers to provide data and presentation, which could erase the notion that TB was a deadly disease without a cure. In addition, campaigns should focus on reducing stigmatisation and enhancing the message that TB has a cure.

It was not simple to get Abdi Adan to discuss his TB condition with me. I sensed fear and confusion, and I attributed it to psychological suffering he must be experiencing due to outcomes of the treatment given because he had developed the drug resistant strain. At first, Abdi Adan told me that, “I was shocked when I learned that I had developed the drug resistant TB strain, and I could not bear the thought of undergoing a long-term treatment, which also involved chemotherapy”.

In short, Abdi Adan summarised his thoughts and experiences as that which involved panic, fear, shame, annoyance, rejection, shock, and remorse. However, Abdi Adan also told me that such feeling often subsided with time. He got the best help from a psychosocial TB care provider during his treatment (Rana & Upton, 2009).

I felt at odd asking Abdi Adan how he felt about his condition being that the disease was infectious (Morrison & Bennett, 2006). The response was swift and simple – shame. He felt ashamed of having to be in isolation because he had a contagious condition and pretended that everything was fine. The precaution was necessary to stop the further spread of the bacteria. Abdi Adan informed me that being alone in a small corner was a difficult experience in his life.

He told me that he felt like a leper, dirty, and an outcast. However, he noted that sharing such experiences with the care providers and other patients helped him a great deal. Such moments were rare because they only happened whenever he had an appointment with the nurse. Back in his corner, Abdi Adan was alone. Such feelings of shame brought miseries and distress to Abdi Adan.

The patient had other concerns regarding relationships and self-esteem. He expressed unknown feelings of fear, possibly from the treatment and side effects of the drugs. Abdi Adan also informed me that the condition had changed his entire lifestyle. Most importantly, he experienced financial hardship because he could not and had to live on supplies from the hospital. In fact, his associates found it difficult to support him. Abdi Adan had to depend on others, but such people were in the Base. As a patient, Abdi Adan felt distressed because he had been independent in most of his lifetime.

The situation was not comfortable for him because any form support was hardly available. In short, Abdi Adan had no one to provide the needed support for him. On the same note, the patient also informed me that some of his friends also had feelings of fear, sadness, and guilt. Abdi Adan informed me that he had to find new ways of adjusting to the situation and maintaining his independence. Amidst such challenges, Abdi Adan had the goal of maintaining his self-esteem as he strived to adjust to the chronic condition of TB.

Abdi Adan experienced severe stress that gradually changed to emotional distress and anxiety. The TB condition disrupted his routines. As a result, he underwent series of emotional challenges. In fact, when I met Abdi Adan, he looked weak, fatigued, emaciated, and short of breath. Abdi Adan informed me that some of the drugs he used also affected his emotional conditions. Based on that comment, I noted that sources of psychological challenges among TB patients could vary.

Therefore, a coordinated effort between the patient and family members, care providers, physicians, friends, and psychosocial clinician was necessary. Abdi Adan also narrated that he experienced temporary cases of emotional turmoil. However, such conditions did not develop to severe distress or disability.

From Abdi Adan’s experience, I realised that it was best for TB patients to inform their nurses and physicians of emotional challenges so that they could develop an effective intervention. Patients can receive different medications based on certain conditions of their anxiety. Overall, such patients need constant counselling.

I wanted to understand Abdi Adan’s cultural account of his TB condition from his Somali roots. This was necessary as a way of comprehending the role of a culture and its impacts on TB treatment (Shetty, Shemko & Abbas, 2004). Abdi Adan informed me that their language referred to TB as ‘tibisho’ or ‘qaaxo’, but this depended on the origin. He pointed out that Somali community associated the word, qaaxo with loneliness, weakness, and death. Back at home, they relied on herbalists to manage TB conditions. He also informed me that they used some herbs to massage TB patients.

Abdi Adan informed me that the treatment for TB in their home country was so different from the Western methods. Back at home, traditional treatment was the main source of hope for any TB patient. However, he noted that they had to receive blessings from Allah for any form of medicine. He also informed me that TB patients in town could combine prayers, herbs, and Western medicine for TB treatment. The reason for seeking traditional remedy remained clear i.e., it was a way of reducing social stigma associated with TB because the treatment was mainly a private affair.

Abdi Adan claimed that God was responsible for his condition. He informed me that the disease could be due to weakness in faith or a test. Thus, he had to read the Koran several times for inspiration and peace. He could have performed it with family members, but they were not in the UK. The disease was a source of social stigma to the entire household.

The diet was also important for both adults and children with cough cases. Some diets consisted of eggs, herbs, raw eggs, camel milk, honey, and ghee. Such a diet remained beyond reach for Abdi Adan, who was now a TB patient and homeless too. Family prepared a special diet for their TB patients in order to facilitate recovery.

TB patients also had to abstain from chewing khat or miraa because it could irritate the respiratory system. However, Abdi Adan also informed me that others believed that TB had no cure because it was a punishment from Allah. Consequently, such people left their fate to God.

It is necessary to determine that TB cases will differ from patient to patient based on their individual cultural, social, and psychological experiences (Taylor, 2003). The journey of Abdi Adan may make the TB experience to sound like a fiction. However, health care providers must recognise such realities based on the patient’s accounts because the situation varies greatly.

They should also examine realities like poverty, background, fear, stress, anxiety, financial condition, shame, and guilt, which many patients experience. Therefore, a proper response to TB among homeless people must account for their narratives based social, psychological, and cultural aspects because they provide viable experiences of the patient.

Reference List

Burki, T 2010, ‘Tackling tuberculosis in London’s homeless population’, The Lancet, vol. 376, no. 9758, pp. 2055 – 2056.

Bury, M 2001, ‘Illness narratives: fact or fiction?’, Sociology of Health & Illness, vol. 23, no. 32, pp. 263-285.

Larkin, M 2009, Vulnerable Groups in Health and Social Care, Sage, London.

Morrison, V & Bennett, P 2006, An Introduction to Health Psychology, Pearson Education Limited, Essex.

Rana, D & Upton, D 2009, Psychology for Nurses, Pearson Education Limited, Essex.

Shetty, N, Shemko, M, & Abbas, A 2004, ‘Knowledge, attitudes and practices regarding tuberculosis among immigrants of Somalian ethnic origin in London: A cross-sectional study’, Communicable Disease and Public Health, vol. 7, no. 1, pp. 77-82.

Stein-Parbury, J 2008, Patient and Person: Interpersonal Skills in Nursing, Churchill Livingstone, United Kingdom.

Story, A, Murad, S, Roberts, W, Verheyen, M, & Hayward, C. 2007. ‘Tuberculosis in London: the importance of homelessness, problem drug use and prison’, Thorax, vol. 62, no. 8, pp. 667-71.

Taylor, J 2003, ‘Confronting ‘Culture’ in Medicine’s ‘Culture’ of No Culture’, Academic Medicine, vol. 78, pp. 555-559.

Weiss, G & Lonnquist, L 2006, The Sociology of Health, Healing and Illness, Pearson Education Limited, Essex.