Story from a survivor of tuberculosis

Mohammed Azam is a patient registered at Page Hall Medical Centre, a Deep End General Practice in one of the most deprived areas of Sheffield. He was diagnosed with pulmonary tuberculosis 2 years ago—this is his story. Mohammed was 44 years old when he was admitted to an intensive care unit with complications of pulmonary tuberculosis. His story illustrates the profound consequences tuberculosis can have on an individual and their family. Mohammed describes unexpected positives amidst the challenges of tuberculosis treatment, including how this disease might provide an opportunity to change a person's health trajectory. Early life wasn't always easy for Mohammed. At the age of 2 years his family moved from Pakistan to Sheffield, UK. He was the eldest of 12 siblings and life was busy. Mohammed interacted with health services during childhood. He graphically recalls an accident in the home with a pan of boiling water that resulted in a prolonged stay in the paediatric burns unit. He fondly reflects on his time spent in hospital: “Obviously I have scars, but I can just remember the best bits about it, being in hospital, playing with toys.” His subsequent diagnosis with hyperlipidaemia entailed regular trips to lipid clinics: “I used to be happy going, people would pay attention to you and ask questions you wouldn't get asked at home or school.” Religion was a significant part of Mohammed's childhood. “I'm from a Muslim family”, he explains. “My dad was an orthodox Muslim, never missed a prayer.” “I used to leave school every day then go to the Mosque for an hour and a half to learn the Quran.” All his peers within the community did the same. Mohammed snatched time to indulge his passion for football and cricket. “It was hard to fit school in—I left with hardly any O levels.” College provided an opportunity to break from his Orthodox upbringing. “It was the freedom, meeting people, knowing what other people and other cultures are doing…I started going out, drinking and smoking weed.” Mohammed moved on several occasions over the next two decades, spending time in both London and Manchester. Alcohol and substance use disorder crept in alongside a hectic working life, with disengagement from health service follow-up. During this time, he married, separated, and then reunited with his wife, who is also of Pakistani origin; together they had three children. Mohammed was regularly hospitalised with chronic pancreatitis, developing pancreatic insufficiency and diabetes. Mohammed finally returned to Sheffield to his closely knit immediate and extended family. He rejoined weekly gatherings of upwards of 30 relatives at his parents' house, or ‘HQ’ as it was colloquially known. The family were stunned when one of their members was diagnosed with tuberculosis, resulting in all other members being contacted by health officials to assess their risk of exposure. “It was a shocking phone call”, Mohammed remembers, wondering how he had been exposed. “After my...[family member] was diagnosed, our only contact was wearing masks so there was no contamination.” As contact tracing identified active and latent cases within the family, Mohammed recalls his relatives' disbelief. “Tuberculosis is a common thing in Pakistan…but people thought that as they hadn't been abroad it wouldn't affect them in the UK.” Disbelief soon turned to mistrust. “Different family members were given different numbers of tablets”, he says, “sometimes two, sometimes eight, sometimes 18; they didn't trust it...[they thought the nurses were] making it up.” The tuberculosis clinic was distanced from the hospital, causing speculation that “the nurses were coming out on their own behest.” The index case in the family was slow to respond to treatment, further fuelling scepticism. “The thought of tuberculosis didn't occur to me”, says Mohammed, recalling the insidious development of breathlessness and fatigue that he had attributed to his other health conditions. “I was at a stage where I wasn't too bothered.” Eventually, Mohammed collapsed at home and was diagnosed with tuberculosis. Mohammed spent time in intensive care before being moved to a ward to complete his quarantine. The words of a ward nurse have remained with him: “no matter what you do, don't leave until you have completed treatment…even if you have a stable family at home, you need to be mentally and physically right.” With hindsight, Mohammed reflects, “I feel I came out too early because of my underlying issues.” The physical manifestations of tuberculosis were very apparent to those around him: “It bulldozed me… I lost two and a half stone.” Mohammed felt overlooked; that people were ignoring him. “When people can see you are weak, they don't pay attention to you”, he explains. “Thoughts come into their head, for example, that you are taking heroin.” Such external perceptions undermined Mohammed's self-esteem. Financial imperatives did not disappear, either. “I had to go to work”, he explains. “You can't survive on £50 a week.” Work became increasingly difficult as treatment progressed. “I dropped down to 6 h and changed shifts [from night to day]”, but it wasn't enough. “[tuberculosis] led to sick notes, and the sick notes ran out after 28 weeks.” Mohammed is now in receipt of universal credit. This financial hardship increased Mohammed's psychological burden. “It stops you doing things and getting the bus to go places…you just can't afford it.” There were positive experiences during his months of treatment. Mohammed describes daily visits from tuberculosis nurses as wonderful. They would attend his home or workplace to give him his medication and they formed a very important part of his tuberculosis journey. “It was the biggest joy”, he says. “They knew what was happening in my life and about my other issues; they looked after my diabetes.” With their support, Mohammed began to feel more in control of his health. “They treated me like a human being and helped me take my illnesses on.” Mohammed's treatment was deemed a success. This success, however, proved to be a double-edged sword. The regular health-care support he had come to enjoy and depend on stopped. “I felt completely dropped”, he says. “Tuberculosis causes a grey patch on your chest x-ray, and it causes you to cough up grey [phlegm]. Once that disappears you are told you are better, but it doesn't finish there.” Unemployed, physically weakened, and increasingly disempowered, Mohammed's mental and physical health suffered in the time following his treatment completion. 9 months on, feeling very low, Mohammed made an urgent appointment with his general practitioner. Regular contact with health care then resumed in the form of telephone consultations. “This changed my outlook on life, it changed everything”, Mohammed says. “Talking alleviates issues mentally and physically…feeling someone cares about you. It encourages you to take care of your health.” Mohammed undoubtedly had complex health needs before developing tuberculosis. His story is not an unusual one in this sense. Tuberculosis disproportionately affects lower socio-economic groups, those with underlying health conditions, and people with substance use disorder. Mohammed's plight reflects the considerable morbidity experienced by tuberculosis survivors despite successful drug treatment. It was estimated that there were 155 million tuberculosis survivors alive globally in 2020. Tuberculosis survivors have been shown to have nearly three times greater mortality than the general population and matched controls, with higher rates of recurrent tuberculosis, chronic lung disease, and socioeconomic deprivation. In light of this research, a diagnosis of tuberculosis in a high-income setting should act as a red flag. The intensive support necessitated by its treatment could be a springboard to address patient's other comorbidities and issues. For Mohammed, tuberculosis survivorship is a daily struggle. These days it is one that he is winning, with a little help from his primary care team: “I want to carry on going up the ladders and not hitting any more snakes—I'm getting there now.” By sharing his story, he hopes to help others do the same. We would like to express our sincere thanks to Mohammed for sharing his experience with us. We are indebted to him for showing such generosity with both his time and his story. We declare no competing interests. Post-tuberculosis mortality and morbidity: valuing the hidden epidemicCase fatality rates for tuberculosis disease have fallen progressively over the past 20 years, and an estimated 54 million people have survived tuberculosis since 2000.1 More recently, there have been increasing efforts to understand the long-term implications of morbidity and mortality post tuberculosis, and a growing body of evidence describes how successful completion of treatment is unlikely to represent the end of ill health.2 Full-Text PDF