Despite advances in diagnosis and treatment, India’s tuberculosis epidemic continues to disproportionately affect millions, leading to physical suffering as well as profound mental health challenges. As a pulmonologist, I have witnessed firsthand the impact of TB on individuals and families for decades – and it is devastating.
The experience of TB as a disease is far more than a battle against a bacterium: it is a journey fraught with emotional and psychological turmoil. Many of my patients are from marginalised communities who have limited access to healthcare, irregular incomes and face social stigma. Alongside these difficulties, they struggle with the side effects of TB treatment. This creates a dual burden of TB and mental health, making the already challenging treatment process even more difficult.
Stigma against TB is deeply entrenched and those affected face discrimination in their communities, workplaces and within their families, sometimes even after being cured. This increases social isolation that can lead to shame, guilt and hopelessness. These factors make it difficult to seek and complete treatment, compounding the physical and psychological toll the disease takes on a person.
The treatment for TB is lengthy and demanding, typically lasting six months or more. It requires strict adherence to the treatment regime and can have significant side effects such as physical discomfort like nausea, fatigue and joint pain. Managing these symptoms, alongside the fear of relapse, is overwhelming.
In my practice, I have seen patients struggle with anxiety and depression during treatment. They worry about the effectiveness of the medication and are afraid of infecting loved ones even as they struggle with loneliness and despair.
Certain groups are more vulnerable. People living with acquired immunodeficiency syndrome, or AIDS, caused by the human immunodeficiency virus, face compounded stigma due to their dual diagnosis. Then there are socially and economically vulnerable groups and caste minorities. These groups face discrimination in the healthcare system and within their communities that can result in isolation and abuse, which can in turn lead to depression, anxiety and even suicidal ideation.
In India’s growing urban centres, migrant workers living in overcrowded and unsanitary conditions are at an increased risk of TB. Many do not have stable incomes, good nutrition and adequate healthcare and support. They often face language barriers and discrimination, that leaves them isolated with little social support. When they get active TB, their mental health is often overlooked, resulting in untreated anxiety and depression.
Women with TB face unique challenges that can lead to added stigma and discrimination. This can result in loss of employment, strained family relationships and even domestic violence and abandonment. Similarly, queer individuals also experience discrimination and stigmatisation, both within the healthcare system and in society. The mental health impact of these factors can lead to reluctance in seeking care, delayed diagnosis and not adhering to the treatment.
Children with TB are another vulnerable group that suffers from psychological effects such as fear, confusion and anxiety, especially when having to endure hospitalisation and long-term treatment. Similarly, the elderly are particularly vulnerable to TB due to weakened immune systems and comorbidities. They can experience loneliness and isolation, which can be exacerbated by the physical limitations of growing old and the stigma associated with TB.
Addressing the mental health needs of TB patients requires policy changes and practical initiatives. For starters, integrating mental health services with TB care should be a priority, with policies that mandate mental health screening, counselling and the involvement of professionals during treatment. This will improve the quality of care as well as adherence to treatment and its outcome.
On the ground, there is a need for programmes that provide holistic care, including partnerships with mental health organisations and training for healthcare workers. With the right skills, health workers can be transformative in their support, but this responsibility should not rest solely on them. What is needed are programmes that include counsellors and psychiatrists, which requires policy changes as well as increased funding.
Healthcare providers can also take immediate steps by personalising care plans and actively working to reduce stigma in practice. At the hospital where I practice, I strive to provide holistic care that addresses the physical and mental health needs of patients. We collaborate with psychologists, social workers and community health workers to ensure patients receive the support they need throughout their treatment journey. This is not always possible with limited funding. Hence, the government needs to combine policy with actionable, much-needed programmes to ensure that TB patients receive the comprehensive care they need to overcome the physical and mental challenges of the disease. In the end, the goal should not just be to cure a person but to also give them a better quality of life.
My experience as a doctor underlines the need for integrated care models that address the physical and psychological needs of TB patients. The fight against TB is not just a clinical battle but also a psychological one: it is a fight to keep sanity and dignity intact as a bacteria plays havoc with the bodies of patients.
Bornali Datta is a leading pulmonologist and Covid-19 specialist at Medanta Medicity and a writer based in Delhi. She is also a Covid survivor.
