Akriti was a young, ambitious student at one of India’s leading management schools. Over the years, she had struggled with minor episodes of depression.
After she was diagnosed with tuberculosis, or TB, her well-laid future fell apart. Her life changed to coping with two of India’s severest epidemics – TB and mental health concerns.
Despite having the access and ability to afford good treatment for both, she is struggling even today to cope with the residual mental health impact of surviving TB – ongoing depression.
In India and other high-burden countries, TB and mental health issues exist on an epic scale. TB and mental health remain unrecognised co-epidemics, often underdiagnosed and highly stigmatised. Those affected remain ashamed to speak about it, hide their diagnosis and remain fearful of seeking care.
Deep links between both
Studies also show a high prevalence of depression and other mental health concerns among those affected by TB, especially in those battling drug-resistant TB. The lived experiences of TB communities and survivor narratives in India show how deeply linked TB and mental health are.
What is more is that among many of those affected by TB, like Akriti, mental health issues may already exist and be exacerbated by contracting the disease.
While focused on diagnosis and treatment, India’s health establishment forgets that mental health concerns in TB-affected individuals carry certain risks. In some cases, individuals are unable to comply with long treatment regimens and give up. This can increase the possibility of making them drug resistant and also spread infection in the community.
At the individual level, when left untreated, this will not only lead to negative treatment outcomes, but also affect self-esteem, and the future quality of life.
Despite these challenges, TB services in India and elsewhere do not include mental health support. TB-affected individuals are often left on their own to deal with their struggles. If TB and its long treatment, with numerous side effects, were not bad enough, mental health challenges combined with stigma make things worse.
Health system falls short
Why has the system not been unable to respond to this growing crisis? Partly because the health system views its role as merely providing diagnosis and treatment.
Issues such as mental health or stigma are neither within its realm of delivery nor is it capable of addressing them. India’s health system lacks the understanding, capacity and resources for a suitable and systemic response to the co-epidemic of TB and mental health.
As the overburdened health system struggles to adopt new interventions, integrated TB and mental health care services are non-existent and deprioritised. Further, the system is unable to engage communities to understand their needs and develop solutions to address these twin epidemics.
As survivors, we have been working with individuals and communities for years to help them with mental health issues while undergoing treatment and even after. We understand both, the lived experience of addressing these challenges personally as well as through group work and working with communities.
Our learnings are that we need a strong, participatory strategy to combine TB and mental health care that can align with and strengthen the current systems. A critical aspect of this should be increased focus on skilling of health workers and ancillary mental health services, right to the grassroots.
Any intervention should try to address TB and mental health together in the current health system. It should also bring in community knowledge and learning to make care responsive to the needs of the end user. For the TB-affected, any intervention should work to help them understand their mental health challenges and build capacity for self-management through patient and family education and skilling.
Yet, none of this is possible unless the current establishment listens to TB survivors and brings them in as equal participants in developing such an approach. The process must be inclusive and include all affected individuals, especially those from HIV+ and LGBTQIA++ communities.
The approach has to be focussed on the individual and the community. To effectively address mental health and TB, we need to hear the voices and needs of those who are most vulnerable and affected. Additionally, nothing can be done without sufficient political will but also resources. India needs to invest in building mental health and TB capacity with a suitable model of integrated care. Mere lip service is unlikely to get the results we need.
If Covid-19 has taught us anything it is that all diseases have short and long-term mental health consequences. Ignoring the TB-mental health co-epidemic for too long may harm efforts to manage both diseases in the long run.
The interactions of the two health conditions are well established. Any delay in action, or political posturing, will cost valuable time and create an insurmountable challenge for the future. The time to act on TB and mental health is now.
Sandhya Krishnan is a wellness and mindfulness coach, and TB survivor. Keyuri Bhanushali is a copywriter and an MDR TB Survivor. Both are associated with Survivors Against TB, a collective of survivors, advocates and experts working on TB and related comorbidities.
World Tuberculosis Day will be observed later this week, on March 24.