“You feel cut off from the world the moment you’re diagnosed,” says Deepti Chavan (36) who was diagnosed with multidrug-resistant tuberculosis (MDR-TB) at just 16.
MDR-TB or DR-TB (Drug-resistant tuberculosis) are a silent crisis in India, too often seen only as a biomedical problem, an infection caused by bacteria. But the lived reality of DR-TB is far more complex.
Beneath the diagnosis and its gruelling treatment course lie fear, isolation, stigma, trauma, and prolonged uncertainty.
Like Deepti, most TB survivors will tell you that the psychological impact of DR-TB often begins the moment a person receives the diagnosis.
Shock, yes, but also the fear of telling their families, the dread of stigma, and uncertainty about survival all come together and diminish the person. TB brings silence, confusion, and overwhelming emotional fatigue.
'My Mind Became a Prison I Couldn't Escape'
DR-TB carries a profound mental health burden that remains largely unrecognised in our health system, policies, and programmes, even though it deeply affects a person’s ability to complete treatment and achieve long-term recovery.
A reason for this is the purely biomedical framing of MDR-TB that erases the lived experiences of those undergoing treatment. This framing erases the mental anguish, emotional exhaustion, stigma, and absence of psychological support that shape daily life for people with MDR-TB.
Several studies estimate that between 40 and 70 percent of individuals living with TB experience symptoms of depression or anxiety.
The question many TB-affected persons silently ask is not only “Will I survive?” but “How long can I cope?”
During treatment, emotional distress grows deeper. The treatment for DR-TB is often long, unpredictable, and physically punishing. Daily regimens can involve several medications with severe side effects, nausea, vomiting, musculoskeletal pain, dizziness, hearing loss, insomnia, and persistent fatigue.
This emotional landscape is invisible in official reporting, yet it defines the daily reality of DR-TB.
“TB treatment was difficult, but the mental impact was even worse. A dreadful side effect of the injections was a temporary loss of speech and hearing. I couldn’t communicate with anyone other than my sister, and that isolation crushed my spirit," shares Debshree Lokhande, an architect in her mid-thirties, and a DR-TB survivor.
"It wasn’t just my body that was in pain. Losing my ability to hear made me feel completely cut off, and the loneliness became overwhelming.”Debshree Lokhande
For many, these physical challenges lead to a loss of mobility, appetite, sleep, and independence, pushing them to withdraw from daily life because they no longer know how to articulate the fear, shame, or exhaustion they feel.
“Treatment felt like a mental battlefield," says Himanshu (31), an MDR-TB survivor, adding,
"I was lying awake at night, terrified by my own thoughts. What if the medicine drives me insane and I harm my loved ones? What if I became a burden on my ageing parents? My mind had become a prison of fears I couldn’t escape."
Equally significant is the disruption to a person’s identity and routine. Students may drop out of school. Workers lose income or employment. Caregivers are separated from children. Young people miss formative milestones.
For individuals from marginalised caste or class backgrounds, the experience is further compounded by discrimination, housing insecurity, and economic precarity.
The uncertainty of cure, paired with relentless physical discomfort, creates conditions ripe for emotional collapse.
'The Stigma Leaves a Lasting Mark'
Stigma surrounding TB remains widespread in India, and DR-TB often attracts harsher judgement.
Women face blame, moral scrutiny, or desertion by spouses. Adolescents hide their diagnosis from peers to avoid taunts or exclusion. LGBTQIA+ individuals frequently report discriminatory treatment and a lack of sensitivity within healthcare settings.
Diptendu Bhattacharya, an educator from Kolkata, shares, “If fighting MDR-TB was hard, the stigma made it harder."
Isolation, imposed by fear of transmission, is common for TB affected persons. They spend long stretches in physical or emotional seclusion, which can lead to depression, anxiety, or suicidal thoughts.
"Can you imagine the doctor refusing to enter the room you are in? He also kept reminding me that I had only a 10 percent chance of survival,” he added.
Even after cure, survivors often carry the emotional scars and self-stigma, affecting their reintegration into work, relationships, and communities.
The stigma I experienced during the TB journey left a lasting mark on my mental health."Diptendu Bhattacharya, DR-TB Survivor
The Missing Link: Mental Health in India’s DR-TB Response
Despite the mental health burden, DR-TB policy and care systems remain overwhelmingly medicalised, and mental health screening is still not routine. Counselling services, where they exist, tend to focus narrowly on adherence to treatment rather than emotional well-being, without taking into consideration that mental health challenges significantly influence treatment adherence.
Depression and anxiety can erode motivation, worsen physical symptoms, and increase the likelihood of treatment interruption and higher mortality risk. In fact, Poor mental health has been linked with up to a twofold increase in treatment non-adherence among persons affected by TB.
The system expects emotional resilience from affected persons but provides little to enable it.
Most facilities lack staff trained in trauma-informed care, and dedicated budgets for psychosocial services are extremely limited.
Healthcare providers operate under immense pressure, heavy caseloads, inadequate staffing, frequent exposure to suffering, and limited psychological training. Provider burnout directly affects communication, trust-building, and the emotional safety of patients.
There is also no systematic support for caregivers, whose emotional load is also immense.
Promises of tele-mental health remain largely unrealised for marginalised communities, who may lack access to devices, privacy, or supportive environments.
What Mental Health–Integrated DR-TB Care Should Look Like
An effective DR-TB response must embed mental health into every stage of care.
This includes routine psychological assessments, counsellors trained specifically in TB-related trauma, survivor-led peer support networks, integration with accessible tele-mental health platforms, and structured support for families and caregivers.
Clear pathways must exist for identifying and managing suicide risks.
Financial and social protection are also essential components of mental health care. Many emotional crises stem from income loss, food insecurity, or unstable housing during treatment.
Meaningful change requires explicit inclusion of mental health within DR-TB guidelines, backed by adequate financing, trained staff, monitoring systems, and cross-sectoral collaboration.
Survivor voices must shape service design, and public communication must move away from stigma toward compassion and solidarity.
Healing the Person, Not Just the Disease
Ending DR-TB demands recognition that persons affected by TB are not fighting only bacteria but also profound mental battles. And so, mental health support is not a luxury but a necessity.
Effective DR-TB care in India means a system willing to treat people in their full humanity, not only in their pathology. Compassion must become structural, not incidental.
Because, as Ashna Ashesh, an MDR TB survivor and one of India’s leading health advocates, puts it, “Cure is not just when the medicine ends. It’s when you feel whole again.”
(Vashita Madan is a public health and social impact communications professional. Anasuya Das is a public health professional, focused on health communication, systems strengthening and community engagement. They are both associated with Survivors Against TB (SATB), a collective of survivors, advocates and experts working on TB and related comorbidities.)