‘I didn’t sit on my sofa for a year’: The hidden cost of living with OCD

For an entire year, while pursuing her Master’s in Bengaluru, Stuti did not sit on her apartment sofa. It was neither broken nor dirty. But after seeing her flatmates sitting cross-legged on it, she decided it was contaminated. “I didn’t even touch that sofa thinking it was gross and unclean,” she says. The 23-year-old sat on the floor instead and stopped friends and family from sitting on the sofa, fearing germs would travel from it to her bed, then to her. The thought of the resulting laundry, changing bedsheets and cleaning herself became unbearable.

She remembers the first time she felt this fear, though she had no name for it. At age three, after playing in a Mumbai park, she spent an hour scrubbing herself in the bathroom until her legs hurt and were marked with tiny red scratches. A few years later, on a family trip to Rajasthan, she touched a camel but could not find water to wash her hands. Desperate to relieve the discomfort, she licked her hand. It worked, briefly. Then came COVID-19. As the world grew vigilant about contamination, her father’s repeated instruction — “sanitise your hands” — brought the obsessive thoughts back. “Since then, there hasn’t been a single day when I have gotten to live my life normally,” she says. Stuti was finally diagnosed with obsessive-compulsive disorder (OCD) in 2023.

What is OCD?

OCD is a mental health condition in which unwanted, intrusive thoughts trigger intense anxiety, leading to repetitive behaviours or mental rituals that provide only temporary relief. It has two defining features: obsession and compulsion. Obsession comprises recurrent, intrusive thoughts, urges or images that cause distress and feel difficult to control. Compulsion is a behavioural disorder — washing, checking, counting or repeating phrases internally — performed to relieve that distress, usually temporarily.

OCD has no single cause; it is thought to arise from a combination of genetic vulnerability, differences in brain circuits and neurotransmitter systems, and environmental factors such as stress or traumatic experiences. Globally, OCD is estimated to affect one to three per cent of the population. India’s National Mental Health Survey (2015–16) estimated its prevalence among adults at 0.8 per cent.

Dr Uma Maheswari Ganesh, a clinical psychologist formerly with NIMHANS and who now leads a specialised OCD programme at Amaha Health, describes obsessions as “a song stuck in your head that won’t leave.” Unlike a pleasurable fixation, however, an obsession brings distress. “It knocks on your brain repeatedly without your consent. When someone says they are obsessed with a hobby, they may enjoy pursuing it. In clinical OCD, there is zero satisfaction — only distress,” she says. Compulsions are no better. Someone who fears their hands are dirty may wash them five, 10 or 20 times, stopping not when their hands are clean but when the anxiety briefly subsides. “The thought returns, and the cycle begins again,” she adds.

In India, clinicians also encounter intrusive blasphemous thoughts and sexual imagery. Dr Nand Kumar, Professor of Psychiatry and Head of the Centre for Advanced Research and Excellence in Neuromodulation at AIIMS, says such thoughts can result in profound guilt and shame, making them difficult to disclose.

The cost of living with the loop

Dr Kumar warns that untreated symptoms can become entrenched through conditioning, leaving people to accept their suffering as inevitable. “If you don’t admit you have a problem, open up or get treated, then you will end up accepting and perpetuating a lifelong mental condition,” he says.

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At 14, Sneha had a nightmare that someone had drugged her, the fear and trauma of which followed her into her waking moments. She hid it for years. “During peak Mumbai summers, I would wear long-sleeved hoodies and jackets because I was terrified that someone on the street was going to come up and inject me with drugs. The fear completely consumed my mind. I couldn’t stay present in school or daily life.” For Sneha, the greatest loss was concentration. “And that was worse than stigma.”

This not only upends life but leaves the sufferer gasping to just keep up with daily goals, says Agra-based OCD specialist Dr Shyam Gupta. “Imagine a person spending three hours a day washing, checking or running things over in their head. That’s a big slice of the day gone. Classes get skipped, work slows down, and friends stop calling because the person keeps cancelling,” he says. Govind, 26, a psychologist diagnosed with OCD in October, has long struggled with punctuality-related compulsions. To avoid being late, he arrives at least half an hour early, sacrificing sleep. “I have to wake up at 7 am for a class I have at 10.40 am,” he says.

An Amaha report published early this year, drawing on 13,825 people beginning care across India, found that fewer than one in eight could manage all their daily tasks. More than a quarter struggled to manage most tasks or any at all, while over half had lived with their concerns for more than a year before their first session. The findings illustrate the broader costs of delayed mental healthcare. The stakes can be severe. A Swedish study of more than 36,788 people with OCD found they were roughly ten times more likely to die by suicide than the general population. A 2024 study reviewing 814 patients at NIMHANS between 2008 and 2018 found that 19.8% had a documented lifetime suicide attempt.

Why diagnosis is delayed or missed

In India, distinguishing OCD from religious devotion or meticulous behaviour can be difficult. “What separates devotion from disorder is quite simple. It is how the person feels while doing it,” Gupta says. “Someone who prays or cleans out of faith usually looks settled afterwards. Someone with OCD looks tense, rushed or afraid.”

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Temple rituals involve washing, pouring water over the head or repeating prayers. Because such practices may be culturally familiar, repeated rituals can go unnoticed. In some communities, cleanliness is also closely linked to notions of purity. Gupta describes a 16-year-old, Arjun, who repeats a prayer up to 40 times each evening, restarting whenever his thoughts wander. His relatives see devotion; he experiences fear and exhaustion. “Arjun sits there tired and scared, with no idea how to tell them it doesn’t feel like devotion,” he says. Govind similarly keeps his diagnosis private. His compulsions involve numerical symmetry — stepping in a prescribed sequence, beginning with his left foot and ending with his right — alongside an intense need for reassurance about how others perceive him. “Because my symptoms don’t fit the stereotype of OCD, I choose not to disclose my diagnosis to my parents or broader professional networks.”

Gupta recalls Rohan, 26, who feared he might harm his younger sister after an uncle died in a road accident. He began avoiding the kitchen whenever she was there. “The thoughts horrified him, and that is typical,” he says.

Families can inadvertently reinforce symptoms, too. Dr Ganesh compares the tendency to dismiss OCD as a personality quirk to viewing the character Monica from the TV hit series Friends as simply a “clean freak”. In joint families, several people can become involved, helping sustain the cycle even as the person’s work, relationships and social life deteriorate.

Who gets left out

Access to treatment involves more than whether services exist. A retrospective audit of 92 OCD patients at Mumbai’s Sion Hospital found that 90% opted for medication, despite cognitive behavioural therapy (CBT) being offered free of charge. Only two attended the sessions. Others said they could not spare the time for regular appointments. Free therapy is not truly free if attending it costs a day’s wages.

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Dr Ganesh notes that Indian research accounts for only about 18% of reported OCD cases from lower socio-economic groups, compared with 50%–60% from middle socio-economic groups. This does not mean OCD is less common among poorer communities. “Limited awareness, competing survival needs and the normalisation of repetitive behaviour can prevent people from reaching care,” she says.

Managing OCD

Dr Nand Kumar explains that OCD manifests when certain neural circuits become hyperactive, and the brain’s ability to filter information breaks down. “The first-line medication is SSRIs (Selective Serotonin Reuptake Inhibitors), which increase serotonin levels between nerve cells and slow down compulsive behaviour. But medication alone often isn’t enough. Even if we prescribe SSRI medication and anxiety is not handled, the patient will not respond,” he says. Hence, medicines to handle anxiety are often prescribed as well.

The gold-standard psychological treatment is Exposure and Response Prevention (ERP), often combined with medication. In ERP, a patient gradually encounters a trigger — such as touching a desk perceived as dirty — while resisting the usual compulsion. Over time, they learn that anxiety can subside without performing the ritual. Psychoeducation is also important. Dr Ganesh estimates that teaching patients and families to distinguish thoughts from actions accounts for 20%–25% of treatment success. For people whose compulsions are primarily mental, she uses Acceptance and Commitment Therapy (ACT), helping them observe intrusive thoughts “like passing clouds” without arguing with or engaging in them.

For Stuti, sessions revealed a history of childhood abuse which made ERP therapy difficult. For a year, she showered after every visit to the toilet. Eventually, the frequency became unsustainable, and she began holding her urine, developing what she describes as the worst urinary tract infection of her life. With her psychiatrist’s help, she began sitting with the discomfort of feeling unclean, gradually extending the delay from two minutes to five, 15 and then 30. She still takes long showers, but they consume less of her day.

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Sneha finds running meditative, forcing her attention towards her breath. Working in sales keeps her engaged with the outside world. Govind journals at night, describing the practice as “emptying the trash”. Medication has also helped him. Within ten days, he noticed that he no longer unconsciously counted steps while scrolling through social media reels.

For patients who do not respond adequately to medication — estimated by Dr Nand Kumar at 40%–60% — Deep Transcranial Magnetic Stimulation (Deep TMS) may be an option. Using magnetic pulses to modulate brain activity, the treatment typically involves sessions five days a week for four to eight weeks, alongside therapy. It can be expensive, though AIIMS provides it free of charge. Dr Kumar estimates that approximately half of patients who do not respond to medication benefit from Deep TMS.

OCD may require long-term management, and major life stressors can trigger a return of symptoms. Dr Ganesh stresses the importance of long-term relapse-prevention plans and psychiatric follow-ups. But, as Dr Nand Kumar says, earlier recognition remains critical. “The first step may be a simple question: not what are you doing, but how does it feel while you are doing it? Does washing stop when the hands are clean, or does anxiety demand another round? Does prayer leave someone peaceful, or frightened?,” he suggests.

Stuti still takes long showers. When she returns from work feeling unclean, she still eats on the floor outside her door. But she has learned to press the pause button. “Sit with it. What’s the worst that can happen?” she asks herself.