On a foggy winter morning in Delhi, 33-year-old Sumit* steps out of his home in the capital, ready for another day at a reputed national bank office where he now works in customer support. The air is crisp, the sun is slow to rise, and the city is still shaking off the cold.
Before he leaves, he pauses at his study table. A small, colour-coded medicine box sits there, divided by doses and timings. He opens it carefully, takes his morning medicines for the day, and then locks the lid again. It is a routine he follows every day.
It is also a routine he would have to follow for the rest of his life.
These medicines help him manage schizophrenia, a complex mental health condition he has lived with since 2009 that impacts how a person thinks, feels and interprets reality. The illness often brings hallucinations, delusions, disorganised thoughts and difficulty in social functioning.
Sumit finally “recovered” in 2023 after years of treatment, missteps, stigma, confusion and extraordinary will. Today, he has a full-time job, has written six novels and is a regular speaker at several mental health programmes, and calls himself a “fighter.”
But this life did not arrive by chance. It was rebuilt slowly and painstakingly, piece by piece- as people living with mental illnesses such as schizophrenia continue to battle not just their symptoms, delayed diagnoses and access to quality healthcare, but also the societal demons of misinformation, stigma and deep-rooted prejudice that marginalise them and create additional obstacles in their path to recovery.
Myths and misconceptions about mental illnesses and schizophrenia in particular, fuelled by pop culture portrayals, make people believe that such a diagnosis means that you can never be a productive part of society anymore. The stigma can be so deep-rooted that even Sumit, who is a living testament to the fact that one can effectively manage the condition with treatment and can lead successful lives, requested that we not use his real name or his images.
“My father is concerned that people will know about me. It’s still a taboo,” he explained.
By the age of eight, Sumit was already immersed in the worlds of Hardy Boys, Nancy Drew, and Shakespeare, and by sixteen, authors like Dan Brown and Khaled Hosseini had captured his imagination.
“I was naive and innocent, and always got bullied,” Sumit said. He was studious, spending double the hours on academics than his peers, while also engaging in sports like baseball, which brought him solace.
Despite the bullying, everything seemed ordinary until 2009, his 11th-grade year. That year, being rejected by a girl he fancied, he said, triggered something within him, and he started experiencing a series of “garbled thoughts, compulsive lying, and an unsettling awareness that something was not normal.”
He confided in his father, seeking professional help, but as a teenager, Sumit struggled to articulate his experiences, and many psychiatrists dismissed his symptoms as “typical adolescent stress.” After consulting multiple psychiatrists, he was put on medications to help relieve some of his symptoms of “stress” and “anxiety.”
However, there was little respite and college brought further challenges for the young adult. He failed 18 subjects but somehow completed his engineering on time. He faced ongoing difficulties with concentration and comprehension, and social interactions became exhausting.
By now, the symptoms had widened and included muffled thoughts, hallucinations, and delusions. “There was a flower vase in my house that seemed to speak to me, telling me to break it. Auditory hallucinations were constant, and visual hallucinations convinced me that a girl lived in my house, hiding whenever I approached,” he recalled.
Erratic behaviour became a coping mechanism at this time. He was abrupt, sometimes aggressive, and struggled with personal hygiene. By 2017, he had landed a job at a leading tech firm in India, but adjusting to the workplace was a challenge. At work, colleagues often misread his reactions, mistaking a serious response for a joke gone wrong. “If someone joked about breaking an egg on my head, I actually did it,” he said with a rueful smile, illustrating the real-world implications of his condition.
“I could not read facial expressions, and even simple conversations became exhausting. My thoughts were muffled, comprehension impaired,” he said, highlighting how his social and emotional understanding were also disrupted.
While these challenges themselves made everyday interactions, both professional and personal, difficult, with no clear answer as to why he was experiencing them, they added to his confusion and frustrations.
It was around this time, in 2017, that Sumit finally received a formal diagnosis of schizophrenia at the Institute of Human Behaviour and Allied Sciences (IHBAS) in Delhi—one of India’s leading mental health institutions. Schizophrenia affects 23 million people worldwide. That is roughly one in 345 people. Among adults, the rate is even higher, one in 233. In India, an estimated 3.5 million people live with schizophrenia. It is not as common as other mental disorders, yet the impact is severe. For many, the illness interrupts education, careers, relationships and daily life.
Before this, Sumit had visited several top psychiatrists, tried numerous medications, and endured misdiagnoses ranging from bipolar disorder to anxiety and stress. “Many doctors just pushed pills without understanding my actual condition,” he recounted.
Not just Sumit, many people struggle to get a definitive diagnosis. According to Dr Nimesh Desai, Senior Consultant Psychiatrist and Psychotherapist and former Director of IHBAS, diagnosing schizophrenia during adolescence is especially complex because its early symptoms often overlap with normal teenage changes.
“The common age of onset for schizophrenia is either during adolescence between 15 and 22 years, or later in middle age, around 45 to 50 years. In adolescents, diagnosis has to be done very carefully because many symptoms can easily be mistaken for temporary adjustment problems,” he explained.
Dr Desai added that schizophrenia in young people does not always present in a textbook manner. “Very often, early schizophrenia begins with anxiety or obsessive symptoms. The illness itself also takes time to fully form and manifest,” he said.
Substance use further complicates diagnosis today. “Many adolescents are brought with psychological symptoms alongside cannabis use. Clinicians then have to differentiate whether these symptoms are drug- or truly schizophrenia,” he noted.
Even after a diagnosis, struggles continue. Globally, access to care remains deeply unequal, with WHO underscoring that the majority of people with schizophrenia do not receive adequate treatment. Only 29 per cent of individuals with psychosis have access to specialist mental health services, and resources are often skewed towards institutional care rather than community-based support. Alongside this, people with schizophrenia continue to face human rights violations, social exclusion, and discrimination that affect their access to healthcare, education, employment, and housing.
For Sumit, treatment, once he was finally diagnosed, was long and physically exhausting. Early medications were heavy and came with severe side effects, including excessive salivation, cognitive dulling, and difficulty interpreting facial expressions. “It took three to four years to stabilise on an effective regimen. There was a lot of trial and error because of gaps in research and mental health infrastructure in India. At one point, injections alone cost Rs 13,000 to 14,000 each, which shows the financial burden families face, especially those from lower socio-economic backgrounds,” he said, while adding that he now takes just three pills daily, a significant reduction from the twenty medications he once required.
This is despite India’s progress in mental healthcare through several key initiatives. The National Mental Health Programme (1982) integrated mental health into general healthcare, while the NIMHANS Act (2012) strengthened research and academic capacity. Legal protections were expanded with the Rights of Persons with Disabilities Act (2016), and the Mental Healthcare Act (2017) guaranteed the right to mental healthcare and decriminalized suicide.
The National Health Policy (2017) also focused on accessibility and early intervention. Digital and training initiatives like iGOT-Diksha (2020) and Tele MANAS (2022) provide professional training and 24/7 tele-counselling, supporting millions of calls. The National Suicide Prevention Strategy (2022) targets high-risk groups with early intervention and awareness. Together, these efforts show India’s commitment to improving mental health care and support.
In line with these developments, Dr Desai emphasised that, “Pharmacological treatment for schizophrenia in India is actually far more affordable compared to many developed countries. Yes, there are cases of commercial misuse, but professionally competent and affordable treatment is easily available in India.”
Sumit underlines the strength he got from his family’s support during this difficult time. “My father always called me a fighter, and that kept me going,” he said. “My parents ensured I never missed a dose, and my brother was always there for me,” he added. His father maintained a diary from 2009 to 2023, documenting Sumit’s thoughts and symptoms to help guide treatment discussions with psychiatrists.
Unlike his first job, where he kept his condition a secret and faced misunderstanding from colleagues, he is now also open about his mental health at his current workplace. As a result, everyone around him, both colleagues and clients, treats him with understanding and cooperation, creating a workplace where he can “work peacefully.”
However, outside of this circle, Sumit is still concerned about discussing his condition with the larger public, because coming out about mental illness remains difficult. The social stigma and myths around mental illness in India, he noted, “is comparable to early misconceptions about HIV/AIDS. Even today, disclosure to doctors sometimes triggers unnecessary increases in treatment costs or judgment.”
Dr Desai also attributed late diagnosis largely to stigma and low awareness. “People often fail to recognise that what appears to be a behavioural oddity is actually a medical illness. Some unusual behaviours should never be overlooked. It is always better to consult early,” he advised.
Dr Desai also pointed out how access to treatment is often delayed due to deep-seated social beliefs. “Even among educated families, symptoms are often explained away as supernatural influences or personal weakness. These myths need to be addressed urgently,” Dr Desai explained.
The consequences of delayed care can be devastating. The risk of suicide among people with schizophrenia is alarmingly high. Studies show that one in ten die by suicide, while 40 to 79 per cent experience suicidal thoughts. Hallucinations, delusions, social isolation, depression, and impaired judgment all contribute to this risk.
Sumit, however, said that he was fortunate to have consistent family support, which played a crucial role in helping him survive this period.
On the effectiveness of medication, Dr Desai remained confident. “Medicines for schizophrenia are very effective. Over my 45 years of practice, I can say that their benefits far outweigh the risks. Advances in pharmacology and brain science have significantly improved outcomes,” he said.
He also underlines that schizophrenia no longer needs to be a lifelong disabling condition. “When diagnosed correctly and treated on time, it can be managed with minimal disruption to life. There is a lot of hope for patients and their families today,” he added.
For Sumit too, advocacy, openness, and education are just as important as medicines. Even in his personal life, he plans to disclose his condition to a potential life partner early on, underscoring the ongoing negotiation between truth, fear, and social acceptance.
“People should come out, and the stigma will go away. Advocate, speak about the mental illness you have. Sharing would help not just you, but also others struggling silently. Mental illness is treatable, support works, and hope is real,” he said.
*Name has been changed on request
This story is done in collaboration with First Check, which is the health journalism vertical of DataLEADS.
