‘My Sister Has Schizophrenia: What I Learnt About Love, Boundaries & Burnout While Caring For Her’

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It was the middle of the night when Mahira (name changed on request) woke up for a glass of water and saw her sister, Naina (name changed on request), sitting “perfectly still” on the sofa. “At first, I thought she was simply lost in thought, but then I noticed she wasn’t blinking. She didn’t turn her head, didn’t flinch when I called her name. I must’ve whispered it five, six, maybe 10 times — softly at first, then louder. But nothing. Just complete silence. Her eyes were wide open, but it felt like no one was inside. She looked like a statue — frozen, eerie, unreachable,” says Mahira.

They called the psychiatrist the next morning, but even after they came, Naina didn’t move for almost two days. She was eventually laid down in bed, but she still didn’t speak or respond. “At the time, it just felt terrifying and surreal,” she adds.

Mahira was 15, dealing with the emotional struggles that often surface during teenage years, when this happened — when her sister stopped acting like herself. Naina would talk to imaginary people, hear voices, ramble about unrelated things, and sometimes get aggressive. It wasn’t the first time this had happened, but it was the first time the family began to understand what was troubling her.

Schizophrenia had entered their lives.

‘She was in front of me — and yet, completely gone’

Schizophrenia is a severe mental disorder that affects how a person thinks, feels, and behaves. It may cause symptoms such as seeing or hearing things that aren’t real (hallucinations), holding false beliefs (delusions), confused thinking, and unusual or unpredictable behaviour.

“Years later, when I was doing my master’s in psychology, I came across the term ‘catatonia’ (a state where a person may appear awake but is unresponsive or immobile). That’s when it clicked. That night on the sofa was one of her first symptoms of schizophrenia — one of many I would come to recognise, but none quite as haunting as that moment when she was right in front of me, and yet, completely gone,” says Mahira.

As their mother became absorbed in Naina’s care, Mahira quietly took on more than her share. From school runs to helping younger siblings study, she stepped into responsibility without being asked — and continued to shoulder it for the next decade, as if her life depended on it. “I didn’t think of it as caregiving back then; it was just what needed to be done.”

Mahira adds, “By the time I was old enough to think about having a family of my own, I had already raised one.”

Even though Naina was the one with the diagnosis, schizophrenia consumed the entire family.

The rocky road to a diagnosis

In the beginning, Naina would claim to hear and see things and would isolate herself at times. But things took a turn for the worse after two stressful events in her personal life pushed her to the edge.

Dr Shaji S, Chief Psychiatrist at Bethesda Hospital, explains, “In schizophrenia, trauma is the trigger to the pre-existing vulnerability. The biological makeup of the mind and its genetic vulnerability is as important as the environmental factors, childhood experiences and parental styles that affect a child’s development.”

With local mental health institutions grossly understaffed and under-resourced, the family struggled to get help. “The facilities in our small town were like what you see in old films — neglected and grim,” Mahira recalls. Eventually, they found the right support at the National Institute of Mental Health and Neuro Sciences (NIMHANS), Bengaluru.

But the isolation lingered. “People made up stories about us. It was a very difficult time for us because we were figuring everything out on our own. We didn’t have many to turn to for help in the neighbourhood, except a few close friends,” Mahira recalls. “Even today, decades later, there are no real support groups or communities to turn to when you’re caring for someone with schizophrenia.”

Dr Shaji also highlights common misconceptions surrounding schizophrenia, particularly the belief that people with the condition are violent or possessed. He notes, “Less than five percent of people with schizophrenia are violent. There is more violence in the general population.” Yet stigma remains. Many families still approach religious figures, assuming it’s the work of evil spirits.

“Mental health disorders and caregiver struggles need to be normalised so that a wider and stronger support system can be put in place — for both those battling the disease and those caring for them,” Mahira insists. “Organisations like Amaha Health are already actively building mental health support ecosystems.”

‘Caregiving had seeped into every part of my life’

Mahira was so consumed by caring for Naina that her illness gradually became the central theme of her life. It shaped not only how she spent her days but also how she saw herself. The experience ran so deep that Mahira even chose to pursue psychology professionally, hoping to better understand what her family was going through.

“But after delving deeper into the field with a few degrees, I realised that my experiences with mental illness all my life made it hard for me to stay objective,” she says.

That realisation made her reflect on how caregiving had silently spread into every corner of her identity. “Caregiving had seeped into every part of my life,” Mahira reflects. “As a problem solver at heart, I would always leap into survival mode before even acknowledging how I felt in the moment.”

Over time, that constant state of alertness began to take its toll. “After being an adult too early in life, I once believed that I never wanted a family, fearing the load of responsibilities it comes with,” she says.

“Somewhere along the way, I learnt to be the adult in every room, to fix things before anyone asked. And when you’re always solving other people’s problems, you stop letting yourself feel your own. That’s what scared me most about the idea of having a family — what if I disappeared into it too? And more importantly, what if I was just too burnt out to do it justice?”

‘Choosing myself was tough, but important’

Life had other plans for her, and her husband turned out to be her biggest support system. With that new foundation in place, Mahira began to rediscover herself. When Naina relapsed years later, Mahira was struggling with her own mental health and had a new family to care for, too.

She shares, “My sister and I have been best friends, always doing things together and talking to each other about everything. But the dynamic has always been one where I’m the solution provider, the one who always compromises. It was very natural for me to be that person, and I never questioned it.”

Then, Mahira adds, their dynamic was challenged because she had her own responsibilities to take care of, and Naina’s condition still expected the same kind of support.

She still carries a hint of that frustration, of having been put in a position to show up for other people’s problems by discarding her own, for decades.

Bridging the gaps with care

Mahira’s story echoes what thousands face in India every day. While private care options exist, they are often unaffordable. Public hospitals, though well-intentioned, are overstretched. Families wait hours, sometimes days, to see a psychiatrist. And after a patient receives critical care and is sent home, there are barely any active communities or public forums for caregivers to turn to, leaving them to manage the emotional and logistical load alone.

Dr Shaji shares, “Schizophrenia most commonly begins in young adults between the ages of 15 and 25, with women often showing symptoms slightly later than men. Early detection is crucial, as delayed diagnosis can make the illness harder to manage over time. So, school counsellors should be well trained and alert to early warning signs.”

The legal system in India also needs to be more nuanced. Some laws designed to protect the patients could backfire and hinder treatment because of the very nature of mental illnesses. For instance, a person can be admitted to a psychiatric facility only with their consent. But when mental illness plays with a person’s mind and alters their perception and judgment, this becomes a double-edged sword. 

Yet change is happening. Helplines, awareness campaigns, and mental health organisations are helping more people access early intervention. The more we talk, the more we dismantle fear.

What to do if someone you love has schizophrenia

• If you’re noticing unusual behaviour or distress in a loved one, don’t ignore it. Reach out to a mental health professional as early as possible — it can make a world of difference.
• Speak to them with warmth and patience. Kindness goes further than you think.
• Try to avoid direct confrontation. Instead, gently encourage routine, consistency, and a calming environment.
• If someone refuses care but clearly needs support, consult their psychiatrist. A letter from them can be submitted to a government facility, which may help secure temporary guardianship and ensure treatment.
• Keep the dialogue going. Talk about mental health like you would any other health issue — with honesty, care, and no shame. You’re not alone, and help is out there.

The years of caregiving reshaped Mahira from the inside out — not just in how she managed crises or navigated silence, but in how she saw the world. Where others saw strangers, she began to see stories. Where others rushed past, she paused, listened, and understood. 

“Because of this experience in my life, I’m naturally more empathetic. You never know what someone is going through.” 

And maybe that’s the hidden gift. A quiet superpower. The ability to pause. To listen. To see not just illness, but the person behind it.

If you or someone you know is experiencing mental health challenges, here are some trusted helplines in India offering free, confidential support:

• Tele-MANAS: A Government of India initiative providing 24/7 mental health support in multiple languages. Call 14416.
• Vandrevala Foundation Helpline: Offers 24/7 support via call or WhatsApp. Call 9999 666 555 or visit vandrevalafoundation.com.
• iCall: A service by Tata Institute of Social Sciences offering free and confidential support. Call 9152987821 or visit icallhelpline.org.
• Mpower 1on1: Provides 24/7 mental health support. Call 1800-120-820050 or visit mpowerminds.com.
• AASRA: A Mumbai-based helpline offering support for those in distress. Call 91-22-27546669 or visit aasra.info.

Edited by Khushi Arora

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