I met him in June 2009, and very early on it became apparent to me that something wasn’t right,” says Simar, 34, a Delhi-based communications professional, about her then boyfriend. He had come over one evening to her rented apartment in Khirki Extension and had what Simar would later discover was a manic episode.
Two weeks into their relationship, he was diagnosed with bipolar disorder, a mental illness that causes extreme mood swings—emotional highs (mania or hypomania) and lows (depression). During the initial years he sought help and was in and out of hospitals. Eventually, he stabilized—for the most part—but later felt the medication hampered his creativity as an artist and stopped taking it.
Now married to him for over seven years, Simar, who wants to use only her first name, describes her husband as empathetic, compassionate and smart. Though the episodes can sometimes get intense, Simar says: “I know that isn’t real. I know it’s like an alternate reality created within him.” She adds, “But in this condition, no matter how hard I try to control the situation, to not provoke him further...even if I stay completely silent, this person’s mind is spiralling to a dark place. And even if things get really ugly, I remind myself that this is my best friend and the person I love more than anything in the world.”
According to a study in the medical journal Lancet, 7.6 million people were suffering from bipolar disorder in India in 2017.
In 2016, Maharashtra reported 3,052 farm suicides. One of them was 30-year-old Manisha Uke’s husband. A mother of three girls, Uke had noticed the steady deterioration in her husband’s mental health. Due to a physical disability, he was unable to work in the fields and was struggling to repay a debt of around ₹80,000; the burden of supporting their family financially fell on Uke’s shoulders.
“Unke swabhav mein aisa farak aaya tha ki tu akele kaise sambhalegi, rote the, chup chup rehte the. Bachche chotey thay, pareshan karte thay unko, dukh ho raha tha, meri patni kaam par ja rahi hai main khush rakhna chahta tha (His behaviour had changed. He was worried about how I would manage on my own. Sometimes he would cry or go silent. The children were young, they would annoy him...he was sad that he could not take care of his wife the way he wanted to),” she says.
Out of desperation, he took to bootlegging. Uke, unhappy with this decision, left for her maternal home, though her husband would visit often. “Woh aise haath sehla kay bolte thay, ki main marne wala hoon. Mere se nahi hota ab ghar ka aur main tujhe dukhi nahi dekh sakta (He would tell me I am going to die. I can’t carry on and I can’t see you so unhappy).”
One morning, he took his life in the home they had shared for nine years.
Uke’s in-laws never really accepted her after the loss of their son—they called her a “chhinaal” (whore), accused her of killing her husband and would often ask her to take her three daughters (who were of “no use”) and leave. When she went to apply for a ration card, the “dealer”, called her to his home at 8pm—“I knew what he expected, I never went,” she says.
“Unke marne ke baad duniya badal gayi. Samaan lanay jaate hain toh bolte hain dhandha karne ko gayi. Aise bohot taane sunne ko padte hai. Dhyaan diya toh khud hi mar jayenge, toh zyada dhyan nahi dete. (After he died, my world changed. When I would go to bring stuff for the house, they would say I had gone out for sex work. I had to hear many such taunts. If I pay attention to them all, I won’t be able to take it, so I ignore it as much as I can).”
Simar, who went in for therapy online after suffering severe burnout, has endured with the support of her husband’s family and a close-knit friends’ circle. For the last six months, she and her husband have ensured they stay off alcohol, which is often a trigger for manic episodes—this has led to a significant improvement in the mental health of both partners.
Uke, on the other hand, has had to move away from her in-laws’ home. Ineligible for loans, she used up her savings to build a thatched home for the four of them in the village where her mother lives. Trying to make ends meet, Uke has been doing domestic work since the lockdown restrictions were relaxed.
Simar and Uke’s worlds and lived experiences are hardly comparable—they come from different sociological contexts and their situations, though similar, will always be segregated by their varying caste and class privileges.
Yet, in a country where mental illness itself is still largely brushed under the carpet, the role of caregivers like Simar and Uke—many of them women—who have partners with mental illness, or have also had to deal with loss, remains invisible. They don’t even figure in the wholly inadequate data available on mental illness in India.
“In heterosexual relationships, women are expected to play the role of the caregiver, while men often do not face similar expectations to respond to a woman’s emotional needs. I have seen marriages where women with mental illnesses are often stigmatized and treated poorly by their husbands, whereas if the husband is the one who has mental illness, it is assumed that it is the wife’s duty to take care of him without complaint,” says clinical psychologist Jagruti Wandrekar.
Studies suggest that women are prioritizing partners despite their own crises. The Lancet study, for instance, observed that “higher prevalence of depressive and anxiety disorders in females than in males has also been reported previously, which could be related to gender discrimination, violence, sexual abuse, antenatal and postnatal stress, and adverse socio-cultural norms”. Yet most studies also conclude that women account for the majority of caregiver roles for those with mental illness in the family.
Still, women tend to feel isolated in their experience as caregiver-spouses. They are silently enduring expectations, navigating internalized ideas of the “perfect reaction” and behavioural cues, swallowing blame and rushing to threads on Quora for answers. In this context, then, what does it mean to be a woman in India with a partner who has mental illness?
SHOULDERING THE BURDEN
In January 2018, Tanmoy Goswami became a father. “That period, I think, was excruciating for my wife,” he says. Goswami had been diagnosed with clinical depression at a young age and had an episode in 2017, going into cycles of self-destructive behaviour and withdrawing completely from social and familial interactions. “This is when I saw very closely what my illness meant to my wife and how devastating it could have been,” he says. This eventually drove him to seek regular therapy and psychiatric help. Now, he urges “hundreds” to pursue the same course.
From his personal experience, as well as through his work in mental health advocacy, Goswami sees caregiving as a gendered function. “It was not the same for my father as it was for my mother, it is not the same for me as it is for my wife. There are ten thousand ways in which families and society will find a way to assault the woman with expectations,” he says.
When Vijay Nallawala, who runs a mental health support platform called Bipolar India, was diagnosed with bipolar disorder in 2003, a psychiatrist recommended he “get married to solve all your problems”. He did. Nallawala admits today that his marriage came under severe strain in the initial years; his wife even had to quit her job.
Introduced by M.B Treudley as early as 1946, the term ‘caregiver’s burden’ refers to “the negative impact of caregiving on a caregiver’s mental health and quality of life”. The objective aspect of this burden refers to the more tangible effects of caregiving—the disruption of routine and social life, the financial costs—whereas the subjective burden includes aspects such as the caregiver’s feelings of loss, guilt, shame and anger. According to one study, nearly 80% of caregivers experience this burden in some form.
“In the mental health movement, somewhere we have not been able to give caregivers the space they deserve. It ends up becoming about survivors but caregivers are at a heightened risk of becoming depressed themselves because of prolonged exposure,” says Goswami.
Before it morphed into a sordid shouting match about murder and drug cartels, the death of actor Sushant Singh Rajput had briefly initiated the conversation on mental health and suicide. In what was seen as an ethically questionable revelation, psychiatrist Susan Walker told journalist Barkha Dutt that Singh had been diagnosed with bipolar disorder.
His live-in girlfriend, actor Rhea Chakraborty, has since come in for a barrage of accusations and a torrent of hate. She has been called “vishkanya”, Bhojpuri videos titled Rhea m**arc**d hai are up on YouTube and those trending #JusticeForSSR recommend a range of punishments, from slapping to execution.
In an interview with TV news anchor Rajdeep Sardesai on 27 August, Chakraborty said that on 8 June, six days before Rajput died by suicide, she too had a session with Walker since she had been dealing with anxiety attacks.
After lawyer Sheebani Sethi, who is married to a film-maker diagnosed with bipolar disorder, watched this interview, she felt compelled to speak out. “I just felt extremely sad and angry. I told my husband, I need to speak out about my own experiences. Even if she’s guilty, that’s no excuse for this media lynching going on.”
For Sethi, who suffers from Crohn’s disease—a chronic illness that affects the digestive tract—her husband’s mental illness was no different. Fortunately, she knew about the disorder, recognized the possible signs and encouraged her husband to consult a psychiatrist early on. But “we still have to adjust ourselves when he goes through a high or low. I have to adjust my behaviour. If he says or does things that I would previously take very personally (‘I don’t love you and I want to leave you and all of that’), I know that it’s not true.” With both partners in therapy, it’s a little easier—but Sethi and her husband remain vigilant.
The Chakraborty interview also resonated, in some ways, with 33-year-old KB. Over the last three years, she has been dealing with the implications of being the primary caregiver to her former partner, who was diagnosed with schizophrenia when they were both in their 20s.
It became visible when he started becoming increasingly paranoid. Over time, he started believing everyone he was close to had been replaced by shapeshifters. “We had a giant white board in our room, on which we would write our weekly to-do lists. One side was his and one was mine. And we used to generally leave little notes in the morning,” says KB. If she left for work before he woke up, she would leave him a note. It was an endearing little medium of communication for the longest time.
“One day I came home and the entire thing was covered in weird symbols. He had carved symbols into all the window frames and door frames and drawn one on himself with a sketch pen. And he insisted he would only talk to me if I also had that symbol on me. It was like an inverted star. To check whether I was a demon or not,” says KB.
Later, when her partner moved in, KB sought professional help for him. She took him to a psychiatrist and made sure he took his medication—when he refused, she would be the one to mix the pills into his morning milk, a decision taken jointly with his family and the doctor. “This was the decision, though I felt like I was betraying him, because there was no other way, and Rhea talking about getting CBD oil for Sushant was something I noticed particularly—at that point everyone is giving you advice on what to do, but eventually you are the one who has to live through that, second only to the person with the illness,” she says.
Initially, when KB tried to tell others about his problem, she was met with denial, disbelief and isolation. Her partner’s mother blamed her for his illness. At one point, she says, they insinuated that she was a “gold-digger”.
“We weren’t married. For all practical purposes, we were cohabiting for that long. Technically and legally, I should have had the same position in decision-making and the same degree of respect as a spouse. But this is India, that doesn’t happen,” says KB. “At some point I remember feeling really helpless because I was trying to help run his business, coordinating and communicating everything because he had fired a lot of his team. Running my own business, and dealing with this and his family.”
Soon it became clear that he would not get better, and he was institutionalized.
COPING IN DIFFERENT CONTEXTS
A study published by SAGE Publications in 2019, titled An Asymmetric Burden: Experiences Of Men And Women As Caregivers Of People With Psycho-social Disabilities (PPSDs) In Rural North India, makes the point baldly: “In India, one of the most gender-unequal countries in the world (according to the United Nations Development Programme, 2014; World Economic Forum, 2009), a female caregiver of PPSDs has multiple pathways to disadvantage that cumulatively and differentially impact her well-being.”
Women, it adds, work more hours in caregiving, perform heavier manual caregiving tasks, have fewer opportunities for respite, and have fewer social interactions outside the house in a context where it is more socially acceptable for men to devote time to leisure activities and where there are additional social hierarchies at play, including caste, creed, class and disability.
“If we look at it intersectionally, considering caste, class, religion and other marginalized communities—the more vulnerable or marginalized she is, the fewer resources and support she has, the more trauma she carries as a result of inter-generational discrimination along with the other trauma women ordinarily face,” says Shamal Jaykar, an associate with The Alternative Story, a Bengaluru-based organization which works to ensure mental health services are “affordable, intersectional feminist, trauma-informed, kink-aware, queer-affirmative and caste-aware”.
Access, support and vocabulary are a huge problem on the peripheries of privilege. Women are often financially dependent on the male spouse, and, without care, can suffer prolonged trauma, frequently for their entire lives. Lack of access also means mental illness remains undiagnosed and unaddressed, often manifesting as abuse and violence. Women are usually at the receiving end.
Aarti Bais of Swarajya Mitra, a grass-roots organization that works with widowed and unmarried women in Maharashtra, and has also interacted with Uke, says widows and caregivers get limited support in Vidarbha. In April, Aradhana Wal reported in TheCaravan that “the Prerna Prakalp programme (a Union government public health initiative) was started to catch farmers while they thought about suicide and help them before they took the final drastic step. The state also built its programme on the back of one of India’s pioneering experiments in community mental-health-care, which took place in Vidarbha’s Amravati and Wardha districts.” Since this is focused primarily on farmers, spouses tend to miss out on the benefits, finding it difficult to afford the medication or travel long distances to the block hospital.
In conflict zones, women have to deal not just with their own trauma but also that of male partners. The Kashmir Mental Health Survey 2015, conducted by the organization Doctors Without Borders, found nearly one in five adults in the region was living with symptoms of post traumatic stress disorder, and about 248,000 met the diagnostic criteria for the condition.
In situations where their partners are, or have been, in combat roles, too, women sometimes silently endure violent episodes, with lack of awareness and a fear of stigma keeping help at bay. “I know someone who was in the army for long and the wife put up with a lot of nonsense because she didn’t have her own support system. With this man, the violence was so much that he would pick up his two-year-old child and just throw him against a wall. She could not report it because of the stigma,” says Niti Sapru, president, Bombay Psychiatric Society.
Professionals see a more egalitarian acceptance of caregiving responsibility among LGBTQ+ couples who may not be restricted by gender norms. But they face other burdens: of identity, legitimacy—or lack thereof—and the absence of support structures. Queer-affirmative therapist Aanchal Narang says: “I think just existing would be a burden. Then navigating coming out, accepting yourself, accepting your partner, how would you take care of your partner, provide for your partner? Would you be taken as that person’s emergency contact or not?”
THE ‘PERFECT’ REACTION
“I was more sexually expressive earlier but as the dependency grows and he gets more depressed... it’s difficult to love someone when it’s hard to see them as their own person outside of that illness,” says IM, 25. She met her partner at a time when both were dealing with different kinds of childhood trauma and had been diagnosed with clinical depression.
“My father killed himself and everyone just forgot how he had abused my mother; she was often blamed for his death as well,” says IM. She does not get alongwith her mother but resented her father for the way he abused her—the suicide did not take that away. “Like, holy shit, if I was married to my father, I would have killed him. I have seen him rape my mother in front of me when I was 11 or 12.”
While much of the limited literature on caregivers focuses on guilt and shame, resentment as a reaction is often ignored. Across experiences, the one common thread is that there is no “perfect” way to deal with suicide bereavement. Nor is there a “perfect” way to feel towards a partner with mental illness.
Uke, for instance, experienced near lifelong behavioural changes. She responded to her husband’s death by becoming belligerent and assertive—she learnt to shout back at those who tried to take advantage of her, she would cuss and scream if someone tried to raise their voice or taunt her on the streets. “With my husband gone, if the world will be cruel to me I will be cruel right back if that’s how I can feed my children,” she says.
Guilt, however, invariably looms heavy for a caregiver—it encompasses nearly every action, including taking care of herself or thoughts of leaving. “The few times I would give up completely and have fights with him, I used to genuinely start internalizing some of that. Blaming myself. Maybe I am failing as a caregiver, maybe I am failing as a partner. Maybe I am the reason he’s getting so sick,” says KB.
Eventually, she realized it was impossible to do this alone. It was too severe and too big an illness to be managed by one person. In 2014, she also started seeing a therapist. “Leaving was the hardest thing I could imagine. I sank into a depression which took me over a year to get out of. I was debilitated and completely broken,” she says.
Yet most of this, experts say, can be tackled through community support structures and communication.
Madurai-based Nandini Murali’s husband died by suicide three years ago; she was the one who found his body. The 57-year-old describes her late husband as an excellent doctor, one who always maintained professional excellence despite his mental illness. A year after he died, she picked up the pieces and decided to reclaim the narrative. Murali started SPEAK, a mental health initiative that provides a space for conversations on suicide prevention and bereavement. “When I speak, because it comes from a lived experience, even some of the most hardened cynics sit up and listen. I am here because I have been through this and don’t want anyone to go through this. So this has emerged as a sacred cause. Enlarging the spaces for conversations.” She has recently completed a book, Left Behind: Dealing with Suicide Loss, which will be published in the coming months.
Like KB, Simar and Sethi, Murali too felt local resources for community support and care were limited. Foreign authors or research papers may provide structure but don’t have quite the same impact as shared, lived experiences. SPEAK, like other initiatives, is a beginning—but there’s a long way to go.
The Mental Health Act,though amended in 2017, still does not recognize caregivers as part of the ecosystem. As a paper titled Family Matters!—The Caregivers’ Perspective Of Mental Healthcare Act 2017, published in the Indian Journal Of Psychiatry in 2019, points out, “...in a country like India where the family as a unit has more significance than personal autonomy, the new act emphasizes the patient’s rights and, in doing so, may make the doctors more defensive and fearful in making clinical decisions, thus shifting the burden to the shoulders of the family members. There is a need for suitable amendments to include the family’s concerns as well...”
Organizations that facilitate support for caregivers, however, remain few and far between. Nallawala’s Bipolar India group on Telegram, for instance, has over 500 members, both patients and caregivers. Writer and anti-caste activist Divya Kandukuri’s The Blue Dawn network offers support “for Bahujan people seeking mental health services, and care” across the board to marginalized communities.
All these women are living out their unique realities. KB has remained in touch with her partner (“Oddly, we are like siblings now, it’s not a relationship I ever imagined, but it’s great,” she says), even as she undergoes therapy to deal with the trauma. Simar finds that quitting drinking has worked well for them; “I have lived so many realities with this person, and I realize that not only do I love him, I actually like him, and his illness is a part of him like so much else is part of others”. Uke struggles to combat the stigma of widowhood and provide for her family but speaks of a freedom she perceives for herself (“I will never marry again, I will fight my own battles, I will understand the power of women”).
There is hope. Sometimes, wisdom lies in the most unlikely spaces. A friend, also a woman who lives with a partner who is in and out of de-addiction centres, often jokes that women as caregivers and otherwise ought to live by the disclaimer we so often hear on an aircraft: “In case of a loss of cabin pressure, oxygen masks above your seat will deploy. Please place the mask on yourself first and then assist your child or other passengers.”
There are many mental health helplines operating across India—the details are available on the internet. Here is a list of five that offer services free of cost.
Sahai: +91-80-25497777 (Monday- Saturday, 10am-8pm)
Sneha: +91-44-24640050 and +91-44-24640060 (all days and hours)
iCall: +91-22-25521111 (Monday-Saturday, 8am-10pm)
Parivarthan Counselling Helpline: +91-7676602602 (Monday-Friday, 4-10pm)
Aasra: +91-22-27546669 (all days and hours)
FIRST PUBLISHED10.10.2020 | 08:00 AM IST