"NOBODY TALKS ABOUT IT"
FROM DECEMBER 2022 ISSUE OF WEST END PHOENIX
At the height of the pandemic, South Asians reported the poorest mental health outcomes of any racialized community in Canada. But finding the words to discuss what’s happening to them — not to mention finding a South Asian therapist to provide culturally relevant care — can be a significant barrier to treatment. Here, Karandeep Gill talks about her own struggles with mental health, the resistance from her family and how she found a way to move forward
The first time Karandeep Gill felt something was wrong, she was 14 years old. It was 2009, and she was sitting in her Grade 9 English class in Brampton, her twin sister beside her, when she began feeling an intense pressure on her chest — “like a chain of rocks.” She describes a feeling of “extreme chest pain, my throat closing up, and not being able to make out my words.” Gill was terrified. Her father had recently suffered a series of strokes, and her fear turned to the possibility that she was having a heart attack. She fought back tears. Her sister was the first one to notice and alerted their teacher, who took Gill to the office and called an ambulance.
“I remember, after the ambulance came, [students] were stopping, just looking,” Gill says. Unsure what was wrong, her peers started whispering. “Not everyone around me knew what was happening,” she recalls.
Once the paramedics gave her a check, they told her she’d experienced a panic attack. She laughs sardonically. “I didn’t even know what a panic attack was.” Gill went back to class.
A few days later, Gill visited her family doctor, who recommended medications and therapy, all of which she declined. In the following weeks, though, depression and anxiety settled in, so severe that it was difficult for Gill to function, to get out of bed, to brush her teeth or take a shower.
“I remember at one point my mom helping me out of bed, because I had no energy to do it myself.” Gill suffered panic attacks nearly daily, each one wearing her down a little more. As is often the case with the onset of serious mental illness, she didn’t know where these emotions were coming from. The only trigger she can think of now is the pressures of school.
“I remember New Year’s Eve,” she says. “The stress of the new year, what had happened in the past year to me — I remember just crumbling and having another panic attack.” That’s also when her paranoia first set in, which would end up forming the basis of her first psychotic episode.
Gill didn’t have the words to articulate what was happening to her. Her friends didn’t understand what she was going through; she started seeing them less. “Back then, everyone was uneducated about mental illness and didn’t know how to react.”
While she was at school, Gill would eat her lunch in a bathroom stall because, she says, she didn’t want anyone to worry about her. That small space became her safe haven, the only place she wanted to be. When she wasn’t there, her anxiety was unmanageable. But even that feeling spiralled out of control. “In my mind, I was like, ‘I should be getting anxious about [anything]’ and ‘Why am I not anxious?’”
Gill shrugs. “That’s just how anxiety is,” she says. “It’s one thing after another.”
Then, near the end of her Grade 10 year, Gill arrived at school with a suicide note in her backpack, along with a bottle of pills. After months of living silently with depression and anxiety, coupled with the bubbling-up paranoia, Gill had had enough. She felt like there was no other option.
That afternoon, she went into her stall in the washroom and swallowed all the pills. She doesn’t really remember the details after that, although she knows she was rushed to Brampton Civic Hospital — the first of what would become many hospital stays over the years.
“When I was going through depression,” Gill says quietly, “my mom would say something like, ‘Back in India, this never happened. I’ve never seen someone go through this.’” Gill told her that didn’t make sense, because India has one of the highest suicide rates in the world. “But it’s not talked about,” she says, shaking her head. “No one talks about it.”
Just after her 15th birthday, Gill experienced her first psychotic episode. It started with intrusive thoughts — what if she hurt someone? What if someone was trying to hurt her? “I think the scariest thing is being afraid of your own mind,” she says. “Those thoughts kept constantly coming into my mind, overpowering, to the point that I was scared I was going to hurt someone.
“And then the psychotic episodes happened,” she says. “I thought cameras were in my room. I remember so vividly taping my windows with paper because I didn’t want anyone to see what was going on inside my room.”
That’s when Gill’s parents made the decision to take her back to the hospital, where she was diagnosed with schizoaffective disorder, bipolar type, a subclass of schizophrenia that comes with extreme mood swings, delusions and hallucinations. “My family knew something was extremely wrong with me,” she says. Still, despite her diagnosis, Gill remembers a lot of resistance, particularly from her mother. The stigma was too great, and it lasted a long time.
Dr. Gursharan Virdee has seen the consequences of this stigma firsthand. Virdee is a Toronto-based psychology researcher and clinician who understands the barriers South Asians face. “[South Asians] don’t go to their family doctor [for mental health care],” Virdee says. “They don’t go to CAMH [the Centre for Addictions and Mental Health]. If there’s a South Asian person reaching out for help, they are probably already in crisis.”
For Gill and her family, the language to articulate what was happening to her simply didn’t exist. The difficulty, says Virdee, is that it’s hard to find culturally and linguistically relevant supports nationwide, even outside a hospital setting. Within the hospital, it’s nearly impossible. As Virdee explains, “There is a scarcity of South Asian psychologists and psychiatrists in Ontario.” And traditional Western mental health care, which often fails to take these factors into consideration, can leave South Asians feeling poorly understood. The result is patients either do a lot of the hard work themselves or, Virdee says, “they usually abandon treatment.”
“Where I see some South Asian clients really struggling,” Virdee says, “is, for a long time, their family has been their main support.” When they face a mental health crisis or are hospitalized, the family dynamic is ruptured.
And there’s a ripple effect that happens. Sometimes individuals may not want their family involved in their treatment, or their family may want to keep their mental illness a secret, as disclosure could create obstacles for other family members in the community. Marital prospects can suffer, not just for the mentally ill individual, but for their sibling as well.
Community ostracization can lead to worsening mental health, Virdee says: “Stigma is so insidious.”
“There is a scarcity of South Asian psychologists and psychiatrists in Ontario,” says Dr. Virdee. And traditional Western health care can leave South Asians feeling poorly understood. The result, she says, is “usually abandoning treatment”
Between 2010 and 2014, Gill was hospitalized four times, each time, she speculates, triggered by a combination of stress at school and stopping her medications. Members of her family would tell her, “How do you know your true self if you’re on these many medications? What if that’s not your true personality?” Gill says. “That was one of the reasons I kept getting sick, because I kept going off my medications cold turkey. For a few weeks I would feel fine, and then I’d relapse again.” She says her brother, who was experiencing depression at the time, “sometimes felt like he was superior to me because he’s off [medications] and I’m [still] on them. The dialogue isn’t there.”
Throughout the course of her illness and hospitalizations, Gill’s frustration around the mark of mental health in her community had grown. She wanted to start a conversation, so she decided to use her own story — even as it unfolded — to do so. She’d already been using her Instagram account, @livinginpeacee_, to talk about her mental health journey since 2017. To give a face to mental illness, she began posting images of herself as she struggled, along with quotes she found inspiring and other useful information. In late 2018, she shared a series of selfies — raw and tearful photos, anxiety on her face, feelings of depression and frustration apparent. The post gained hundreds of reactions. After that, though, her mental illness took hold again and she had to step away.
In 2020, Gill found herself back at Brampton Civic Hospital. That’s when a pharmacist intervened, presenting an image of a healthy brain alongside one with serious, untreated mental illness. The difference, Gill says, scared her mother.
“The pharmacist was like, ‘This is what’s happening to your daughter’s brain, and long-term, it could cause memory loss,’” Gill recalls. The pharmacist added, “’It could cause so many other problems, because her brain is degrading if she keeps declining treatment, or she keeps going off her medications.’”
This, finally, swayed her mother. “And then I think my mom saw the physical representation — because mental illness is invisible to a lot of people.”
In 2020, the Canadian Alliance on Mental Health and Mental Illness (CAMHMI), a non-profit organization of health-care professionals and individuals with lived experience of mental illness, approached Gill to be one of the representatives of its Faces Campaign. It opened doors for Gill to tell her story to a wider audience. Shortly after, Global News reached out for an on-air interview, followed by other news outlets. At the height of the pandemic, when South Asians were reporting the poorest mental health outcomes of any racialized community in Canada, Gill was giving voice to those issues on a national platform.
The highlight came in 2021, when CAMHMI invited her to speak with Sophie Gregoire Trudeau in a live broadcast, hosted by CAMHMI and posted to social media. The event, called Fireside Chat, was designed to highlight personal stories about mental illness.
When she read the email extending the invitation, Gill was in tears. “This [was] so surreal. I [couldn’t] believe it.” She started to recognize not just the impact she was having, but her own resilience. “I was like, ‘Wow. I have my own strengths.’”
While Gill’s story has spread nationally, it has highlighted the burden South Asians shoulder when approaching their mental health care.
Culturally relevant care is a step toward ending stigma, but accessing South Asian practitioners is a problem. Dr. Saunia Ahmad, director and clinical health psychologist at the Toronto Psychology Clinic, says. “We don’t have enough people who are trained [and] who are [also] of South Asian background.”
Ahmad has worked in inpatient settings, and now runs a private clinic downtown on Edward Street that serves mostly South Asians in the Toronto area. The underlying problem, she says, is that South Asians don’t receive the same opportunities to enroll and graduate from clinical programs. For those who do, Ahmad continues, “the government doesn’t have enough [jobs] for psychologists, social workers and psychotherapists [in a public setting].”
To bridge the gap in culturally relevant mental health care, Ahmad is one of many racialized psychologists and psychology students who are focused on equity and inclusion in clinical practice fields. Through the Ontario Psychologists for Racial Justice (OPRJ), Ahmad and her colleagues are addressing racial vacuums in the practice through advocacy, and anti-oppression and anti-racism training for mental health professionals.
In the absence of sufficient practitioners, grassroots organizations have also emerged within the Toronto South Asian community to offer more culturally relevant education. Along with five other South Asian women, Dr. Virdee heads The Roshni Project, created to support the mental health of young South Asian women. Over the past five years, the project has explored the unique psychological and emotional needs of its participants. It has also worked with them to create short digital films designed to help South Asian communities with identification, early intervention and prevention of mental health issues; and it developed a series of tip sheets for family members, educators, spiritual leaders and mental health service providers so they can better support young South Asian women in crisis and during recovery. The project has demanded a lot of work from Virdee and the Roshni team. “But you do it because it’s your community,” she says. “It’s part of my own religious belief, which is Sevā, meaning giving selflessly.”
In 2015, two registered nurses, Jasmeet Chaggar and Maneet Chahal, founded SOCH Mental Health in Brampton with the mission of empowering community members to recognize mental health as a vital part of their wellness. They’ve led workshops in both English and Punjabi and spoken at gurdwaras, libraries and public schools. During the pandemic, they put together sessions for women on living with extended family members and in-laws during lockdown and creating boundaries while working from home. Over the past few years, Gill has also been involved with the organization, sharing her story.
In 2021, Gill’s mental health declined. Even though her mother came around to the importance of medications, other family and friends kept reinforcing the message that pills weren’t the solution. “It gets to me,” Gill says. She decided to stop taking them.
Her relapse was one of the most severe yet. She experienced hallucinations and delusions, and was hospitalized again, this time in solitary confinement for her own protection. “I was in a room by myself, and I couldn’t take a shower,” she says. “I couldn’t really leave my room because [the staff] were trying to protect me from hurting myself.”
Gill sighs. “I was in such a psychotic state.” While in hospital, she started her medication regimen again, and after a few weeks, she was well enough to be discharged. She says, “I feel I needed more support from the hospital. I needed someone to talk to, someone to be there for me, even if it was just someone coming into the room and asking if I was okay.”
Still, Gill recognizes the marked difference between her 15-year-old self, who was first hospitalized, and the 27-year-old she is today. Through years of hard work, she has dismantled a great amount of shame, both internal and external. She’s capable of talking about her struggles. She has a motto she likes to reference: take everything one day at a time. If today is horrible, there’s tomorrow. If tomorrow’s horrible, there’s another day after that.
Today, Gill is in her third year of a speech communication and business program, living with her twin sister in Waterloo. They share in the cooking — orzo salad is a favourite — and watch Friends on Netflix; there’s a spicy wings place where she and her friends like to go. These small details remind Gill that she has support to fall back on.
Gill knows that with her mental illness, rehospitalizations are common and she might experience them again. In the meantime, she’ll do everything she can to stay healthy.
“I look back to my culture in India and everyone was quiet about [mental health],” she says. “And I think it has just carried on from generation to generation ... like autopilot. But you can’t just expect someone to share right away. It has to go slowly. And I think it’s happening [in the] South Asian community.” She’s seen that change happen in her own family. And that in itself is a win.
Although her studies have stretched on longer than she’d hoped, Gill is taking it slow, always with a finger on the pulse of her mental health. She imagines what her convocation will be like, whenever that day comes, and begins to grin.
This is the second instalment in When We Return, a series that explores the varied experiences of mental health patients after discharge from the hospital.
This series is supported by the Joe Burke Fund for Social Justice Reporting, which was created in memory of Joe Burke, the late social justice advocate and lawyer.