What if you found out you had a genetic mutation that significantly increased your risk of developing cancer?
My name is Anjali Karamchandani, and I am a 32-year-old mother of four children—ages 8, 7, 5 and 2. I had always feared cancer, as I lost my maternal grandparents and aunt to the disease at a young age. When I visited a genetic counselor to discuss my family history, the counselor concluded that based on the CancerGene Risk Assessment Model, my odds of having any gene mutation were less than 1 percent; therefore, she could not justify ordering the test. I refused to leave her office until she agreed to test me.
It was November 2016 when I received the shocking news that I was carrying a BRCA gene mutation (“the BReast CAncer gene”), which meant I had a significantly increased risk of developing breast, ovarian and pancreatic cancers. I was in complete disbelief as the genetic counselor had been so sure I would test negative. How could this be? I exercised every day, ate well, didn’t drink soda, and besides my obsession with chocolate, I was healthy overall.
The days following my diagnosis felt like months. I was overcome with depression, fear, and anger. I felt like there was a ticking time bomb inside of me that could go off at any time. Would I be here for my children as they grew up? Would I be able to witness all of the precious little moments and celebrate birthdays, graduations and weddings? Were my children, my siblings or my parents BRCA positive? I felt completely lost, and I had no idea what to do next.
Over the next few months, I squeezed my children extra tight at bedtime, and I wrote letters for them to read should anything happen to me. I told them how much I loved them and reminded them to always take care of each other and be kind. I told them to grow up and become the best versions of themselves, and that being their mom was my greatest gift in life. I told them I would always be with them in their hearts. Hopefully, they would never need to read my letters, but the only way I could retain any sense of control was to be prepared.
Learning I was BRCA positive sparked a flame deep inside my soul, setting into motion a series of decisions and events that would alter the course of my life. My first decision was that I was going to do whatever I could to fight for my life and be here for my children. I was NOT going to let cancer win.
I searched online for other Asian-Indian women who had gone through a similar experience. How did they feel? How did their families react? Were they concerned about their children like I was? Did they tell their in-laws and extended family? I had a million questions but was unable to find any answers.
I met with numerous doctors, trying to make sense of what was happening. My gyn-oncologist (gynecologist oncologist) ordered several blood tests, ultrasounds and CT scans over the next six months to determine if anything should be done at the time to reduce my risk for ovarian cancer. During that period, the level of cancer-antigen 125 (CA-125) in my blood had risen rapidly and my scans were inconclusive. When considering these factors, along with me being BRCA positive, my gyn-oncologist recommended that I have my ovaries and Fallopian tubes removed without any delay. Doing so would instantly put me into menopause 20 years earlier than the average woman, and I would begin to experience hot flashes, mood swings, insomnia, memory loss, and decreased bone density. Even so, I made the difficult decision to proceed with the surgery in August 2017, as I had to take action.
With one surgery under my belt, it was time to make a decision on how to minimize my risk for breast cancer. There were two options: 1) regular screening including a mammogram and MRI at six-month intervals, or 2) prophylactic double mastectomy surgery. My doctors and I agreed that in my situation, the best option was surgery. Losing any part of one’s body is physically, spiritually and emotionally difficult. It was especially heartbreaking for me to consciously decide to remove a part of my body. With that being said, my priority was to be there for my family, and I was determined to do whatever was necessary.
In November 2017, I underwent a preventive double mastectomy and lymph node removal at Memorial Sloan Kettering. The surgery lasted six and a half hours and I awoke to severe pain. I was not able to hug my children or raise my arms up for several days. I had no feeling in my upper arms and chest. It quickly became clear that my recovery would be much longer and more difficult than I had imagined. After spending one night in the hospital, I came home flat-chested with saline expanders implanted and two drains stitched into my sides. While the process was extremely painful and emotional, I knew I had made the right decision.
Following my mastectomy, I made weekly visits to the hospital for saline expansions. In February 2018, I underwent an exchange surgery in which the saline-filled expanders were traded for silicone implants.
At that point I was excited to put this chapter behind me and finally get back to being the active and fun mom I was used to being, as I had missed so much time with my children through the three surgeries. Little did I know that just eight weeks later, it would become clear to my plastic surgeons that a revision surgery would be needed. That’s what I underwent in June 2018.
It has been eight months since my fourth surgery and I am still experiencing a continuous dull pain in my chest as well as constant back pain. After discussing with my plastic surgeon, it seems that another revision surgery is in my near future. I am trying to stay positive and am hopeful and optimistic that my next surgery will bring me relief from pain and an increased level of comfort.
Even more difficult than going through four major surgeries in one year is knowing there is a 50 percent chance that I passed this genetic mutation on to my children. I constantly battle with this reality. I can only hope that by seeking knowledge, advocating for myself and taking action, I can set a positive example for my children. My hope is that as they grow older, they will have a wealth of resources and support at their fingertips.
Though the last 18 months have been the most challenging of my life, they have also been the most empowering. I have been fortunate enough to meet so many amazing and powerful women who have helped me through this journey. I have learned the importance of mind over matter in persevering through challenges, and I feel so grateful to have been able to make the decisions I’ve made.
I am sharing my story on Instagram (@angiesbrcalife) to raise awareness and encourage women to ask questions about their family histories and their bodies. I want to provide support for women who are going through genetic testing, surgically-induced menopause, and mastectomies so they have somewhere to turn with questions. I want to share how these circumstances affected me, my children and my marriage. And lastly, I want to remind them that as strong women, we are our own greatest advocates.
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I was taken aback when my late cousin shared this with me on the cusp of our twenties.
As a fairly modest Indo Guyanese girl raised in the Connecticut suburbs, the thought of discussing a stranger’s love life seemed not only foreign but shocking to me. Nevertheless, my cousin was always bold in this way. She took pride in the more daring aspects of our Caribbean culture with natural confidence. It was one of the things I loved and now miss most about her.
Admittedly however, it was over a decade before I started to understand some of her deeper curiosity in love, sexuality and mental health. This awakening was thanks greatly to Dr. Samosa.
In early 2020, Dr. Sarika Persaud, a New-York based, Indo Guyanese psychologist specializing in relationships, sexuality and complex trauma, took to Instagram as “Dr. Samosa,” an alias inspired by her favorite South Asian snack — and one she feels is a common thread for brown girls.
The platform became a safe space for brown girls to connect on topics like mental health, psychoanalysis, sexuality and relationships. From discussing sexual empowerment to building a strong sense of self, Dr. Persaud quietly became a confidant for those craving practical and candid insights the community shied away from.
Dr. Persaud and I sat down to talk about her journey and breaking these taboos in the South Asian society.
Her interest in psychology started as a journey of self-discovery as a pre-teen.
“I think I experienced myself as different from my peers,” she explained during our interview.
She didn’t get caught up in teenage drama and avoided certain types of relationships and people. Meanwhile, the friends she did make saw her in “this sort of teacher role.”
“I became curious about that about myself — how, in some ways, I found it beneficial to feel my feelings and have a depth people were drawn to, but also use it in ways to isolate myself,” Dr. Persaud said.
She was also beginning to identify as bisexual.
She shared, “I think I was avoiding my sexuality in some ways and psychology became a way for me to understand myself more. It’s always been this confluence of philosophy and science and even art for me.”
Growing up in Queens, New York, Dr. Persaud saw fellow Indo Caribbean women at a “very specific intersection of religion and culture.” It was the nexus of Caribbean values which welcomed sexuality and more modest Indian traditions. Caribbean influence seemed to “remove a boundary” on how Indo Caribbean women felt permitted to present themselves sexually, she explained. On one hand, after her Bharatanatyam dance classes, she saw her didis (the older girls) leave their classical moves behind for sexy Bollywood choreography and dancehall songs.
“It was exciting, like they were just beginning to find ways to express their sexuality,” she reflected. Then, around the same time, Dr. Persaud discovered a copy of the “Kama Sutra” at home and her mother was appalled. “What’s wrong with your daughter?” aunties asked.
Confused, Dr. Persaud thought “You own this. This is from our culture and it’s a Sanskrit text. It’s literally a religious text. It all seemed so powerful — and yet so many people were afraid of it.”
Something didn’t add up.
In 2013, she started a blog to bring a voice to topics like these. As word of her content spread, Dr. Persaud was met with backlash from her temple. Leaders said her blog was inappropriate and dishonorable to her community, but she stuck with it and her family stuck by her.
A few years later, when she launched Dr. Samosa to share her research and insights with a wider audience, sexuality came front and center.
“Sexuality — how you understand and honor what you want and like, and the ways you let yourself experience that pleasure — is intrinsically connected to how deserving you feel in the world,” she explained.
For example, if you think you’re worthy of a raise at work, a partner who desires you, or a family that listens to you — all can be linked back to a block in your relationship with yourself as a sexual being.
However, if you can feel confident in something as “primal, instinctual, and personal” as your sexuality, Dr. Persaud argues you lay the foundation for confidence in these other areas of your life.
Dr. Persaud says the fear of sexuality comes into play for South Asians.
“Being comfortable with your sexuality means being comfortable with your power,” she explained. “If everyone felt empowered and had a healthy relationship with themselves sexually, a lot of our relationships and hierarchies in society would change. And there are just so many people who benefit from women and marginalized communities (like LGBTQ+ and those with chronic illnesses) being disempowered,” Dr. Persaud said.
Throughout her work, Dr. Persaud has found it’s especially difficult for South Asian women to feel pride in themselves as sexual beings.
“There’s so much shame about the self and the body. Women especially are held to a double standard and it’s so confusing. If you look one way, you won’t get a husband. If you look sexual, no one will want to hire you for a job. Regardless of the South Asian ethnic group, there’s the same shame and belief that your body has to look a certain way, and if it doesn’t, you’re not desirable. Everything gets tied up in sexual shame.”
It’s undeniable that Bollywood movies have also heavily impacted many of our views on love and sex, but Dr. Persaud didn’t condemn this.
She says, “People need to realize Bollywood started from a tradition of classical drama and dance from ancient India. Those dances were meant to be explorations of dreams and mythical and philosophical ideas. Bollywood is just a continuation of that. It’s meant to be a break from reality.”
Real relationships are much more fraught and complicated than in films, but that doesn’t mean you should be ashamed of looking to Bollywood as a way to be in touch with romance and love in your life.
“They’re a fantasy,” Dr. Persaud added.
She also argued Bollywood isn’t necessarily as “censored” as many claim.
“People don’t have to watch others physically have sex or kiss to be in touch with their sensuality,” she noted. “It can be much more nuanced to see two people just embracing in a way that stirs up feelings. Like, how does it feel to have your lover’s head against your chest? Culturally, we just explore and express sexuality differently than the West.”
When it comes to becoming more comfortable with our bodies and sexual health, Dr. Persaud says it starts with self-reflection.
“Ask yourself why you’re afraid of being sexy or seen as sexual. Are you afraid your family will reject you? That you’ll be thrown out of your home? We all have different triggers, and once you identify yours, you can get to the issue underneath it all.”
Dr. Persaud encourages women to ask themselves important questions.
“If you’re afraid that if you assert your sexuality, your family will reject or not support you, how can you be more financially independent? How can you find pride in being able to take care of yourself?” She urges women to take inventory of what they like. “Look at books and movies and what you see in the world and consciously take note of what you react to. This puts you more in touch with yourself.”
When it comes to fostering open conversations with others, Dr. Persaud says to lead with vulnerability and clarity.
“If you wonder whether your friends have had sex yet and are embarrassed to ask, voice that concern. Share how you’re feeling or ask yourself why. Leading conversations with vulnerability allows people to connect a little bit more; to feel safer to share.”
“If you’re uncomfortable with something your partner does or want more of something else, talk about what you want to change and why it’s important to you. It’s not a shortcoming on their part, but rather you saying ‘this is what I need for myself. Is this something we can talk about and work on together?’”
With South Asian families, especially older relatives, things can get a bit more complex. Boundary setting is important as the family can bring out your biggest triggers.
“You need to be at a point where you own yourself,” Dr. Persaud explained. For example, if your mom finds out you were out with someone and questions you about it — “A bai? A boy?!” — you should be able to say confidently, ‘Yeah I was on a date,’ and also not feel obligated to give more details. Of course, that may not always be safe for someone younger, but at a certain age, it is OK to be private, to have that shield to protect and develop yourself and your confidence,” Dr. Persaud says.
Dr. Persaud also reinforces the importance of knowing your boundaries when reflecting on “coming out” to parents. She wanted to be open about her bi-sexuality with her parents; that she was dating — but not just men. She stresses however, one does not need to be excessively open.
“Not everyone has to come out and not everyone has to come out to everyone. You’re likely not facing anything new from your parents when coming out. If they are critical and judgmental generally in life, they’re probably going to be like that again. South Asian dads can really just be like, ‘Okay, don’t tell me you’re a sexual being,’” she laughed.
While Dr. Persaud is thankful for her parents’ acceptance, there are members of her family who’ve been less than supportive. She credits her confidence and sense of self for drowning them out.
“I’ve found the more I become comfortable with myself, the more I have this sexual energy that I can use creatively and in other good ways. If my dad rejects me, it doesn’t change that I am bisexual. Or if my mom rejects me, it’s not going to change this thing I know so deeply about myself. I’m just sharing something true. I can’t change it.”
Toward the end of our conversation, I shared with Dr. Persaud that I wondered how my own family would react to this article. I felt a bit of shame.
But she reminded me, “You can also find pride in it — ‘Yeah, I’m really proud of the fact that I’m one of the people breaking the stigma. I’m talking about something important to people’s health.’”
And she’s right, as was my dear cousin in her early ambitions. These conversations are never easy, but walking in curiosity, confidence and pride can help us find our power as South Asian women. It can help break the stigma surrounding love, sexuality and relationships in our community and their roles in our greater health.
In so many ways, sexual health and mental health are not only connected but interdependent. In fact, Dr. Persaud believes the more confident people are in their bodies and identities, the more confident they are as a whole — and the more attractive they are.
“Sexual attraction and energy comes from people being competent and peaceful and calm with themselves; knowing who they are,” she said, and the more we learn to embrace this and speak about it openly, the more we can not only grow but thrive.
For more on Dr. Sarika Persaud’s (aka Dr. Samosa) doctoral work and writing, visit her website or Instagram @doctor.samosa. For more on how to talk to your family or children about sexual health, visit sexpositivefamilies.com.
Mental health in the South Asian community has long been stigmatized, and South Asian individuals who experience psychological issues might feel hesitant to express their concerns due to the shame they may encounter. Nevertheless, while there has been progress made in studying and openly discussing South Asian mental health, several topics remain in need of further examination; these include studying the relationship between mental health and gender, specifically the role of masculinity on mental health outcomes.
What is South Asian masculinity?
Masculinity and mental health have come under greater scrutiny by researchers, particularly as traditional masculinity is often cited as the reason why men are less willing to reach out for support regarding psychological issues. However, the influence of masculine norms on well-being has been insufficiently viewed through an intersectional lens and is understudied within South Asian mental health. From a South Asian context, traditional masculinity can include focusing on material success while displaying suppressed emotionality, which can be manifested through anger or practicing other harmful behaviors.
In order to understand its influence, it is critical to examine the impact of traditional paradigms of masculinity across the diaspora. For instance, some traits associated with traditional masculinity among South Asian men include displaying control over others. A Sri-Lanka-based study found that most male participants “associated manhood with dominance…” A Forbes India article asserted how boys in India are “taught to … apply themselves to the task of growing up to be a strong, unwavering support system for their families,” which in turn forces them to be silent about topics that may make them seem weak. This pattern of behavior becomes manifested in a particularly harmful way because boys grow up with the inability to handle their emotions or formulate healthy coping strategies during challenging circumstances.
These norms can have drastic implications and harm other community members. For instance, a focus group conducted among Nepali men found that failure to deliver for their household economically as breadwinners eventually resulted in heated disputes, which escalated and led them to engage in domestic violence. The presence of domestic violence can also be observed through media stories on the pervasiveness of gender-based harm within South Asian communities, as seen in the murder of Sania Khan.
Traditional masculinity also hides the wounds that South Asian men may be battling within themselves. One paper asserts that for a sizable number of Indian men, “…sadness and despair find a distorted manifestation in destructive behaviors that deny their emotional pain to themselves and to others.” Thus, performing conventionally masculine behaviors can mask deeper mental health issues.
Repercussions of South Asian masculinity on mental health
Because of the pressure to adhere to such strict standards of conduct, traditional masculinity has significant, greater repercussions for mental health and well-being. For instance, because of the narrow ability of men to compartmentalize their feelings, this restrictive emotionality can result in an inability for others to recognize their mental health issues, thus failing to target the deeper causes of men’s behavior. Furthermore, men themselves might engage in fewer help-seeking behaviors. This is also further complicated due to gaps in culturally competent services that can serve South Asian men when they do utilize support systems.
Additional social forces experienced by South Asian men might explain mental health outcomes, particularly when considering the role of immigration. Among South Asian American men in the United States, one study noted that “a lower social position” within their community was linked to higher distress, indicating how critical it was for first-generation men to be leaders and actively participate in their ethnic community’s organizations. Thus, social expectations of men within South Asian communities influenced their well-being, as did their social status and relative power.
What we can do to change the status quo on South Asian masculinity and mental health
In order to ensure that men in South Asian cultures can embrace their mental health, it is important to formulate a prudent, welcoming paradigm that encourages greater help-seeking behaviors. Greater attention to this topic can also contribute to theories on feminist and sociocultural therapeutic frameworks, which both offer the following includes suggested remedies:
Challenging gender stereotypes and encouraging mental health care as a means to discuss issues about well-being
It is imperative to encourage South Asian men to show more emotion, thus changing the existing narrative and social pressure they face to limit the expression of their feelings. Fortunately, there is a platform, known as @BrownManTherapy, that posts content about the struggles South Asian men experience. Furthermore, therapy ought to be recommended as a means to deal with mental health concerns, which should be combined with support from the community.
More South Asian male clinicians
In addition to instituting changes in community norms, there needs to be more diverse representation in the mental health field. In doing so, there will be greater platforms to have conversations about the negative repercussions of traditional masculinity that are unique to South Asian men. Furthermore, it is critical to challenge the social stigma that mental health is a female-dominated profession or that seeking therapy is emasculating.
More research studies examining cross-cultural differences in masculinity across South Asian cultures
The connection between masculinity and mental health ought to be investigated much further. Studies should particularly assess masculinity within non-white contexts in order to examine the standards of manhood across several communities and truly understand the unique stressors men face across different cultural backgrounds.
While the connection between South Asian masculinity and mental health is not discussed among psychology professionals, it is critical to study the association since it plays a role in South Asian gender inequities and in mental health behaviors among South Asian men. More broadly, given the prevalence of intimate partner violence within the Asian American and Pacific Islander communities and the role of patriarchal norms in inflicting this harm, it is now more important than ever to reimagine expectations surrounding men’s behavior.
By further examining the problems caused by adherence to traditionally masculine norms and implementing certain solutions, these ideas can be challenged and dismantled to create a progressive and more inclusive model of manhood. Above all, identifying and eradicating toxic ideas rooted in traditional South Asian masculinity will lead to liberation for all people.
In July 2022, Sania Khan’s life was ruthlessly taken from her by her ex-husband. Sania was a young, vibrant South Asian woman – a creator and photographer who had the courage to step out of an abusive marriage, even in the face of community norms that discourage women from speaking out. While this tragedy seemed to stir a consciousness in the South Asian diaspora that we can no longer justify the status quo, it is far from the only such incident. Just months later in December of 2022, Harpreet Kaur Gill was stabbed to death by her husband in Vancouver. While the most extreme cases like those of Sania Khan and Harpreet Kaur Gill are highlighted by mainstream media, a small body of research provides evidence that intimate partner violence experiences are equally, if not more, prevalent in South Asian communities than the general population in the US or Canada. That’s why we need to do more as a community and throw light South Asians and intimate partner violence.
Despite the identification and investigation of these norms in South Asia, there’s so much we still don’t know about diaspora communities, especially in relation to South Asians and intimate partner violence. In the US, South Asians have become one of the fastest-growing populations, but we remain unaware of how the stresses of raising a family in a different culture, and the weight of growing up between two worlds, affect these norms, expectations, and experiences among South Asian immigrants, the second generation and beyond.
In this article, we’ll take a deeper look at how these norms are enacted to influence intimate relationship dynamics, discuss the recent rise in intimate partner violence, and explore the work that researchers, policymakers, and program implementers can do to address violence in South Asian diaspora communities.
Social Norms and Violence in South Asian Diaspora Communities
Why does it take catastrophic events to serve as a call to action? For one, the “model minority myth” continues to portray South Asians in America (who originate from Bangladesh, Bhutan, India, the Maldives, Nepal, Pakistan, and Sri Lanka) as a healthy and wealthy group. As a child of Indian immigrants, I always thought this was just a frustrating trope that lived rent-free in my head next to the eternal question, “Log kya kahenge?” (What will people say?) However, I have realized that this constant worry is not just an innocent preoccupation. It’s the result of a dangerous spiral beginning with the portrayal of South Asians as a model minority and the need to maintain that well-to-do image. This only reinforces the traditional gender norms that overlook men’s perpetration of violence and encourage women’s silence, crippling any efforts to understand the scope of the problem and draw attention and resources to address it.
The Impacts of COVID-19 on Intimate Partner Violence
Prior to the start of the COVID-19 pandemic, the frequently-uttered phrase among researchers, practitioners, and advocates alike was “one in three” — one in three women ages 15-49 experiences physical and/or sexual violence inflicted by an intimate partner in their lifetime. Under the cover of the COVID-19 pandemic however, rates of violence against women rose dramatically, prompting UN Women to call for recognition of this “Shadow Pandemic.” During the height of the pandemic, the social isolation that came with lockdowns and quarantine procedures to curb the spread of disease made home a more dangerous place for an increasing number of women. As communities seek to rebuild, the inequities in access to and use of potentially lifesaving services have deepened. Now more than ever, it is critical that we shine a light on the many intersections of our society to prevent South Asian women’s experiences of intimate partner violence from being pushed even further into the shadows.
First and foremost, to better understand South Asians and intimate partner violence, we need better data disaggregated by racial/ethnic group. Since the 1980 Census, only those of Indian origin have had a fill-in bubble.All other South Asian groups have to write something in, decreasing their participation. South Asian communities in the US are not a monolith and they are certainly not all of Indian origin. This perception, fed by our lack of data, likely privileges the Indian community in America and limits the visibility of other South Asian communities.
More accurate information will help us better understand where the need is greatest. We can make a stronger case for more equitable resource allocation, improve South Asian language materials for survivors, and enhance provider training programs, accounting for the specific cultural implications of disclosing and seeking treatment for violence in South Asian communities. Public health researchers should increase efforts to understand the prevalence of experiences of violence, the environmental factors that make South Asian women in America vulnerable to experiences of intimate partner violence, and how it impacts their health.
While outstanding organizations such as Narika in California and Sakhi in New York are leading the charge in raising awareness, running active helplines, and providing support, they cannot be the sole safe space for survivors. While the system’s failure to protect Sania is not an isolated incident, it has served as a wake-up call.
All South Asian women in America should be able to be healthy and safe and lead lives free from violence, coercion, or abandonment. To achieve this, we need better data, more research, culturally-tailored resources, and appropriate legislative action that will allow for prevention, screening, and treatment efforts to finally take root.