Vijay Nallawala is an entrepreneur, author, and mental health advocate. In 2013, he launched Bipolar India as an online portal and community for those suffering from mental illness.
He also authored A Bipolar’s Journey: From Torment to Fulfillment, which details his struggles and ultimate triumphs after being diagnosed with bipolar disorder in 2003.
In this video, Mr. Nallawala speaks with us about his journey, the state of mental health in India, and the immense progress Bipolar India has made through affiliations with Mariwala Health Initiative (MHI), Centre for Mental Health Law & Policy, and numerous other organizations in India.
Nikhil
Hello everyone, this is Nikhil Torsekar coming to you from Chicago with the Shelly Story. Today I have with me Vijay Nallawala. He is the founder of Bipolar India, and I will tell you a little bit more about his background. He is a commerce graduate majoring in financial accountancy. Vijay has been an entrepreneur for over three decades. His lived experience with bipolar disorder became the inspiration for him to extend outreach to community founded by Vijay in May of 2013. Bipolar India is a unique hybrid online and offline model, which now has over 600 members pan India. Vijay penned down his journey of recovery and his book–A Bipolar’s Journey: From Torment to Fulfillment–was published globally in 2015.
Bipolar India has launched a pioneering initiative in August 2020, called letswalktogether.org. Conceptualized and founded by him, it is focused on livelihoods for persons with mental health conditions, and has been supported by the finest thought leaders in organizations from the mental health and policy domain. Vijay has been invited as speaker and important seminars and conferences on mental health and has appeared on numerous webinars, podcasts and video films. He’s passionate about his fitness and loves writing, music, photography, and travel.
So Vijay, welcome, thank you so much for joining us. And I appreciate it.
Vijay
Thank you so much for having me on this platform, Nikhil.
Nikhil
Yeah, my pleasure. So I wanted to tell the audience a little bit about what led to this conversation. So as you may know, my wife Shelly and I have written a book about our journeys with mental health, some of the highs and the lows. It’s really intended to offer hope to people out there who are either suffering from bipolar disorder, or have a loved one who is suffering from the illness.
And it was something that because we are both of Indian origin, our parents were born in India, we grew up here. It’s really something that is, I think, unique when you place it in the cultural context of South Asians in the United States, because we’re very successful group. You know, obviously, the CEOs such as the CEOs of Google and Twitter, and IBM, and Microsoft. There’s so many successful Indian entrepreneurs out there who are really making strides.
And there’s always two sides of the coin. And one of those would be sort of the little bit of a stigmatization of mental health and being a model by not being part of that model minority myth, there’s really compunction to keep your head down and achieve and just focus on the task at hand. And any sort of need for self care or mental you know, attending to mental illness is sort of seen as a weakness.
And so Shelley and I, that’s our mission, really, with this book and these podcasts is to eradicate that stigma and foster some open dialogue. And so that’s why are another part of our journey is not just looking at the way mental health is handled here in the US, but sort of going to the route going to the, to the to the motherland, if you will, in India.
And so we were very fortunate to cross paths with Mr. Nallawala, who is the founder of bipolar India. So we reached out to him to see if he’d be interested in talking to us about his journey. And he graciously agreed. So, Vijay, I wanted to thank you again.
Vijay
My pleasure, Nikhil
Nikhil
So Vijay, if you can tell us a little bit more about your story? I think I gave the viewers and the listeners, the broad strokes. But if there’s more you want to tell us about how you became you know, how what was your entry point into the world of mental health and sort of how it’s evolved since then, if you could shed some light on that.
Vijay
Certainly Nikhil. I would say my journey was more about floundering on the path to discovery in the first place that I had any mental health issue to begin with. So it was sort of finding my way in the wilderness for a large span of 26 years. I mean, hear that again, 26 years. Why this is this is significant because it also points out and the sheer lack of awareness around mental health in India.
And even more accentuated if you go back by around two, three decades when the period we are talking about in the late 70s and early 80s.
So I was a 14 year old. And that was the first time when I encountered a very severe phase of depression. And this would last for around six months or seven months. And nobody noticed what was happening except me. And even I couldn’t identify it as depression, because we didn’t understand what depression was back then. All I could gauge was that somehow, I felt that I was my world was falling apart. And I couldn’t make sense of what was happening to me.
So neither did I get any attention for depression or for any other condition that I was suffering from. At that point of time. I had similar episodes down the line at 17, when I was in college, in my first year, subsequently, when I joined an enterprise, which was a family enterprise, and this is a surprising part, despite the space being pretty severe, debilitating, and nobody really spotting the issues, you know. So as often, so often happens with bipolar disorder. You know, diagnosis first happens when the episode gets really, really out of hand. And mania typically, is something which is difficult for somebody to overlook.
So I might have had many episodes of hypomania. Prior to that my full blown manic episode happened in 2003. For the first time, it must have been there for a very long period before then. And it had come to a level of high degree of escalation, leading to a lot of disruption in the way I was functioning, my thought processes.
And my hawkeyed sister at that time, noticed that there was something really, really wrong with me, and I needed professional attention. And as happens with people that in that frame of mind, I was in denial. In fact, I claimed that my family needed attention. It wasn’t mean I was a genius, all the solutions available have so.
And I was taken to a psychologist, and that’s where the first diagnosis, I mean, not even the diagnosis. So she says that you have come to the wrong professional, this guy needs to be taken immediately to a psychiatrist noticing the severity of my condition. Sure. And straightaway, I was rushed to the psychiatrist and from there to hospital.
So, so this is how the journey transpired from the age of 14 to 40. And the initial diagnosis at that time, was manic depressive illness, as bipolar disorder was named termed, clinically, way back then, in the early 2000s. I was a successful entrepreneur back then. In fact, I was I was at the pinnacle of my career. It was a 14 year old enterprise in the field of audio visual equipment rentals. And this came at as an absolute shock to me. The first thought that struck me when I was laying in the bed at hospital was that now I’m mentally ill. And that was how overwhelming. Because the whole stigma around mental illness was so much so much, you know.
So the immediate thoughts were very negative and, and sort of crushing: How would peers look at me? How would family look at me, the extended relatives, friends, and so on? Right?
It led to such a situation that I had to wind up my successful enterprise because I had lost all motivation for running it. So to cut a long story short, it was no from their own. It was a struggle of see around another six, seven years, at least before I found a semblance of stability, right. With a combination of no back backing of treatment from a very good psychiatrist therapy and my own self discipline. I found my way back again, good.
Nikhil
Yeah, that’s, that’s incredible. I did want to understand a little bit because you mentioned I like the phrase you use—“hawkeyed sister.” And I want to understand the impact that family plays in the mental health journey.
I myself can tell you that I have struggled with bipolar disorder. I received my diagnosis at the age of 40, so about six years ago, but it was something that I struggled with the symptoms for more than two decades. And with my family, I think initially it was something they either were aware of it and didn’t want to acknowledge it, or they, they just they couldn’t see it.
It was really my wife who could see the trend lines they’ve talked about financials; she could see the trend lines, not just the little data points, she could see that there were times where I would have elevated moods, and be very creative and very high energy. And then there would be times where I would just not be able to get out of bed. And so she was the one who even though we went through a very acrimonious separation, she was the one who did force me to face my demons and get treatment.
So I’m bringing that up, because it’s so the role of family is so important, because you really need people who can understand the entire person, not just sort of what the patient is presenting with at the time of their appointment. So I want to understand, in your experience, and also just in India, in general.
How does family play into mental health in with regards to India specifically? And I asked that question, also, because India and the US have a lot of differences, obviously. And I’d say the, one of the primary ones is just the role of family in that, as you and I talked about before families are very close knit in India, and a lot of times there’s people who go off on the road in the US, whereas they’re very close knit in India. And so they get that can either be good in that there’s more awareness, but they can also be bad because there’s a need to keep up appearances. So can you shed a little bit of light of sort of what the role of family plays in, in mental health India, good and bad in your experience.
Vijay
So in fact, Nikhil our community gives us a ringside view of the scenario, because the community doesn’t comprise only of people living with mental health conditions, but their family carers also in many cases, sure, so we understand their viewpoints and challenges as well. So very relevant point that the structure of family in India is entirely different. And especially when it comes to caregiving.
For a person with severe mental health conditions make a fact I would go on to add and say that we really don’t have a primary health care model for mental health we can, I would even go further on to say that, that the family de facto becomes the primary health care center for the person living conditions. Alright.
So, in fact, many times the diagnosis is initiated from there, if not diagnosis, at least alerting the professional about the science of abnormal behavior or thought patterns or things like that. Secondly, the attachment is much more in Indian families, where everybody is very emotionally close knit, where it’s not that people would be considered as burdens typically, when there is something like this, which is a challenge for even the family carers, it is a challenge let’s excetera Right, yeah.
So, by and large, the atmosphere is very supportive, even in terms of financials. So, we know of people who are not able to analyze legal and there are parents who are parents and siblings who rally around such persons. So, I think that the support system is not only extending to the mental health support part of it, but in a more generalized way, which makes a meaningful difference to the life path of that person. On the other hand, sometimes it can be stifling also, for the for sure. I understand that. Because, and although you know, the material stuff to support might be coming in, what might not be coming in would be that emotional connection that understanding because of the lack of awareness, the lack right sensitization towards these issues. So, so instead of sort of creating a nurturing atmosphere, inadvertently, what happens is, it creates a toxic atmosphere for the person living with such challenges, trivialization of certain day to day issues that we face, you will know that too. Well, we can right?
Nikhil
Yeah, yeah, absolutely.
Vijay
I guess calling the person lazy or you’re not working hard in their head, sort of motivate the person and to sort of get the person going, but it might sort of also backfire.
Nikhil
Right. And then also the identity is so intertwined with family members because I think a lot of their every day is spent together for dinner for breakfast there’s then obviously they go to work and then come back, and so on. There’s always that sense of, oh, if you know, if something’s wrong with Sanjay, then there’s something wrong with me too. And so there’s this desire to sort of push it under the rug. And it’s that old mantra “out of sight, out of mind.”
So I was just curious, have you found that to be the case as well is that there’s a lot of denial.
Vijay
And, in fact, you mentioned a little bit about what lack of awareness does the kind of approaches might have, we might be a little different in the western context, and in the developed world, and what countries like in South Asia, typically India face, because the when it comes to denial, initially, all attempts would be to sort of try other approaches, except the one which is tried and trusted in which will really work,
Nikhil
Unfortunately, yeah. Tell us a little bit more about some of those approaches, because, yeah, obviously, in India, there’s a lot of spirituality, it’s a beautiful tapestry of spiritual faiths, not just Hinduism, that’s the predominant one, but Buddhism, Jainism, Sikhism, all you know, it’s, it’s, I always like to say, it’s a beautiful tapestry of cultures, but tell us a little bit more about some of those non medicinal approaches that are practiced in India for a better world.
Vijay
So, I grew up in a joint family, as my parents were separated when I was just five. And I was brought up by my maternal uncle, and my maternal grandparents, and our family had a lot of deep rooted, spiritual sort of upbringing, and those beliefs, which came along with it.
So the initial period when I was showing some signs of strife, so the first quick fix was to try to get me to tantric to find out what’s wrong with this guy. So the initial thought was, there was something wrong with needed to be fixed at a spiritual level rather than look at any possible clinical solutions, biochemical biochemical issues, I remember. So I remember me being taken to temples, also and behind my back people, discussions happening below astrologers being consulted about what could be perfect for me. And I don’t blame these people at all; all this was done with good intention. It was only that they weren’t aware, the methods were totally inappropriate, you know. And so, if we go back to the late 70s, and early 80s, that’s what, and we were in a very small village. And before saying I back then now was a is a sort of a large town, it wasn’t back then. So it was like an island cut off from the rest of the world.
Vijay
Even even more magnified, then it will be in a large Metro City, like Mumbai, or Delhi or somewhere else. Yeah, so as to put these things in context. But these sort of childhood sort of inputs, did have a lever long lasting impact on my psyche. In a positive way, I will say, yeah, so I’m myself deep believer in, in God in a higher power.
And I do believe that God has played a major role in my recovery, because at the time when I was down and out, when inspiration was lacking, belief was lacking. There was some external input coming into me, which was telling me to hang in there and sort of your keep at it, keep trying, right, get through this. Yeah. So. So two days to this date, I remain a deeply spiritual person. And I think, besides families, it’s also the persons themselves, also who have these kinds of experiences.
And another aspect about bipolar disorder, especially is sometimes our experiences and sort of, what would you say that the way we look at spirituality could be a bit exaggerated and dramatized due to the sort of cognitive distortions we could face and, uh particularly vulnerable moments. And it happened to me as well.
Nikhil
Yeah, I would love for you to tell everybody about bipolar India, how that journey evolved. My understanding is that you started looking to writing as a creative outlet. And then I think it attracted the attention of some folks, and then snowballed into this big community and this portal. But if you could walk us through a little bit about that sort of the genesis and the evolution of bipolar idea.
Vijay
Oh, sure that that is an organization, which I’m very passionate about, firstly. So I took to writing around 2011 or 2012. At that time, my enterprise had just been shut down a few years before that. And I was dabbling with life insurance for around seven, eight years successful at that also. And somehow, I felt my heart wasn’t at what I was doing. And I needed some new creative expression took to writing, I became a blogger, pretty successful one at that also. And one of my blog posts was, it was titled, at the crossroads of life. And that was my coming out of a story of living with bipolar disorder and kind of touching recovery. Yeah.
And that attracted a lot of attention, because this was way back in 2012. That’s exactly a decade before. decade earlier, this where were short stories of opening up where the rarest of rare cases happening. Yeah, yeah. Especially for conditions which were as severe as misophonia, or bipolar disorder. It was very rare, I would say, and a mentor friend of mine, but neither, who himself is a published author and renowned writer, read my writing this particular post, and some of the stuff came across and met me. He understood, try to understand what where I was coming from, and what is that I needed to communicate to society. And he felt that this needed to be taken to one step further than just a blog or just a group on Facebook or something. So therefore, even the coinage of the term, “Bipolar India” was his brain wave.
Nikhil
It’s a great name.
Vijay
Yeah, yeah. And the vision that there was a need for a community in that era of darkness where there was no conversation happening at all. Alright, right. So imagine a guy with no direct connect with mental health coming in and telling the look that there is a dire need for this to happen.
Nikhil
Yeah, so Mr. Bhatnagar. You mentioned, he’s a branding expert or storyteller? He also has, he also has a lot of expertise and exposure in mental health?
Vijay
He has very little exposure to, okay, only ability to grasp what is possible. Yeah, he has this ability to connect, and to find out, what is this person’s specific ability, which would be a click big time, what is the need of society at large, and how to connect the dots, I see that it’s not only my case, it’s happened elsewhere. Also, I’ve noticed big successes and breakthroughs happening. So he, in fact, registered the domain name for me, and created a dummy website for me to sort of operate from. And that’s how it started rolling.
So in May 2013, our first blog post on the site came up. Initially, the thought was to just create awareness, because even that was a big necessity, no questions about it. Right. Right. Right. So the objective was to create awareness around what bipolar disorder was, more or more people to engage with us to sort of initiate conversations. Even that didn’t happen initially were to our satisfaction. In fact, most of the traffic we got was from the US and the Europe, which was counterproductive, getting adequate awareness.
Vijay
So it took a couple of years for those folks, was mostly folks like myself, who, like were in the states growing up, and they were struggling with the cultural aspect of it. And they wanted to get some insight in that is that kind of what the flavor of the most of the people who were interested in at the time, ready to go.
Vijay
So but that wasn’t meeting our objectives. I mean, we needed to connect with our home audience where there was so after a couple of years, with constant effort to sort of publicizing this on social media, gradually, we created a base, and the most encouraging part was conversations began happening in the form of comments and discussions on the platform itself.
And the most heartwarming part was people opening up, which was a big victory way back then. If you can look at it in perspective, opening up about mental health conditions in public domain takes some doing, and that that breakthrough was achieved in say around in the period of 2015 or so there abouts. And so, essentially, at that time, there still was online community based mainly on the portal and then some interaction happening on social media.
The breakthrough happened when five years ago, we started our offline peer support meets in Mumbai. So what began as a meet one, one fine Sunday morning in a suburb of Mumbai, became a monthly affair since then. Alright. And then that mushroomed to a few other cities in India as well.
And we have been doing the offline conferences as well, the World Bipolar Day conventions since 2016. On March 30, as you know, that’s when the World Bipolar Day falls, right? Right. So we are the first entity to hold a world bipolar day conference in India of that on that scale. ]
So it was a pan India conference with participants coming in from all four corners of the country that, as you know, have set us rolling and the community kept growing in size. And what we realized is that in between the meats, then the people were left without any anybody to handhold them or to sort of support them in their continuity. Yeah.
So we, we connected everybody through a Telegram-based group this is our community expanded to a pan India base. And now we have about some 600 members across various groups with diverse interests, and what country what began with bipolar disorder, as the core issue that we will be discussing, has now expanded to, generally all mental health conditions, so it is not limited to bipolar disorder anymore. But also because of the branding, which has happened over the years, primarily, the people driven to our community remain those with bipolar disorder, bipolar disorder.
Vijay
Yeah. And, by the way, now, community, what was founded in 2013. So we will be completing our ninth year now in May. And our organization is in the process of being registered as a charitable trust. So we will be a nonprofit with the recognition to you know, scale up our activities, increase of outreach to our community, as well. And in that direction, let me add something here.
Bipolar India in August 2020, has launched an initiative, which is path breaking, breaking in its approach. It’s a separate division of its in a totally different direction, which is focused on livelihoods for persons with mental illness. Okay, I think this is something which is very relevant, when you compare India in the US where India doesn’t have the social support that structure that US offers, when it comes to like financial sustenance of a person and extended to families, of course.
Nikhil
Let’s walk together. Is that what that is, or that’s something else?
Vijay
It’s known as letswalktogether.org. And we have been very fortunate to elicit the support of the finest minds in India from the mental health and policy space. And organizations also, right Ramallah Health Foundation Center for Mental Health Law and Policy and minority to begin with, yeah.
Nikhil
Are you partnering with any organizations and other countries? Or is it primarily just focused in India? And are there any plans maybe down the road to sort of extend this beyond the borders of India?
Vijay
Well, shortly in the future, we will be looking at expanding, you’re expanding our ways to, because I don’t think mental health is limited to boundaries of region or nation at all. I mean, there is so much overlap happening in this sphere, we would be looking at joining hands with organizations in other places, and other nations as well. For instance, we did have an informal tie up with The Minds Foundation, which is based again in the US, and UK, it has got a base.
Nikhil
Are you familiar with NAMI? That’s another one that’s big in the US. Are you familiar with NAMI? The National Alliance?
Vijay
Very much so, yeah.
Nikhil
Yeah. No, I bring that up. Because, as we talked about earlier, I think the cultural implications are so strong with mental illness, and I think it would be very helpful for people who are suffering from it, loved ones, to understand what the approach is in different countries to understand the learnings, the failings and adapt because there’s so many things especially and I always go back to with India, there’s so much in the culture about meditation and mindfulness,
Pranayam, you talk about nutrition, Ayurvedic,… Can you touch on a little bit of that, like in terms of your practice? Because I think you had mentioned some of the things that I just talked about.
But the other thing we were talking about earlier was, it’s almost like with maintaining your mental health, it’s like, they talk about a well-balanced diet, right? You can’t just do meditate, you can’t just do meditation, you can’t just do talk therapy. Can you talk a little bit about your idea of what a “well-balanced mental health diet” would be to help with your recovery and for others.
Vijay
Prior to that, let me touch upon also the holistic approach that I adopted to because I think you are aware that I have lived with critical and very, very severe asthma, life threatening on seven locations, right. So I’ve been admitted to intensive care in you know, near death kind of situations that severe.
And so my holistic approach actually stems from my need for recovery from asthma. It much preceded bipolar disorder. And when since we’re talking about that, I’m touching about some other points. But asthma was first diagnosed with food at age 14, and bipolar disorder was diagnosed at 40. Whereas onset was very much at the similar time for him. Yeah, so this glaring example of how physical health gets attained.
Nikhil
Physical health was prioritized and mental health was deprioritized.
Vijay
Although we have drifted from the point, but so it started from there, because my health get kept on getting worse and worse, and a lot of doctors had written me off as a a case of no return, there was no hope for me, until I found a phenomenal Dr. and Dr. Nick Parker. And his mantra is something that you know, and we’ll never forget that you have to come to me in a critical phase, but I’ll ensure that I’ll at least bring you to a state of stability within the next year or so. And he said, what he said to me was very powerful. My meds are not going to heal you. What will heal you is your discipline.
Nikhil
Hmm, absolutely. Yeah.
Vijay
And he’s taught, that is where my journey with yoga exercise, diet, discipline, brand I am, all these things were began way back then a little bit, this would have been, I think, 30 years back, let’s go back 30 years, right. And so the initial part of discipline wasn’t anything to do with bipolar disorder, it began as a template for recovery from asthma.
Within six months for us very severe stage, I was a miraculous turnaround case. And which astonished even my doctor, it’s great. So when I was down in the dumps with bipolar disorder, in fact, this became my sort of straw to latch on to, and this, this was something, which gave me hope, if I could come out of that mess, which I have as knows, and at that particular point of time, it was like a hopeless situation for me. And if I could recover from there, and live a full life in physical terms, what was stopping me from doing that for bipolar disorder as well? Yeah.
So I continue doing my Pranayam sessions in order to in fact, my typical day is like 45. In the mornings, it begins with 45 minutes of Pranayam and other stretching exercises, then a 45 minutes to one hour of a workout. And then I add into my day, right, yeah.
And then you came up to that diet part, which is something which is so important as well, and which is very rarely addressed here. Super important. You bring it up here, Nikhil. So sure, diet plays a very important rule. And again, I had the advantage because for asthma, there are a lot of knows for me, you know that something’s right, you will be aware about those things. So I had consulted a certified nutritionist and a diet was customized after my blood reports were sought. You know, it was the day sort of all my medical comorbidities were taken into account and then the diet was designed for me.
So essentially is not too complex, not too fancy. Because of my varied conditions, there are some vitamin deficiencies which need supplementation for sure. That is going in Omega three supplements. And by the way, I’m a vegetarian. My only indulgence is eggs. Because my spiritual beliefs, I’m a vegetarian. So that also leads to a little bit of imbalance in the nutrients in the body.
Nikhil
Have you been a lifelong vegetarian? Or is that something that, you adopted later?
Vijay
I switched to being a vegetarian in 2008.
Nikhil
Okay, okay. Did you notice that helped the health issues, or nothing dramatic?
Vijay
No, no, I would, I wouldn’t say that is that was for my own sort of convictions spiritual, the moral conduct ethical conviction, also about cruelty to animals. less to do with on health grounds. Yeah. Okay.
So self made choice, you can see, that wasn’t something that was at least to me, but what I do is I ensure that my macros are balanced, the right component of protein, fat, carbs, veggies going in, supplemented by eggs for the protein and so on. So, so for the last decade, my weight is the same weight I’m at my ideal BMI, ideal BMI. Because there is so much of complaining happening around bipolar medications, leading to weight gain or whatever, right? Yeah. But I feel we can’t deny that right. Many of the medications do cause these kinds of issues. But if provided we lean in put in that effort, there is a possibility to overcome those kinds of innovations.
Nikhil
Yeah, so can we step back a little I want to talk, we touched on it a little bit, but I want to dive in a little bit more. What is your view of mental health in India? Currently, and you know, since you were diagnosed, because I think we had talked earlier about how when you were younger, there was more of an emphasis on curing spiritual imbalances, as opposed to really delving into the crux of the issue with mental health.
Can you tell me a little bit about actually, maybe even going back further to back when you were first had your manic episode, which was when you’re 14, or when you you know, throughout that time, if you could tell me sort of how the state of mental health in India has evolved over time? And where do you see it going?
Vijay
Well, definitely, awareness has risen dramatically. I mean, if I trace my journey, back to my, what it was 45 years back, when the first symptoms came up to what it is today, there is a dramatic change, there’s no question about it. There is what has changed massively, whoever helped bring about change massively is the internet, I believe, that provides access to information to anybody looking for it, right?
So you just Google upsetting symptoms, and then you come to come across some complex terms, and then you try to investigate further, and then you realize that what you need to do is to go to a psychiatrist or a clinical psychologist, so on, right, yeah, that wasn’t happening when I had my symptoms first. So you can imagine the difference the internet itself, not, right? Yeah, for sure. You are you are in the dark about anything, you just go to search and to sort of try to find a solution for it. Or you raise a question in some community or the other way of which you are a part of right. Second thing is conversations are happening in a culture that is not safe. Right?
Again, social media and the Internet has allowed that to happen, right? Because conventional media mass media doesn’t really encourage voices from the common man sort of voices to come into, right. So celebrities suffering with bipolar disorder or depression or something, they’ll splash. The headlines will be splashed all over the place. But people like you and me don’t make the headlines right. So this is what also has changed. Social media has made access to information allowed us to hold conversations to like minded people to access communities, which can support us that is a big change. Third thing is which has happened is somehow there is a gradual shift. Even mass media is taking up realizing that they have a role of your role.
The role of responsibility to create the necessary awareness, and to see a glimmer of hope also coming in there in at least in some of the quality publications and media platform. Yes. Right. So that is a chain that I see. And one of the most obvious signs and which is an encouraging sign is like people you like, what do you and I were diagnosed a full two decades and more later, right in my case. So what I see there are many youngsters coming into our community with early diagnosis. So I think that is the most stark sort of indicator that illnesses are being spotted at, at a much earlier juncture. And so the gap between onset and diagnosis is narrowing down.
Nikhil
I love what you’re bringing up about social media. I’ve talked to a lot of mental health professionals on these types of podcasts and videos. And you know, with social media, it’s always painted with a broad brush as that it has a disruptive impact. Or that technology because everyone is stuck on their phones, they’re either doing scrolling, or they’re looking at TikTok. But I think it’s really important to hear your perspective, because having gone through these mental health challenges in, I guess you could call them “the dark ages” of India during the 70s. You said, Right, I mean, going through that kind of struggle, when there is no access to information has got to create so much anxiety and so much, it just compounds the issue, right.
And so I think it’s really important for people to remember that they have this wealth of information at their fingertips. And it’s just a matter of using it anything done in excess is bad, but anything done in moderation can have myriad benefits. And so I think it’s really important, and I really appreciate you emphasizing the taking that glass half full perspective on technology and seeing is how it can be an enabler as opposed to a force of destructive force.
So, and I think that’s people, like people, like yourself need to sort of take advantage of that.
I’m going more so with the discussion about India. Do you feel that legislation, there’s more legislation that’s coming out, that’s helping move forward the case for mental health in India? And what is the government in general is doing to support to support that development?
Vijay
I would say in no uncertain terms, whatever is whatever the government is doing, whether it is the central government, or the state governments who are in charge of health at the local level, it is maybe 1% of what is necessary. Let’s not mince words. Right, right. Right. I mean, the size of the problem is an elephant and you’re treating an end, right? This is the, the mismatch happening it let’s I can’t be no starker than that.
Firstly, the priority in our resource hungry country where we have lack of resources is always physical health issues. For instance, the pandemic came in. So we saw a flurry of resources going towards vaccination funding, and so on, right hospitalization expenses, and all that. So that is always at the top priority level because that’s that immediate emergency. Everybody can visible right there and they don’t have any choice. The government’s are forced to act upon it. This is the slow burning fire, which has been sort of been there in existence, people know it is there, but nobody’s doing anything about it. Right. Right. So that is the agonizing part. So what is being done about mental health in India is a fraction of what needs to be done? Yeah.
So that is one thing. You mentioned about the laws in place, which empower us, right. So we had the good fortune of having excellent legislation in the form of the Mental Health Care Act 2017. Yeah. It’s a radically empowering act. And look, it’s a based on a rights based approach, which puts the person with mental illness at the center of policymaking. Yeah. So everything is designed with the person with mental illness in the center of keeping that person at the center of decision making process. Yeah, and revolving the entire policy around that.
Now, again, the sad part is, despite having such a phenomenal act in place, which empowers us to multiple levels. Yeah, demanding access call access to quality health care, mental health care, irrespective of where I stay, irrespective of my socio economic background, access to health insurance, for instance, which, in India, mental illness is not covered by health insurance companies, right.
Nikhil
Are you saying that mental health issue, any mental health therapies are entirely out of pocket? They’re not covered at all?
Vijay
Yes, absolutely. That’s absolutely out of pocket. So although there have been legislations, and subsequent to the act, now, there is a no net litigation pending in the Supreme Court on this very matter, implementations lacking in this case, so 90% of the people, persons with mental illness would not be getting insurance reimburses for their claims. So that is a second glaring flaw. So, I mean, I can go endlessly about this.
But the Act has got so much happening in favor of families also, because ultimately, the person with the illness is supported by the state, it takes a load of burden from the families, isn’t it when that’s not happening, secondly, we have the rights with no rights for persons with disabilities act 2016. That is also empowering. And that also covers mental illness because that is also a psychosocial disability, isn’t it? Similarly, that act also brings in a lot of empowerment for us. concessions in higher education for persons with severe disabilities, including mental health conditions, job put us in the government sector and PSU public sector company, companies in India, and so on. But still, again, there is so much more, which could be done in those respects.
Nikhil
Yeah. Do you feel like the stigma stigmatization of mental health is getting better with time I think because of efforts of your you know, yourself bipolar and youth? Or do you feel that stigmatization is still a pretty big problem, where people with mental health are sort of regarded as “other?”
Vijay
I would say they couldn’t see what happens is, awareness touches upon only one aspect about mental health and stigma. What awareness does is brings the problems to the fore, does it change perceptions, that is what is critical and feel, right stigma is, I think, totally connected to what are the perceptions, right?
The stereotypes around mental illness, right? Sure. This guy is loony. This guy is undependable. This guy’s crazy, he’s violent, right? Are these stereotypes which come to your mind when you look at mental illness or what? So just being aware of mental illness is not going to solve the problem, I feel right. So, what we have seen is a shift, know from a lack of you called it very appropriately the dark era, to the Dark Ages, to you know, to a space of some degree of awareness, but that is not translating to sensitization. Sure, the next step from awareness needs to be sensitization.
So because then that makes it a human experience so although you are aware about a condition, how are you going to relate to a person who’s living with this condition? How are you going to engage with the language we use? For instance? Yeah, how important is it? Which, right? Yeah, for sure. So so till this date, media, mass media, the way things are depicted in popular Bollywood cinema, for instance. They are very derogatory to persons with mental illness disrespectful, and they perpetuate the stereotypes around mental illness.
In general, water, the way people react to mental illness, I don’t think the shift has been dramatic enough to say that the stigma is vanished into thin air. And I’m connected to people all over the globe. We’re living with conditions and heading organizations. And I guess it’s a bit of the same some everywhere else. Question of the level of decrease isn’t it? Yeah, it will be a little bit more in one kind of country, it will be a little bit lesser in some other country. We still haven’t reached a level where mental health is easily mental health conditions are easily accepted in society. Yeah.
Nikhil
I mean, it’s interesting, because you mentioned about movies. I’d like to understand a little bit better because Bollywood obviously plays such an outsized impact on Indian culture people that film stars are regarded as gods really. But in the US—and that’s something that Shelly my wife and I are working on this book and a movie about sort of telling our story, just so that there’s less stigma, especially for our demographic. I’d like to understand a little bit more about how Bollywood and the film industry entertainment industry in general in India—how have they been handling portrayals of mental health? Do you feel that it’s, how do you feel that’s evolved? Is it gotten better or worse? Or is it about the same in terms of negative portrayals of mental health?
Vijay
that would be the exceptions who are making diligent efforts to to come across authentic portrayals, but that they remain exceptions, by enlarge popular cinema, and that is what is gets carried across to the millions of Indians. Yeah. And that is where the communication needs to be sensitized, not to the people who are already at a higher degree of awareness, right, make it. So there, there is no improvement at all. In fact, he thinks things are horribly out of place.
And the level of kind of derogatory portrayals that happen in the cinema are to be seen to be believed, for instance, a person with schizophrenia, I mean, his entire criminal background or a violent background would be attributed to his illness, without any disclaimer, or anything in the movie. So at any stage, to point out that this is not the typical sort of symptom that they envision. So that’s just one example. I’m citing, right? Yeah. Given the sort of the behavioral patterns are all exaggerated in the, you know movies that are like caricatures, basically, any picture.
Vijay
It will come across as a very dangerous perspective about what people with mental illness are, that if I am a person living with Bipolar, I’m somebody who needs to be feared. So you can imagine the damage it does, right? Sure. Sure. So this is not the awareness that we want for sure.
Nikhil
Yeah. No, because that’s what Shelly and I were wondering, what kind of reception would our book and movie get in India, because of just how far India has to go. In terms of their attitudes towards mental health, like you talked about just it seems like, there’s still a lot of ignorance, there’s still a lot of negative carryover opinions and views that need to be addressed, I think in a big way.
And that’s obviously what you guys are doing with Bipolar India.
Nikhil
Can you talk a little bit more about some of the folks you mentioned, like Mr. Bhatnagar. Can you talk a little bit more about some other folks that your other folks that you’re working with in this arena that you know, or that you’re aligning with to help affect change? And also, some organizations? I think I saw this great interview you did with the Sambandh Foundation. And then I think there’s White Swan, maybe if you could talk about people and organizations that you feel have really helped the cause?
Vijay
Sure. Sure. In fact, I have been mentored throughout my journey with bipolar. And before I go to the people who are currently collaborating with me, I mentioned about Puneet Bhatnagar. And right in the US, in Rochester, I had a fantastic mentor in Jennifer Sertl. She was a coach to me, and a strategy designer for me, in a crucial part of my journey when bipolar India was in its nascent stage, when I was constructing the story for my book, so she helped me create my world from afresh at that short of time.
Dr. Amit Nagpal was my branding and storytelling coach. He’s been a stellar support for me in the initial phase of my journey. And now when we are sort of firmly established in the mental health space in the outreach domain, I’ve been fortunate to be supported by stalwarts such as Amrit Bakhshy-ji. He was one of the finest mental health activists in India that you would ever come across; an 80 year old with the energy of a teenager. Right? Yeah. And who has been in this field for decades and done remarkable work.
Dr. Soumitra Pathare of CMHLP The Center for Mental Health Law and Policy were discussed earlier. They are supporting us in our livelihoods initiative, Nikhil. He was instrumental in the drafting of the Mental Health Care Act, one of the persons in you know framing of that act.
Priti Sridhar, who is the Chief Executive Officer of Mariwala Health Initiative, the largest funding organization for mental health nonprofits in India and several others.
Tasneem Raja of Tata Trusts: she heads the mental health vertical there. So Puneet Bhatnagar, I have already spoken about.
Tanya Dutt, of AtmaNirbhar, Chennai was started an initiative for livelihoods in her own small way. It is not a nonprofit, it’s our own family funded initiative by creating retail stores space, employing such people.
So it’s a whole gamut of support that we have been receiving. Mona Sharma recently has been very supportive as to us. Dr. Anita Rego who is a psychiatric social worker.
Nikhil
Are there any organizations that you guys are either working with, or that you feel are helping to further the cause?
Vijay
Yeah, sure. Yeah. So sure. So Mariwala Health Initiative, who we are connected with. Priti Sridhar has a massive background earlier prior to joining Mariwala Health Initiative in the HR domain, right. So it is very much relevant to shaping our policies in the field of livelihoods, because when we approached the corporate sector, what are their expectations?
So it is a two way sort of dialogue happening, right. She’s been instrumental in that respect. And as such, she’s been a massive supporter of everything I do and Bipolar India does. Similarly, Dr. Soumitra Pathare and his team has been helping us in designing disability support guidelines for organizations that is a work in progress at the moment. So, we will be creating a guideline for any corporate willing to sort of adapt this procedures in their workplaces to their based on theme of what is reasonable accommodations for persons with mental health conditions, right.
So, if I have a mobility problem, I will need some sort of an adjustment to be done at my workplace, right? What happens is in the mental health domain? There is no such method because of lack of visibility of the problem, there is no investment currently, at least in India, I’m not aware of the situation overseas, but there is no such clearly defined atmosphere at the work environment at the workplace.
So these are the kinds of policies CMHLP is helping us frame up and present to organizations, we have some of the finest mentors from within our community who are part of the organizing leadership team. We believe charity begins at home, and that we need to empower our own community first. So more from load experience background, and I happen to have stellar, successful backgrounds in their own career domains.
Nikhil
That’s so important to have mentors and positive people that you know, you can look to and like yourself included, who can have healthy, happy, productive lives despite managing this illness. So it’s, that’s, that’s so vitally important. Definitely.
Nikhil
What’s next for you for Bipolar India? Where do you see this going from here?
Vijay
Once our organization is formalized as a charitable trust, which is so important in getting things orderly, getting the credibility that the organization structure brings, it brings along with it, because at the moment, technically, it is a one man led organization support were supported by many without any formal structure to it, right. So that will be the first step that should be happening in the next month or so. And the completion of that process.
And then we have got very clear objectives in mind, for how we want to approach things, how to bring about a change in the mental health space, the deficiencies that we see in the system, not just lean on the government, but how we ourselves can take the lead in bringing about change, right.
So, therefore, we thought that livelihoods was one issue, which is going to be something that we just cannot wish away. Yeah, right. Because one has to also realize something like bipolar disorder or many of the other mental health conditions. Typically the onset happens at the age of 18 or 20 or 25, or whatever, and then it can be either lifelong or it will be up to the age of 50 or 60. It will depend on each person’s individual recovery journey.
So, unless there is support at that crucial productive cycle of an individual, it robs the individual of the opportunity to assimilate in society. Nikhil. Right. And there is a converse side of it. It’s not only about the financial need, being engaged productively, you would agree, would be a big contributor, contributor to the person’s mental health.
Nikhil
Have the same purpose for living want something to do, right.
Vijay
Yeah, the sense of self worth being active quicker the structure that work brings along all these things. Right. So there is research that backs it, that people who are already engaged productively, despite their conditions were so much better than those who are who do not get such opportunities at workplace. Right. So that is one initiative.
The other aspect of that we would definitely want to touch upon is my own journey has been based on a holistic approach to healing Nikhil. And we want to ensure that anybody wanting to pursue that path gets all the kind of resources at a reasonable cost or possible at zero cost when that there is no feasibility to pay the fees. Right? That happens at certain times. So, for instance, we have a panelist with us from the yoga domain, who is an expert there. We have a panelist coming in Rome. She’s a gold medalist in nutrition.
Yeah. And has got a lot of expertise in how mental health and nutrition are interlinked. Right. Yeah. So yeah. So bring in all these elements, and to ensure that lives of people become a little bit smoother than they are today. So and, of course, doing a lot of advocacy to ensure that we keep talking about the policies are there but implementation isn’t happening, I think we take hold us need to sort of put in the maximum effort to get to ensure that this is done. Yeah. Because at the end of the day, they affect these, the lack of implementation affects us more than anybody else.
Nikhil
Yeah, yeah, definitely. Oh, that’s, that’s, that’s incredible. What you’re doing very, very heartening.
Nikhil
But yeah, that’s. Is there anything else you want to cover for the audience that we haven’t touched
Vijay
I think when we feel we are down and out, sometimes there is a message of hope coming across from somewhere, that is what we hang on to.
So if you are going through a mental health crisis at this moment, or you know, somebody in your family or your immediate friends who are struggling, more times than not there is a way out of it. Right? All you need to do is seek help from a good competent psychiatrist, a good therapist, seek and seeking out communities like help also help it’s very beneficial. Let me add that, I think this is something you need to highlight.
Incidentally, just you know, connecting the dots there, again, my most stable phase in my journey has been after bipolar India has been formed. So my interaction with my community has been not only been fulfilling at a psychological level, but it has helped me health wise also that is another role which community plays.
So ensure that wherever you are in the world, you have access to peer support communities like we do we offer seek help from them formally, informally. And now with the Internet smashing boundaries, you can connect with any person anywhere in the world, isn’t it?
So you’re not alone. Right, do not, because mental health conditions do make us feel very, very lonely at times.
Vijay
So I would just like to end this with by saying this Nikhil. When I was a 14 year old, I felt absolutely awful. alone, absolutely in the dark, not having the foggiest of idea of what was happening to me.
Today, we have the opportunity to connect with the outside world we are, there’s no need to feel that you’re absolutely alone in your struggle. If you are in a deep state of mental health struggle, or you know somebody who’s going through this phase at the moment, be it in your family or in your immediate friends, remember that it is possible to overcome mental health conditions, no matter how severe they seem, at that point of time. With the due diligence, one can recover from these conditions, most of the cases.
And now, there is a lot of help available to us in the form of peer support communities, just like we offer to our community. And the internet is smashing boundaries. So you can reach out to cross country. If your local area doesn’t give you support, you can reach out to some other community which can lend you support.
And I would just like to add how important the role of community is, when it is led by peers when the lived experience comes together, stories resonate, it creates a powerful force. One stellar example is: Bipolar India was founded in 2013. It really found its feet in, say around 2015. Since then, that has been the most stable phase of my life. So if people feel I’ve given a lot to the community, I received a lot as well.
So the community has nurtured me to this extent, and I believe that it has played a huge role in my recovery as well. So I’m thankful to the people who are part of the whole community they make it happen. It’s not a word just me as an individual. Right? Yeah.
Nikhil
Absolutely. Absolutely. Well, thanks so much. Vijay was it was amazing talking to you. And I really appreciate all you’ve done and I would like to add, if there’s any way how can people get a hold of you? And if they are interested in learning more, and maybe getting involved with Bipolar India and the work you’re doing?
Vijay
Well, the Contact Us form on bipolar India, that is the easiest way of getting in touch with me. And I guess that’s how we connected as well. If I’m not mistaken.
Nikhil
Yeah. beauty of the internet.
Vijay
Yeah. So bipolarindia.com is our URL. And on that will be shortly updating the information of all our other initiatives linked to the parent entity.
Letswalktogether.org and so on, so forth. So but from there on, you will get all the other information related to me, the organization and how to join our community. Also, if you wish to be a part of the peer support groups that we run,
Nikhil
Perfect. Okay. Thanks so much, Vijay. This was a great pleasure talking to you.