Published: 10th October 2020
A fulfilling life is in everyone's reach, mental illness cannot be the barrier: Bipolar India's Vijay Nallawala
As someone who has been living with bipolar disorder all his life, Vijay Nallawala is best positioned to tell us about the condition, how he overcame his mental illness and a lot more
In 2003, at 40 years of age, Vijay Nallawala was diagnosed with bipolar disorder. He had been battling bouts of depression since he was just 14 years old. But, the 58-year-old did not back down even then — he's an author, a mentor and the founder of Bipolar India, an online community for persons with mental health illnesses. We had an elaborate conservation with the man himself about his life, his journey with the disorder and I must say, he definitely brushed off a little positivity on me too.
Excerpts from an extremely knowledgeable conversation:
According to a study published in February 2020 by Lancet Psychiatry, 6.9 per cent Indians are bipolar out of one 197.3 million people which means it's around 70 lakh people which is quite an alarming number. Even after that a lot of people do not know what bipolar disorder is. What would you say are the typical signs of bipolar disorder?
Bipolar disorder is essentially a mood disorder. Everybody experiences fluctuations in the mood even on a day to day basis because of the environment or stressors or some arguments and other things. But the shifts in mood that we are talking about are extreme in nature. The depression phase can be of a very severe kind, it can be a prolonged phase of depression. And on the other hand, is the elevated mood which is also known as hypomania and mania which is a more serious form of elevated mood phase where the sense of self-esteem, bravado, aggressiveness, the self-confidence levels are high without any basis to them. I might have believed I have some superpower for that I can achieve something which is really impossible because these thoughts are delusional in nature and do not have any basis in reality. There is distorted thinking even during a severe phase of depression where the mind tricks you into believing the things which are not true about yourself.
And that hits your sense of self-worth and makes you feel hopeless and helpless. That is why it is known as bipolar disorder, it's one of the more serious mental illnesses said to be incurable, but can be managed with treatment.
You were only 14 years old when you first had a bout of severe depression. How did you feel at that point?
Initially, it just sneaked on me. Awareness back then was very very low. Firstly, we were living in a small village at that time and then we did not have any access to a mental health professional and secondly, I wasn't even aware that I needed help, to begin with. The initial symptoms were very vague like withdrawal from society, keeping to myself or drop in my academic performance because there was a lot of disinterest in anything in life and the sort of symptoms which one can also associate with adolescence. It was only going forward when the depression became more severe I experienced different delusional thoughts at that time. It is then that I realised that there was something seriously wrong with me. However, I did not have any clue what to do about it and that therefore my problems were not addressed. During that phase, I was in Class 10, two years later when I was in college it came back and then subsequently again after several years. I kept experiencing these severe episodes. None of these episodes where ever diagnosed or treated at all I can recall is at one juncture I had visited a physician and he had just prescribed me vitamin B12 supplements. Depression was never identified by anybody at that time.
You weren't properly diagnosed until 40, what were those 26 years in between like?
Thankfully, after 25, when I had already experienced those three serious bouts of depression, there was a period of stability for a while. Now again, this stability was a bit of a different experience because I used to experience a lot of irritability and aggressive behaviour in between. Those were minor signs which could easily be overlooked by anybody and then gradually the symptoms kept on ballooning into something serious until things really got out of hand at age 40 when diagnosis became easier because I was in full-blown mania. It is easiest to identify bipolar disorder when a person is in mania that sort of leads to a concrete diagnosis. So all the years from age 14 to 40, there wasn't even any intervention from a psychologist or a physician for my mental health problems. I was on autopilot until that time and after my diagnosis, my mania had blown up to such an extent that I had to be hospitalised for a week in Mumbai.
I have heard that your sister was a major pillar of support in the initial days. How important is it for a mentally ill person's family to support them?
You can call them caregivers. Whether they are within the family or an external support system, the role of a caregiver for a person with chronic serious mental illnesses, you can't underline their importance more. It was due to my sister's vigilance that we landed up at the psychiatrist. The whole thing began there, it could have been dragged down even further from that stage because the rest of the family did not even notice that there was something really needed attention at all. After that, she was the one who kept ensuring that I was in touch with my psychiatrist for all the appointments, ensuring that I was disciplined in my approach. I cannot thank my sister enough and after that, I settled down and married. So it's my family now that is supporting me, my wife and my daughter. Especially when it comes to bipolar disorder, the issue is when you experience normalcy for a while until they were really stable and recovered what happens is the mind tricks you into various beliefs which are not really true. These beliefs can be very limiting in nature. Is this stability going to last, will I go back into depression or is the productivity I am seeing right now is it due to hypomania etc. It is here where a caregiver can sort of be beside the person and say 'look, things will work out well'. So it's not only during the severe episodes where the caregiver's role is very important. But even in the intervening spaces keep the person motivated and keep reassuring.
Your first book A Bipolar's Journey: From Torment to Fulfilment, it is like an autobiographical account. When did you write this book? You had included a lot of personal experiences and by sharing your own story with the world what did you wish to achieve through this book?
I began writing it in 2013 and I completed by early 2014 and it was published globally in July 2015. I'll tell you the reason why I adopted the story format. There are a lot of books which are in the form of theoretical knowledge about the condition. An inspiring turnaround story would instil hope in the lives of many people. That was the core thought with which I began my book. If this book helps to turn around the life of even a single reader of mine the purpose of this book is been achieved. That was the idea about writing a book with my story as the background and how and what helped me overcome my challenge.
You have emphasised the importance of lifestyle changes like diet, exercise, yoga in your book. Why would you say it is important to adopt a holistic approach to mental illness?
The issue is that we put mental health and physical health into different compartments. There is a deep connection between the two. Mental illness affects physical health, a bipolar disorder affected also lives with a lot of comorbidities. That is one reason and secondly, physical well-being also boosts mental wellbeing. Just the focus on sorting out ones mental issues is a very narrow sort of a perspective. Ultimately the path should be wellness in its complete 360-degree approach rather than only on mental wellness. I know there is a science to back the role of yoga, pranayama, good nutrition, regular sleep cycle and the contributions of these to mental illness. There is proof that it can contribute to stability and recovery from chronic mental health issues. And of course, they can ward off the other co-morbidities.
What is your opinion about medication?
My personal opinion is that there is certainly a case for a holistic approach. There are of a few who just rely on medication and of course, psychotherapy along with it also is a huge contributor in addition to medication. But a holistic approach what it does is, now if I narrate my own example after being put on a cocktail of medications back in 2003 when I was diagnosed, now I am on minimal medication and I am stable and in remission. I think it's not just the medication which has brought me here, but my holistic health approach, which is ensuring that the stability is sustainable. A piece of advice would be to adopt a holistic approach to ensure that the recovery is sustained.
You are also working on a second book. Could you tell us about that a little more?
My first book was more autobiographical in nature. The second book I intend to make it more of a workbook format with the Indian context in mind. There is a lot of material which comes in from the West but from the Indian perspective there isn't much one can read about chronic mental health and how to deal with it. So it would not only talk about bipolar disorder management and the holistic health approach but a lot of support systems that are present in India and the laws on mental health here. The issue is even now psychoeducation is very poor. The problem is one goes to a psychiatrist and 70% to 80% of the cases one is just handed out a prescription and then one is left to face it on their own. Some are not even told what the diagnosis is. Here, Google search can be a two-edged sword. It can take you to the wrong information, so it is very important that somebody has information from a reliable source about the condition, the myths and what is the tried and tested approach of recovering.
You founded Bipolar India in 2013. It has been seven years since then with so what did you have in mind when you first set it up and how far has it come would you say in these past seven years?
Setting up Bipolar India has a tiny story behind it because, in 2012, I took to blogging, one of the blogs was about my personal experience of living with bipolar disorder and that drew a lot of feedback and some trolling and all those things but it did begin conversations. After reading that article, a mentor friend of mine came and met me and he said that there is a lot that we can explore and you know built upon this up from what you have begun. And in fact, he set up the website for me. In May 2013, I set it rolling without thinking about it much. It began with one person writing blogs and articles about the condition and so on and so forth. Now we are a well-knit community of over 400 people. It began as an online forum but for five years we have been conducting support meets on a monthly basis in Mumbai. Persons living with mental health issues as well as caregivers come and meet us. During the lockdown, we continued that movement in online meetings. The next logical step in the process is to formalise the organisation into a non-profit. In fact, the process has already begun for the lockdown has come in as a stumbling block. But again, we need to take it in our stride.
How exactly do you help people or persons with mental illness?
It took one and a half years or two for the ice to break because of the intent stigma around the mental health people were even afraid to respond in forms of comments or feedback. To keep the community on a platform in one single platform where it became a virtual 24/7 sort of a helpline we created a telegram group. What we do is in a crisis situation, we have been able to offer real-time help to these people.
The stigma surrounding mental health has been there forever. So when you were first diagnosed it was more than a decade ago and many Indians had not heard the word bipolar. Do you feel the scenario has changed for the better now?
Certainly. Back in 2003 when I was diagnosed at that time bipolar disorder was known as manic-depressive illness. That is what my psychiatrist told me then. So it came as a bolt from the blue to me. And even when I was in the hospital with all the time in the world to ruminate over my diagnosis the thought that was that I had a mental illness and now I would be labelled as a person living with mental illness and the other part of it was I felt that what I was living with was a very rare condition and I was among the thankful few in India who was living with that. From 2003, what we have seen is a massive change in the level of awareness. So one of the game changers has been the internet, of course, there is so much available out there. Social media has ensured that a lot of voices of coming up and they are was sort of active cause of mental health. More people talking about their experiences online. Earlier there used to be only traditional media platforms one could talk about and they used to sort of cold shoulder with anything related to mental health. But has stigma reduced not sufficiently? I will say the discrimination around mental health is still very evident. It would be much lesser than what it was in 2003 as awareness levels have increased but it's omnipresent and damaging for the person living with the issues. India should think of public service campaigns for mental health disorders to decrease the stigma and eventually increase awareness.
At 58, you are an author, a full-time mentor and a champion voice suggesting the lack of mental health awareness. Do you think everything would have been different or life, in general, would have turned out differently if you had been diagnosed earlier?
Almost certainly. It was also to do with the juncture at which the diagnosis happened. I was past 40 and typically the age 40 to 55 is the most productive phase. The diagnosis crushed to my morale, motivation levels and within that state of mind, I stopped working. Initially, my whole approach and outlook towards all this was that it has stolen the best decade of my life. You know how I perceive that decade of mine now has led to a transformation beyond imagination. It made me a passionate human being, a human being who looked at society as a whole rather than my own set of issues. I don't think I would have been the person I am today without my diagnosis. So there are always two sides of the coin, one can always crib about what could have been, but this is what is there today and I feel I would not like to change anything that happened to me in my life. The challenges have helped shape me made me more resilient and maybe because of this, I was inspired to set up this community.
Your mantra is live a fuller life. What do you mean by that?
When the diagnosis happened, it overwhelmed me, I felt like my life was a black page and I was a tiny dot in it. Bipolar disorder was that black monster swamping me. But today, I'm a white page and this is the tiny dot, which is bipolar disorder somewhere in the corner of that page. It's a massive shift in the perspective that has happened, the reality also changed.
You can't make your mental illness your limitation in life one has to move beyond that and there is no reason a person living with mental health cannot live a life as fulfilling as a regular person. I am as content as anybody else that you will come across. I am financially secure. I have a wonderful family, have excellent relationships. I have something which I passionately pursue, drives me forward in life.
His advice: Mental illness does not define you. It can overwhelm you when you're initially diagnosed when you haven't come to terms with it, but if you are disciplined if you are committed to recovering from it, there's nothing stopping you. Living a full life is within everybody's reach. With or without mental illness, which cannot be the barrier.