Divya (name changed) was a successful 40-year-old HR professional from Bengaluru till such time as she lost her mother to a heart attack, suddenly, a few years ago. She herself was hospitalised a couple of weeks later, reason unknown. It was left to a psychiatrist to identify that she was suffering from depression. She was advised medication and grief counselling which she continues to this day.

‘Accepting that I had depression was not easy. Anxiety attacks compounded the problem. I went through denial before I could finally accept that what I dealing with was an ailment which needed attention – something which could not, and should not be brushed under the carpet,’ says Divya today.

What worked for her was the love and support of her cousin’s family and trusted friends. This was despite others, especially from the older generations, sending periodic advice her way which usually included statements such as ‘Be strong’, ‘There is nothing wrong with you. Buck up’, ‘We have also lost a loved one. But we did not behave this way’, and so on.

Divya has been lucky, unlike her friend, a senior manager in an IT Firm, who is on the brink of a burnout, and who has been having panic attacks for a couple of years now. The young man has not been able to speak with his manager for fear of losing his position in the company or maybe his job too if he were to state that he is dealing with a mental health challenge.

Cases such as Divya’s or her friend’s are all too common in our cities today and if we do not hear of them as often as we should, it is because of two reasons: One, most people are not sensitised enough and two, individuals grappling with mental health issues are constantly trying, as Divya puts it, ‘to brush it under the carpet,’ thanks to prevailing social prejudice and stigma.   

“One of the most fundamental challenges that exist in the mental health space is the lack of access to knowledge,“ says Mr Manoj Chandran, CEO of White Swan Foundation for Mental Health, a non-profit organization incorporated with the mission ‘to deliver knowledge services on mental health and wellbeing.’

We spoke with him about mental health issues among Indians and associated challenges.

Manoj Chandran, CEO, White Swan Foundation

Q: Who are the people involved in the mental health sphere in our country?

There are many stakeholders in this space.

On one hand you have service providers like psychiatrists, psychologists, counsellors and others. Then you have institutions like NIMHANS and other mental health hospitals. There are various government institutions doing their own work – for example, the government passed the mental health bill in 2016.

There are also various NGOs that are doing a lot of work in the rehabilitation space, while there are many people working in the advocacy space. All this and more has been happening for the past so many decades.

In addition, there are broadly three kinds of people who are very closely involved in the space. First and foremost is the person who has a mental health issue, next is the person who is a caregiver to the first category of people and the third is the rest of the population – those who have neither had an issue ever nor have been a caregiver. People in all three categories must make decisions all the time on mental health.

Q: How is that…could you explain?

Let us suppose I have a mental health issue.  Once I become aware of the fact, I have to make a decision on whether I should speak about it to somebody or keep it to myself, what decisions I should take, and what my actions should be in this regard.

If I am a caregiver, I have to make certain decisions regarding what my next set of actions should be regarding the person under my care, including whether or not I should seek medical help.

As for the third category of people – the rest of us – interestingly, we are usually taking decisions all the time.  For example, if I have a colleague at my workplace and I find out that he has a certain mental health problem – say depression, what should my reaction be?

Should I mention this fact about him to others in the team, or to my senior? Should I give him less work or something that is not very stressful? Should I give him a few days off at the cost of work? Should I exclude the person socially, or should I accept him?

These and many other decisions have to be taken by the rest of us, who fall in the third category.

Q: Where does White Swan Foundation come in? What does it do?

It is seen that in most cases, the decisions to be taken by each of the three categories of people are not information-backed. One can even say that these decisions are usually not ‘informed decisions’ since there has been no adequate knowledge repository created for them in a formal manner.  

Most data available is largely technical – there is nothing created for the common man. The general public cannot be expected to dig up and read technical facts, psychological or psychiatric, and understand what they mean.

We at White Swan Foundation saw a need for an institutional effort in creating and disseminating knowledge for common people, so that, at the very least, they know what to do: ‘This is what I have to do’, ‘This is what is the next possible step’, ‘This is what it means to have this problem.’ The Foundation focuses on creating and disseminating such knowledge – regularising knowledge services for mental health and wellbeing.  

We are not service providers. We don’t provide psychology / psychiatry services. Rather, we create as much knowledge as we can. Today, we have perhaps the largest knowledge repository on mental health in India meant for the public. If you go to our website, you will find over 800 articles, videos and interviews on various topics covering the entire spectrum of mental health care. These do not merely talk about the ‘illness’, but also address sociologically relevant issues such as stigma, integration etc.

Referring back to the three categories of stakeholders, our content is not just for the people with mental health challenges and their caregivers, but for the rest of the population also. In fact, the power that the third category of people wields in decision making (in relation to persons with mental health challenge) is very high.

If, there is someone with a mental health issue either at the workplace or among your friends and family, your views as a colleague or the views of the general public on the issue will be an important decision making factor for the said person to decide on whether to open up, speak about it, seek help or merely bottle it up.

If all of us in the office space have a positive attitude towards people with mental health challenges, we can encourage them to come out and seek help, speak about it, or get necessary help. In short, get them to do whatever may be necessary for their well-being. Thus all of us need to have as much knowledge as the person having the mental health issue, and his/her immediate caregivers.

Q: So, is there a specific way to imbibe such knowledge, a modus operandi, so to say?

By building a unique knowledge repository on mental health for the people, developing outreach programmes for different communities, and launching innovative public engagement programs, White Swan Foundation aims to transform the way decisions on mental health are made.

We started our activities in 2014 by saying that we have to create awareness about mental health issues through dissemination of knowledge. To this end, we began putting up the knowledge we had on the portal in small and easy-to-read articles with some videos too. These are available not only in English but in 5 Indian languages too – Kannada, Tamil, Malayalam, Bangla and Hindi.

Soon, we realised that it was not enough for us to just create and publish our content on a website or a portal. By doing only this, we were expecting people to come to us. While a huge amount of information on mental health was being made available by us, we saw that people came to the website only when they felt the need to pick up some knowledge in this area. In most cases, that would be a person with a mental health challenge or a caregiver.

We realized that a large percentage of the population was not even aware of the need to acquire the right knowledge before they started making decisions related to mental healthcare.That is what gave rise to our second programme called ‘Community Outreach’.

Under this function, we reach out to various communities and offer them the knowledge we have created through a range of dissemination platforms. We go to college students, college teachers, school teachers, ASHA workers, Anganwadi workers, employees at workplaces… whichever community we can reach out to, interact with them, and work with them in the language they can understand so that they know what mental health issues are and what the possible actions could be.

Then there is this large population, who have never had a mental health issue and are not caregivers. But they are the most powerful stakeholders of the mental healthcare system and we need to include them in our attempt to educate people. This thought gave birth to our third function Mass Communications, where we conduct several people engagement and mass communication campaigns.

Through our Moving Minds platform, we conduct public events like story telling sessions, musical evenings, Yakshagana performances and other programmes that spread the message about the importance of mental wellbeing.

This year, we launched a unique people’s movement on mental health education. Called Mission 10K, it aims to reach out to ten thousand people in the city and hold conversations with them on mental health. The objective is to help them become self-aware of their beliefs and attitudes regarding mental illness and enable them to acquire the right knowledge. To this end, we have so far trained 227 volunteers as mental health champions who have since reached out to around 6,000 people over a period of three months. We are now receiving interests from other cities to launch Mission 10K.

Q: What, according to you, are some of the most common ailments people in our cities are dealing with today in the area of mental health?

I am not the right person to answer this as I am not a practitioner of mental health. Only psychiatrists or psychologists can give you details / information in this regard. For us at White Swan Foundation, every illness is to be addressed. People must have sufficient information to make the right decisions for every illness. It could be a seemingly simple problem as anxiety and social distress, or serious mental health issues like schizophrenia and bipolar disorder.

Q: What are the challenges that people can face in the area of mental health?

There is a wide range of mental illnesses — from common mental health disorders (such as depression, anxiety, OCD) to severe mental health disorders (psychosis, bipolar, schizophrenia). Each of these throws up a unique set of challenges. Therefore, people with mental illnesses, and their caregivers too, experience several challenges that are based on the kind of illness the former experience.

However, in our discussions with people who have had experience of mental illness, the bigger challenges faced are largely social and cultural. These range from social exclusion, stigma, denial of rights to victimization and violence. It’s such kind of challenges that are extremely difficult to deal with and what they feel most helpless about. These social challenges translate into denial or delay in access to services.

We need to prioritize and address these challenges, because they can be easily resolved with people’s participation.

Q: When you talk about delay or denial of access to services, do you mean that social challenges could hamper the affected person’s chance of receiving necessary treatment?

Do you know that nearly 90% of those with mental illnesses will never reach out to a mental health professional? Yes, they will never receive treatment. They will not be able to recover.  

The unfortunate truth about India is that access to service providers, psychiatrists and psychologists is limited mostly to big cities, and a few mofussil towns at best, if at all. Given this lack of availability and access, most of us do not even think of going to anybody. Instead, we think of healers and people with no relevant knowledge and training.

Secondly, the time between the onset of symptoms and the first eventual consultation with a mental health professional is excruciatingly long. It is commonly believed that the time before one actually reaches out to a psychiatrist, psychologist or service provider could sometimes be as long as 5 to 6 years at times. Imagine, (for) any other illness – even a common problem such as malaria – if we were willing to wait for 6 years before we begin to seek help, how catastrophic would that be!

Source: White Swan Foundation

Q: Is there any message that you would like to give to each of the three categories of people you mentioned earlier?

I will address the third category of people first as I have already mentioned that they are the most important when it comes to decision making. The point I want to make to them is this: if we have a view of mental health in general, and a certain attitude towards people with mental health issues, we are automatically a key stakeholder in the mental health care system. Period. There is no argument on that.  

This being the case, it would help to have an inclusive attitude towards people in Category One (those with mental health challenges) and a supportive one towards those in Category Two (caregivers).

Since you are a stakeholder of the mental health care system, it is important that you have the right knowledge. Ask yourself the question: Are my beliefs (on mental health issues) and attitude, backed by accurate and complete information?

If you don’t have that information to back your belief, it is important for you to seek the correct knowledge and go through the exercise of unlearning and relearning what mental health is about. That will change your attitude towards people with mental health issues. At White Swan Foundation, this is the key expectation we have from society.

As for those with mental illnesses and their caregivers, once again, acquiring right knowledge can be transformative for one’s decision-making capability. It also provides the much-needed confidence to fight the numerous social challenges they face regularly.

Q: Do you see us — society in general — reaching that state in today’s fast paced life? Have you seen incidents where companies have started thinking about employees rather than just the bottom-line?

We undertake a lot of community outreach programmes. We sit down with members of the community – it could be college students, teachers and others. We help them unlearn and relearn. We have had people coming and telling us things like, “Oh, now I know I could have helped in that particular scenario.”

We have had instances when, even as we were conducting an orientation session, some students in the classroom would get up, take their professor aside and say, ‘I think in my class I have a friend who has this problem. I want to help her. What can I do?’

Workplaces are increasingly become a crucial ecosystem for mental healthcare. We need to provide safe and inclusive spaces for those with mental illness. This is not just about providing access to services but also creating a culture of empathy, inclusion and support. Leaders at workplaces should encourage open discussions about mental illness and train employees to become an ally to those colleagues who suffer from mental illness.

It’s magical to see how right knowledge brings out empathic behaviour towards our peers. It gives us the confidence that by helping people acquire the right knowledge, we can create a world where everyone is a mental health ally.

[Disclosure: Deepa Vaishnavi is a volunteer with White Swan Foundation in their Mission 10K programme.]