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During the lockdown, we’re all confined to our homes, with the news and media being the only thing that keeps us company. However, recent developments have highlighted the responsibility that rests on our media when it comes to covering sensitive or taboo topics, such as mental health.

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Valerie- Welcome to LonePack Conversations! I’m Valerie.

Today, we have with us Tanmoy Goswami. He works at ‘The Correspondent’ as a Sanity Correspondent. He worked in business journalism across India before pivoting to writing about the global mental-health movement. He regularly speaks on the media’s role in suicide prevention and aims to help shape a world where talking about mental illness is no longer taboo, but is recognized as a human condition that connects us all.  

Welcome, Tanmoy.

Tanmoy- Hi, Valerie. Thank you, thank you for inviting me.

Valerie- Thank you for being here with us today to talk about something very important. 

Tanmoy- Yeah, I look forward to the conversation.

Valerie- So, your journey advocating for and writing about mental health stems from your own personal experience battling depression and anxiety disorders. You’ve also written about your experience with suicidal thoughts. Could you tell us a little bit more about your personal journey with mental health issues?

Tanmoy- Sure, sure. Thank you for asking me that question.

Before I launch into my story, I think it’s always useful to issue a trigger warning. In case anything that we talk about triggers anybody, please feel free to switch off, and do seek professional help in case you are struggling with mental health problems. There are online resources available. If you reach out to me on Twitter, I can also help you find them. 

Right, yes. Like Valerie said, my journey into mental health journalism is very much a result of my personal experiences with depression and anxiety and self-harm for almost my entire adult life. I think my first diagnosis was when I was in college, I think my first or second year of college, when somebody dragged me to the college therapist. Back then, we had this system in Delhi University, I think all colleges were required to host a therapist on campus. I was very very fortunate that we had an excellent therapist in college and I was becoming increasingly dysfunctional, I think. 

Dysfunctional not in the sense of lagging behind in studies or anything like that. I was a very good student, I was very active in college clubs and societies, and I was in the company of some really really smart, intelligent and wonderful people. But I was becoming dysfunctional in my personal life. I was becoming extremely unmindful, inattentive, accident-prone and of course, I was hurting myself regularly. A friend of mine noticed this. There was a distinct change in my physical appearance and I was all over the place. I know that these are all very very common stereotypes that are associated with mental illness, so it’s not my intention to perpetuate those stereotypes, I’m just communicating what my inner experience was back then. So, I went and saw this therapist and I really used to enjoy talking to him because we mostly used to discuss literature and art and movies, and it didn’t really feel like somebody was trying to analyse me and you know, find out whether I have a mental illness. 

But after about five or six sessions, I was told that I am depressed. I have depression. And this came as a very big jolt because I’m talking about twenty years ago, when these conversations were not only uncommon but there was a humongous stigma attached to it. So, I think when he said that I have depression, I was quite dumb-founded because for me, I didn’t even know what to make of the word ‘depression’. I remember thinking that depression is a weather condition. And although I sort of vaguely knew that there is an illness called depression, you always tend to think that things like this happen to other people, they can never happen to you. And so although the signs were always there and my mother was a nurse- I grew up in a medically literate environment and I still couldn’t digest the fact that at nineteen or eighteen, somebody was telling me that I have depression. 

He told me that I might have to start medicating myself and at that point, I just stopped going to him because I got really frightened. I just didn’t want to take medication. I thought if my parents got to know, they would think that their son is going mad, and they might take me out of college because my parents live in a small town in Bengal. So, that’s when I aborted therapy. After that, my condition, I think, worsened. I was really really struggling. But it was difficult for other people, even my family members or my close friends to really get a sense that things were getting worse because I was fairly high functioning even back then. My grades were very good and I was active.

And so, I think the next many many years of my life, I started working, I’ve lived in every major Indian city, and I think for many many years, I just did not pay attention to this although my problems were always there. I would always be very prone to frequent crying bouts and a lot of physical manifestations- random palpitations and panic attacks. These things, now in hindsight, I know were all symptoms and then you know, I got married and I had a child. And just as we were expecting our child about three and a half years ago, my symptoms turned really bad. 

At that time I was a very senior editor in the Indian diction of one of the World’s most respected magazines, and I quit my job. I quit my job because I was unable to perform even the simplest of day to day activities. I had a virtual breakdown, I was mostly confined to my room, crying, and just did not have the energy to get out of bed to even brush my teeth. I think it was a particularly difficult time because we were expecting a child and it’s the last thing you want to experience when you are anticipating fatherhood. 

So yeah, but thankfully I managed to go see a doctor, one of the best psychiatrists in the country, Dr. Alok Sarin, and I was under his care for a long time. With his help and I went back to therapy, I’m still under therapy. I attend therapy twice a week and take medication everyday, and so my symptoms are well under control. Then last year, this wonderful chapter in my life began when I ended my long stick with business journalism and I became the World’s first Sanity Correspondent, writing about mental health for ‘The Correspondent’, which is headquartered in Amsterdam.

So, yeah. My life has completely revolved around these conditions and they have been shaped by these conditions and I think I’m enormously privileged that the net impact of these experiences in my life has been positive. I’m here, I’m talking to you. So, yeah.

Valerie- I think it’s really wonderful, you know, that you’ve been through so much and you’ve taken that and you’ve turned it into something so positive. You’ve started writing about mental health and you’ve started writing about mental issues, and you put up tweets about your own experiences so that people going through that can connect to it and can possibly get the help that they need. I think that’s wonderful.

Tanmoy- Yeah, I started a thread on Twitter in 2017 and I thought maybe I’d just do this for a few months but I did not have intentions of doing it for three years. To be honest, it’s not like I did this to help other people. I did that to primarily help myself because for me, writing was very very therapeutic. And the thing about depression is that it really messes with your memory. Among many other things that it does, it can also mess with the processing of day to day things that happen in your life. And I realized that one of the ways in which I can really counter-attack, if I may use that word, is by refusing to forget.

I want to remember who I was before this happened to me. I want to remember what this illness made me into and I want to document all of this. I don’t want to live in a state where five years later, I’m left wondering “Hey, what happened to me during that period? I don’t remember”. So, I started it as a very selfish process of documenting and remembering and then along the way, of course, back then or even now, it’s not like I have millions of followers on Twitter, no. I have a small little Twitter family but over the years I was amazed by the feedback that I got. 

Even before Twitter, I had written two or three posts on LinkedIn, which is the last place that you would expect somebody to write about their depression and suicidal thoughts or whatever but those posts were published on the India homepage and they went viral, and I started getting messages from people in the US, Australia, from all over India and it hit me that even in 2017-18, there’s just so much loneliness and so much desperation in people to somehow communicate and to somehow be understood. And I think when somebody else confides their worst secrets in you, you feel emboldened to also trust them with your secrets. 

So, I didn’t ask for it. I didn’t do it for any sort of altruistic motivation back then. Of course, now I see communicating as a responsibility because I’m also professionally writing about it. All the mentors or allies or kindred spirits that I have met in the mental health ecosystem, have all been mostly because of Twitter. Eighty percent of those people are people I’ve never met in my real life. I mean it’s not as though Twitter isn’t a part of my real life but it’s as a matter of speaking. So, yeah. It’s really been something. 

Valerie- Yeah.

So, you’ve worked in the field of journalism and you’ve talked extensively about the role media plays when it comes to suicide prevention. From what I see, although things may have become a little bit better in the recent past, there’s still a lot of stigma that surrounds suicide. A lot of cases are not talked about or reported, and cases in which they are reported, you can see a major lack of sensitivity when people are talking about it. It’s often described as a crime that has been committed and it’s termed “disgraceful”. It’s called a matter of shame. Even the family and friends, they’re not given their own space to grieve but you can just see them being ambushed and harassed. So, what do you have to say about this?

Tanmoy- Yeah, absolutely. I wish I could paint a rosy picture of things and you’re right, things have improved. I’ve also recently written about exactly how things have improved, primarily because now a lot of people who have no affiliation with the mental health space or with suicide prevention, even they have become very aware of these sensitivities and they’re calling out the media whenever they see a bad report on TV or in digital. They’re calling out these platforms and demanding better standards. 

But that said, I agree with you that by and large, I think the treatment of suicide in the media continues to be very disgraceful. I think the first thing that we need to remember is that there is this myth that all suicides are mental illness related, which is not true. In India, in about fifty percent of suicides, there’s a history of mental illness. The other fifty percent are caused by something else altogether. These could be stressors in your personal life. In the case of farmers, it could be debt. In the case of students, it could be exam results. 

And so, this mischaracterization of all suicides as the outcome of mental illness, that is the worst or the most damaging fallouts of the way the media handles suicide because there is always this insinuation that if somebody dies by suicide, that they were depressed. And what that does is that it basically tells people that if you are depressed then suicide is a legitimate means to get out of that sandwich. So it legitimizes suicide. It legitimizes self harm, which is dangerous. It can trigger a lot of vulnerable people.

The second thing, as you mentioned, is association of suicide with crime. This is an old shameful legacy because suicide was indeed a crime according to the penal code and it continues to be a crime in many countries. In India, it has been recently decriminalized. As a direct consequence of that history, you see the phrasing “committing suicide” being used all the time because you commit crimes and so you’ve committed suicide. There are still a lot of people, although a few of us are constantly trying to educate people on social media through training workshops. I am now part of this regular workshop that we conduct for journalists. We’ve already done two, we’re going to do the third very shortly. 

We still see that among editors and reporters of a certain vintage, there is a lot of resistance. They don’t understand why it is a problem. They feel like this is some sort of censorship, that over enthusiastic activists are trying to muzzle their freedom of speech. We keep telling them that that is not true of all. There is a tonne of evidence and scientific research that proves how media reports on suicide have a very significant impact on suicidal behavior. Especially celebrity suicides. 

So, when Marilyn Monroe died by suicide in the ‘60s, in the following month, there was a massive spike in suicides in the US. When Robin Williams died, the same thing happened again. So, time and again it has been proven that media reporting on celebrity suicide has a very big impact on what is called “imitative suicides” or “copycat suicides”. There’s a very famous case study from Vienna- there was a string of suicides in the subway system of Vienna and when the newspaper editor sat down with the subway company and decided that they would no longer report on suicides, there was almost a magical decrease in the instances of suicides since. So, there is so much evidence that the way media reports suicide has a direct bearing on suicides. According to some researchers, there could be a variation of as much as one to two percent, which is you know, tens of thousands of lives that we’re perpetually talking about. 

So, these are the facts and figures with which we’ve been trying to appeal to media journalists through workshops, in which I am also a part- that this is not a crime. This is a public health issue. As far as the privacy and dignity of the family and the bereaved, I think it should just be common sense. We don’t really have to throw a rule book at people to make them respect those boundaries, right? But unfortunately because we are in an age where traffic and clicks and TRP are supreme, every incremental little development- what color clothing the person was wearing before they died, what did they browse before they died, etc. All these things and constantly heckling family members. We don’t really stop and ask ourselves “What public interest are we really serving?” by disclosing so many details, so much information that serves no other purpose than to just speculate.

Having said that, I would like to end this answer on a positive note by saying that I see a lot of new things to be optimistic. In the general public, there is a much much greater entry now that has been paved towards these issues. More vigilance always results in greater accountability. We have seen many major newspapers and TV channels coming on Twitter and apologizing and saying that they understand that this is a problem and that they will do better, which is unprecedented. I think we are making small improvements but there’s still a long way to go.

Valerie- Yeah. So, following up on what you just said, recently, what we’ve seen is that when it comes to reporting such news, there are a lot of disturbing images and videos that have been widely circulated on social media and they’re even splashed on the national news. So, what kind of guidelines and ethics should media houses and public figures keep in mind while reporting/discussing suicide? 

Tanmoy- You know, it’s actually very simple. The World Health Organization has published very detailed guidelines on suicide reporting in India. It essentially boils down to just a few things- don’t disclose the method of suicide in the headline or in the story, don’t detail the method. Don’t present suicide as a legitimate means to escape from a difficult life situation. Don’t speculate too many personal details. Don’t disclose where the person lived and what they did. Sometimes you see that the person is not named but every other  detail about their life is disclosed and so it’s very easy for people to just join the dots and know whom you’re talking about. 

This point about not speculating about mental illness, that is hugely important because like I said, if the media keep attributing all suicides to mental illness, what essentially happens apart from passing on a very distorted image of mental illnesses per say because it’s not like every person with a mental illness dies by suicide, but apart from that, there is a deleterious impact that is had which is that it completely takes away accountability from society, from the government, from administrations because a lot of psycho-social problems are a direct result of failing socio-economic support systems. For instance, farmer distress. Many of these suicides are the result of debt, the result of some system failing the farmers somewhere and we say that “Oh, this is just the result of psychological distress”, it’s an oversimplification and it allows those who are responsible to make these systems work, escape responsibility and accountability. 

So I think these are some very very simple guidelines. You don’t have to go into excruciating detail of what happened before and what happened after. I mean this whole culture of creating a story out of suicides and presenting it like a very sensational.. And another thing that they say is a good practice, is to talk about, if you’re talking about a celebrity suicide, talk about the impact that that person had through his work. Talk about the positive legacy that the person has lived with. Celebrate that person’s life. Don’t sensationalise their death, you know? So, these are some of the standard guidelines. I can share the WHO guidelines with anybody who pings w=me on Twitter.

Valerie- Alright, thank you for elaborating on this for us. So, we’ve seen that the pandemic that we’re in currently and other recent events,  they’ve seen an increased rate in the number of suicides, and also the rate at which people are showing symptoms of depression has almost doubled. What are your thoughts on this?

Tanmoy- Yes, of course psychological distress is on the rise, which is commonsensical, right? We’re living through an extremely stressful period and like I keep telling my mother, it would be surprising if you did not feel some amount of distress. So, I think it’s very important to normalize that feeling of distress. Every feeling of distress is not necessarily depression. Depression, as it is understood clinically, is an accumulation of a certain set of symptoms over a certain period of time. Something like a global pandemic is of course going to make all of us feel a little bit on edge. And so I think we need to nuance this conversation by making that point upfront. 

After that, what I have to say is that mental health is such an intersectional issue. Everything about your life has a bearing on your mental health. Your case identity, your gender identity, your employment, your sexuality, how society treats you as a person. All of that has a bearing. What we’re seeing during the pandemic also, if you look at which communities are struggling with a disproportionate burden of psychological distress, these are your traditionally disenfranchised, marginalized communities. So, these are the Blacks, Asians and ethnic minorities in Britain, African-Americans in the US, in India the poorest of the poor. We’ve all seen the shocking scenes involving our workers in our states. So, the most gut wrenching toll of the pandemic has really been on those communities that are anyway vulnerable, and the pandemic has once again exposed these deep social inequalities.

 It should come as no surprise to anybody that at a time where the global economy is on its knees and jobs are being shed at a frightening rate, that these are the communities that are bearing the worst brunt of the pandemic. Whether it is in terms of mortality, once again, minorities in the US and UK are at a heightened risk of dying from COVID-19, naturally there is greater anxiety in those communities and because mental illnesses often have comorbidities with other problems like diabetes, etc. That also makes people very vulnerable, which are the communities that are traditionally ignored or neglected by healthcare systems, which are the communities that are traditionally ignored by formal employment, which are the communities that are generally left to their own means? These are the communities and so it’s no surprise that they are suffering the most, even during the pandemic.

Valerie- Yeah. I liked what you said because we are in unprecedented times, so normalizing the feeling of distress is something that can help us get through this time. I mean, when you talk about adjusting to the normal, I guess this is also something that comes under those things.

Tanmoy- Yeah, absolutely! I mean, I think it’s important for all of us to take a step back and pat ourselves on the back because it’s really a miracle that we’re all still functioning. I think we don’t give ourselves enough credit for the fact that we’re still talking, we still have podcasts and webinars and we’re still being productive. Of course, there’s that race for productivity and picking up new skills and new hobbies, as if this lockdown is some kind of an extended vacation, which it isn’t. 

I don’t want to glorify the whole work from home situation because for so many people, being at home is not at all a safe experience because there is so much domestic violence and many other stressors. I think given all of that, I think humanity has tried its best to hold it all together during this period and I think we really need to commend ourselves for that. And it’s completely alright. Like I said, it would be shocking if we didn’t all feel a bit off-kilter from time to time. So, yeah.

Valerie- So finally, I would like to ask you- what can we, as individuals, do to help during this situation of uncertainty because it’s definitely a time which has proven to take an amplified toll on our mental health. So, what can we do to help?

Tanmoy- I’d say first, we need to help ourselves to begin with. To allow ourselves to feel raw and vulnerable from time to time, articulated with people that you trust. Talk to people that you trust. When it comes to other people and how we can help other people, that’s a very complicated question because right now, because of physical distancing, etc., we are not really able to sort of physically be there with a lot of people. But simple things, I think, really validating other people’s experiences. Not questioning what anybody is going through or not spreading what is called ‘positive toxicity’, which is this posturing that everything is going to be alright and that everything is going to be fine. 

Yes, in all likelihood we look at this a year later and maybe laugh, if we are privileged enough. But for the time being, it’s important to not make people feel like they’re making a big deal out of nothing by saying things like “Look, there is so much misery in the World, what do you have to complain about? Cheer up, snap out of it, be happy”. I think we should banish this kind of language from our vocabulary. That would be a real favour we’d be doing to our family and friends. I think anybody who is feeling distressed, mirror their distress, validate it and say it’s alright to feel distressed. Ask them what you can to help. Don’t assume that they need your help, don’t lecture them on how they should live their lives, don’t make it about yourselves, when somebody comes to you asking for help.

Just validate, legitimize the feeling that we’re all feeling and generally just be compassionate and be there. Emotionally make yourself available as much as you can, without completely burning yourself out. Because this is a marathon, we’re in for a long grind, this is not a hundred meter race. So I think all of us just need to conserve our energies, prioritize, focus on the right things and just be compassionate.

Valerie- I think that was very wonderfully put. To help ourselves first and think about our needs, and when it comes to other people, to validate experiences. Not to assume but to just be there for other people, and understand and at least tell them that what we’re going through is okay as opposed to what you called positive toxicity. I thought that was wonderful. Yeah, so thank you so much for having this conversation with us today because it’s truly been an eye opener on a lot of fronts for me and I’m sure it will be for our listeners as well. There was so much that I got to learn from you so thank you!

Tanmoy- Thank you. Thank you, Valerie. It was wonderful talking to you. All the best.

People with lived experiences of mental health issues work hard towards managing their everyday lives, coping with symptoms, and more significantly, dealing with stigma. It’s inspiring to see how people use that experience, believe in themselves and work towards making a difference, which in turn empowers others around them.

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Valerie- Welcome to LonePack Conversations! I’m Valerie

Today, we have with us Charlene Sunkel, founder and CEO of the Global Mental Health Peer Network. She was diagnosed with Schizophrenia in 1991 and her journey since then has exposed her to various challenges experienced by people with mental disorders, within and outside of the mental health sector. This encouraged her to commit herself to fighting the cause for mental health and human rights. She has actively been involved in the field of mental health advocacy and awareness. She has also written and produced theatre plays and a short feature film on mental disorders to raise public awareness. 

Welcome, Charlene

Charlene- Thank you very much for having me to talk about this important topic.

Valerie- Yes! So, in the introduction, I said that you were diagnosed with Schizophrenia in 1991 which was a time when this illness was probably not widely known or talked about. Your initial journey would have exposed you to several challenges around mental and physical health. What was it like to realize and combat these challenges?

Charlene- Yeah, I think in the 1990s, the level of stigma was extremely high, as you can imagine. I distinctly remember that when I received the diagnosis for Schizophrenia, I was not aware what that word meant. I never heard it before but in actual fact, even broadly, mental health issues or mental health conditions, I had absolutely no knowledge of it. The only thing I kind of knew at the time was that people had nervous breakdowns but I didn’t even quite know what that meant. So, what was difficult for me was that no one explained to be what my diagnosis meant. 

I was just prescribed medication and nobody explained even why I was taking the medication. So, unfortunately, during those days, we didn’t have access, we didn’t have Google or the Internet connection or access to information online. So, I physically had to go to a library to read up on Schizophrenia so I could inform myself because I needed to understand what the link was between Schizophrenia and my experiences or symptoms. Even in a library, I had to do it secretly so that nobody sees I was researching on Schizophrenia because of the enormous shame. 

So, at one point even a psychiatrist told me that I would never be able to work again, live on my own, make decisions, manage my own finances. It was a very daunting prognosis for me and I didn’t see much hope. So for me, if I look back, I think to combat stigma, I think it’s very important that people have access to information, both on an individual or personal level like in terms of your diagnosis, there should be a proper relationship with your treating psychiatrist or treating team and the stigma at that level needs to be broken down so that you are actively involved in your treatment, and at a community level—I think people need to come out more. 

That is why I came out to speak about Schizophrenia, about my experiences, to break it down. I find that that actually helps people to see the human behind the label of Schizophrenia. People had really terrible reactions when I went into advocacy work because I did public awareness, I spoke about my diagnosis and experiences and I often got the same response where people said “But it doesn’t look like you have Schizophrenia”, “Well, it doesn’t sound like you have Schizophrenia”. So then it kind of just showed me the high level of stigma that people don’t accept you as human. So, I think speaking out about it, that was the first step.

Valerie- Yeah, so I liked that access to information was just that important because you needed to go and figure out what it was that was affecting you so that you could know how to deal with it. And the importance of talking about your personal experience so people see the human side to the illness and they look at you differently, right? Not just with stigma.

Charlene- Absolutely. I had really funny reactions. You know, you can sense people’s attitude kind of change towards you when they learn that you have a diagnosis. It’s almost like they’re scared of you and they’re kind of distancing themselves from you and I think it’s helpful when you share, especially when you actually achieve in life, while you have a diagnosis. I think that’s a very difficult thing for people to try and understand, they say “You have Schizophrenia, how can you achieve success in life?”. So, that in itself, being kind of a role model, that helps breaking down stigma.

Valerie- That’s great! So, we know that Schizophrenia affects about 20 million people worldwide. Despite this being a significant number, just as you said, there’s so much stigma associated with the mental illness and that often prevents many people from seeking help and there are challenges that one faces while trying to find effective treatment. Having gone through this personally, how do you view the situation?

Charlene- I think although I must say I do see a kind of reduction in stigma, since I was first diagnosed up to now, I think what I see, where the change is, has been in the media. In the past, the media would either not report on mental health conditions at all or they would sensationalize it. You see, so if someone with Schizophrenia for example, has been involved in a violent act or anything, they sensationalize it and that kind of creates further stigma. It’s the same with movies. You know, portraying Schizophrenia wrongly or as people being violent and aggressive and that they just can’t function properly, I think the media and movies can cause a lot of damage in terms of stigma. So, there are still a lot of myths and misinformation like people are dangerous. 

Funnily enough, when people say that “People with Schizophrenia are dangerous and violent”, it’s funny enough that research shows that people are more prone to be victims of violence than to actually commit violence and that people would rather harm themselves than they would someone else. I think in terms of services also, I think we are progressing in terms of services and access to services now. The more people come out to talk about it, the more we create access. Also with people with less experience, to say that “I need more services and support structures than just medication and hospitalization”. 

So, I think globally we still fought, many countries still fought to kind of have a more person-centered approach to mental health services where you look at the person holistically because stigma in itself is actually more disabling than the symptoms of mental illness and that creates problems in accessing  healthcare and so, actually just to conclude on that question, I would say it’s up to us to speak out and to make people see that we are human and that we have the same health and mental health needs and that we can openly speak about it. I mean, if you look at cancer and HIV, higher stigma was around that years ago and now people are openly speaking about it and I often ask my question “Why is mental health conditions or Schizophrenia, specifically still such a difficult topic to discuss and why is there still so much stigma?”

Valerie- Right. I understand that because people look at it very differently. I think it’s only recently that people started taking mental health problems to be the real deal, you know? Up until then, you’d only look at a physical ailment and you would say “Oh, this is real”. I think perceptions are changing but they’re changing slowly. I did like that you said that you’re supposed to look at a person holistically. You look at them as a person and not relate it to the illness only.

Charlene- Absolutely. Yes, you must see the person because mental health impacts every aspect of your life. If I look at my experience, it had broken my relationships with friends and my family. So, you need something to kind of restore that relationship. I lost my job. There was no service that helped me to retain my job and kind of helped me with reasonable accommodation in the workplace so that I can continue working. Things like that.

Valerie- But that has changed now, right? I mean, people with mental illnesses still keep their jobs?

Charlene- Yes. I think it is starting to change. I think more in developed countries, there are a lot more advancements in terms of that. But I think in low and middle income countries, there’s still stigma attached even though I find, from experience in South Africa, that even though they say mental health conditions are considered a disability so companies should give you employment and opportunities of employment, but with mental health conditions, the stigma is still there. It is very difficult to prove that someone denied you a job opportunity because of your mental health condition because they are not going to come out and say it. There is still that stigma.

Valerie- So you’ve said that “If more people can believe in people with mental health conditions, they can achieve so much more”.  While fighting for the causes we observe and believe in, the road to success certainly wouldn’t have been easy. You just talked about how it’s so difficult for people with mental health conditions to actually become successful because the people around are not supportive and would just search for chances to pull you down. What was it like to overcome this and create the Global Mental Health Peer Network, which is a platform that empowers voices of people with lived experiences of mental illness?

Charlene- Yeah, I think that this whole thing is built on the presumption of a person with Schizophrenia’s inability, or anyone with a mental health condition. There’s so much focus on what you can’t do and just the presumption that you cannot do certain things. The focus should not be so much on the inability. Yes, I do have things that I still can’t do or won’t be able to do as good as I want to but I have a lot of abilities. I think people should focus a lot on the person’s ability and to give that person equal opportunities to achieve and to succeed in whatever they want. I’m not talking about huge things. A person can achieve the smallest thing possible and I think that should be recognized as well and motivate someone to achieve even more. So, I think it’s making people realize their potential. 

That’s what the Peer Network also wants to do, is to create mental health leadership. There are some people with mental health conditions, with unique expertise from their own lived experience and a lot of them are actually professionals in various aspects but just because of their mental illness, they could never really go very far and they got this leadership potential and can do so much. So, the Peer Network aims at developing leadership and looking at those with potential to become global leaders and empower them and so we strengthen the voices of people with lived experiences globally.

I think what’s also important is diversity in strengthening our voices. As you know, countries and even within countries, there’s huge variation and even a huge variation in the level of stigma, the level of specific needs and challenges, and I think those diverse voices, that I believe, can really change the World around mental health and give people that recognition of being a valuable human being.

Valerie- I think it’s wonderful that you talked about the fact that people need to be given equal opportunities to succeed and that you must encourage and validate even the smallest steps towards success, which is eventually what will help them become successful.

Charlene- Absolutely. For example, if I have suffered from some anxiety to go out and socialize, and I really work hard and I actually manage to go out and socialize, that achievement should be recognized as big as someone who got a top job! For that person, that achievement is as huge as that. 

Valerie- Yeah. So what was the reaction like when it came to you starting the Global Mental Health Peer Network? On one hand, you were doing it to empower the voices of people with lived experiences but like we talked about, the entire stigma and people pulling you down and not being supportive, what was that aspect of it like?

Charlene- I think actually starting the Peer Network has been really rewarding. Through the people that we appointed on the executive committee who are now global leaders and especially, most of them are from middle income countries and just to see from them speaking out about their own experiences through the Peer Network, how it has changed the perception of people even in their local community. They are now becoming more involved at a local level. Whether it’s like influencing local policies around mental health or kind of getting the conversation going, locally through media, they just become role models. I think that in itself breaks down the stigma, specifically with them being at leadership positions within the Peer Network. 

Valerie- Yeah. I think it’s wonderful that you just said that because people are willing to speak up about the fact that they’ve had lived experiences has actually shattered stigma in people around their community as well and I think that’s absolutely wonderful.

Charlene- Yes, definitely. I think recovery stories, as you call it, are kind of powerful. Extremely powerful.

Valerie- Yeah. So personally, you’ve talked about your friends being there for you and their ability to often identify a relapse emerging even when you don’t. What role would you say a support system plays in the lives of people battling mental health issues?

Charlene- I think a support system is absolutely critical. I know maybe a lot of the focus of treating mental health conditions is at a more clinical level, if I can put it that way. If you look at the typical example, you get diagnosed, you get put on medication, sometimes you go to hospital. The big problem often lies here, now you’re discharged from hospital, you go back to your community, you get absolutely no support. That in itself, you probably had a revolving door syndrome where someone relapses, that just can’t cope and then they’re back in the system and so goes on. So, that community based support system is, I would even say, is probably the most important part of treatment and recovery of a person with a mental health condition. 

One thing that the Peer Network promotes a lot is peer-to-peer support. I do know that peer-to-peer support is mainly a thing in developed countries and has been for several years and I think it was lacking a bit in lower and middle income families. I know India is doing wonderful work in terms of peer-to-peer support. Even when you look at the research, there are a lot of benefits to peer-to-peer support. I mean there’s outcomes that show the person in much better mental health and general health. They are able to manage their condition better. They don’t feel isolated. They kind of relate to someone else who has also been through the same thing. There’s a reduction in hospitalization. Some even reduce dosages of medication. So the evidence is out there that peer-to-peer support in itself can serve a valuable role and it’s equally beneficial from services received from professionals. 

That was also indicated through research. Unfortunately, we see a lot of peer support groups all over, that seems to be quite common and acceptable but we still need to amplify the benefits of peer-to-peer support where people with lived experiences seek peer support training, so that it can be acknowledged that peer-to-peer support works and is acknowledged as a fundamental discipline in the mental health system, and with in service delivery. In a lot of countries, you do have a multi-disciplinary team that is involved in the person’s treatment or recovery plan. For me, any access like that, peer-to-peer support must be part of that team.

Valerie- Alright. So peer-to-peer support is one of the most important things we’ve talked about, that it helps people not feel isolated but also, you talked about it in the frame of one person with a lived experience talking to somebody else with a lived experience, right?

Charlene- Correct, yes.

Valerie- Supposing you don’t have a lived experience but you if somebody is going through something, how do you be a support system to them?

Charlene- I think we show that kind of peer support, I know people call it “informal” and you have “formal” but informal is just to support someone else going through a difficult time and I think that is just as valuable. For me, if I look at support, the key to that is knowing someone is there for you. You don’t necessarily need their help but just the knowledge of having someone there, that is there for you when you need them, that is just such a key component to mental health security that you can have. 

I think that human connection, for someone else that even if they don’t have a mental health condition, to support someone who does or go through difficult times in terms of mental health, just for that person to really make sure they are there, to listen non-judgmentally. You may not always understand but you acknowledge what the person is saying, acknowledge their feelings and their emotions and give them that secure space to speak out and know that you are there and that they can contact you. You can also play a very important role in facilitating access to services for that person.

Valerie- So talking about letting someone know that you are there for them, if they choose to speak up even if they don’t want to right now, I think that plays an important role especially now, when we are all locked up in our own homes and you might be going through something and you don’t really have somebody to talk to so I think it’s important, as you said, peer support and letting people know that you’re there for them even when they want to talk. 

So, thank you so much for having this conversation with us. It’s been absolutely wonderful listening to you and learning so much from you about how you view a person who’s battling a mental illness and how you look at them holistically, you talk about equal opportunities. There’s so much we got to learn from you today. Thank you so much, Charlene.

Charlene- Thank you very much and all the best with your podcast.

Valerie- Thank you.