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.
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.