No Need to Explain with the Mental Health Mamas

Mind Your Life with Guest Dr. Luisa Sanz

June 14, 2022 Serena Ward, MLE, MHM, EBE and Tina Hallock, MLE, MHM, EBE Season 2 Episode 40
No Need to Explain with the Mental Health Mamas
Mind Your Life with Guest Dr. Luisa Sanz
Show Notes Transcript

In this week’s episode the Mental Health Mamas are joined by Dr. Luisa Sanz, a psychiatrist with over 25 years of experience as well as a lived experience expert having grown up with two brothers with schizophrenia. Tune in to hear Luisa talk about her experiences growing up with her brothers, the pervasiveness of mental health stigma, and what we need to do as a society to eradicate that stigma.

Visit Dr. Luisa Sanz’ Website: https://www.mindyrlife.com/

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Mental Health Resources:
Suicide Prevention Lifeline: The Lifeline provides 24/7, free and confidential support for people in distress, prevention and crisis resources for you or your loved ones, and best practices for professionals. Visit suicidepreventionlifeline.org for a chat option or call 1-800-273-8255.

Crisis Text Line: Our goal is to help texters move from hot moments to a cool calm. Sometimes, that means we give our texters a resource – like a breathing GIF to help them slow down or a link to finding a support group near them.
Website:
www.crisistextline.org
USA text 741741
Canada text 686868
UK text 85258
Ireland 50808

NAMI HelpLine: The NAMI HelpLine is a free, nationwide peer-support service providing information, resource referrals and support to people living with a mental health conditions, their family members and caregivers, mental health providers and the public. HelpLine staff and volunteers are experienced, well-trained and able to provide guidance.
To contact the NAMI HelpLine, please call 800-950-NAMI (6264), Monday through Friday from 10 a.m. to 6 p.m., ET, or send an email to
info@nami.org.

Substance Abuse and Mental Health Services Administration (SAMHSA) Helpline            SAMHSA’s National Helpline is a free, confidential, treatment referral and information service (in English and Spanish) for individuals and families facing mental and/or substance use disorders. Available 24/7, 365 days a year. 1-800-662-HELP (4357)

Mama’s Comfort Camp: a peer support network where moms of all ages and stages, from around the world (and across the street) lift up each other. Our motto is: Moms don’t need more advice, we need more support. We leverage social media by turning Facebook groups into resilience engines that mobilize kindness, ideas, and resources while dissolving guilt and shame. Our lovingly moderated forums are always on: 24/7/365.
Find us on facebook:
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National Parent Helpline®  Call the National Parent Helpline® to get emotional support from a trained advocate and become empowered and a stronger parent. Available 10:00 a.m. to 7:00 p.m. PT, Monday through Friday. 1-855-427-2736 (4APARENT)



Serena: Hey Everyone, I’m Serena.

Tina: And I’m Tina and we are the Mental Health Mamas.

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Serena: Welcome to No Need to Explain, we are so glad you’re here.

Tina: First, as always, a quick disclaimer.

Serena: We come to you NOT as mental health professionals or experts in the field, but rather as parents with lived experience who are on a mission to normalize the conversation around mental health.

Tina: If you or someone you love is experiencing a mental health crisis, please seek professional support. You’ll find a variety of resources in our show notes and on our website, NoNeedToExplainPodcast.com.

Serena: We talk very openly on our podcast (and in our real lives as well) about the stigma that surrounds mental health and those who struggle with their mental health. Our hope is that if we continue to have these conversations, that it will help others do the same and thus normalize the topic.

Tina: Absolutely. We will continue to fight the stigma through our conversations and through elevating the voices of others who are working toward the same goal.

Serena: So I came across a 2016 study which looked into the stigma of mental disorders and there’s a lot of information there but this particular quote stood out to me, “There is no country, society or culture where people with mental illness have the same societal value as people without a mental illness.”

Tina: Hmm. Today we have a guest who will be sharing about her own experiences, both personally and professionally, around pervasive stigma. Dr. Luisa Sanz is a psychiatrist with over 25 years of experience working mainly with young people. She works to help others through compassion, understanding, acceptance, respect and love. She also brings to her work the lived experience of growing up with her two brothers who were both diagnosed with schizophrenia. Luisa, welcome to the podcast!

Luisa: Hello. Hi. How are you both?

Tina: We are well!

Serena: So glad you are joining us today. So as Tina just mentioned, you bring a great deal of lived experience to the work that you do. Can you share a bit about your upbringing and perhaps your path to becoming a psychiatrist?

Luisa: Yes, of course. It’s a pleasure to do. So I am the sixth of eight brothers and sisters, two boys and six girls. And we were very low income, working class family. I remember my dad working long hours and my mum always being either cooking or washing the clothes or mending clothes. She was forever mending clothes because they needed to be passed on from one sibling to the next. And when I was about seven years old, I remember that my eldest brother, who was about eight years older than me, he started showing the first signs of his illness. And at first we didn’t really know what was going on, what was happening, but he was changing. He was becoming quieter, more withdrawn. And my father was taking these as if it was a challenge to his authority because he, my brother wasn’t doing much. He was just quite consumed in his own illness, what was happening to him. So there were daily fights and you know, shouting, screaming and so that was very difficult and I was only seven then. And then when I was a teenager, perhaps about 16, 17, my other brother started showing signs of schizophrenia but for him, the presentation was very very different and this brother was very guarded. I think both because of his personality but two completely different people. Both because his personality is, he’s a quieter person but also because he had the experience of our older brother and what he’d been going through so probably, probably…this is my guess, my youngest brother was really frightened of suffering with the same condition. So his way of showing his struggles at the beginning was through violence and he was trying to self-medicate with alcohol. And so when we were taking him to the hospital, the doctors there were saying, oh, he’s an alcoholic or he’s got a personality disorder, he’s very violent and he needs to be taken, you know, the police need to be called out and he needs to be taken to prison. So that obviously led to him being misdiagnosed several times and not getting a proper, correct diagnosis until he was in his mid/late twenties. It took almost ten years for him to be properly diagnosed.

So as you can imagine, though my childhood and adolescence, fear was what dominated my life. Fear from what my brothers…both were very violent. And when I say very violent, I mean to the point of setting fire to flats or knives. Knives were always used at home. I remember my mum often saying, quick, quick, quick, go to the kitchen and hide all the knives because the minute, usually my dad was involved…the minute my dad and brothers were in an argument everyone would panic and we would just be terrified. So nothing made sense to me. I just couldn’t understand what was, you know… I always thought my family was very different. I always felt that people knew us and pointed at us and criticized us and judged us, the family. So I needed to make sense. I was a very curious little girl and I was very rational. Everything needed to make sense to me and I decided, being very young, that I would go into medical school and I would specialize in psychiatry and that way I would understand what was happening.

And as I’ve grown up and become older and got closer to my brothers, as their illness had sort of settled, has been better managed, as they have had more support and they’ve been more contained, then I’ve been able to understand that, yes, of course, I lived in fear and so did my sisters. But my brothers, gosh, they were the most fearful of all because they experienced the illness themselves. They didn’t know what was happening to them and they also experienced the stigma most than any of us. So yes. 

And then as I worked as a psychiatrist all my adult life, my experience has been precisely that. That it wasn’t just us, you know, me and my sisters, it wasn’t just my brothers suffering from schizophrenia and suffering the stigma, it’s actually everyone that has mental health problems that really experience this fear on a daily basis. I mean, it’s people around them that don’t know what’s happening, don’t understand it, and that’s the crux of the problem I think and, you know, fear and reject. So yeah, fear is a big…I think is the biggest enemy and the fear comes from poor understanding and that’s what we need to change, I think that’s what we’re here for.

Tina: Yeah, so as we know, mental illness is complex, right? It’s very complex and you know, I think that the experience you had with your brother in the hospital, right, I think it’s easy and I think to kids in school, right? It’s about, what is the behavior that’s presenting right now and not about delving into that. And I think these, kind of, alcohol, drugs, self-medication, even crime, right, the idea that these are just misunderstood. So help us understand, now you did talk about your brothers being violent, but I don’t know that schizophrenia is necessarily, you know, I think what we see, at least in the US, is you know, a lot of TV shows that have very violent people who are mentally ill. Is that…help us understand a little bit more specifically about schizophrenia and this, kind of, link to violence.

Luisa: I think that’s a really good question, Tina. Thank you for asking that. Because you’re absolutely right. There is a link, a wrong link, I should say between mental illness and violence and it comes from that fear.

So if I could just try and clarify. A person with schizophrenia is precisely that, a person with schizophrenia. So what we see is not just the illness, it's not just the schizophrenia, it’s also the person, what the person comes with, their personality traits, their life context. The life context includes their upbringing, the support they had when they were little, when they have the illness, when they present with difficulties. So that’s the context. So as I said, what we see is the schizophrenia and then the schizophrenia can have different levels of severity, it can present with slightly different symptoms. So really there’s a thousand possible combinations as to what we see in a person that presents with schizophrenia. What most people know, maybe not knowing the name or how it’s called, but what most people will know about schizophrenia is the delusions. Delusions is believing something that isn’t real, that isn’t happening. And there are different types of delusions. The most common ones are those paranoid delusions. For example, people with schizophrenia may think that they’re being persecuted, they’re being followed, that they’re going to be killed and those are the paranoid delusions. Or there are delusions of control. For example, the being forced to do things but mind controlled, their mind is being controlled and they’re made to do things or say things or think in a certain way. Or their thoughts are being inserted or withdrawn so that the things that they’re thinking are not really their thoughts, but somebody’s put them in their mind. So those are the delusions.

Then the other very, very common symptom and perhaps even better known is the hallucinations. So the most common hallucinations with schizophrenia are the auditory type, the ones that you hear. And people with schizophrenia often talk about hearing voices, voices in their heads talking and telling them what to do or just talking about stuff aside from their own thoughts and they hear the voices. They often talk about that. But they can also be visual hallucinations. So they see things that aren’t there. For example, my brother Antonio, I remember him talking about seeing my cousin outside our flat in Madrid whereas my cousin lived in America so that was impossible, but he had a delusion about her and therefore the hallucinations were also about her. So the most difficult hallucinations in schizophrenia are the auditory hallucinations, the voices they hear, and sometimes as well, visual are common.

Serena: So Luisa, I’m just gonna ask you a question real quick here about a clarification on the positive symptoms. So, you talked about hallucinations and the most common being the auditory type and, you know, hearing voices in their heads. So my understanding of this is that it’s not, sort of the typical, you know, where we might be thinking in our heads, right? We might have our own voice in our heads. We might have other people we’ve heard before. But this is like a, like a stranger is suddenly talking to us. Is that accurate?

Luisa: You’re absolutely right. Yes. That is perfectly accurate. And to be honest with you, I’m a child and adolescent psychiatrist, schizophrenia is very rarely seen before the age of sixteen, very rarely. And yet I work with young people up to the age of 16/18 normally and many of the young people that come to my clinic will say, you know, I hear voices. But when we explore the voices of these young people that do not have schizophrenia, they’re actually talking about their thoughts. So for example, it’s very common, that when someone has a very low self-esteem, for example or depression even, they’ll be saying, you know, to themselves, you’re useless, you can’t do anything, you’re an embarrassment to everybody, but when you explore it, those are not voices that they hear, they can recognize that they are their own thoughts really but they’re almost saying it to themselves in a punishing way. The voices of schizophrenia, the actual auditory hallucinations are voices that the person, the individual, will say, they’re not my voices, they’re not my thoughts. Somebody’s talking to me or alongside my thoughts and they will describe the voice. It can be from a man, from a woman, an elderly person. So they are clearly voices that they hear and outside their heads as well and have a very different connotation, very different sense to the thoughts.

Yeah, the second part to the question was about violence, wasn’t it? And is it what we see on television, you know, that people tend to think oh he’s crazy that person, that’s why they’re acting in a crazy manner. So the first thing I’ll say is that when I’ve talked about the symptoms of schizophrenia, I’ve not mentioned violence precisely because violence is not a symptom of schizophrenia. At all. Violence is a response to fear and anyone that is fearful can act in a violent manner. And often, in trying to be less fearful, to control that fear, often we exert violence. So, yes, people with schizophrenia can be very fearful and they can be violent as any other person. And this is when again, we come to the stigma about mental health and that the perception of people. You know, people think that people with schizophrenia are violent and that’s why we need to understand schizophrenia, we need to understand mental illness and change the attitude we have towards people with mental illness because again, it’s the attitude of society toward these people with mental health problems that increases their fear, that lead to them being fearful. So really, it’s up to us, we are all society, it’s up to us to change that attitude so we don’t increase the fear, but decrease it, you know, ameliorate it, reduce it.

Serena: Yeah, absolutely. Yeah, I appreciate the explanation. Yeah, so, you’ve talked about this a little bit already, but let’s talk a little more about the stigma you and your family experienced and your brothers because of their mental health issues.

Luisa: Yeah. OK. So, you know, I was saying at the very beginning, my childhood, I remember my childhood as a very sad child and adolescence, very sad time of my life. We lived in a block of flats in the center of Madrid and I remember neighbors calling meetings to discuss how they were going to get us out of the block. I remember attending one of those meetings and I was only in my late teens, maybe 18/19. And I remember a heated discussion amongst the 30 neighbors there about what to do and I had in my mind, I knew what I wanted to say but before I had a chance, one of the neighbors, only one of the thirty stood up and said, you know, what are we doing here? How cruel are we? Instead of asking this family, how can we help? How can we support you? They have a son that is very ill. Isn’t it hard enough for them? So what I’m saying is that 29 of the neighbors were making our life even harder. We always had the experience of some people around that actually were very empathic and supportive. So what I’m saying is that stigma, it is there. There’s a huge percentage of society that doesn’t understand what mental illness is and that stigmatizes mental illness and mental health problems. But there are beautiful people everywhere as well. And I’ve had experiences of both.

Tina: Yeah, I was just gonna say, I love how you’re framing mental illness in the sense that when…society’s reaction to it makes the behaviors worse or perceived as worse, right? So that brings me to…Serena and I both have taken Mental Health First Aid which is…it really helps people understand in ways that support people because people who are struggling can’t necessarily change and again, their behaviors might be made worse by the reaction of society to those, certainly further stigmatizing that. So yeah, I love how you’re framing that. I love it.

Luisa: Yes. There’s no question of a doubt, you know, my experience as a sister, but my experience of 25 years working in psychiatry and there’s absolutely no question of a doubt that it’s the attitude of society. And we are all society again because what I want is for all of us to take responsibility in changing that attitude because sometimes we talk about society as if it was alien to us. We are society and my experience, without a question of a doubt is that it is much more damaging, our attitude, than the illness itself. Without a question of a doubt. That’s why it’s so incredibly important that we understand that and we do something about it because it’s huge. Schizophrenia is not half as bad as the experiences that my brothers had or we had as a consequence, not half as bad. And that’s what we need to change.

My eldest brother, Antonio, he passed away last January at the age of 60. He had lung cancer and at the end he died of COVID. I got really close to him over the last few years, particularly the last few months when he was ill because he spent a lot of time in hospital in bed, ill, in bed in a hospital and being treated for his cancer and whatever else and he was terrified of being on his own. But he was also very psychotic and the hospital wanted the family to be there supporting him, making him feel safer. Anyway, we had lots of beautiful conversations. He once said to me, he said, “Luisa, I’m always judged. People just make assumptions about me on the basis of my illness, they don’t give me a chance. They don’t see me, Antonio. Society just sees us as lazy parasites. We never have a chance to prove any different because that assumption is bigger than ourselves.” And it’s very sad, isn’t it? It’s very sad that that’s how you’re perceived and you can’t do anything about it because society’s bigger than them.

Tina: Yeah. Yeah, so on that note, you talk on your website, there’s a quote that says, “When she spoke to families, all she heard was that they felt frustrated at the lacking services to support them and the absence of empathy and understanding about what they were going through. People with mental health conditions were feeling dismissed, neglected, and judged.”  How can we do better?

Luisa: So what we need to do is quite simple really, we just need to change the attitude that we have towards everyone, starting with ourselves because, again, that’s very important. I often talk about changing the attitude towards people with mental health problems but these attitudes of compassion and care and love starts with ourselves. The attitude needs to be toward ourselves first and then towards others and it needs to be an attitude of acceptance, not judging, not making assumptions and you know, loving and being compassionate. And that’s much easier done when we have a more positive outlook in life and feel grateful for what we have. It’s a big change of attitude but you know, we start bit by bit. Yeah.

Serena: Yeah. So I want to talk about your expanded services and so you’ve created something called, MindYrLife. Tell us about what this is and what you’re offering.

Luisa: Oh, that’s my favorite question of all because I so much love MindYrLife. It’s so incredibly meaningful to me. It’s a joy to tell you about it. So, what’s MindYrLife? MindYrLife is a journey really. It’s a journey and it’s one journey that anyone can join when we’re ready for it. And that happens to each one of us at different times and it’s triggered by different causes. Sometimes it’s triggered by mental illness, sometimes it’s triggered by a crisis, sometimes it’s triggered by the work we do, but it’s triggered at some stage for all of us and ultimately the purpose of it is to find peace and happiness. And in a simple way, MindYrLife, you know, the website that we have is a forum aiming to eradicate the stigma attached to mental health and a forum that provides a safe and supportive environment, a supportive context. MindYrLife in this forum and the website that we have, the way we try to provide these forums through sharing information about sharing mental health illnesses and we do so in podcasts like today talking about schizophrenia. I’ve done others about ADHD. I’ve done others about autism or whatever. But we also do educational videos that we upload on the website. It’s uploaded on YouTube as well. And the educational videos, I do them, I try to do them always in a simple way and they are aiming to people with mental health problems. They’re not aiming to professionals. They’re not aiming to health staff. It’s just aiming to people with mental health problems, to parents of children with mental health problems. The purpose of all this of course is to reduce the stigma, to help reduce the stigma. 

We also have MindYrLife also has another way of reducing the stigma is by sharing experiences of living with mental health problems. I’m sharing today my experience. There are incredible, inspiring interviews that we’ve uploaded in the website as well from people…friends of mine, patients of mine that have beautifully and courageously agreed to me interviewing them and for them to speak about their experiences. There’s an interview of a mum of a young person with autism that talks about her struggles. One, getting the diagnosis for her son and two, managing the challenges, the daily challenges of having a son with severe autism. And another young person that talks about his very difficult struggles with depression and anxiety, suicidal thoughts. So it’s sharing these experiences of mental health problems that again, make us feel we’re all in the same boat, that we all have the same challenges. And we just need to be more open about it to reduce the stigma again. 

We also have different social medias like Instagram, Tik Tok, Facebook and others where we post lots of different stuff. Again, informational videos, inspirational quotes, messages. We direct people to interviews and to other things. And we try to help with some sort of self-help tools. 

So we’ve just launched, last week or the week before, a wellbeing guided journals called, My Journal, My Life. And this is a ten week journal where we try and support people to improve the quality of their lives. So often we want to makes changes and we have beautiful intentions but we don’t get to make those changes. So this journal enables you to make your intentions become acts, become actions. And the journal, the first part of the journal is really giving you lots of evidence, evidence based information about the facts about changes, the way the brain deals with changes, what makes changes more easily achievable, what makes changes being sustainable because it’s very well making changes, but if after a couple of weeks we’ve forgotten about the change and we go back to what we were, we’ve not sustained the change in the long term, where maybe all the effort didn’t bring the benefits that we expected. And I believe that we’re all in the spectrum of mental health qualities, of various…throughout our lives. So being in this spectrum, all of us, or at least almost all of us, it’s only a few people that are not in that spectrum and those are the ones that in my view, they have found the inner peace and therefore the happiness that we all are aiming for and those are the people that inspire us on our journey, this journey of change and this journey of growth and transformation. Because ultimately that is the purpose of MindYrLife. 

We’ve got the most immediate purpose which is to eradicate mental health stigma and that’s a massive ambition but in the longer term is the more ambitious purpose in the journey of transformation, of growth and transformation towards an attitude of love, of acceptance and this change, this transformation is not just about mental health, it’s about anything and everything, whether that is religious beliefs, it’s about sexual differences, it’s about political beliefs, it’s about anything and everything and anyone and everyone, whatever the differences may be because we understand, in MindYrLife, that we’re all different. There’s not two people that are the same in this world, not even identical twins and when we realize we’re all different, we then realize we’re all equal. And it’s when we believe that we’re different that we become fearful. Fear is not just about being scared of things, you know, like I was saying before. Fear is more than that. Fear is worrying. I always explain to my patients when I say, are you anxious? They say, no no, I’m not anxious. Do you worry? Oh yes, I worry a lot. Well, worrying is a form of anxiety and anxiety is a form of fear and it’s the fear, the fear of not belonging or being rejected, of having…fear of not having things or once we get them of losing them. At the end of the day we’re just consumed by fear and that’s a whole other conversation for another day. Again, I really believe that..in my journal that I was talking before about, My Journal, My Life, the quote in the front cover of the journal is a beautiful quote I think. “The day we dare not to fear but to love, happiness will happen.” And I love that quote because I relate so much to it, but of course I’m biased. That’s actually my own quote so it’s going to be my favorite one, no question about that.

Tina: So we will make sure to link to your website and all your social medias in the notes here. So before we let you go, we want to ask you to join us in envisioning a world where there is no mental health stigma. What does that look like and how do we move closer to that?

Luisa: What a beautiful question. That is a beautiful world without a question of a doubt. It’s a world where we’ve come to accept. It’s a world where we are on that journey I’m talking about, we are on a journey of growth and transformation. We’ve come to accept each other as we are. We understand that we’re all different people and therefore there’s no room for any stigma, for any discrimination, for any rejection of any type. In this world we are all the same and you can visualize it. It just fills you with joy, doesn’t it? In this world there’s no inequality and we don’t have anything to fear so there’s no anxiety and there’s no worry because we all have the same and we are all the same and we accept each other as we are so nobody feels rejected, nobody feels that they don’t fit in. And in that world, there’s no room for problems with self-esteem or confidence or self-worth because we’re all the same. And is there’s no problems with self-esteem, confidence or self-worth, there can’t be any problems with anxiety or low mood or depression or anything like that. So what a wonderful world would this be where there’s no such mental health problems and it would be beautiful, wouldn’t it? 

And you say, how do we…if we could reach that world, how do we get closer to that world? How do we achieve that goal? We join in together in this beautiful journey of a changing attitude in society, in this beautiful journey of growth and transformation where we become much more grateful and much more accepting and simply more loving. I’ve got my three…I call them my three great golden gifts and they are gifts when you make them a part of your life, of your daily life. My biggest lesson in life is I know nothing, I know that I don’t know anything and therefore because I don’t know, I don’t judge anyone. And I don’t judge. I just accept people with humbleness. That’s my first golden rule really. I only know that I don’t know. The second one is everything in life and seriously, I mean it, everything has a brighter side. Everything has a brighter side because everything offers an opportunity for something else. So we need to learn to see this. We need to stop feeling sorry for what we lose because when we do that, we lose sight of what we gain and what we gain is a world full of opportunities that are full of love. And the third great golden gift is being grateful. When you’re grateful, you smile and then happiness follows. So when we adopt these behaviors which is a change in attitude which is what we’re talking about, a change in society, the attitude, the growth that we’re aiming for in MindYrLife, when we adopt these three great golden gifts into our lives…the know that you don’t know, that everything has a brighter side and that being grateful, then we become just much happier. Life makes much more sense.

Serena: Mmm. Luisa, thank you. Thank you so much for taking the time to join us today and for envisioning that world with us. We love it! Your vulnerability in sharing your personal story with the world. We think that’s really important too. And we know that the work you are doing is making a difference for all of us.

Luisa: Well, that’s all that matters, isn’t it really? And thank you so much to both of you for having me here today and most importantly for the wonderful work that you do in eradicating stigma and sharing that message. So thanks again.

Tina:  Of course! And so podcast friends, we are, as always, grateful for all of you listening and supporting us. You can help us out by visiting Apple podcasts, leaving us a review, subscribing and please share with others. You will find lots more content on our website NoNeedtoExplainPodcast.com. You will also find us on all the socials, Facebook, Instagram and Twitter and you can connect with us there as well. 

Serena:  And this is your gentle reminder to take good care of yourself while you are also taking care of your people.  

Tina: Thanks so much for listening!

Serena: Bye!

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