Schizophrenia As I Live It (audio)

Embracing Hope and Identity in the Face of Schizophrenia: Elyn Saks, Steve Behnke, and Diana Dirkby

• Diana Dirkby

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Living with schizophrenia isn't a journey walked alone, and the podcast episode, recorded by Bek La, Star Royal, and Monika Caesar for the Ikon Institute in Australia, "Schizophrenia and the Self: Living Beyond Diagnosis," is a testament to that truth. The podcast features myself, Diana Dirkby, a published author with firsthand experience of schizophrenia, not only personally but also through her mother's battles. Alongside her, the distinguished Professor Elyn Saks brings a dual lens of expertise in mental health law and her coping strategies for managing schizophrenia's symptoms. Rounding out our guest list is Elyn's best friend, Steve, who offers an ethical and psychological perspective on mental health practices, adding depth to our understanding of this multifaceted condition.

Our discussion traverses the rocky terrain of stigma, the silent adversary for many battling mental health conditions. Elyn and Diana bravely share their encounters with societal misconceptions and the perseverance it took to seek treatment and thrive. They stress the importance of having robust support systems and healthcare providers who listen and respond with tailored treatments. Their narratives aren't just stories; they are blueprints for hope and a call to action for greater empathy and acceptance of those with mental health challenges across all cultures.

The power of personal autonomy in the treatment of schizophrenia emerges as a theme, underscoring the value of advanced care directives and supported decision-making. Elyn's poignant stories of friendship and acceptance, alongside Diana's insights, illuminate a path forward that includes kindness, respect, and self-care. This episode isn't just an exploration; it's a rallying cry for supporting those with schizophrenia in maintaining hope and discovering coping mechanisms that lead to a fulfilling life. Join us as we celebrate the strength it takes to live beyond a diagnosis and the small acts of kindness that can make a profound difference.

#mentalhealth #mentalhealthmatters #mentalhealthawareness #schizophrenia #schizoaffective #mentalillness #psychosis #depressionsawareness #fictionwriting #family #relationships #nomorestigma #fightthestigmaofmentalillness #letstalk #schizophreniaawareness #mentalillnessrecovery #mentalillnesstreatment #motherdaughter #brainhealth #australia

Pastime With Good Company by King Henry VIII, played by The Chestnut Brass Company 

Pastime With Good Company, composed by King Henry VIII, played by The Chestnut Brass Company

Diana Dirkby:

I like to say that there are as many schizophrenias as there are people with schizophrenia.

Elyn Saks:

When everybody becomes psychotic in her or his own way. My husband likes to say psychosis is not an on-off switch but a dimmer. And at the far end I'll have a psychotic thought like I killed hundreds of thousands of people with my thoughts and I'll be like oh Elyn, pay that no mind, that's just your illness acting up.

Monika:

Welcome to the Iconic Podcast. I'm Monica, I'm Beck, I'm Star. In today's episode, titled Schizophrenia and the Self Living Beyond Diagnosis, we're going to explore a complex topic that often carries a heavy stigma: schizophrenia. But this isn't just about clinical definitions. It's about the people who live with it, their identities, personal narratives, and the incredible resilience they show in their everyday lives.

Bek:

Joining us in this deep exploration are remarkable individuals who have generously allowed us to step into their unique worlds. We'll hear from Diana Dirkby, a published author known for her fictional novel the Overlife, A Tale Of Schizophrenia, a story of a mother and daughter living with the condition we also have the distinguished Professor Elyn Saks.

Star:

She's the Associate Dean and Oren B Evans, professor of Law, psychology, psychiatry and Behavioral Sciences at the University of Southern California Gold Law School. Elyn is an expert in mental health law and a MacArthur Foundation Fellowship winner. She is also the author of her memoir titled the Center Cannot Hold my Journey Through Madness. And finally we have Stephen Behnke, an American Psychologist, ethicist, author and a long-time friend and work associate of Elyn.

Bek:

These remarkable individuals will provide invaluable insights and personal stories, helping us navigate the intricate landscape of schizophrenia and the self.

Monika:

But before we dive into their stories, let's begin with the basics.

Star:

What is schizophrenia? Although the exact roots of schizophrenia remain uncertain, it's believed to arise from a multifaceted interplay of genetic, environmental and neurobiological factors. The term schizophrenia has its origins in Latin, where schizo means split and frenia suggests mind. Traditionally, it was believed to describe a split mind.

Bek:

However, as Ellen and others have pointed out, that description doesn't quite capture the true nature of the disorder. Ellen suggests a more apt metaphor a shattered mind. This concept conveys profound disruption in thinking, perception and self-experience that individuals with schizophrenia often go through.

Monika:

Many of the symptoms and phenomena associated with schizophrenia can be attributed to a disruption in one sense of self. This self disorder arises from abnormalities in the organization of consciousness, ultimately altering an individual's experiential subjectivity.

Star:

According to scholars Louis Sass and Yosef Parnas, schizophrenia is characterized by a deep self disturbance. This includes two central elements hyperreflexivity and a diminished self-affection. Hyperreflexivity is an exaggerated self-consciousness where an individual perceives themselves, or what should be an implicit aspect of themselves, as exceptionally prominent. It blurs the lines between self and non-self and is a central aspect of the schizo-phrenic experience. Self-affection, on the other hand, involves a reduction in one's fundamental self-presence. It's like a fading sense of existing as a vital and self-possessed subject of awareness. This can lead to a sense of detachment or loss or connection with oneself. These phenomenological aspects offer a unique window into the world of schizophrenia, helping us comprehend the internal struggles individuals face in their sense of being in the world.

Monika:

Beyond these facets, clinical diagnosis is crucial. The two main diagnostic frameworks used include the DSM-5 and the ICD-11. These share similarities but also differ. The DSM-5 requires a six-month observation period, while the ICD-11 stipulates at least one month and gathers information from various sources, such as patient reports, observations or informants.

Bek:

Both frameworks offer clinical criteria of symptoms, encompassing positive symptoms like hallucinations, delusions, paranoia, exaggerated or distorted perceptions, beliefs and behaviours. Negative symptoms include affect-flattening, lack of motivation and reduced capacity to experience pleasure. And, lastly, disorganized symptoms involves confused and disordered thinking and speech.

Star:

In this episode, we aim to unravel the multifaceted nature of schizophrenia, shedding light on its intricate layers and, most importantly, celebrating the strength and resilience of those who live beyond the diagnosis. First, we're excited to introduce Diana, who is sharing her lived experience with schizophrenia and providing valuable insights into generational differences through her and her mother's journey.

Diana Dirkby:

When I get sick, the time boundaries disappear, so all of my memories kind of take an equal place. And so what's happened to me, my childhood, for example, will suddenly kind of crop up and assume schizophrenia as I live it, which was the title of my podcast and what I'm saying. That is that it's quite different to the way my mother experienced it. So that was an example for me of two people living with the same. My schizophrenia is much more chaotic. I mean, she had these fixed conspiracy theories which she stuck to and she would basically be paranoid about anybody who didn't agree with her. But in my case it's really a total breakdown of the cognitive ability to understand the world and I never saw my mother experience anything quite that bad.

Monika:

Now let's meet Ellen, who will share her unique perspective on living with the complexities of positive, negative and disorganized symptoms.

Elyn Saks:

My positive symptoms were delusions, like I had killed hundreds of thousands of people with my thoughts and hallucinations. A man standing with a raised knife, disorganized speech. So on the roof of the Yale Law School I said to my classmates are you having the same experience? Before jumping around the pages that I am, we've got a case of the joint. I don't believe in joints, but they do hold your body. So delusions, hallucinations and then negative symptoms.

Elyn Saks:

The first two years, whether along the spectrum, we may have house guests I like people, but I need a lot of them at one time and I may have two or three days going in and out of psychosis and then at the far end I'm crouching in a corner, shaking, thinking. People are going to put daggers through my head and that hasn't happened in a good 10 years, that goodness. So the course has gone in a good direction. I'm hoping that it no longer only very rarely kind of derails my career or my personal life Further along the spectrum, we may have house guests. I like people, but I need a lot of them at one time, and I may have two or three days going in and out of psychosis and then at the far end I'm crouching in a corner, shaking, thinking people are going to put daggers through my head and that hasn't happened in a good 10 years. That goodness. So the course has gone in a good direction.

Bek:

Next we'll explore how the diagnostic journey can either help or hinder the development of a coherent self through personal narratives, agency and autonomy. In Alan's case, her therapist Kaplan identified three distinct identities. She navigated while coming to terms with her diagnosis.

Elyn Saks:

So for a while I fought it, but actually fighting it. So my doctor used to talk about the three elements, not like different personalities but different aspects of myself. So there's Alan, the lady of the medical charts, and the professor, professor Blonde. And it was very hard for me to reconcile with having a lady of the medical charts and I kept fighting against it. But paradoxically, the more I fought it, the more it came front and center and it was when I actually accepted that I had it that it sort of received to the sidelines and Professor Saxon and Alan were able to come forward to actually accepting the illness, you know, made it less powerful.

Monika:

For Diana, her multiple selves went beyond a mere therapeutic metaphor as she navigated her journey with schizophrenia. It's important to note that, while schizophrenia isn't the same as multiple personalities disorder as Diana will explain co-morbidities can indeed play a significant role in shaping one's experience of self.

Diana Dirkby:

I guess about five years ago I had a bad crisis and had to reinvent myself all over again. I almost suffered. So you know, there's this condition called dissociative identity disorder, which is not schizophrenia A split personality is not schizophrenia but probably because of the PTSD from childhood experiences which is kind of going to creep into the next novel I'm writing about. I have a little bit of that in. So I don't want to say that I suffer from dissociative identity disorder, because the main condition I suffer from is schizophrenia, but there's a little bit of it in me.

Diana Dirkby:

So you know, when I was a child I found each time I've had a really, really bad relapse, that rahthat If I try to go back to where I was before, it's just not possible because of the severity of the symptoms.

Diana Dirkby:

So I have kind of learned that I need to not reinvent myself to the point that no one recognizes me, but to do a lot of work to find a point of equilibrium as someone a little bit different. So in the book I refer to it as a plateau. So I look for a plateau where, you know, uncomfortable, I can sit down, I don't have to climb any hills, and I try to work out what bits of me have been destroyed and what bits of me are still there and build from there. But yeah, I mean, ever since I was a kid I've had these multiple identities that I've toyed with, and so there's a great deal of flexibility. That's innate, I think, which helps me now that I realize that once I've had a severe psychotic break, I have to find not the way back to where I was before, but the way forward.

Star:

With each psychotic break from Diana's experience, the loss of self is profound. This illustrates the fragility and malleability of one's sense of self, shedding light on its impact on identity and agency.

Bek:

Discovering the reasons for the extended journey to a diagnosis can be challenging, but it appears that in the case of schizophrenia, the diagnosis is often arrived by ruling out other possibilities. One out of every two individuals living with schizophrenia don't receive the necessary care for this condition.

Diana Dirkby:

I mean, I knew I had psychiatric problems and I was looking for someone who could help. Everybody said, oh, you have PTSD from childhood experiences, which is actually true and you're suffering from depression with psychotic symptoms. And so I was getting this over and over again and getting the wrong medication and getting nowhere. And I was in my early 40s before I got someone to really believe I had paranoid schizophrenia and by that stage I was just so relieved to have someone who agreed with my opinion that it wasn't for me. Oh gosh, what a tragedy I had had paranoid schizophrenia. You know what a relief that I have a doctor who agrees with my assessment, Because I had by then, through reading and comparing with my mother, I had figured it out for myself. And but I think this is a very common mistake that psychiatrists make, that they confuse depression with psychotic symptoms, with schizophrenia. I've heard many, many cases of the same thing.

Bek:

Stability in diagnosis is essential for affirming one's experiences and initiating the path to recovery. A correct diagnosis can provide much needed relief after a prolonged period of uncertainty. However, stigma can obstruct the formation of positive personal narratives, hinder the establishment of agency and impede the integration of identity. Therefore, it is important for us to understand how stigma significantly influences one's relationship with themselves.

Elyn Saks:

Stigma- is supremely important, and it's mostly important because it deters people from getting care. Who might care and benefit from care. Lots of reasons for stigma, one being people want to have outgroups and people within our own sort of convenient outgroup. It's also the case that people think that people with mental health challenges are making a choice to have them and they could stop it, which is just not true. Or also they feel, conversely, that it's their fault and there's something they could do or could have done and they haven't. And then also kind of the way the media portrays people with schizophrenia and other major mental illnesses, the focus on dangerousness and homelessness and stuff like that.

Elyn Saks:

My friend, who is a geriat Basically, when I told her I was writing this book, she said I should do it under a pseudonym. So did I want to become known as quote, to see it's a friend up with a job and I thought, no, that's not how I want it to be known, but it would just send the wrong message. This is just too awful to say out loud to do it under a pseudonym. And after the fact she said no, I was right and she was wrong.

Diana Dirkby:

At the time where I did most of my work, I was living in France and the attitude there is just completely different to the attitude in the United States. People are much more forgiving of eccentric behavior. People could see that I was struggling but I didn't lose any friends and I didn't lose my job over it. They're much more accepting of differences.

Diana Dirkby:

I think a lot of stigma has its origin in insecurity and they don't want to take on a person with those event mental illness, and that's certainly been, unfortunately, the case in my family, my immediate family and my husband's immediate family. That has been the reaction that they you know they've worked hard to have a life that they're really enjoying and the last thing that they want is someone with paranoid schizophrenia turning up on their doorstep to threaten it. And that's not often said, but I think that is a lot of where stigma comes from, because I find with people who are more secure, they're much more prepared to listen to you and to say, yeah, no, I understand you have a severe mental illness, but I also understand that you don't need to be a bother that you just you know you're measuring it because it's part of you and sure it doesn't bother me in the least.

Star:

We can see from listening to Ellen and Diana's experiences how stigma can emerge from a complex system of relationships within the interpersonal, social and cultural context. One of the key aspects of treating schizophrenia is recognizing that each individual's experience with the condition is unique. What works for one person may not necessarily be the best approach for another. One recent systematic review of barriers to treatment seeking in low and middle income countries found that knowledge gaps, beliefs and stigma were barriers to help seeking, while demographics, socioeconomic status and collaboration with traditional healers encouraged it.

Monika:

For Ellen, she discovered three effective pillars of treatment that worked for her.

Elyn Saks:

You know. So I was given a great prognosis, expected to be unable to live independently, run a lot more. And I think there are a couple of reasons that, three reasons that didn't happen. First, excellent treatment, both four or five day a week psychoanalytic therapy and once or twice a week psychotropic medication therapy. Probably I don't literally need all of that, but I enjoy it, it helps me, it doesn't hurt anybody else and I can afford it. So I'm going to do it. And I think one of the reasons that I was able to kind of evade my great well I said treatment relationships are more.

Elyn Saks:

I remember my dad kind of incentivizing me to do well. So I called him from the psych ward and I was very distraught and have a terrible life. I'll never have a career, he says. Ellen, people beat terminal cancer. What you have is nothing compared to that. My first response was he just doesn't get it. And my second response was he's really right. And even recently I've been having some physical medical problems and he's like you know, keep punching, don't give up, you're going to live along and healthy like and make sure that happens. And again does he really understand? But again he's right, I should keep fighting, you know, and so that that's kind of helped help me on my path.

Monika:

For Diana, finding a psychotherapist and psychiatrist was integral to her recovery.

Diana Dirkby:

And you know also, as I mentioned before, the psychotherapy I have once a week is really crucial because I find that, you know, when I start to get uptight about stuff, I just say well, you know, I'm going to push that forward to when I talk with my psychologist. I'm not going to worry about it today, I'm going to just turn it over to her when I speak with her. So the fact that I talk to her once a week it's frequent enough that I can do that. The psychiatrist I see a lot less often because she's mainly worried about the medication, but she's very, very good at balancing. When I have a crisis, you know, taking the medication up those and then, once I feel better, to lower it again so she can put it up again later if I have another crisis.

Diana Dirkby:

And I know that a lot of people with schizophrenia you don't want to take medication and don't want to work with a psychologist because they think they can manage, and that's absolutely fine.

Diana Dirkby:

I mean, everybody has their own unique experience and I know that a lot of people don't have a good experience with the medication. It's inclined to make people obese and other problems. And I just got lucky. I found a medication that agreed with me and didn't make any difference to me from the point of view of the physical difference. But, having said that, I've been very, very much aided by the medication that I get and by the psychotherapy that I get. I mean, I speak to my psychotherapist every Tuesday and I really look forward to those thoughts and I don't know what I do without it. So that's just to say that psychotherapy is very, very powerful in the treatment of schizophrenia because you know rather I know that I have someone I'm going to be able to talk to about what it was worrying me in less than a week, and that's a very powerful feeling Psychotherapist I have now. She listens and she guides my conversation.

Monika:

Building the support you want, in collaboration with the support network in decision-making plans helps to maintain autonomy. The clinical handbook of schizophrenia states that substantial research has shown that patient participation in treatment planning and decision-making processes improves outcomes. It is essential that the treatment plan capture the goals and aspirations of the patient, as well as those of his or her treatment team.

Star:

Ellen emphasizes the importance of having an advanced care directive.

Elyn Saks:

You want to kind of help them be able to make reasonable decisions. So I've got two things I'm working on Empirical studies on supported decision-making and psychiatric advance directives. If you have a psychiatric advance directive, you can build in what support you want. So it's also furthering your autonomy. You know, like you know, if you get sick, where you want to go, where you don't want to go, what meds you want, what meds don't you want, who do you want to be told, who do you not want to be told, and anything else that you want.

Star:

One of the core relationships in Ellen's support network is her longtime friend and colleague, steve, who has been instrumental in supporting Ellen at times of crisis.

Speaker 6:

Ellen and I early on in our relationship, which I think this fall goes back 40 years, Ellen said we sort of reached an agreement that I would always support whatever Ellen asked in terms of treatment. However, if I got to the point where I felt that I would need to contact one of Ellen's treaters, Ellen said to me go ahead and do that. If you feel that you need to do it, go ahead and do it. I've only done that a couple times in the last 40 years, so it hasn't happened very often, but that was sort of the arrangement that we came to pretty early on.

Elyn Saks:

Yeah, and I think autonomy is important, but also well-being is important and it's very important to trust and have trust, and Steve was someone I could trust implicitly.

Bek:

One of the many myths of thought disorders is the belief that meaningful friendships and relationships are unattainable, Although some of the negative symptoms can include social withdrawal. Ellen speaks to two significant relationships in her life.

Elyn Saks:

I think friends give my life a meaning and a depth and they also serve as another set of eyes if I start slipping.

Elyn Saks:

So that's helpful to me and I think relationships are incredibly important and I was fortunate that both Steve my best friend and will and my husband were able to accept that that's who I am and that I might have days when I'm not doing that well.

Elyn Saks:

Actually, the way we all found out was he came we weren't living together at the time, but he came to my condo and he showed me a newspaper article that someone with Asperger's on the autism spectrum said you know, it's a little bit like you. Actually, my doctor thinks I am on the spectrum as well, as happens to be. I basically said no and I told him but I do have a serious condition and I told him what I had, how it made me feel. He basically hugged me and said I still love you. Nothing's going to change that I accept who you are and we'll work on this together. So he was incredibly you know, understanding and supportive. That was really, really important for me and, again, you know I've known Steve since 1983, I've known Kenny since 1973, able to make friendships and keep friendships, which is really important.

Bek:

From listening to Alan's story of cultivating meaningful relationships, there is a palpable sense that Steve's and Will's love and acceptance have been instrumental in how she experiences herself, further nurturing her narrative of self-acceptance and worthiness.

Monika:

Diana goes on to share the importance and the impact of how far a little kindness can go.

Diana Dirkby:

I mean, if someone enters your life and you find that that person has this big mental illness, you're only going to exacerbate their symptoms by panicking and rejecting it. And you know, my advice would be to treat them as you would treat anybody else. You know, and the problem is that once people know you have a severe mental illness, everything is your fault. So in any situation, everything is your fault. Now, my mother went through this in her marriage. You know, everything that went wrong was her fault because she had sub-cantric problems. I've been through this with my family. You know, if there's a family issue and I don't agree, then that's just because I'm crazy. So, you know, I think my main advice is to simply treat them as you would treat anybody else and to listen to them as you would listen to anybody else, but, above all, to be kind.

Speaker 6:

And finally, Steve provides first-hand insights into the profound power of accepting the individual as a whole being we're here talking with Ellen because of her memoir and her work as a person with lived experience of schizophrenia. But that's never how I have experienced Ellen. Ellen's a friend. We've both had difficult times in our life. We've done a lot of work together. We talk pretty much every day. So the fact that Ellen has lived experience with schizophrenia for me does not dominate our relationship. It's not even a particularly big part of it, because there are so many other parts of our relationship. So yes, it's there, but it's in the background. Now there are times when Ellen has gotten ill and experienced her symptoms more acutely, but those times are more acutely few and far between and they pass relatively quickly. So it's a friendship. That's a part of it. It's not a big part of it.

Bek:

These conversations have really highlighted the impacts of schizophrenia on the self and identity. They've highlighted the role of interpersonal support in cultivating agency and autonomy and, most importantly, how honoring our shared humanity through kindness and acceptance can shape one's own self-acceptance and instill seeds of hope to live beyond diagnosis. And as we come to the end of this episode, we'd like to finish on some words of hope from Diana and Alan.

Diana Dirkby:

I think people need to look for relief in simple things and these aren't cures, but they're off a relief and what someone grappling with panoramic schizophrenia needs most of all is some relief and understand that they will get through this. But they have to be patient and it's gonna be slow. So you know, there's no kind of like overnight cure.

Elyn Saks:

Just that there is, there is, you know, maybe discourage, don't give up, keep punching, as my dad says, fighting. So make sure you get yourself good care and make sure you cultivate your relationships, have some kind of occupation, whether it's a job or it's volunteering, or it's in a teaching or whatever. That gives you a sense of productivity and well-being. So you know, the final point is there, there is hope.

Bek:

Thank you so much for joining us on this insightful journey today. We'd like to express our deep gratitude to our guests and to you, our listeners, for your time and attention.

Monika:

Please head to the show notes to find out more about Alan Diana, their books and the work that they do, or if this episode has brought up anything for you.

Star:

And until next time, be kind, stay hopeful and keep punching. Thank you, you, you, you, you, you.