Welcome to the Reality Check podcast. Psychosis is Real, so is Recovery.

On this episode, Ashley Weiss and Serena Chaudhry speak with a New Orleans mother about her experience with her son.

Join us for this deeply emotive dive into her personal experience and the challenges of stigma when dealing with severe mental illness.

Subscribe for more episodes of Reality Check, where we uncover the truth behind mental health, one story at a time.

For more information about Clear Answers to Louisiana Mental Health (CALM) and their Early Intervention Psychosis Program (EPIC NOLA), visit the website: www.calmnola.org

Podcast produced by Red Rock Branding – www.redrockbranding.com

Intro

Welcome to the Reality Check, Psychosis is Real, So is Recovery podcast. I'm Dr. Ashley Weiss. I'm a child adolescent psychiatrist. And I'm Serena Chaudhry. I'm a clinical social worker. And we are the co-founders of Epic NOLA, which is an early psychosis intervention clinic in New Orleans, and also the co-founders of CALM, Clear Answers to Louisiana Mental Health.

Hosts

Good afternoon and welcome to Reality Check. It's Serena. And Ashley. And we're here today with the parent of one of our patients and someone who's become an amazing advocate and a good friend, Lou. Hi and welcome. Hi. Thank you for having me. I know. Thank you for taking the time out of your day. I'm happy to. All right. Why don't you start by just telling us a little bit about yourself and how you came to be with us today?

Lou

Well, that's a long story. I'll try to keep it short. My husband and I, we live in New Orleans. We lived in Seattle for about 26 years.

Lou

Lou

Lou

had a gradual onset of something happening. And one reason that I feel so passionate about being an advocate for proper care and early treatment is that we had the best of every situation.

Lou

We had wonderful schools. We had wonderful doctors, wonderful church, wonderful coaches, you name it. And yet at the same time, I don't think anyone really understood what was developing, which blows my mind. Right. I want to pause you there and get a little bit more about maybe why you think that they were not

Lou

understanding what was developing? Like you're kind of looking on the outside while they're looking at him too. And where do you think the like breakdown kind of happened? Or why do you think that? Well, I think adolescence is a time when we expect

Lou

and some unpredictability. And so I think sometimes things can be with high achieving, gifted, intelligent, wonderful young people. I think it can be chalked up apparently to just the way it is. And I also think that...

Lou

that this is a specialty area of medicine. It's even special within the field of psychiatry. So as in other areas of medicine, specialists deal with special things. So even professionals are, and also it's a more recent field of medicine, the discoveries of how to treat patients,

Lou

medicines and all of that is fairly recent. So it's understandable that the world is not up to date on that. Then, of course, it's an area that because we're speaking about behavioral health, you know, we deal with this thing called stigma.

Lou

So I think there's some of that too, and people hope to look the other way and hope to explain it some other way. Right. And it's a confusing mixture when we've got stigma, we've got a lack of understanding, we have high achievement, and we have adolescence, right? It's these competing forces that I think leave providers and families and young people really confused. That's right. Right.

Lou

And anything that can't be seen is tricky. I mean, if we can see, you know, a broken leg, if we can see a test with a blood sugar for diabetes, if we can see someone covered in a rash, that's easier to respond to.

Lou

and know that there's a specific treatment somewhere. We may not know what it is, but we know to go looking for it. I didn't mean to interrupt your story. So now I'm going to take you back to having the most, because this is super important. I think a lot of people assume that those with serious mental illness might not have means, might not have access to the best doctors or the best treatment. And

Ashley

Um, and that's not true because I mean, you know, we always talk about schizophrenia, not discriminating and yes, there are socioeconomic issues that influence how people access the system and the type of care that they get. It's, that's, um, an absolute truth, but there's also people that I think, you know, that are navigating things with a lot of privilege and a lot of

Ashley

And I've seen, and I know Serena, just in our clinic, sometimes we'll often see those people with significant delays in diagnosis because things might be in a more private setting, more private practice setting, where maybe those private practitioners might not be as familiar because it's not something that they see all the time. I would agree with that.

Serena

So tell us more about the onset of your illness. There was a gradual withdrawing from activities. Not academically was still high performing. And we had several stressors going on at one time, a move across country and going to college, which is a huge thing for young people. And we

Lou

When he came home from college, we immediately sought help and had a referral and had good help for a solid year, which didn't help identify or lead us into the right direction. And we saw at least two, maybe three other physicians.

Lou

before we found Epic. And then when we found Epic, the improvement started immediately because of the approach and because of the team approach and because of the communication. That's another thing that's a big drawback.

Lou

The HIPAA laws, which serve a good purpose in many situations, actually stand in the way for this area of medicine. Because if a person is unable to get themselves the proper treatment, someone else, a family member or a loved one needs to be involved. And yet if they're not being informed of what's going on, then it's problematic.

Serena

Delays treatment. Right. So if I can interrupt you now, just thinking about this juncture on the path to Epic, right? So if you were to do anything differently between the onset of symptoms and getting to Epic, what would it be? Knowing what I know now? Mm-hmm.

Ashley

Yes. Tying into that, because I think about this all the time, that year, what was the narrative about what was going on? Because you were, you know, in front of health care providers. He was. How what was their explanation for the shift in the changes besides normal adolescence? There was no explanation whatsoever.

Lou

None. Zero. Yeah. That's got to be very frustrating and very confusing. It was extremely, extremely difficult. I think some of that was due to HIPAA. And not getting collateral information from you. There may have been. You know, it's been so long. I don't remember. I don't remember anything major.

Lou

meaningful in terms of collaboration. The impression that I always had was, you know, stay out of the picture, you know, don't be involved. I can't remember because I've been in your, we've been in each other's lives for a while now. Did he have an inpatient hospitalization during that year? Yes, before he came to you, yes.

Ashley

And, you know, I even with an inpatient hospitalization, sometimes they're still, you know, not giving a family an explanation. We had a family meeting and they said, you know, they didn't know too much, but there was no signs of psychosis and

Lou

Nothing. And there may have been a small amount of some treatment, some medicine, and there was a counselor. Nothing was very, nothing that helped anything. Right, right.

Serena

So I'm going to circle back to the question that I asked before, because I do think it's important, right? If you're to take all this information, you know, now at this point in the journey and go back right to those family meetings, to that period before you came to Epic, what would you encourage these hospitals, these social workers, these systems to do differently to serve you and patients better? Well, we're up against a, we're up against a challenging system, but I would be, well,

Lou

Well, what I would do differently goes a step before being at that point. Yeah. It would go back to high schools and churches and peers. And what I would hope would be that there would be education there.

Lou

knowledge among the people. I wouldn't expect myself, I wouldn't expect that I would know very much about what was going on, but I would expect some professionals who work with young people too. Right. That's exactly where I wanted you to go. We

Serena

Right. We need as a community. Right. This is an illness. These are illnesses that impact individuals, families, communities and communities have a role in helping to detect illness. So so that's remarkable.

Lou

that there was a, an absence of knowledge of what even possibly could be developing. It's, it's amazing. It is. And it, I,

Serena

I want to believe that we've come a long way just in the last five to 10 years in terms of educating and destigmatizing. But I recently was in a high school talking to young people and teachers about this. And this is new information, new information about psychosis and the onset and the vulnerability of high schoolers to this illness. I believe it.

Lou

We lived in a very progressive area. And from early years, I was involved in a very, very wonderful parent education program from the preschool years. And we had programs on everything and looking into the future about education.

Lou

developmental swings about some years are easier and some aren't. There was never one mention at all. Not one. And this was a cream of the crop program. It's mind-boggling. It's mind-boggling and it's not surprising at all.

Ashley

Um, because that's, you know, that's unfortunately you mentioned not being seen and, um, you know, people, I mean, you're right. Like medication, even for psychosis is so new and like the grand scheme of things. Um, so many people with schizophrenia onset were just hospitalized for years, you know, so you didn't even didn't see them literally. And, um,

Ashley

That disconnect of seeing what a person looks like, who they are in the beginning. If you're put in a hospital and you're 18 and you're there till you're like 25, like you've basically been out of society, out of a community, out of your family and not seen. And so not seeing.

Ashley

well understood, especially from the, you know, medical standpoint, because back when there was longer, longer term institutions, you know, people weren't going in and out of the emergency room because they were in an institution. So, you know, kind of think about what was emergency room psychiatry training like? They probably never saw first episode psychosis in the same person because that person is just immediately shipped off, unfortunately, and removed and

Ashley

So the learning hasn't caught up with like a big group of people who are now living well and living with schizophrenia and doing life with, you know, psychotic disorder. Another thing that has crossed my mind about the education component is

Lou

Is it fair to say that the symptoms involve a change in perception of the environment, of interactions? So then when the people around the person experiencing this don't understand what's going on and then react differently,

Lou

as if that's not what is going on, that is not healing. No. Yeah. That's one of the things we know absolutely for sure. If it's common knowledge, how to, you know, we know how to push wheelchairs. We know how to help people get their insulin. If we know appropriate responses, right.

Lou

to people experiencing different perceptions.

Lou

Oh, it can change the tide. It can make it all not go away, but it can deescalate. It can help. So that's another reason. That's a great idea for another new campaign. Yeah, stress is like the number one provocateur of psychosis. From the public health standpoint, if people weren't treating you like you were a miscursed on a podcast.

Ashley

People weren't treating you like you were a villain and like you were dangerous and like then. Or misbehaving or being difficult or any of that. Right. Then you might internally, I mean, just to prevent stress in a person like that should just be human contact is where I not want to bring undeserved or.

Ashley

unnecessary stress upon someone else that you don't even know. Like if someone's in a wheelchair trying to get off of a curb onto the street, like someone would go help them. Right. Exactly. But we have this knee-jerk reaction in society, especially within the presence of adolescents to react to a behavior change or to punish a bad behavior instead of really understanding what's going on. Or to disappear and leave. Yeah. Yeah.

Lou

Yeah. Because, you know, as human beings, we like our predictability and we like people to be as much like ourselves, I think. So I frequently hear, well, I don't know what to say. Or I don't know, you know, even if someone is just quiet. So we need to learn how to be with people. Mm-hmm.

Lou

Who are not like ourselves. Exactly. And show compassion and understanding. And even like that, you don't have to understand or you don't have to agree to ask questions and to be curious because often people realizing that they're just heard can be

Ashley

cathartic, you know, to have, you know, a friend is just nice enough or comforting enough that you're like, look like this, having this like weird thought right now. I mean, we, we, you know, in high schoolers do that all the time. Like other things, like I've got a secret, I've got a crush on something out of the ordinary to like, want to talk about private things. Um,

Ashley

So it would be so lovely if it was common knowledge, you know, that you could confide in a world that is not going to like break you down. But the minute you go online and Google unusual thought, you're just hit with...

Ashley

You know, the worst case scenario is you're like, well, that's definitely not me. I'm going to keep that to myself. And that's something that we can all do and contribute to this. So if this affects, what are the statistics? One in how many people? A hundred. A hundred. Or schizophrenia. I mean, but psychosis, like 3%.

Lou

Then there's another statistic I don't remember about how many people that impacts. Six. Six. Right. Six for every person. Yeah. So if even if a fair number of these people learn and then they spread to others, see, we can do the same thing on the positive end, on the good thing, on the good end. And

Lou

To me, that's, you know, one thing that I've always appreciated about Epic is there's always been a steadfast, absolute sense of hope. Absolutely. You know, and when you're going through it, it's hard sometimes to, you know, things, it takes a little while for things to turn around.

Lou

So having hope is very important. And I think hope involves not sitting there, but learning how to help create the environment for the progress. I think hope is active. So I think there's a lot that those of us who are not in the medical field can do.

Serena

Tell us about some of those, Lou. Well, I, for instance, I've gotten to know a few of your patients through various events. And I really get excited when I see them. And I think they're starting to get excited when they see that I'm around. And so we have a conversation and I...

Lou

hear about what they've been doing and several of them are artists and what they've created. And I'm just so grateful that even if for a fraction of a moment, I can be in their life or their world and it feels perfectly natural and it feels perfectly just like talking to a friend. So I think that we need to

Lou

to spread that that's a possibility and not turn away, turn our heads. And I would offer that you, in addition to connecting with patients, you've also connected with other parents and you've been yourself, I think a harbinger of hope for them, right? You've been able to share your journey and your lessons with parents who have kids who have been newly diagnosed. It's tricky, but,

Lou

you see, if someone's not perceiving things the way they used to or are going to in the future, and if it's a little rocky there, then it's our responsibility to not get too freaked out or too whatever, because we want to reflect back to them that a sense of calm and that it's the world is okay and that you're okay and that

Lou

Yes, there's some things to be managed. At first, this idea of normalizing things was really foreign and strange to me. And now I totally get it. How long did that take? Probably a long time. I don't remember, but it happened gradually. Well, I mean, I say that kind of like facetiously, but it's like you have to be so patient and

Ashley

And and but actually change doesn't happen fast anyway. You know, I remind my like medical students all the time, you know, one doesn't like wake up the next day feeling like they're possessed by aliens. Right. Like it's a gradual, gradual thing, just like it's a gradual part of the family understanding, learning, gaining new beliefs themselves. Right.

Ashley

as like how they relate to shoring up the environment and the support system for their loved one. Like it's a gradual pace, slow pace, some would say, but necessary.

Lou

And there's going to be some dips, you know, there's going to be three steps forward, you know, a step back, whatever. But you see the net gain keeps adding up over time. Yeah, no, for sure. And that's what brings us all to here today. So in moving towards a wrap up, I guess I wanted to give you the opportunity to share anything else you want to with other parents, parents,

Serena

who are out there or some of the policymakers or the people who hold power to make changes in this world in which we help young people? Well, for the policymakers and all, I would just say, please come take a look at what this project, what Epic and Calm is doing. Just please come check us out and see the success stories and see what is possible. And for parents, I mean, you

Lou

No one is alone in this. No one is alone. You don't need to be alone. We have other parents, professionals who will be there and just have hope. And hope is not just sitting and hoping. I've been fortunate to have flexibility in my work.

Lou

and to be able to be supportive and to be flexible. I'm very grateful for that. I know that everyone is not. And that's why I feel so strongly about being supportive of as much help as many outside resources to help people. You're like our, growing up, we always had a room mother in the class. Yeah.

Ashley

You're like her clinic mom. I think I've come to you with my own problems. Well, I mean, this sounds strange, but I'm much more compassionate. I'm much richer.

Lou

because of the growth that I've seen personally and I've seen in a lot of other people as well. So, you know, there's always something to be grateful for.

Lou

And usually, you know, things, the moments that are bad don't last that long. If we're really honest about what's going on right this minute, the sun is shining, you know, we have a roof over our head or someone is going to give us a roof over our head or whatever. So we just have to kind of be in the moment.

Lou

And sit with the ones that are a little bit uncomfortable. And yes, they're a bit uncomfortable at times. They don't last forever. Yeah. And I had career making moment seeing your son smile after he played at In My Mind. It was just, I was like, okay, this is why we go through the dips. Well, I've seen...

Lou

It's possible in many of the patients. Yeah. So I say to the parents, stick with it and learn as much as you can. Okay.

Serena

about how to support. Well, thank you for being so supportive and such a wonderful advocate and mother to your son and as a clinic mom over many, many years. We appreciate you. Yeah, definitely. Thank you. I feel very fortunate. Thank you. Yeah. And so we're hoping that this sprinkles to six additional people that listen to this podcast and

Ashley

Share it. It shares. And then we'll hopefully have a little bit of a better world and the future. Sounds dramatic, but it's in this, from this perspective and where we're sitting now and what the amount of stigma still present, like we need to really have major hope for the future and move the needle positively. We need to tell, we need to,

Lou

We can say, you know, stop helps stop stigma. We also need to accompany that by what to do. What to do. Yeah. My head's spinning with new ideas now for columns. So thank you for being an inspiration always. Oh, you're very welcome. Thank you. Bye. Bye. Bye.