Transcript of Talking Heads with Dr. Noosha Niv – Episode 5

Shattering Misconceptions: Dr. Alicia Lucksted on Combating Mental Health Stigma

Announcer: This is Talking Heads. Explore the latest in research and policy about serious mental health disorders with Dr. Niv.

Dr. Niv: Hi, I’m Dr. Niv and today’s guest is Dr. Alicia Lucksted. Dr. Lucksted is a clinical community psychologist and mental health researcher at the University of Maryland Medical School and the Veterans Administration Vision 5 Mental Illness Research Education and Clinical Center in Baltimore. or Maryland. Her work focuses on developing, testing, and making available psychosocial programs that support the mental and behavioral health recovery of adults with serious mental illness. Over the past 15 years, a main theme of her work has been the development of strategies and programs to help people navigate and reduce stigma regarding mental illness, as well as reduce the harms that stigma can cause. Welcome, Dr. Lux. Thank you so much for joining me today. Let’s start with you. What led you to psychology and then more specifically the focus on psychosis.

Dr. Lucksted: Well, I guess just right off the bat, I wouldn’t say just on psychosis, but on mental health problems and conditions that really interrupt people’s lives. So, serious mental illness or psychiatric disabilities. But, uh what led me you could say that I realized even as a young person that I think in systems and particularly am oriented somehow to interpersonal systems like why does that work that way and why do people do this? And so through my education I learned that that sort of way of thinking one way of putting in words was that it was related to psychology. And then in the course of that I don’t really see psychosis or serious mental illnesses as like a wholly separate thing. I see it as all on a continuum because various kinds of emotional and mental psychological struggles that that people have are not necessarily cut up in nice meat. bins or chapters or categories like is necessary to do in some of the reference books like DSM. And so it’s more seeing it on a continuum and uh then I end up gravitating towards the more sort of disabling serious end of that simply because that’s where more help is needed. I mean that’s been neglected a lot of times, stigmatized a lot of times. I’m a great fan of a combination of professional help and not just and peer help but also other kinds of you know, more holistic sort of three dimensional way of looking at things, but all those come into play more when one has more serious troubles.

Dr. Niv: Absolutely. You’ve studied stigma a lot. So, let’s why don’t we start with societal stigma? This is a word we hear all the time, but what does it actually mean?

Dr. Lucksted: I use it as the umbrella term for all of those messages and stereotypes and assumptions and judgments that kind of are in the fabric of a given culture or society. And of course that varies depending on who and where even within a particular community. But as a general umbrella term for like oh the messages, well what are some of the common stereotypes of X people can easily rattle off three or four or five or 10 and then the ways that those affect how people treat each other and um everything from you know interpersonally treat each other to like policies and practices and institutions. So, it’s a really to me it’s a really broad term and when I’m trying to figure out strategies or or talk with a person or an organization about how we can make things less stigmatizing that’s just like the starting point and then we try to break it down into different pieces so that they can be kind of grab a hold of them better and uh think about them and and also what strategies would be given a given situation. So, I use that as a really broad term.

Dr. Niv: I heard you refer to societal stigma as a social pollution.

Dr. Lucksted: Oh, yes. That’s a great metaphor. Yeah,

Dr. Niv: I really love that. Can you expand on that a little bit because that really stuck with me.

Dr. Lucksted: Oh, well, I’m glad. Um, I think I made it up. I I mean, maybe somebody else came up with it before, but I think I made it up. The idea was that if you live in a place that the air is polluted, if you’re going to try to live your life, you’re going to be exposed to that because you you’ve got to breathe. You’re you’re in that environment. And while it is not your fault, you’re still left with dealing with the consequences if it affects your health. And so therefore, a prudent person will think about what their means are for trying to protect themselves from that a bit um or compensate or something. So the analogy to societal stigma is like I said, I think I used the idea of the fabric before, but um or you could say the air that these messages and assumptions are kind of baked in everywhere, floating around like social pollution. And if you’re going to exist in any part of society, you’re going to be exposed to some of that. And that’s why people can rattle off some of those assumptions or have these reflexive fears and reactions when they haven’t even really given it much thought. Do they even know what schizophrenia means, for example, but they sure have associations to it? And so similarly, it’s not your fault that those things exist, but you are left with dealing with how it affects you.

Dr. Lucksted: How, in this case, not your lungs, but your thinking and uh your behavior and things like that. And so lastly, it’s kind of like air pollution because we’re all trying to improve it, but it takes a lot and it is a long road. In in many places, air quality is better than it was several decades ago because of the things that people have worked, but it’s taken decades and it’s still terrible in many places. So similarly, we’re all trying to improve societal stigmatization, but in the meantime, we have to walk through the current social environment that we’ve got and it has a lot of stigma to So, you know, let’s play a game of myth versus fact, right? There’s some really common myths that immediately spring to mind about serious mental illness. I’m going to rattle off a few and then if you could tell me what the correct answer is is, you know, is it true or false? Let’s start with people who have mental illness can’t get better.

Dr. Lucksted: We know that’s not true. We know that many people who have various kinds of mental illnesses do get better all the time. People, even some get better without help. So, it’s definitely not hopeless. And on top of that, we know that there are lots of treatments that help a lot. Everything from medications, although it can be hard to figure out the right medication for the that person at the right time, at the right dose, the right medications can be a pain, but they can be life-saving. There’s a lot of very effective medications, but there’s a lot of very effective therapies. Finding the right professional that works with you and for you and is a good match can also be a challenge. And that’s a drag when someone is suffering. But that’s because it’s complicated. And then also peer support and informal supports, everything from, you know, spirituality to exercise to having good friends. It doesn’t mean that that’s going to cure a mental illness, but it certainly helps in terms of getting better. So that it’s absolutely not hopeless. Even though I think that symptoms can sometimes feel hopeless, it’s important to keep in mind that it’s not. Even when it feels that way,

Dr. Lucksted: there there’s hope. always. And

Dr. Niv: the next one that you know that popped into my mind that media and movies and you know really perpetuate is that people with mental illness are dangerous,

Dr. Lucksted: right? Dangerous. It’s so annoying because well, first of all, I mean there’s like statistics wise, people who have serious mental health problems are more much more likely to be the victims of crimes than people who do not.

Dr. Niv: Yes.

Dr. Lucksted: Because these illnesses can make one vulnerable, have difficulty thinking, have difficulty functioning and makes one vulnerable to being a victim. That is where the real problem lies. People with mental health problems are no more likely to commit violent crimes or or be uh be violent than anybody else and often less. So, the other thing is that stereotype plays into this big sort of like monster lunatic uh sort of picture, which really is a good way to just push people away and other them that they’re scary. I mean, and that also is not true, I think, because some of the symptoms and the way people act are unfamiliar. We tend to be mean to each other when uh we are unfamiliar and tend to be afraid. And that plays into that that violent stereotype plays into that as well.

Dr. Niv: I’m so glad you brought up the point that they’re more likely to be victims and that’s kind of across the board when you talk about what type of violence they can experience.

Dr. Lucksted: Yeah.

Dr. Niv: Um what about maybe not as extreme version, but the idea that um people with mental illness are they’re unpredictable and they’re unstable, so you you should keep distance.

Dr. Lucksted: Not so much. Not true. Um I mean, of course, any person can do something unexpected and because it’s unexpected, you might call me unpredictable because I give an answer you weren’t expecting or something. That’s true. Of course, people can sometimes be unpredictable. That’s just because we’re not omnipotent, you know. But people with mental health problems are not any more volatile, any more unpredictable, any more uncontrollable than uh than anyone else. I mean, anybody in an acute state can do things that are unexpected. If you’re especially angry, if you’re especially grief-stricken, if you’re especially frightened, if you’re especially anything, you can do things even especially happy. People start jumping up and down and grabbing people that could frighten someone next to you. When people are unpredictable, it’s usually an extreme emotional state. And I think what folks often forget or don’t know that, for example, being psychotic is terribly frightening and disorienting. So that when a person does something unexpected, it’s out of that out of trying to figure things out, out of trying to protect oneself or react. And so it’s out of the emotion. It’s not an inherent part of the the person or the illness. So I guess what I’m trying to say is there might be a moment where I am unpredictable, but that could be true of anybody.

Dr. Niv: Absolutely. Think of like co-orker who gets angry or your husband or spouse or you know,

Dr. Lucksted: right? I mean, you might hit a nerve with someone and you didn’t realize that that was a nerve and they’re like, “Wow, disproportionate,

Dr. Niv: right?” Um, yeah. I I studied attributions a lot. So, the one of my uh my can I have a favorite stereotype? But um the idea that mental illness is a sign of personal weakness that if people just buck up. They could do better.

Dr. Lucksted: Yeah. Of course, if anyone who’s familiar with someone who has dealt with mental illness or other life adversities or other health conditions know that it’s quite the opposite. It takes a tremendous amount of strength to cope with health conditions like that. It takes a tremendous amount of resourcefulness and uh determination and active coping. It really is quite is quite the opposite. it. And also sometimes that’s attributed to like cause that somehow if you were stronger you wouldn’t be susceptible to depression or something and we know that that’s not any part of the cause. It has nothing to do with ego strength or personal strength of what causes any of these things.

Dr. Niv: Right. Another one that comes up is you’re lazy.

Dr. Lucksted: Yeah. So similarly, it’s not that that gets into the idea of a a character weakness as opposed to like a literal strength weakness that you’re immoral or you have bad character somehow and I think it might be helpful to keep in mind that if you look across because you’re right what you said I have done a number of things related to stigma or stigmatization which is a term I like to use because it focuses on the process that we do to each other where stigma sounds like something you have or you don’t have where stigmatization makes it clear we do this to each other and I just think that’s important but anyway that if you look at the ways that we vilify or stereotype people with mental illnesses and the way that we stereotype or vilify other people that we discriminate against. We being people in general, they’re really similar categories. They’re not that different. Anybody who is other is usually less than us. So weak character, poor uh morals, they’re unpredictable or irresponsible. They have ill intent. They’re violent or evil or going to treat us. There’s there’s a lot of similarity in how we other people and then we seem to tailor it to the particular thing we’re othering. So the idea of weakness is is a really common one.

Dr. Niv: And with that is a sense that this person actually has control over what they’re doing. So they’re responsible for their behavior,

Dr. Lucksted: right? And that they could just pull themselves together if they wanted to. And that therefore they’re to fault and to blame and we don’t have to worry so much about their well-being because they’re doing it and they’re to blame. Anyway,

Dr. Niv: am I missing any key ones? I feel like those are the main ones. Are there other societal ones?

Dr. Lucksted: Variations on themes.

Dr. Niv: Okay.

Dr. Lucksted: Uh, one that is related, but I will just mention one more because many people have said it to me when we have a certain program that I’m part of about trying to be more resistant to internalized stigma is that whatever the mental illness diagnosis that those problems don’t make you less intelligent. That sometimes people who are dealing with these mental illnesses themselves are like are you sure that that one’s false because when I am symptomatic I can’t plan my day or I can’t even you know read an article on on the internet or something I can’t concentrate and that I think that maybe my fill-in diagnosis here really does uh degrade my intelligence and it’s just not true when people are actually measured intelligence does not go down but if you think about it if someone has say the flu, you often can’t concentrate enough to read an article or you get mushyheaded and you can’t really plan your day and focus. And so it has to do with what’s going on in terms of the illness, not with someone’s character again, not with their intelligence.

Dr. Niv: So all of these ideas, these thoughts exist. And how does that change people’s behavior towards a person that’s ill? What’s the ramification of having these thoughts?

Dr. Lucksted: These mistaken beliefs then lead to negative feelings towards that group and members in it. So if people are volatile or violent, we think they are, then we’re afraid of them. If they’re dishonest or to blame, then we don’t want to be around them, you know. So these thoughts lead to feelings. And the two together lead to behavior like I want to avoid those people or I don’t want them living in my neighborhood or even worse taking out our unhappiness about something towards someone who is not really seen as a full person. And so even to violence or institutional discrimination or exclusions. So the the mistaken thoughts, the myths lead to feelings which can lead to behaviors and discrimination and that can be at the person level all the way up to institutional and societal weapons.

Dr. Niv: And that can really affect policy, right? Because if I have all these beliefs about a population, then I’m not going to advocate for policy that can help them.

Dr. Lucksted: Of course, when I say institutional, I mean could be the the policies and programs within that could include the entire government. So sure, whether it’s appropriations of of funds of do we fund mental health at the level that it needs to be, I don’t think so. Just like I don’t think we pay public school teachers what they’re worth. You know, I mean, there’s just some inherent ways that our values and our viewpoints are baked into even our monetary decisions at federal and local levels. It also can be baked into our institutions and our government in other ways such as uh laws of who’s allowed to uh get married, have custody of children, who’s allowed to do certain things, what it what counts for um a disability, things like that.

Dr. Niv: You studied internalized stigma. So, can you describe the difference between internalized stigma or or you called it self stigma and the type of stigma we’ve been talking about lately and give some examples.

Dr. Lucksted: Yeah, I like the word internalized stigma because it describes the answer to your question of what happens, but many people find that to be a rather large word and so The word self-stigma gets used also, but some people don’t like that because it could feel like you’re blaming the person,

Dr. Niv: you know, for stigmatizing themselves. So, you know, we kind of try to use both and make everyone unhappy. Um, so internalized stigma, if you think of it, that word is like something coming into yourself. So, again, to go to that air pollution model that if you’re in a place that’s polluted, it’s pretty hard without some pretty sophisticated filters to not have some of that get into yourself. into your lungs in particular. Some things get into your bloodstream and there it does harm. So it does harm when it’s out in the air like you know you can’t see the mountains and your eyes hurt but then it also can do internal harm and people who are exposed chronically even to contribute to like cancer risk and respiratory problems. Okay. So then same with internalized stigma but if you are exposed to that frequently and especially if you also then develop or experiencing a condition that gets put in that category You’re like, “Wow, people with mental illnesses are all the things we’ve been talking about. Oh my goodness, I am now in that category.” So, does that mean that I of those bad things we were just talking about? And the the the question is, well, what happens then? And we know that sometimes when people are exposed a lot, especially um from sources that they respect or rely on and in ways that are hard for them to distance themselves from whatever the message is, they can start to believe those things. if they’re really true of themselves and start to see their experiences through that.

Dr. Niv: So they start to believe I’m lazy, this is my fault or I’m weak,

Dr. Lucksted: right? I’m worthless. I can’t be trusted, whatever it is. And so once you take that into your thinking about yourself, then it’s a pretty negative spiral. And um one of the people who is famous for working in this area, Pat Corgan, talks about the why try effect. Like it can get you in the well if I’m worthless, why try to get better? If my life if everything is hopeless and I’m always going to have this disabling condition and there is no hope then why stay alive um why try to be responsible why try to suffer through figuring out what might work better so that it can have tremendously corrosive effects

Dr. Niv: I can see how depression would come out of any of those thoughts a hopelessness

Dr. Lucksted: right a lot of these mental illnesses like any chronic illness takes a tremendous amount of strength and persistence of active coping over and over again to figure out what works for you. And so to have that determination drained away by internalized stigma misconceptions is really harmful to the person’s recovery.

Dr. Niv: That sounds really heartbreaking.

Dr. Lucksted: And of course, not everybody just falls prey to that. There are ways that one can resist it. It’s not somebody’s fault if they’ve internalized it, just like it’s not your fault if you have, you know, a cough because you lived in a place that is that is polluted.

Dr. Niv: You’ve studied veterans as well. Are there issues that come up? in the veteran population around self-stigma that
are not seen in the general population.

Dr. Lucksted: Well, for the most part, I think veterans are people first and so there’s mostly similarities. I think there maybe are a few differences. It’s really important to keep in mind that veterans are really varied and even how a person thinks about being a military veteran seems to vary tremendously from person to person. Like it’s not a central identity for everybody. It’s got different contour for different people. We know that women think of themselves as veterans differently than men sometimes. So anyway, I just want to say that being a veteran is not one thing, but even given that there’s some unfortunate clashes uh between stigma and some sort of military socialization. You know, for example, the idea that you’re in the military, many people internalize this idea that you need to put your needs behind the group. You need to suck it up, not complain and figure it out and not need help. And we really like that as a culture. We really admire self-reliance uh in mo, you know, most strata of American culture sometimes to a little bit of an unhealthy degree. And so we have that problem. People find it shameful to ask for help or they think that it means they’re weak or something like that. And that I think is reinforced by some of the military values. And so that means that sometimes veterans feel like they have failed. failed if they can’t figure it out themselves. If they do feel like they need help or they find themselves not able to fulfill whatever roles are important in their life, they feel like they failed. And that could be a negative spiral. But at the same time, you could, and I know many, many veterans and VA peer specialists and the VA clinicians try to help people turn that around and say, “Well, what’s another value in the military, which is teamwork and getting the mission done?” If you needed help putting in that engine by yourself, cuz no one can lift 500 pounds alone, you better ask for help about how to operate the winch or whatever. You’d be stupid to not, you know, and so to try to to use uh values to also support people’s recovery. But that self-reliance can sometimes be a problem for veterans.

Dr. Niv: That’s a wonderful reframe.

Dr. Lucksted: I did not come up with that one. I learned that from a couple of VA clinicians.

Dr. Niv: Okay. Um, you know, you talked a little bit about why try and what is the effect of stigma on treatment? on outcomes. What is the impact besides it doesn’t feel good?

Dr. Lucksted: Well, let’s see. Um, so I live in Maryland and in the rural part of our state in western Maryland, I’ve heard a number of people I’ve heard this story numerous times over the years that people will drive half an hour, an hour away from their hometown to see a therapist because there’s usually only one like county health department or one or two, you know, counseling practices and they’re pretty worried that somebody in their small town will recognize their truck or their car parked out front and they don’t want it to be known. So, in addition to like, you know, wasting gas and time, that’s just an indicator of the answer to your question that stigma can keep people from getting the help they deserve and would benefit from. We said at the beginning, it’s not at all hopeless. There are lots of effective treatments of all sorts and stigma can keep people from those. It make people ambivalent about engaging. I really feel I’m desperate. I really need some help and oh, it’s so embarrassing and so horrible and what will people think? It can make people very ambivalent or rejecting of medication as if that shows that they’re weak when really it’s a matter of a great tool that you don’t always need medication to deal with mental illnesses, but it’s a good option to consider in many cases and can be tremendously helpful. And then on the other side of the coin, outside of treatment, it really blocks off a lot of opportunities that just because I have a mental illness or you do does not mean we don’t deserve to have certain opportunities and uh the stigma can really block off a lot of those.

Dr. Niv: What can you give some examples

Dr. Lucksted: like people not wanting to associate with you if they do see your car at the counseling center or activating all of those stereotypes or at least a bunch of them that we were just talking about if they see your pill bottle sitting on the bathroom counter when they use your restroom and happen to know what that is or go look it up because they’re nosy or employers wanting to know why there’s that gap in someone’s uh resume or just not even wanting to know, just not employing people who have gaps in their resume at all.

Dr. Niv: So, your ability to participate in things we do to connect with other people, it could really lead to some isolation, right? If you’re not inviting people over because they might see your medicine, if you’re not applying for jobs because you have a gap in your resume, that can be really isolating.

Dr. Lucksted: Sure. And that’s an additional step. Like there’s one that is opportunities black because people really do discriminate or exclude or reject. Why would you want to walk into a situation like that? So, you start trying to anticipate where you might run into stigma and self- selecting to not engage with that which of course on one hand makes a bit of sense.

Dr. Niv: Why go someplace where people are going to be disrespectful to you or even dangerous? But of course, like a lot of worry when it gets overgeneralized, it feeds into just what you were talking about like not even applying for something because even though I really want a job and I feel bad that I don’t have one. Not applying for any jobs because well, I’m afraid that all employers are like that and kind of getting overgeneralized. And so trying to walk between those two extremes of protecting yourself. Yes, you got to be discerning but not overly generalizing so that you cut off your own opportunities. Again, understandable, but not getting you closer to your goals,

Dr. Niv: right? Especially if we think of recovery as not just symptoms, reducing symptoms, but as participating in your community and making social relationships, having a job, you know, these other functional outcomes.

Dr. Lucksted: Well, yeah, I totally agree with you and I also think of it in terms of roles that roles are really important for people. For example, what does it mean to be an adult? Many times it means in our cultures supporting oneself economically and living on one’s own. Now, I don’t personally think that living on one’s own is always better than living with other people. I mean, but we have this thing baked in that like you need to be independent. And so when someone’s not, they feel worse about themselves or they have to fight to feel okay about doing things a different way. So yes, functioning and then also roles. Am I a good neighbor? Am I a good family member? Can I even be a family member? Can I act as a family member? It’s always stuck with me a man who I was working with who said, “I want to be a member of my family, not a project of my family.”

Dr. Niv: O

Dr. Lucksted: and want to be like fully a member who gives and takes and is not just seen as a recipient or a problem.

Dr. Niv: Right. Are there factors that we know increase one’s sense of self stigma?

Dr. Lucksted: Yeah, some of them I mentioned are environmental. It’s higher risk if you’re exposed repeatedly.

Dr. Niv: Okay.

Dr. Lucksted: Especially from sources that you see as credible.

Dr. Niv: By credible, you mean a doctor or a family member, friend? Like is it based on the relationship?

Dr. Lucksted: I think it it’s really any kind of credible. I mean, it that could be like a doctor would be like an expert. Unfortunately, when And there are surveys, people who have mental illnesses will mention healthcare providers as one of the top three or five sources of stigmatizing attitudes and statements. So yes, here’s someone you’re going to for help and they’re saying or doing that thing. Very harmful. But also other kinds of credibility, family members who you think these are people who love me and who I trust. When they’re stigmatizing, it can be hard to separate the mistaken belief from the relationship and reject the belief without feeling to reject the relationship or other sort of social leaders. If you’re part of some sort of faith community,

Dr. Niv: religious leaders there or part of certain social communities, the social leaders there can be hard to say, well, you know, I think they’re really fabulous and there are great thought leader or something, but they’re totally wrong about this and being horribly mean about it. They can be hard to hold that dissonance and so that makes it more vulnerable. But also, do you use the term identity engulfment or Diagnostic overshadowing.

Dr. Lucksted: That’s

Dr. Niv: what is that?

Dr. Lucksted: If you take on the identity of your mental illness or the diagnostic label as defining you, then you’re much more susceptible to defining yourself with the the stigmas or the misconceptions that are associated with that.

Dr. Niv: That makes sense.

Dr. Lucksted: As opposed to like this is can even come out in language of saying I’m a schizophrenic versus I’m from Baltimore. I play the tuba and I deal with this annoying thing called schizophrenia. You know, not to downplay its seriousness because it can be very serious, but it’s different to have it be part of your life than it to be the what identifies you and defines you

Dr. Niv: because that feels all consuming to say I am schizophrenic.

Dr. Lucksted: Yes. And then everything about schizophrenia is equal to you. I mean, there’s not really other parts to dilute those messages.

Dr. Niv: Okay. So, who the message is coming from, how often you’re getting the message, that can increase your identity around your diagnosis. Anything else that can increase self-stigma?

Dr. Lucksted: Also, not being well informed about one’s own illness or symptoms and mental illness in general, not knowing the myths from facts. Bipolar is not the same thing as split personality or you don’t know what it means to be dealing with depression or OCD or whatever. If you don’t know, we are not very good in terms of general education about mental health literacy. So, you can’t blame someone for not knowing. But that is a danger because then you don’t know to say h that person clearly is ill-informed. They are not a credible source here because they’re saying some pretty off-mark things if you don’t have some base of knowledge. So one of the things you talk about you can make yourself more resilient against stigma by becoming well informed.

Dr. Niv: That’s a great segue to my next question. So how can we protect against self stigma? So education.

Dr. Lucksted: All right. So myth from fact

Dr. Lucksted: it’s also not enough to just know something is wrong, especially if you’re trying to save off internalized stigma. It is sneaky and sticky. It’s like gets in there. So, in it’s not just enough to know that something’s wrong. It’s much better to do like active counter messaging for yourself. I know that this is because of my symptom. It does not mean that I am a weak individual. Some people will write a post-it and put it on their uh mirror

Dr. Niv: like those, you know, affirmations people do.

Dr. Lucksted: Yes. But particularly targeted to counteract, counter messaging,

Dr. Niv: right?

Dr. Lucksted: And getting that in there is um a way the opposite of identity engulfment is to grow and this goes right along with the sort of recovery paradigm of mental health and services is to grow the other parts of yourself. So to think about what are your strengths, what are your values, what are things that are important to you and deliberately fight to give them some air and sunshine and water so they grow because that gives you more personal resources internally and Also, it gives that stigma a smaller target in terms of being exposed to sources. People can take some agency. I mean, that’s another important thing that you’re not just a passive target of societal stigma and all these, you know, messages flying around. That you can have an active stance in how you choose to deal with it. So, of course, that’s not to say one just writes off all of one’s family or whoever says or does something that’s unkind. People are imperfect. They may be ignorant themselves. you know, you may be reliant on them. In one of the programs that I’m part of, we talk about increase the positive, decrease the negative, and bring your best self to the interaction for close-in interactions that are mixed positive and negative with regard to stigma. So, how can I increase the positives in that relationship? Not that I’m responsible for the person’s ignorance or stigma, but just it is an interaction. So, is there something I want to do that could increase the positive? One example quickly might just be thanking them. for some portion of the relationship you really like. That does not mean you’re forgiving everything else or forgetting everything else. Decrease the negative could be asking someone if they could stop using a certain term. And maybe they’ll tell you to go jump in a lake, but maybe they’ll ask you why and listen. It might be possible. But even if they ignore you, you’ve stood up for yourself and asked for articulated something and you get some data back about where they’re at or what their limitations are. And then bring your best self. If you’re going to an interaction that you know is probably a bit dicey. How can you be centered and strong? I always use the example of a difficult family situation I had for years, but yet I was going there and it always made me miserable. And I found that if I brought winter green lifesavers, I was better. I was calmer. I know that’s totally random, but I happen to like winter green lifesavers. And I would literally go buy some before we went to these relatives house

Dr. Niv: and it worked. So it doesn’t have to be a big deal. Sometimes it can be like bringing a book so that if you feel excluded, you go out on the patio and read and then you’re and you like that. It’s all about what you’d like to do to take care of yourself or bring your best self to the interaction.

Dr. Niv: So, you know what? If we can’t get to people in time to prevent self stigma, let’s talk about what we can do to improve the situation when someone is already experiencing it in intervention can take place on like two levels, right? On the level of the individual and societal, which is a big issue. You have developed an intervention that addresses the individual part.

Dr. Lucksted: Yeah, it has a couple of variations now. So, the program itself is sort of the educational and skill building program called ending self-stigma that I created with several other people a handful of years ago. And it’s like a a class or a psychoeducational group. It’s offered in a number of community programs and VA units or programs across the country. country and even in a couple other countries nowadays. Doesn’t have to be delivered by a licensed mental health person. Uh it’s a lot of times delivered by peers as well. Uh really just anyone who has a base of knowledge and is a good group facilitator. There’s pretty explicit manual that anyone can download. But what it consists of is we tried to boil down what was known from research and from clinical experience and from lived experience about being resilient in the face of internal stigma, pushing it out of one’s thinking and package those into practical strategies. So I I sometimes use the idea of mix it all up, bake it, and then slice it so that it’s accessible to people. And I think underlying all of it is the fact that I ended up working in the area of internalized stigma because I think there’s a lot of people trying to reduce societal stigma, but it seemed like this idea of those messages are out there and oh my gosh, now I think I’m a member of that group. So does that mean those are all true of me? that is horrible and is another weight of dealing with these illnesses. That’s just terrible. We were neglecting that as a field and so that was a niche that we could perhaps help it in. Um so underlying all of that is the idea of naming internalized stigma as a hazard. I think it’s really important. I think that mental health programmed people, self-help groups should be mentioning it like hey and this other thing that can happen really sucks and you should at least know that it’s a it’s a possibility or a danger. Not everybody has problems with it, but you should know it’s out there so you can watch out for it. By giving things a name, we can talk about them and problem solve them more.

Dr. Niv: Is this program available? You said to for anyone to download.

Dr. Lucksted: Yeah.

Dr. Niv: Okay, great. I’ll put a I’ll put a link to that then.

Dr. Lucksted: Yeah, there’s a rather long manual. Uh long because it’s detailed so that you don’t need certification or whatever. You can literally pick it up if you have good group skills and we’re happy to consult and talk to people when they want to, but we wanted it to be low bar if you thought it would be useful for your center or your practice or your whatever. We wanted it to be low bar.

Dr. Niv: I’m going to switch gears. I have a couple questions from my Facebook page.

Dr. Lucksted: Cool.

Dr. Niv: All right. Do the type of hallucinations or delusions someone has affect how much stigma they experience?

Dr. Lucksted: Wow, that’s a cool question. I can imagine that it could be. So, I have never had hallucinations myself, but I maybe we all have delusions of some sort, but um But people that I knew who have said that they quickly learn to keep some of them to themselves that they can except in the most trusting of circumstances because they can be frightening and strange and that can exacerbate that otherness so that they try to not show or tell some things. So I think the more that they’re negative, frightening, or strange to others, they could feed into those stereotypes that you’re dangerous or that you’re kind of alien. I don’t know what can you add from you know your Facebook page readers more than I do.

Dr. Niv: Yeah, I’m just thinking like in in terms of hallucinations, there’s lots of different types of hallucinations and auditory are the most common. But I think someone’s reaction might be very different if you are hearing voices but not talking back to them, for example, versus you’re in an argument with your voice you’re hearing. So I I could see how that presents to someone who doesn’t know what’s going on would be significantly different,

Dr. Lucksted: right? And that’s kind of what I meant is that people try to not describe and not show uh what some of them are and learn to not respond or not respond clearly,

Dr. Niv: right?

Dr. Lucksted: Um at the same time, in terms of positive coping, some people find that talking back to their voices can quiet them down. So they just might need to figure out how to do that and what works for them.

Dr. Niv: From a study I did on attributions, I know that family members were much more tolerant of religious delusions. if the family was religious, they didn’t actually perceive a lot of it as delusion.

Dr. Lucksted: And there are some that are not negative, that are neutral or even positive. And of course, there is a movement more prevalent in Europe than in the US, but there are chapters here of voice hearers that hallucinations are not everybody considers them by themselves to be a pathological thing. I mean, it’s it’s normative in a lot of cultures, for example, to hear voices from someone who’s passed away recently.

Dr. Lucksted: I mean, so My point is simply that hallucinations are not always considered a psychiatric symptom in all in all cases. But um some of them are even positive or or neutral. So I think when they’re more negative, they’re also more stigmatizing.

Dr. Niv: Okay. Um the second question I got is uh how should my daughter’s therapist address the shame and stigma she’s experiencing. I think we’ve talked about that a little bit.

Dr. Lucksted: Yeah. Bar be it for me to tell someone what they should do with their therapist as a client or a therapist. No, there’s so many things that one doesn’t know in that simple sentence and it seems quite improper to say. So being a little bit more general, one can think about where shame comes from. It comes from seeing or assuming judgment from others and therefore where is that judgment coming from? And how can we dilute it or help the person decide what they think of it? So then instead of feeling that it’s legitimate and therefore I am that and it’s shameful, to think of it as gh it’s it’s so sad that that person or that group is so ignorant or it’s so unfortunate that they can’t be more compassionate but I can try to be compassionate towards them which again is not to say it is the target’s responsibility but that a reframe can sometimes uh come from a place of strength and and help the person not be subject to the shame but I can’t tell someone what they should do with their therapist

Dr. Niv: but but it seems like at a baseline this person’s daughter would benefit from education about her illness

Dr. Niv: and about the stereotypes and stigma like we’ve been talking about. What’s are there misconceptions that are baked into that chain?

Dr. Lucksted: Exactly. Um, last question for you. What are you most excited about in the field of psychosis or serious mental illness? In your case, it’s your work’s not psychosis specific. What are you seeing as having the potential to really improve lives?

Dr. Lucksted: Wow. H you might ask me this question five minutes or five days ago and I might give you a different answer, but my My reaction is I think that in recent decades there has been some progress at breaking down the lines between or the walls between us and them between people who have mental illnesses and people who help people who have mental illnesses or people who study people who have mental illnesses using that terminology deliberately because it makes it seem like I am studying you. I think there is still a lot of that but there has been some gradual thinning or breaking down of that wall so that people who ha are living those illnesses are more part of the conversations. People who are the therapists, the psych rehab counselors, the researchers are gradually able to be more open about their own mental illness experiences, their own struggles. So it’s less us them. And I think that that is very promising because it means we can bring together the strengths of like scientific paradigms, the strengths of lived experience uh and the and other things, clinical experience, qualitative research to bear on the problems rather than having to defend against them, but I know that’s kind of a meta answer. I was I hope you weren’t thinking about something concrete.

Dr. Niv: No, I love that. It’s a it’s a very broad question looking for a broad answer. That’s that’s great. It’s true. I see so much more work done being in with lived experience which is needed. That voice is needed.

Dr. Lucksted: Yeah. And not just like again using these terms deliberately including them in our research. or in our stuff, but rather more mutuality in a number of different directions. And uh we need to push that. We don’t want to be tokenizing or reifying it in a new way, but I think we’re making some progress.

Dr. Niv: Well, wonderful to have you. Thank you so much for joining me today. This was such a great discussion and I learned quite a bit from it. I really appreciate you. Oh,

Dr. Lucksted: well, it’s a pleasure talking with you. Thanks for adding your ideas. I appreciate it.

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