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Personal Perspectives on Family Engagement and Support

  • November 20, 2023

This episode is led by Ken Duckworth, M.D., chief medical officer, National Alliance on Mental Illness (NAMI). He leads a deep discussion with individuals who reflect on their years of lived experience with serious mental illness (SMI) and the critical role family members played in their journeys. This is valuable, personal perspective that is useful for clinicians, individuals who receive care, and family members alike. Topics include stigma, family communication, the bonds of siblings and close family members, strategies to support healthy family involvement, and much more.

Transcript of Audio

Dr. Ken Duckworth (00:10): Welcome to the Medical Mind. I'm

Dr. Ken Duckworth. I'm a psychiatrist and the Chief Medical Officer of NAMI, the National Alliance on Mental Illness. I'm also the author of NAMI's First book, You Are Not Alone, the Guide to Navigating Mental Health with advice from experts and wisdom from real people and families.

(00:30): I asked people from this book to participate in this conversation of the Medical Mind, which is a podcast about mental health treatments and the people who benefit from them. This episode is co-presented by SMI Advisor, a clinical support system for serious mental illness, and by NAMI, the National Alliance on Mental Illness. SMI Advisor is funded by the Substance Abuse and Mental Health Services Administration, SAMHSA, and administered by the APA, the American Psychiatric Association. These podcasts include real life experiences of people with mental health conditions and their family members. Some of the content includes discussions of topics that may be upsetting, such as suicide. If you're in need of urgent support, please call 9-8-8 the National Suicide Prevention Lifeline. If you want to talk to a trained volunteer on a non-urgent basis, you can call the NAMI Helpline at 1-800-950-NAMI or 1-800-950-6264. The helpline is available from 10:00 a.m. to 10:00 p.m. Monday through Friday Eastern time.

(01:35): Today we're going to talk about how people communicate in families and how their relationships in families are impacted by the experience of mental health conditions in either one or both family members. I want to say the book has been very popular, but the chapter on family communications has probably been among the most requested. People want to talk about how to communicate in their families when someone has a mental health condition. I understand this quite personally. My dad was very loving and had very severe bipolar disorder with episodes of psychosis. My family never really figured out how to communicate about this effectively, so this is one of the things I was most interested in learning from real people in the process of writing NAMI's first book. I'm joined today by two sets of family members who are here to talk about their mental health journeys. Why don't we just start with the basics of introductions now that we have everybody on sound.

Liam Winters (02:35): Sure. I'll go ahead,

Liam Winters. Ken, I think Emma was telling you a little bit about where we're from, but we grew up for most of our lives in Charlotte, North Carolina. Went to school at Appalachia State University and then after getting my master's there and I went and actually worked at NAMI for about two and a half-ish years and now work in Richmond, work and live in Richmond, Virginia.

Dr. Ken Duckworth (03:03): Thank you, Liam.

Emma Winters (03:04): Yeah, I can go next. Hi, I'm Emma. I live in New York City now, but as Liam said, grew up in Charlotte. I know there's a couple Massachusetts folks in the Zoom and I did go to Boston College, so maybe we've shared some geography at some point.

Dr. Ken Duckworth (03:24): Well, thank you both. I really appreciate the two of you, and so we'll be talking about sibling relationships and communication strategies and how you've learned and how you have grown through this whole process. So I just want to thank you Emma and Liam. So Cynthia and Janet, do you mind introducing yourselves?

Janet Berkowitz (03:45): I'm

Janet Berkowitz. I'm a certified peer specialist. I have been dealing with bipolar disorder diagnosed in 1980. I have mostly dealt with suicidal ideation a lot, and so I do a lot of work in that and I teach throughout New Jersey in mental health self-help centers. I have a play on suicide prevention and I live in Mount Laurel, New Jersey near Philadelphia, and I like my work a lot. I'm happy.

Dr. Ken Duckworth (04:20): Alright, Cynthia?

Cynthia Berkowitz (04:22): Yeah, I'm

Cynthia Berkowitz. I'm Janet's younger sister. I live in Massachusetts and by some kind of serendipity, I have a specialization in treating early psychosis.

Dr. Ken Duckworth (04:36): We're going to be chatting with each of you as individual siblings and then I think we should have a more open-ended conversation where you can respond to each other. And Janet, I'm going to ask you to start by just sharing a little bit about your mental health journey.

Janet Berkowitz (04:52): I've always had a problem with rage since I was a toddler and I know that anger can be a big thing for bipolar disorder. By the time I was nine, I was having severe suicidal ideation. I was bullied and teased pretty much every day in school and mostly teased and no one knew about this until I was 21 and I could no longer keep it a secret and entered a hospital at which point I was diagnosed with bipolar disorder when I was just turning 22. And it continued throughout my adult life and I never made an attempt, but it just kept getting worse and worse: When it was bad, when it was good, I was fine. I functioned very well in the world and funny enough, I went to study psychology in college but couldn't complete it because of the bipolar disorder, not knowing what it was and it just, I'd be fine for several years and then it would come back. It would always be mostly suicidal thoughts. Eventually I started when it really got bad, my husband and I were both going through it at the same time, taking turns going into hospitals and also I'm a mime. I do mime skits on mental health issues and was performing.

Dr. Ken Duckworth (06:29): Creativity is a big part of who you are.

Janet Berkowitz (06:31): What's that? Creativity? Yeah, this is creativity. My artwork, my dancing, all of that is what really saved my life a lot. And finally my husband and I decided to start our own business. It's now called Creative Crisis Care and we were doing all kinds of workshops at conferences and whatnot on suicide prevention. We designed a workshop to help consumers, mental health consumers and clinicians to work together. And we were doing great together. We were so successful at what we were doing, but he was dying. He was slowly dying. He was born with a lot of physical issues and I was terrified that I would end up in a state hospital for life after he died and I didn't. He died and I made it. I kept going doing his work, and my sister has been an integral part of my healing. She's really helped me to continue living in the world physically by buying me a condo and just helping me in so many ways. And I love working in the mental health field. That's really what I wanted to do when I went to college. I tried four times to finish college and I just couldn't.

Dr. Ken Duckworth (07:52): And you found your way as a peer recovery specialist? Yes. So let's talk a little bit about how else Cynthia has been helpful to you and how that's evolved. And then we're going to hear from Cynthia.

Janet Berkowitz (08:04): Well, that's very interesting because I really didn't feel connected emotionally to her for a long time. I couldn't, wasn't available emotionally in a healthy way to connect much. And it was really, my husband was the one who really helped to bridge that gap. He kept writing her and emailing her and telling her what I was doing, and I was a little embarrassed by it, but I got what he was doing. He was trying to help bridge the gap. I had a lot of shame in my family with my family about this. We never talked about it. My parents didn't talk to me about it. They just wanted me to be, well, they weren't interested in the details about it. And I was very respectful of the fact that Cynthia was a psychiatrist. I didn't want to blur that line between sisterhood and professionalism. So I just kept seeking help everywhere else, and I didn't want to really bother her too much with this.

(09:06): But after Phil died, I needed so much help. And there she was. She just really jumped in, but she was there all along. I realize now as I look back, I just don't think I was very available emotionally and too scared to bother her, but it was painful. I wanted to be more connected. And on his deathbed is when it happened, I'll never forget it, she leaned over to me and she just said, I love you. And I saw it in her eyes in that moment. The connection was always there and that's when it really started to grow for me after that.

Dr. Ken Duckworth (09:46): Thank you, Janet. Cynthia, let's talk a little bit about your experience. So you're a child and adolescent psychiatrist, and you described to me in a previous conversation that your relationship with Janet was like fine wine. It took time to develop.

Janet Berkowitz (10:03): Oh yeah. It's really evolved a lot over the years, but I mean each individual changes over the years. When I look back on observing Janet, I guess I see I have a lot of perspective now. I see her course in episodes. So in 1979, she came home to come to my high school graduation and something was different.

Dr. Ken Duckworth (10:35): She's older than you are, right?

Cynthia Berkowitz (10:37): She's three years my senior and yeah, there was something dramatically different. And of course we were witnessing a manic episode, but what did we know? It was bewildering and terrifying to see somebody you love and you've known all these years suddenly to look so different. What's happening and what do you do? I'd say that that first encounter with the illness really felt very dramatic and had an enduring impact. It seems like everything in life has been different since then. And I think I'm proud to say that all of us, my parents now of blessed memory, Janet, myself, that we turned a rough illness into good, that we found ways to channel this each in our own way. But the first years of the illness, while they may not have had that quite the drama of that first week, they were really rough years of instability.

(11:57): And then, I don't know, Janet, if you don't mind telling the story, you were reluctant to take medicines then. There was a turning point as my mother told the story to me, she said Janet needed to live at home. And my parents were incredibly warm, devoted people, not perfect. They had their struggles. But finally my mother, who would do anything to protect my sister, was just really at the end of her rope. They used to but heads a lot. And my mother said, if you want to stay at home, you have to take your medicine. So that was one turning point where Janet started taking the medicine. The other was her husband, Phil, who was such a phenomenal human being, just really brilliant and also creative. The two of them were an amazing match, and together they did what I call, they formed a pay it forward community. So they were involved in a number of support groups. And when Joe was struggling, one day Joe would call Sue and stay on the phone for hours. And when Sue was upset, then she'd call Jim and it just was a cycle of everybody helping each other out, that they still do ---

Dr. Ken Duckworth (13:21): True peer support,

Janet Berkowitz (13:23): True peer support. And we lost Phil to heart failure. But Phil has a legacy. And when he died, my son Isaiah came to me in tears one night, says, mom, what's going to happen to Aunt Janet? She just lost her husband. What's her life going to be like? How is she going to go on? And what time has shown is that what Janet and Phil built together endures. That community that they shaped together has been so wonderful for Janet.

Dr. Ken Duckworth (14:06): What has surprised you the most about your sibling?

Cynthia Berkowitz (14:10): Well, I can say this, it was really hard back 40 years ago to foresee this moment, on a number of levels. It was hard to foresee Janet's doing so well and doing so much we're so grateful. But it was also hard to foresee overcoming stigma. I mean, stigma is so much of the story that was really tough. It was a secret. So it's just such a great journey to go from feeling like you've got this huge secret to talking to everybody. And one of my favorite things to do is when I'm working with families is to tell them that we've struggled with mental illness in my family. That you, I love it. It's such a joy to share this with people.

Dr. Ken Duckworth (15:13): "Psychiatrists as people."

Cynthia Berkowitz (15:15): That's Yeah, that's good.

Dr. Ken Duckworth (15:17): Janet, what surprised you the most about your sister, Cynthia, over these years?

Janet Berkowitz (15:23): What really started to surprise me was when she started calling me to ask for support with her children or just advice about things. And I thought, she wants to know what I think that means I'm well enough. I'm well, if she's asking me for support, that was what really started to blow me away. And I treasure that.

Dr. Ken Duckworth (15:48): So it isn't psychiatrist peer, it's now friends.

Cynthia Berkowitz (15:52): She's become friends more and more.

Dr. Ken Duckworth (15:56): Advising each other. Yeah, that's great.

Janet Berkowitz (15:59): For me as a bipolar, as a mental health consumer, I call it challenger. I don't like the word consumer. I think that its stigma is so strong so that when I'm codependent, I like to know that people respect me. And as I respect myself more, it's not that I need it so much from out there. At first, when I was in the early two thousands, it was like, I want Cindy to like me. I want her to respect me. And that's why my husband kept writing her. He was trying to make that happen. Now I respect myself. And so her respect of me is just a gift. It's not like this thing I have to have. It's just a nice little extra thing in my life.

Dr. Ken Duckworth (16:45): It's also happened naturally.

Janet Berkowitz (16:47): Yeah, it's happening more and more naturally. Yes.

Dr. Ken Duckworth (16:50): For Cynthia and Janet, you mentioned the idea of shame and isolation and not talking about it. And of course you're in the sixties, seventies and eighties, in some of these key years, do you see this getting better over time? Here we are in 2023.

Cynthia Berkowitz (17:06): Oh yes, absolutely. There was just so much more conversation about mental illness and thank God, because I mean, when I was in college, there used to be a lot more car accidents. Excuse me. High school. There were 1% of the population died in a car accident. So people talked a lot about car safety, right? Well, two to 3% of the population gets a serious mental illness. Why aren't we talking about that? Saying things to our kids like, okay, these are the things that you do to protect yourself. This can happen. But also to say, but if it happens, we'll deal with it because it's part of life. And to say if sometimes it can happen to your friend. My younger son called up one night, he said, I have a friend Joe. There are actually two Joes, Joe number one, and Joe number two, he was describing bipolar disorder to me. So this is part of life. And kids see it and instead of saying, oh no, say, well, this happens. We have treatments for it, and there are things that we can do to help people.

Dr. Ken Duckworth (18:22): This is a common and ordinary part of life that we talk about more. That's Janet. What is your take on this, the change you've seen?

Janet Berkowitz (18:29): Do you mean better in mental health field altogether or between us?

Dr. Ken Duckworth (18:35): Well, that's a good question. You can take it in either direction. I was asking bigger, but I'm interested in between too.

Janet Berkowitz (18:41): Let me say something about that. I am on the New Jersey Suicide Prevention Committee. I'm the only peer on it, and I have to work hard to speak up for the peer voice. And I'll tell you that I'm a little appalled still at how mental health clinicians overall, they're having trouble bringing our voice in. They like to, it seems to me, and from what I'm hearing, they like to say, Hey, here's the peer, and look how we're helping them. But they don't really seem to want to hear our voice. And I keep raising my hand and saying, guys, you've got to have more of us in your conference. You've got to include our voice more. And some of the higher ups are really not hearing this. I'll give you an example. The other day, one of them said, well, I think we should have saving lives in our title of our conference. And I said, no, no, no. We don't like the idea of being rescued. For me, I don't like the idea of somebody saying they saved my life. Because what if I'm suicidal tomorrow? Then I feel guilty. They thought they saved my life and now

Dr. Ken Duckworth (19:51): Right.

Janet Berkowitz (19:51): I'm not doing well today. Or if I say I saved someone's life and then tomorrow they're suicidal, I'm like, what did I do wrong? I didn't save their lives.

Dr. Ken Duckworth (20:00): What kind of save was that?

Janet Berkowitz (20:02): Right? So things like this need to be ironed out still. There's a lot of this. I put that under stigma. There's a lot of that stuff still going on, but it's better. My God, yes. It's better by far than when I was diagnosed in 1980, my mother was telling me, don't talk about it. Don't tell anybody about it. And I said, ma, I need to talk about this. I really do.

Dr. Ken Duckworth (20:26): Alright, I'm going to switch now to Emma and Liam. I want to thank

Emma Winters and her brother,

Liam Winters. Liam, I want to start with you. Tell me about your mental health experience and how it intersects and overlaps with Emma's and what you've learned together and individually.

Liam Winters (20:45): Sure. Absolutely. Thanks for having us, Ken. So I was first started experiencing mental health symptoms when I was about 12 or 13 years old. Kind of what started as a mild depression, festered into more serious depression until I was about 14. And I also struggled with anxiety for some years. Ended up going to college. Once I got there, I actually dropped out of college two consecutive times and then went back. And then about a year after that was diagnosed with bipolar disorder and voluntarily check myself into a inpatient mental health facility where I was correctly diagnosed with bipolar disorder in my opinion. And then also treated with medication as well, which has been very, very instrumental throughout my life. And after I ended up finishing college and my master's degree, I went to work for NAMI National for about two years. I think I was 23 at the time Emma was diagnosed. And my mom gave me a call and just said, Hey, don't freak out. I knew it was weird. My mom called me at 10:00 PM and my mom goes to bed at 9:00 PM every night.

Dr. Ken Duckworth (22:04): Something's up.

Liam Winters (22:05): Yeah. But she said, yeah, don't freak out. But Emma just got diagnosed with bipolar disorder and is now she's okay. Which she's like somewhere safe. So that was just a really freaky experience. And then Emma also spent some time in an inpatient facility. And that was some of the, definitely some, it was really tough to see someone struggle with something that I thought in many ways was similar to what I had experienced, but also just that she had to have her own experience and learn her own coping skills. And I hope I did a good job, not oversharing, oh, you got to read this book, it'll change your life.

Dr. Ken Duckworth (22:52): It's complicated. A young man in his twenties integrating this idea of a diagnosis into your own life and then your beloved younger sister develops something. Right?

Liam Winters (23:02): Yeah, I think the tools that I probably utilize would be different than the most effective tools for someone else. So I try to be conscious of that. Although I probably was overzealous to jump in and help, but I'll let Emma speak to that because she would be better positioned to let,

Dr. Ken Duckworth (23:18): Emma, how do you remember this experience of getting a diagnosis knowing that Liam has walked this path? Was that helpful to you?

Emma Winters (23:29): Yeah, it definitely was. Ken. So just to backtrack a little bit about a year before I got diagnosed with bipolar disorder, I had a bad reaction to an antidepressant medication and I knew that my brother was bipolar and I did the WebMD thing and it said that that kind of reaction could be common with someone with bipolar disorder. And essentially I talked to the doctor and they took me off the medication, but I didn't really get a lot of warning or concern that I might actually be bipolar in that moment.

Dr. Ken Duckworth (24:13): There wasn't a big stop sign that said, wait a minute. Your response is a big clue to potential risk going forward.

Emma Winters (24:20): Yeah, there was not, and there wasn't a lot of what to do if X happens to you in the future. So basically I just lived the next year doing absolutely everything I could to treat my depression. So I took a different medication. I trained for a marathon because if you're already miserable, you might as well run. And then I had a really severe manic episode and I was hospitalized in McLean Hospital

Dr. Ken Duckworth (24:57): Outside of Boston,

Emma Winters (24:59): And I was attending Boston College at the time. So that's kind of one of their go-tos for students who need it. But yeah, I think it was really helpful to know Liam's diagnosis and to know what happened because honestly, when I was in that hospital, even though I was manic and on a lot of medications to try and stop the mania, it wasn't really a very hard thing to accept. I think the doctors, when they kind of give you that news of like, well, we still are observing you, but we think it's probably this and they're being very sensitive because everyone's different in how they would receive that information. But for me, I was kind of like, yeah, that totally adds up. I'm glad there's kind of an explanation for what happened to me. And I do have this in my family, so I'm not going to say it was nice because no one wants to have that experience of being in a psychiatric unit, but there is something helpful about it not being fully a shock. And I already knew some things about the illness. And so in a sense, it was helpful from my perspective to know.

Liam Winters (26:21): I did not feel that way at all. Sorry.

Dr. Ken Duckworth (26:24): During your experience or during Emma's experience, Liam?

Liam Winters (26:28): During my own. When I was told that I didn't know anyone who lived with bipolar disorder, I don't think ever, and I knew a lot about living with depression, but I never thought being diagnosed as bipolar was it would ever be something that would relate to me. And so I definitely fought that a lot.

Dr. Ken Duckworth (26:52): So your experience of acceptance of it is very different, it sounds like.

Liam Winters (26:58): Yes. Kind of night and day. I'm glad to hear that helped Emma because ---

Dr. Ken Duckworth (27:03): It sounds like the journey that you had did help Emma go through a much quicker process.

Emma Winters (27:09): Well, not that I golf, but I have mini golfed and it's sort of like the thing where you don't want to go first. You want to go towards the end, so you see everyone else shoot the hole. So that's kind of like the coming second part of being the second sibling to get diagnosed with bipolar disorder.

Dr. Ken Duckworth (27:27): If you bang it off that two by four it might work, watching these other people go, it doesn't work a bit. That's not a winning game going up the big hill. I love that metaphor. That's great. So you really benefited from that. And Cynthia and Janet talked a lot about shame and isolation and not talking about it. And here you have a brother who is reaching out to you because he knows what this is like.

Emma Winters (27:52): And even when I was in the hospital, I remember recalling a conversation with my other brother, my oldest brother Drew, and I was talking to him because we also have a parent who's chose not to treat their mental illness in any way and really kind of not done well because of that. And I remember having a conversation with my oldest brother and saying, am I going to end up like that? And he was like, my older brother was like, look how well Liam is doing. You're going to have a life. You're going to take this seriously. I know you're going to pursue treatment. So yeah, just having an example of someone who, I know Liam was still working on acceptance at that point, but just having an example of someone who was working on that and who was taking it seriously.

Dr. Ken Duckworth (28:50): Let's talk a little bit about Emma and Liam, how you're doing now. You're both young, you've had relatively short number of years to integrate all this into your sense of self. How are you both doing now?

Liam Winters (29:06): Good, overall good. I feel very, very fortunate. I was able to work at the exact organization that I wanted to work out of school, which was something that I felt extremely, extremely lucky to do. Did not like living in the DC area personally. So got another job. And now I live in Richmond, Virginia with my girlfriend. And in terms of my overall mental health, definitely definitely ups and downs still and definitely have challenges with bipolar disorder, but I guess those peaks and valleys have really narrowed in. And so I don't get so depressed that I can't get out of bed for two months at a time. It's like I feel really bad for a week and then really, really bad for three days and I start to feel better. And it's like that sort of change allows me to live a more consistent life where all these other pieces of my life aren't constantly disrupted by this mood disorder. There's very few jobs that will allow you to just not work for two months.

Dr. Ken Duckworth (30:14): What are the tools that are helping you?

Liam Winters (30:17): I think I'm really fortunate to have supportive family friends. For me, I obviously take medication and go to therapy. Exercise is really, really important to me. Recently I hadn't been able to exercise quite as much. I was just working a ton at my job and it really got to me and affected my mood. And now that I'm back going to the gym four or five times a week, it is so important for me to do that. And I would describe it as the second most important thing other than taking my medicine every day.

Dr. Ken Duckworth (30:51): And Emma, how are you doing now?

Emma Winters (30:52): Yeah, I'm doing doing well overall. I know that Cynthia and Janet earlier mentioned some of that early intervention, and I think I did have that. I had one manic episode and it was severe, but I haven't had another episode like that. I've dealt with some depression over the years still. But I think overall I'm happy and I think I'm getting to a place of gratitude for where I am at this life, at this stage of life, given everything that I've experienced and to look back and think like, wow, I was there six years ago now. Now I'm here. And have an appreciation of having come a long way.

Dr. Ken Duckworth (31:59): So it sounds like both of you are really deep into a path of recovery. You've sorted a lot of things for yourselves. How do you communicate with each other? How do you help each other? Do you talk about this with each other?

Emma Winters (32:13): Yeah, we do. And I think for me, one thing that's helpful about talking to Liam is that sometimes it's really nice to have a really honest conversation with someone without an overreaction. I think sometimes if you just generally talk to a lay person and are like, I'm really depressed, they can kind of freak out and not know how to handle that. But I think sometimes that overreaction when you're not at a crisis point but you're just feeling really bad. It can be unhelpful. And I think just having someone who has been through it and kind of knows the right level of reaction to closure, it's very helpful. And I think many people don't know that intuitively, and it doesn't mean they're bad people or they're not a good friend or they're not a good whatever. But if you haven't really been around the mental health space, it can be hard to hear some of that stuff and suss out a seriousness.

Dr. Ken Duckworth (33:38): What are your favorite things to talk about with Liam that have nothing to do with mental health?

Emma Winters (33:45): What do you think, Liam?

Dr. Ken Duckworth (33:46): Do you have favorite interests or topics or things you love together?

Liam Winters (33:50): So, I've always been very into politics. And Emma, true recently based on events that have been occurring in our country, got more and more into politics, I don't think, and now she loves to talk about it. So we talk about that a lot.

Emma Winters (34:05): Yeah, we also make fun of each other a lot, Ken,

Dr. Ken Duckworth (34:10): A sign of love, right?

Emma Winters (34:13): Yeah. I think we really have a good sense of humor in our family, and it has made those difficult moments more livable, but it's also something we just enjoy.

Liam Winters (34:31): I feel like we can joke about our mental illnesses in a way that would come across as quite offensive to me if I didn't know the person on the talking or receiving end of that joke. So I appreciate that because that is how we do get through tough moments as a family together, and the fact that I can do that is helpful.

Dr. Ken Duckworth (34:54): What else do we have to say about the sibling relationships and communications? So Cynthia and Janet, or Liam and Emma, do you have anything you want to say?

Janet Berkowitz (35:03): I really related to what you said about finding out what your diagnosis was because funny to me, I didn't know what was happening to me in 1979 and I thought I was getting schizophrenic. I call it madness, this feeling of like, I can't stop thinking about suicide. It's running across in my head constantly. And I had studied psychology. I'd taken Psych 101 in college and I aced it, but I didn't remember manic depression, which is what they called it then. So all I could think of was I'm schizophrenic. So when I got the diagnosis of bipolar, I was so relieved that it wasn't what I thought it was, and it really was a map. It put me on the map. It helped guide me to understand what I had and how to deal with it. So thank you for, I don't hear people say that ever, so I was grateful to hear that.

Liam Winters (35:59): Yeah, I think going off of what said Janet, that process of discovery in terms of, okay, now I have to learn, I don't know anything about this condition at all because sort of how or why would I had always tried to be an empathetic person overall, but this is something I'd never come in contact with at all, and I think just being able to learn from different books that I picked up or one of the reasons I wanted to work at NAMI was specifically because that organization was really, really helpful in terms of learning about my own condition and my recovery and why it was important for me to take medication even though it maybe had some really detrimental side effects, all that process, I think I'm very happy that I was diagnosed when I was. I just feel like it really is an iterative learning process and I wish maybe when I was starting I had more kind of a baseline knowledge so that it didn't feel like starting completely from scratch.

Dr. Ken Duckworth (37:10): You were able to mentor Emma a bit in this because you had actually walked the road. You were the first person on the mini golf course.

Liam Winters (37:19): Emma, we're going to have to play mini golf when we're in Charleston.

Emma Winters (37:24): I'll win. He'll go first and then I'll win.

Liam Winters (37:29): Yeah, I guess I think learning to think of my illness is like this is just something that happens to me and I happen to have this thing. It can be challenging at times, but everyone has sort of their own cross to bear and I want to do the best job I can taking care of myself. As Emma brought up earlier, we did have a parent and I saw what that looked like when someone does not do that, and I almost had a sense of fear. I didn't want to be that person, so I adapted to feeling like, okay, I need to make these changes because that's the most important thing in life, especially when I was younger. I felt this, I don't feel this as much now, but I need to live, well, not really for myself so much, but for all the people around me. I don't want to be in a constant state of crisis and negatively impacting their lives.

Dr. Ken Duckworth (38:26): You're really big on learning. Learning from that experience, learning to help yourself, learning to support Emma, it's impressive. Liam.

Janet Berkowitz (38:35): Liam, can I ask you how old you are?

Liam Winters (38:38): For sure. I'm 28. I'm going to be 29 soon.

Janet Berkowitz (38:43): Yeah, you're half our age. And I do want to say I see a benefit to, if one stays on the path of recovery, I just think it gets easier as you get older. I just have noticed a difference in me. It's just like I'm giving up worry more and more and I'm accepting this bipolar more and more. It just, I don't know. I'm not saying that's true for everyone, but I do see it a lot with older people who really do the work.

Cynthia Berkowitz (39:12): It's amazing how you just keep learning. I find that for myself, it's just always a process of learning, whether for people who have the illness, people who are accompanying them, it's always a new learning.

Dr. Ken Duckworth (39:34): Emma and Liam, do you feel that this is something we can talk about? Janet and Cynthia talked about the seventies and eighties and the nineties and that wasn't something, but being in your twenties at this moment when mental health appears to be more open, have you experienced that or do you still find some of the same challenges?

Liam Winters (39:59): I think there is definitely that stigma, but as I've gotten older and seriously in the last five things, things have changed so dramatically. I don't mind really talking about it with myself. I kind of never want it to be the first thing that people know about me.

Dr. Ken Duckworth (40:14): Right? There's so much more to you than that.

Liam Winters (40:17): And they bring any attachments or stigmas that they might have associated with that. Whereas if I know someone for five months, they know me as a person. This becomes part of who I am and not the sum of who I am and doesn't color their other things that I might tell them about me because I don't know what that stigma is. So I think stigma really, I do feel like I can talk about it more and when I meet new people occasionally it's something I reveal, but it's not something I lead with unless it's context like this.

Dr. Ken Duckworth (40:51): Emma, do you have a thought or perspective on that?

Emma Winters (40:54): Yeah, I tend to agree with Liam. It's definitely something I talk about. I'm pretty open with most of my friends and family, but yeah, it may not be the first thing that I choose to lead off with. I would say probably 98% of the time I get a good or neutral reaction when I have chosen to talk to someone in my life about it. And probably the 2% is people I don't respect that much anyway, so it's sort of like, okay, well.

Dr. Ken Duckworth (41:33): Well, before we stop, I want to thank everybody for taking the time and for having these conversations. I think they're going to help some clinicians. Is there anything any of you want to say before we close?

Emma Winters (41:45): One more thing I'll say is just you don't have to be perfect. If your sibling has a mental illness, you can still be mean to them. You can still get mad at them. You can still have all of ---

Janet Berkowitz (42:00): I'm on it.

Emma Winters (42:05): You can still have all the normal emotions that you have towards a sibling. You're entitled to that. It's okay. Don't feel like you have to be perfect towards your sibling. I think sometimes people feel that burden.

Dr. Ken Duckworth (42:25): Well said, being a sibling ---

Cynthia Berkowitz (42:27): I think it's a reality also that sometimes when one person in the family is struggling, people feel like, well, we have to alter the way that we talk to each other and communicate with each other and we have to tone it down, which this can be very beneficial.

Janet Berkowitz (42:43): There's a line in my play that says, faking it was my superpower and now authenticity is what I go for, and that means sharing it all. But I think what Cynthia's talking about is what I call containment, is learning when to contain it. And there's times that I recognize it's important to do that, but my motto is just allow and accept. Allow all the feelings, accept the fact that I'm not ready to forgive someone and that I'm pissed off. They say that anger is to the bipolar as sugar is to the sugarholic and I still get angry and I have these little mini tirades and so I've just learned to accept myself when I'm like that, forgive myself. And that's really helping me a lot. Just allow, accept.

Liam Winters (43:46): Yeah, just closing words. First of all, Janet, that is an ongoing process for me. It's really illuminating to hear you say that learning to forgive yourself is, I still live with a lot of guilt. I think it was us growing up Catholic perhaps that made that this be something I deal with. But no, I wanted to just first thank you Ken and also you, Cynthia and Janet. I really do mean this. Y'all being really open about your experiences really did pave the way for someone like me to so that things were just a little bit easier when I was a scared 20-year-old kid. So thank you, and I really mean that from the bottom of my heart.

Dr. Ken Duckworth (44:30): I want to thank you all for having this important conversation about communication in families.

Emma Winters (44:36): Bye, Ken.

Janet Berkowitz (44:37): Bye-bye. Thank you, Ken.

Cynthia Berkowitz (44:39): Bye-bye.

Dr. Ken Duckworth (44:45): This has been The Medical Mind, a podcast from the National Alliance on Mental Illness co-presented by SMI Adviser. The mission of SMI Adviser is to advance the use of a person-centered approach to care that ensures people who have serious mental illness and their families find the treatment and support they need. Learn more at If you're in need of acute support and you're in the United States, call 988 for the Suicide and Crisis Lifeline. This is available 24-7. You may also receive 24/7 crisis support by texting NAMI to 741741. If you want to have a conversation with a trained volunteer, you can contact the NAMI helpline at . NAMI helpline is available from 10:00 a.m. to 10:00 p.m. Eastern Monday through Friday. This podcast was produced by Katie Harris and John Moe. We get engineering help from John Miller. I'm

Dr. Ken Duckworth and thank you for listening.

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