Release Stigma and Hold on to Hope Featuring Carnie Wilson

Learning to navigate depression and other mental health conditions takes a village of support and care. In this episode, Carnie Wilson, founding member of Wilson Philips, joins NAMI CEO Daniel H. Gillison, Jr. to discuss her mental health journey. Growing up, Carnie experienced depression and anxiety and sought to numb her pain. Today, she is an advocate for mental health and reducing the stigma surrounding effects of tardive dyskinesia (TD). Listeners will hear from Carnie about how she advocates for mental health, her experiences with mental health, and more. 

You can find additional episodes of this NAMI podcast and others at nami.org/podcast.

"Hope Starts With Us" is a podcast by NAMI, the National Alliance on Mental Illness. It is hosted by NAMI CEO Daniel H. Gillison, Jr.

Episode production is provided by NAMI staff, including Traci Coulter and Connor Larsen.

Transcript

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Why did I feel the shame? And I thought to myself, I can't do this anymore because the bottom line is somebody else out there is feeling the way I'm feeling. And if I open up and share this and not be in the darkness about it, that I know that there is solution. It takes people around you. Welcome to Hope Starts With Us, a podcast by NAMI, the National Alliance on Mental Illness. My name is Dan Gillison and I'm the CEO for NAMI. NAMI started this podcast because we believe that hope starts with us. All of us. Hope starts with us talking about mental health. Hope starts with us making information accessible. Hope starts with us providing resources and practical advice. Hope starts with us sharing our stories and hope starts with us breaking the stigma. If you or a loved one is struggling with a mental health condition and have been looking for hope. We made this podcast for you. Hope starts with all of us. Hope is a collective. We hope that each episode, with each conversation brings you into that collective so you know you are not alone. So let me introduce our guest. And I am so, so excited to talk to this person today. Carnie Wilson, born into the music world, has made her own mark on the entertainment world as a singer, TV personality, and actress. She is a founding member of the pop trio Wilson Phillips. Beyond her music career, Carnie has appeared on television as a host and guest star, and even made a memorable cameo in the comedy film Bridesmaids. Her diverse talents continue to inspire and entertain audiences worldwide. She loves cooking and baking with her family and resides in California with her family. Carnie Wilson has always been an advocate for helping and empowering others. In the past, she's openly shared her experiences with postpartum depression and addiction and found strength by being open about her mental health challenges, as well as seeking treatment and support. Now, it means so much to her to be able to use her voice to be open about her own mental health journey, with the hope that she can help people facing their own challenges. Hope starts with us. All of us. Carnie, thank you for joining this podcast. Would you start by telling us a little bit more about yourself, such as your personal interests or activities that you enjoy? First of all, thank you for that beautiful introduction. Wow. And I'm really, really glad to be here with you, Dan. I am a big supporter of everything that you just said, and it's like I was thinking those exact words, and I just want to say that just before I get to my thing,"hope" is one of my favorite words ever. And I think that, especially now, these days, we need more hope. And there is hope. So I never, ever, if we can start it and end this with hope, I think that's the most important thing. It's funny, growing up in a famous family, I think that you automatically are perceived a certain way to the public and you just never know what people who they are, how they are, their family, all that, all those dynamics until you go to their home or you are a part of their lives. So it's not always what it appears to be. And maybe that is with everyone actually, because I like to look at everyone on an even playing field. We are all humans. We really are all the same. So I look for the similarities, not the differences. So by me being very public about my story all these years, I think that it has, I don't know what the word is, humanized me or made people feel like they can relate to me as just a human being. So, yeah, I mean, my childhood was different in many respects. I did grow up in a household with a father who struggled with mental illness. And on my mother's side, my grandmother May, she had depression and anxiety from way back when I can remember. She was living with, you know, some kind of depression for as long as I can remember. And she sort of, like, would go into a room for a few days and have what my mom was saying, she's having a mental breakdown. And this is the, you know, the 50s generation, you know, and that sort of era, 50s and 60s where we've come so far, we know our resources are so much better now, right Dan? And back then we just thought grandma was really sensitive. My daddy was, you know, this Beach Boy, creating all this music, bringing so much love into the world and inside, I think he was just really, you know, going through it and realizing that whether it was, you know, psychotic episodes, or voices or drugs, that addiction, whatever it was that was fueling, his mental illness. There was treatment in many ways, but he never really got it. He never got that real full treatment and diagnosis until years and years later in his 50s, where he was diagnosed with schizoaffective disorder. And he just-- he has-- he blows my mind. He continues to blow my mind. He passed away in June and it's been so hard. But I don't think I've ever even been more aware of the impact that his music has had. His story has had, the power in his sort of survival skills. He was the strongest person I've ever known and outlived and survived everybody on his side of the family, which is just beautiful and mind blowing. But he was also a very spiritual man. And you know that song "God Only Knows," I one time I asked him, I said,"that's a love song, right? What's that song about?" He said, no, no, that's a spiritual song. I said, "what?" He says, "no, that's a that's about God. That's about spirituality." So I've learned a lot from him in my life about how, as I had been faced with the genetics, being predisposed to depression, anxiety, I've been predisposed to that. And I know who I am, and I've taken my challenges in my own hands. And it's never been like a linear thing. It's up, it's down. It's sideways, it's right, it's left. It's, you know. But I've learned so much, especially in the last year with the work that I've been doing for my campaign. I know we'll get into that. That was a very long answer to your question, but I actually didn't even touch on my interests. And, I mean, I'm 57 years old. I have two daughters, Lola and Lucy. This last year has been, it's been a whopper. It truly, openly can say that. It's been a whopper for my family, for all of us. And the beautiful part about it, Dan, is that we have collectively been so open about it to each other. We have all seeked treatment. My kids are in therapy. That is that is fantastic. As you've shared a bit about your family. And Carnie, you know, if we go back to Wilson Phillips and us being the consumers of you and your family's music, you know, we see you sitting in the audience and you on the stage. And so we're looking at the cover of your book, and what you've just done is you've taken us into the table of contents and the chapters, and that's what we're talking about in terms of families, really, and individuals really understanding what their makeup is in its entirety. So, thank you for sharing that with us. Would you share a little bit about your mental health journey and what inspires you to talk about your experience? Because you don't have to do it. Thank you for doing it. First of all, thank you because you are helping so many. But what inspired you to talk about your experience and from that experience, what would you like to share as a part of your story? I was born to connect with people. That's the truth. And the opposite of connection to me is isolation, really. And I know from my own experience, when I was in that very dark, dark place of addiction and depression and feeling so isolated and not-- and feeling the shame, I felt shame. You know, there's pressure. Everybody has pressure in their lives. We all have pressure. And it can vary and it can come from different places. But the root of it all is that I couldn't, I couldn't go any longer. I wanted to live, I wanted to live. And the more--and when I when I sought my treatment, I got sober. I started really delving into, what was happening inside of me, you know? Why was I wanting to isolate? Why did I feel the shame? And I thought to myself, I can't do this anymore because the bottom line is somebody else out there is feeling the way I'm feeling. And if I open up and share this and not be in the darkness about it, that I know that there is solution. It takes people around you. There is a--I reached a desperate, place. I reached total, like, surrender. I came to a surrender that I needed help. And I think that people struggle with that because they think it's weak or shows vulnerability. But I really believe that people will actually find their strength and their courage in admitting that they need their help and that they're vulnerable and whatever is going on in their brain, whether it's this physical thing where you know that the dopamine or the, you know, all the neurons or the synapse, whatever that is, you know, you can seek the treatment that you need. And it all starts with the honesty inside of you and your heart reaching out for help, knowing that there are, you know, organizations like you have that offer the resources that there are people in the same boat, but we can't get anywhere until we raise your hand and say, "I need help." And I am not alone. And there is a way to get better. And also what I realize is that, you know, there's no graduation here. There's a school. We're all in it together. We're all students, but there is no graduation. You know, it's baby steps and it's progress, not perfection. And everybody's an individual. So by me opening up and sharing, it made me feel such a relief. And, you know, in terms of what I've been doing the last year, it really, really has opened my own eyes to my own anxiety. So it's not so much really depression that I felt the last year because, because I've been involved with connecting with Carnie Campaign, you know, as a spokesperson for Neurocrine Biosciences, this has been-- it has been incredible to raise this awareness for mental health, being the advocate, but also TD, tardive dyskinesia, which by the way is, it's a visual condition. It is uncontrollable movements that people that are already suffering from mental illness, they take these medications that help them make them more even. It really has helped, but it's like a double whammy. They get this condition and it's a physical thing that people see. One of the things that I've been talking about with the ambassadors who and the patients living with TD that we've connected with is that I once had, twice actually, had Bell's palsy. So it's freezing of the muscles on one side of the face. It's a neurological condition, but I remember having to be in public, not being able to move one side of my face. I even walked down a red carpet for an ABC mini-series that I acted in, and I was, you know, on the red carpet, smiling like this, waving my hand. I couldn't move the side of my face and I remember feeling so judged. And I think that people, whether it's the mental illness or tardive dyskinesia, they feel judged. And that's what I'm trying to break through that and let them know that, you know, we have compassion. We have patience for people that need, they need that. And it's here, and I am a part of being an advocate with them. You know, it is so important to, again, share your story, but to be an ambassador and to let people know why you're an ambassador and that you're living with, and you are achieving with and the journey is continuous, but you're living with. And tardive dyskinesia is one of those situations that you're working on balancing one thing that creates the other thing. And both of them can have society interacting with you a certain way, because to a certain extent, we're judging because of being that cosmetic society. So we like to say at NAMI, "meet people where they are, not where we want them to be," and making sure people know they're not alone. Those are two of our mantras. So thank you for sharing your story and what you're doing. And, what would you say in regards to, you know, you did share a little bit, but let me back up a second and say, first of all, condolences on the loss of your dad. And, thank you for sharing that. And you also talked about his legacy and what you learned from him, and you shared a little bit about your family. How have the experiences of the mental health challenges in your family impacted you? You know, in a way, I feel like it gives me that comfort knowing that I know where I come from, you know. It is all about self-discovery. But when you do discover these things about yourself, you know, there are moments when you can feel like-- I remember when my mother, when I was very young, very, very young, maybe 5 or 6, like just kindergarten. And she said, you know, your father has a mental illness, but his heart is good and his music is helping people. I remember, you know, she said he's not going to be your average, normal father, but he loves you very much and we have to support him. I was just a little, little kid, and there was a part of me that felt, oh, my family's different. Oh, there's something different about it. I didn't go to the dinner table every night and have dinner and sit around the table and talk about, you know, how was your day? How was your day? My father ate his steak in three seconds and was playing the piano already. It was an artistic environment. It was a fabulous and, you know, thriving environment musically. There were lots of people coming in and out of the house. And so I also went to a private school that had a lot of children that had famous parents in the music industry. So we had this sort of camaraderie. We understood that we kind of were cut from the same cloth like that. But I always felt like there was something different about our family because of, some of the, the, the mental illness that, you know, on both sides. So I could have sat around and said, oh, I'm cursed or oh, you know, this is just, this is too much. I'm doomed. You know, I can't say that there--there were times when I felt that way, and that's when my addiction started. So my addiction, the form of it was drinking, drugs, not heavy drugs, but a lot of marijuana and drinking. And drinking brought me down to the very, very bottom. It fueled my depression. But luckily, I found a 12-step program that has kept me sober for 21 years. I had--thank you. I've had a therapist that I've had since 19 years old. So through the ups and downs of my life, the challenges, you know, meeting a wonderful man who has been by my side for 27 years. I've been by his side. He understands me, I understand him. We're very different on the outside, my husband and I, even though he's a musician, he's real quiet, reserved. I'm real like, hey, what's up? You know, and it and it's great. And so there's that good dynamic. And then thank God, my children have never seen me drunk. My children have seen me go through difficult times and come out the other side. My example was my father. My grandmother sadly never got, really, diagnosed. She never got the gift of the treatment that is now available. But my father did, and he lived a long, healthy, happy life. And we had so much healing, so much healing. I sang with him. I performed with him. He walked me down the aisle. He was there for the birth of my children. He went through so much. And I'm just so, I'm so honored to be his daughter. And it just-- it's so beautiful that I can continue singing his songs, you know, carry on the tradition. And it makes me so emotional because I think about, you know, when I see the people in the audience, you know, and they come to these shows and they sing these songs, the joy that it brings them. You know, I believe music is healing and very powerful. And I think that the bottom line is it brings everybody together. And, you know, we need community. We need support. And, you know, that's what, that's what your organization offers. Hope and support, help. That's why we are across the country. And we're the largest grassroots mental health organization led by and in a lot of cases, individuals that have navigated the pain that they turned into their purpose and it's become their passion. So, we're so appreciative of everyone in the NAMI family that does this work. We like to say we're the DNA and in the communities across the US. So thank you for sharing your story. And I want to just go back to a few things. You talked about your dad, and you're carrying his legacy forward. And I just wanted to acknowledge that, Carnie, just for a second, as a son. As you are a daughter. Just wanted to say that, and kudos to you. And, yes, music is therapy and music is community. Music is that collective. And it's so important and it provides so much joy. You used the word joy. So thank you for sharing that because that's an operative word. And you also said something about you that makes you and I very similar. And we've only met one other time. But and you said "I was born to connect with people" and the folks that know me will tell you that they've heard me say this before. I love the industry of people. I don't do well in isolation. So, I love our connections in that way. And, it is so true. It is so true in terms of connecting with people. And the other thing you mentioned is, is as you share your story and that self-discovery is the vulnerability, and the vulnerability is strength. It is not weakness. So thank you for that. And it's so important that I repeat it for the audience and for us to repeat it for the audience to hear it. Vulnerability is strength. It is not weakness. You are not alone. So, and I'm just going over some of the things you said because it's so powerful and is so important to the audience. So thank you, Carnie. May I ask you this? You currently are advocating for mental health and what is the work that you're doing right now? You alluded to it earlier, but I wanted to give you the opportunity to share a little bit more about what you're doing in terms of tardive dyskinesia and the campaign that you're working on. Yes. I still think there's a stigma around mental health in general, because that's where that starts from. That's the umbrella. You know what I mean? The umbrella is mental health. That's where it starts. Mental illness, mental health, the awareness, the treatment, all of it. And, you know, I was approached by Neurocrine Biosciences and they, you know, I while I don't have tardive dyskinesia, I understand what it's like to suffer in that darkness and the unknown of, wait a minute, you know, I know there's something wrong. So I understand the mental health part, but I didn't even know what TD was. And when I--and that's why this year has been a beautiful year of education for me. And the underlying, the theme is, you know, erasing that stigma, having people reach out to their health care professional and say something's not right. I'm living with mental illness, but I have uncontrollable movements. My tongue won't stop darting in my face. My torso keeps moving. My limbs, my fingers. You know, my head is jerking. I have these uncontrolled movements, and, you know, there's 800,000 people in this country that have TD and 60% are undiagnosed. And I want to take that number down. I want to encourage people to, you know, look in that mirror and say, what am I noticing? What am I seeing here? Get that help and reach out. And that there is treatment. For me, it's-- the campaign is probably the most people thing I've ever been involved with, simply because I know we're making a difference. I mean, I'm praying we are. And of course, that's the goal, but it's raising that awareness. But I get to talk with the patients one on one. I get to sit down and hear their stories. And the most beautiful thing is they are their own advocate now. They weren't an advocate for so long because they had the shame. They had the fear, they had the unknown. And when they did reach out for help and they did get treatment, and they realized that they did find their hope and their help, that now they can share their stories and make such an impact. They've impacted me because they've inspired me. I know they're inspiring other people. And for example, the ambassadors. Moira, was a pastor and she was accused of chewing gum, of the movements in her-- when she would do her services, she could not stop moving. She was accused of chewing gum and she was doing her job wrong. And that was really hard for her. Coach "D" Devetria, an amazing woman with an amazing story. Suffered abuse and drug addiction and just a list. It was just mind blowing. I was very emotional hearing her story, and she said she found out that she had one of the worst cases of TD that they had ever seen to see her come out the other side, still battling with symptoms, but so much better now. Seeing her being an inspiration and not giving up was mind blowing. So--and then to Allison, who was a DJ in the public eye, couldn't sleep in bed with her husband, kicking him violently at night, twisting her torso so violently and suffers from bipolar depression, has come out the other side. Their lives have changed. And that's the goal here, is to raise this awareness, change lives. But, you know, I've been my own advocate, too. I can't sit back and be complacent. You know, I can't sit back. I can't rest on my laurels. I got to get out there and have that will to make a change for me and help others make a change for themselves. And that's what I've been doing with this campaign. It's been incredible. Wow, these are powerful stories. And thank you. Thank you for sharing that. And to each of them. And those that I just did not, repeat, thank you for lending your voice to this work in your story. And we know that, you know, as you mentioned, 60% are undiagnosed. So if we can remove--if we can reduce that number, 10 to 20 percentage points. Wow. I mean, and then and then actually get it to the point where it's 10% or less. Wouldn't that be wonderful? Wouldn't that just be wonderful? We will, Dan. We will. Yes. So, this is incredible. And you know, we also, say that, people don't care how much you know, until they know how much you care. And we know that the care that you're providing takes a lot of energy and it takes a lot of time. And thank you for doing that, Carnie, and lending your voice to this and to Neurocrine for their work here, because they-- it's a choice. And this also helps with care because we care. So, thank you to you and this work that you're doing. So as we, as we talk about hope, we always wrap up our conversations

with asking a question to every guest: 26:53

The world can be a difficult place, and sometimes it's hard to hold on to hope. That's why with each episode, we dedicate the last couple of minutes of the podcast to a special segment called Hold On to Hope. And it's really one really important question. What helps you hold on to hope, Carnie? Well, first of all, I can't,I can't miss pointing out the obvious that, you know, one of our--our biggest hit was called "Hold On." So that's-- I don't think that's a mistake here, Dan. It is so important to hold on for one more day. It's important to hold on. Although, I want to say we don't have to hold on anymore to get help. So I will say that. But we have to hold on to our--my faith is big. I'm a very spiritual person. I remain teachable, I remain hopeful, I acknowledge that it's baby steps. It can be one step forward, two steps back, three steps forward, one step back. Life is in session and there is no such thing as perfection. We grow, we learn. We reach our hand down. And we do hold on to hope. Because if we don't have hope, we have nothing. Hope is faith. Faith is hope. And you know, is it-- It's not a religion. It's not religion. It's a force. It's a power-- hope is a force. And I know that everybody is capable of tapping into it. Sometimes you just got to dip your little pinky toe in there and just feel what it feels like. When you suffer, when you live with any kind of addiction, mental illness, and you have that first sliver of hope, oh boy, that's what paves the way. And knowing that you can crack that door open and have that little light come in and know that it's possible to feel that hope. That's what I'm encouraging people to do. And I know that it's possible because I've done it myself. You have done it, and you've done it very successfully. And you just said something that--you said so much. But one thing, I mean, it was incredible, but I kept it. To the audience. Audience, "life is in session." Life is in session and then, yes, hold on. If you if you can go back to your music folks, go back and listen to "Hold On." Hang in there. This is powerful. And is there anything you'd like to leave our audience with as I get ready to close the session, Carnie? Yeah, I just want to say that I'm proud of everyone. I'm proud of anyone who's listening right now that has that first thought. Maybe they're thinking at the beginning of this podcast. They thought, you know, I'm going to I'm going to listen and see what I hear. And I still feel that scared. And what I hope, I hope for you, listeners, is that, maybe I helped you open--crack that door open a little bit and that you'll finally, finally make that phone call, have that conversation with yourself, with your spouse, with your kids, with your health care provider, with someone, and that you have opened your heart to the possibility of healing. So that's what I just want to say. And I'm honored to be here. I'm honored to be vulnerable. I'm honored to be strong. I'm honored for my life that I've experienced because every little experience has made me who I am today. The happy times, the sad times, the joy. I allow myself to feel joy. I want people to allow themselves to feel joy because we deserve it. That's it, that's it. And life is in session. And folks, you've been listening to Carnie Wilson from Wilson Phillips and again, Carnie does not have to lend her time and talent to this. She's doing it because she cares and it is all about hope. So this has been Hope Starts With Us, a podcast by NAMI, the National Alliance on Mental Illness. If you are looking for mental health resources, you are not alone. To connect with the NAMI HelpLine and find local resources, visit nami.org/help. Text "NAMI" to 62640 or dial 800-950-NAMI. Or if you are experiencing an immediate suicide, substance use, or mental health crisis, please call or text 988 to speak with the trained support specialist or visit 988lifeline.org. I'm Dan Gillison, your host. Thanks for listening and be well.