Voices of Recovery, Episode 20: Support from a Sibling Who’s Been There

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In the final episode of this limited series, Liam Winters is the second of four children in his family, just a couple years older than his sister, Emma. Both Liam and Emma struggled with depression in their early years and both ultimately developed bipolar disorder. They talk with Dr. Ken Duckworth, NAMI’s Chief Medical Officer, about the ways in which bipolar presented and the ways their family rallied around them in support. Emma and Liam also discuss how they continue to support one another in managing their disorder.

 

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Episode Transcript:

Dr. Ken Duckworth: [0:00] A note for our listeners. This podcast includes discussion of suicide that some people may find difficult.

[0:06] [background music]

Dr. Duckworth: [0:08] Welcome to "You Are Not Alone, Voices of Recovery." I'm Dr. Ken Duckworth. I'm a psychiatrist and I'm the chief medical officer for the National Alliance on Mental Illness, or NAMI.

[0:18] I'm the author of NAMI's first book, "You Are Not Alone, The NAMI Guide to Navigating Mental Health, With Advice from Experts and Wisdom from Real People and Family." I talked to over 100 people for that book, and I wanted to share some conversations that I feel have important takeaway lessons for us all.

[0:38] On this episode, I wanted to spotlight a pair of interviews I did with two siblings, Liam and Emma Winters. You represent the best of how siblings can support each other and stand in contrast to my own family where I grew up and a lot of families that I've come across, where communication hasn't been easy about these mental health conditions.

[1:01] Liam and Emma grew up in North Carolina, four kids in the family. Liam says he first noticed signs of depression at a fairly young age.

Liam Winters: [1:10] When I was very young, probably about 12, I remember me and my brothers would meet up with a bunch of guys and play Sharks and Minnows at the pool. I remembered sitting one day, staring at the pool, being like, "I feel so incredibly bad, and I have no idea. Bye."

[1:30] Then a year later, after expressing this to my mom, eventually I started therapy. It was put on a SSRI. I don't know.

[1:43] Then, middle school was really difficult as it was for a bunch of people, but especially being a guy who's struggling with that stuff. I was, for my age, relatively open but didn't go out of my way to like, "Hey, I have a…"

[1:58] My mom was very supportive, but I didn't always know the right things to say or do, which…I always knew that she cared about me and would do anything that I needed or pay for anything.

Dr. Duckworth: [2:10] Do you remember where you told her? Were you at home, at the kitchen table? Were you in the car when you said, "I'm distressed"? She said, "Let's get an evaluation or a therapist."

Liam: [2:18] I think I was having some trouble at school, and she was unsure if this was related to stuff that was going on with my family.

Dr. Duckworth: [2:26] Liam and Emma's parents split up during the kids' adolescents.

Liam: [2:30] During that time, I definitely struggled with depression and anxiety, but I had awesome friends and a number of good healthy outlets. I played rugby for 13 [inaudible] , which was awesome for me.

Dr. Duckworth: [2:46] All right. Anxiety, depression, but you have some coping skills. You have friends, you have outlets that are exercised, you have a supportive mother. How are the siblings doing with this entire split? Do you talk about it as a family or are you not able to do that?

Liam: [3:07] Overall, we did. We all handled it in our own ways. my little [inaudible] was very young. Maybe separate. I was 13, 14. My little brother was eight or nine. His awareness of the situation obviously wasn't where my other two siblings were.

[3:27] My older brother, he understood that he had to take a lot of weight on his shoulders. He internalized that in a way that was really positive. Made him work really hard. Got a full scholarship to UNC, Chapel Hill.

Dr. Duckworth: [3:45] Wow.

Liam: [3:48] My sister felt it pretty hard, too. Definitely was difficult for them as well.

Dr. Duckworth: [3:55] Let's talk about the therapist or the psychiatrist who prescribed medicine. They also do therapy. Was your first experience of professional treatment helpful? Would you have to shop around? The answer was no.

Liam: [4:09] I definitely had to shop around. My psychiatrist was, I'd say, very old school in that, "Just take this drug and you'll feel better." It was an SSRI, which obviously, rates of success aren't as high as many other medications. I've had the experience obviously of having mood stabilizers that had been tremendously helpful.

Dr. Duckworth: [4:31] Later, you had that.

Liam: [4:32] Yeah.

Dr. Duckworth: [4:32] The first guy out of the box was like, "Take what I prescribe. Do what I say."

Liam: [4:38] Yeah. I never really found a good therapist that I thought was helpful or I could understand until later after high school.

Dr. Duckworth: [4:50] You were engaged in a treatment. You were making an effort to work with this. Did you have thoughts of self-harm or suicidal thoughts, or was it never that bad, but you were just distressed a lot?

Liam: [5:03] I definitely did, more so when I was maybe 13 to 15 as I got into my groove in high school, made a lot more friends, and got super interested into politics and history. Basically, just anything I found fascinating, I was gravitating to.

[5:21] Between athletic, intellectual, and my social interest, I feel like I was pretty occupied and had a support system.

Dr. Duckworth: [5:29] Engaged and moving forward.

Liam: [5:31] Yeah.

Dr. Duckworth: [5:33] Where'd you go to college?

Liam: [5:38] I initially got a presidential scholarship to a very small school. You actually might know it, Hampshire College.

Dr. Duckworth: [5:44] Of course. That's legit.

Liam: [5:52] The whole new grades thing was very weird.

Dr. Duckworth: [5:55] When I was very modern at the time, we have this new ID. No grades, no responsibilities.

Liam: [6:01] [laughs] Basically, but I think being away from home, being away from my friends, and being in an environment that is, as you can imagine, so utterly different from a conservative Catholic school.

Dr. Duckworth: [6:14] Yes.

Liam: [6:16] I don't know. For me, it was challenging. I dropped out literally after three weeks.

Dr. Duckworth: [6:21] Because mental health symptoms or because overwhelmed culture change?

Liam: [6:26] Mental health symptoms, which were probably exacerbated by the cultural change. I was given Klonopin by my psychiatrist that I just talked about. He didn't tell me, "Don't drink when you're on these."

Dr. Duckworth: [6:48] Oh, my.

Liam: [6:51] It could've been way worse. I took prescribed dosage and then went to a party. I was maybe as 18 and had four or five beers somewhat [inaudible] . To me, he was like, "Well, you're not 21, so I never thought you would drink," which is the level of…

Dr. Duckworth: [7:07] What?

[7:08] [crosstalk]

Dr. Duckworth: [7:10] understanding at all. Was it your first day?

Liam: [7:14] That wasn't great. Then after that, I moved back home, which is extraordinarily difficult for me.

[7:26] After I worked a couple of odd jobs but wasn't working much, I saw all my friends having great times in college. It was challenging. That's when my mental health was probably at its worst for the next few year or so because I felt like a failure and wasn't doing what I was meant to do.

Dr. Duckworth: [7:51] You were off the developmental path.

Liam: [7:54] That's very much how.

Dr. Duckworth: [7:55] You'd fallen off the path. You were in the breakdown lane, and your peers are still going, right?

Liam: [8:02] Yeah. Then the semester after that, I went to Appalachian State University, which is obviously not quite as challenging of a school as Hampshire, but I was able to eventually find my own…

[8:20] The first semester I transferred there, I actually have a very serious depressive episode. It was brought out naturally. I was just sleeping all the time, and I didn't go to class. My grades were terrible because I felt like I couldn't get out of bed. I've ended up attempting suicide a couple times at Appalachian State before eventually dropping out.

[8:53] I was doing terrible in school, very depressed, and I got caught with a quarter gram of marijuana, which was stupid.

Dr. Duckworth: [9:04] Back in the day, that was a thing.

Liam: [9:07] It's still a thing in North Carolina, but…Yeah. My mom was very poor, obviously, a single mom as a teacher. The thought that she would have to suffer because I did something stupid. I don't feel like I did anything morally wrong but stupid.

Dr. Duckworth: [9:25] Did she bail you out? Is that what happened, or what was the…?

Liam: [9:28] No. They wrote…I had a court date, but she had to pay a bunch of money for a lawyer and a Prayer for Judgment, so it's not on my criminal record.

[9:39] After that, the next few months were terrible, terrible, terrible. Then, I went back to Appalachian State, didn't go to class, poked way too much marijuana for about the next year. It's definitely self-medicating. My life was pretty flat, felt really depressed.

[10:04] Then all of a sudden, when I was about 20, I got this incredible spark of energy that I don't know where it came from. I went back to school. In one semester, got an internship, it's promoted twice my internship, became president of the College Democrats, got mostly A's in all my classes, working 50 hours a week, doing 20 hours of credit hours.

[10:28] I was like, "This is freaking awesome." I was partying all the time, staying out till 3:00 AM. Never…

Dr. Duckworth: [10:34] Were you getting by a little sleep and still feeling pretty good?

Liam: [10:38] I'd sleep three hours a night, got really into 18th-century poetry and philosophy. I obviously didn't realize at the time. Everyone was like, "You're amazing." I lost 80 pounds in six months. Like, "This is incredible."

Dr. Duckworth: [11:01] At that point, did it all feel under your control? You got a spark of energy, you're accomplishing more, you're getting more positive feedback, you're moving ahead. Was there a moment when you started to realize that maybe you don't have it under control or what was your experience? How did that experience of the spark of energy?

Liam: [11:24] I had about four-ish, five-ish months where I intensely felt…I didn't feel out of control, although maybe other…I don't think even other people really…maybe they did perceive me as that, but I felt I could do anything I want through sheer force of will and charisma.

[11:47] Then eventually, I was about to be promoted to direct all of the democratic campaigns in Watauga County where Boone is situated. I completely crashed and was sleeping 18 hours a day and miserable, had persistent thoughts of self-harm. That lasted months or so.

Dr. Duckworth: [12:19] Were you getting any care? Were you in a treatment relationship for the depression when you got the spark of energy?

Liam: [12:27] No. I hadn't established a plan of treatment since I'd been in college, which I feel like can be challenging for a lot of people. It's like when you blow out, it's hard to maintain a relationship [inaudible] .

Dr. Duckworth: [12:38] I agree. You're on this run for four or five months, charisma, you feel like you can do anything. Then does it quickly go down or does it all fade over weeks?

Liam: [12:49] In two weeks, I felt so depressed that I felt like I couldn't move. I mean that in a literal sense, not in a…

Dr. Duckworth: [12:56] Physically could not move.

Liam: [12:59] Yeah. I was sleeping all the time, barely made it to class. My grades were terrible. Then I eventually called my mom. I voluntarily came to the decision, "I want to voluntarily enter an inpatient facility in [inaudible] ," which is both a really important decision and also a deeply traumatizing situation.

Dr. Duckworth: [13:34] What was traumatic about that experience for you? Now you're about 21?

Liam: [13:44] I think I was about to be 21, actually. The level of care there, no one really cared about you at all. They would schedule activities and just wouldn't do them. Also, the people there, a lot of them didn't seem to want to get better.

[14:07] I feel like that sounds callous and cold when I say that, but seemed like they'd been in and out of these kind of places for a while. It was very important for me. I remember the doors having a little space between the top of the door and the…I don't know what the word for it is. A door and then it connects the door.

Dr. Duckworth: [14:37] Frame of the door? Door frame?

Liam: [14:39] Yeah. So people could look in and make sure you weren't trying to commit suicide. I remember they took my belt and my shoelaces and it being terrible. People would still have sex in the…It was terrible.

Dr. Duckworth: [14:59] Did it feel humiliating that they took your belt and your shoelaces?

Liam: [15:06] Absolutely. I totally understand why they would do that, but it definitely was like yes. It was more like, "How did I get to this point in my life?"

Dr. Duckworth: [15:16] I'm in this place?

Liam: [15:17] Yeah. That's how I felt do.

Dr. Duckworth: [15:19] Of course.

Liam: [15:21] A lot of shame in not…I didn't know how to talk about it with anyone.

Dr. Duckworth: [15:26] You had two peers and one staff member that you could connect to.

Liam: [15:34] Yes.

Dr. Duckworth: [15:36] How long did you stay? Did you leave in better shape?

Liam: [15:40] I left in about seven days. I feel like at the time, I didn't really think it had left me in better shape, but I was able to get on an extremely high dose of lithium, which was in of itself challenging in a short period of time. Eventually, after a couple months, I was able to notice the difference.

[16:03] I think many people who use lithium, it obviously comes with a lot of trade-offs that are really difficult. I was committed to it after about a few months being out of that because I was like I can't do this to my family and friends. I don't want to be in a perpetual state of crisis.

Dr. Duckworth: [16:24] Did the hospital prescribe lithium or it was an outpatient doc?

Liam: [16:32] The hospital.

Dr. Duckworth: [16:34] You're how old, 21-ish?

Liam: [16:38] About to be 21.

Dr. Duckworth: [16:40] They say, "I think this is bipolar disorder. I want you to take this medicine."

Liam: [16:45] That was the first time I was diagnosed with…

Dr. Duckworth: [16:48] What was your experience of that?

Liam: [16:53] I didn't know anyone who had bipolar disorder. I was like, "No one's going to want to talk to me because they're going to think I'm weird or be scared of me." I'd say overall, it was a mixed bag. Most of my friends were great.

[17:14] One of my best friends, Katie, gave me a big hug after I came, actually, like, "I'm so happy to see you. I'm so glad you're OK." I felt so fortunate to have friends like that.

[17:27] [crosstalk]

Dr. Duckworth: [17:27] You had total affirmation from a person…

[17:31] [crosstalk]

Liam: [17:31] She was basically saying, "I don't care whatever you're going through. I just want to be here for you."

Dr. Duckworth: [17:38] Perfect answer.

Liam: [17:40] My family was super supportive. My mom was super supportive the whole time. Came to visit me every day and gave me books to read when I was [inaudible] . Even after that, helped me stay on track.

[17:54] Then basically, after I was stabilized on lithium, my life gradually, I think, became the person that I had wanted to be, but hadn't been able to tap into due to not having that emotional stability.

Dr. Duckworth: [18:13] Do you feel that lithium enabled you to realize more of your stated goals because you weren't dealing with the instability of the moods, or is that not accurate?

Liam: [18:25] Yes, absolutely. I did feel like the trade-offs of gaining weight and my brain not being able to make the same level of connections, I felt stupid or the thing where you're like, "What's that word?" I felt that way more often. I think that subsided over time. My motor skills were really bad for about a month or two.

Dr. Duckworth: [18:52] Did you have tremor?

Liam: [18:55] Yeah.

Dr. Duckworth: [18:56] Did you pee a lot?

Liam: [18:58] Yeah, [laughs] a lot.

Dr. Duckworth: [19:01] This is one of the challenges because you're both having to take this in about your identity. Then we give you the third element on the periodic table, which is a whole laundry list of problems. It's a lot to take in. Then you have to deal with some of these challenges.

Liam: [19:18] It was hard. I think I just said, "I have a health condition. Can I go to the bathroom at some point once during your class?" It was an hour, 40 minutes. He's like, "No, you have to go through health services and get this thing for…." It's like I'm an adult. I'm 21 years old and you're telling me I can't go to use the bathroom.

Dr. Duckworth: [19:43] Was this at Ap State?

Liam: [19:45] Yeah.

Dr. Duckworth: [19:49] Your family, did you talk about it within your family? You're 21. You're really forming your identity. You said your family was supportive, but did you sit down with them over Thanksgiving and say, "Here's the deal"?

Liam: [20:02] I think they were aware of me entering inpatient facility, and obviously, had been aware of my past struggles with mental health symptoms. They were like, "Whatever you want us to do and however we could help, we'll do whatever you need."

[20:23] I definitely felt that. Even if they didn't always know the right things to say, I always felt very loved. I'm super fortunate. I know a lot of people might not be quite that lucky.

Dr. Duckworth: [20:38] You were loved from the get-go. There was no family culture stopping any of your progress.

Liam: [20:46] No. I felt very supported.

Dr. Duckworth: [20:50] That's great. Now you're 21-ish. You've integrated this information, which is young to have figured this out. Is there a part of you that fights it, throws the meds away? A whole swath of people go through that, "Do I need this crap anyway?"

Liam: [21:08] I definitely intravenously had those experiences. Basically, my friends, and later, my sister would be like, "You can't not be under medication. It's not a fucking option." Especially when I first started, I didn't like it obviously due to the side effects. I wasn't completely committed to it.

[21:35] Over time, I saw how much it helped me objectively improve in life, get good grades consistently, maintain consistent relationships, all that stuff.

Dr. Duckworth: [21:47] Have you been back in the hospital?

Liam: [21:49] I have not. I did go to an outpatient facility about a year ago during the middle of COVID. It's very important for me to have a consistent routine, everything I do. I very much try to go out of my way to craft that.

[22:14] Basically, even more than medication, probably the most important thing for me is exercise and working out. I wasn't able to go to a gym. I was scared still to go outside and feeling…

Dr. Duckworth: [22:29] Because COVID?

Liam: [22:30] Yeah.

Dr. Duckworth: [22:32] Let's talk a little bit about the trajectory of your experience. I just want to make sure I have it. You had anxiety, depression, 12, 13. This is Middle School. You were experiencing distress. You try an antidepressant. Old-school doc. Your parents have this conflict, split up, another stress.

[22:54] You find a path, rugby, ideas, politics, friends. Then you have another setback at Hampshire and Upstate. Now you found a path again. You're back on a path, right? I see it.

Liam: [23:14] Basically, that's the course of my life. I feel like any time I have a big life change, it can be really hard for me because I [inaudible] structure so much. I feel like probably a lot of other people have a similar…

Dr. Duckworth: [23:27] Transitions are hard for people, and they may be harder for people who live with bipolar disorder.

Liam: [23:35] I won't generalize my experience.

Dr. Duckworth: [23:38] For you, transitions are hard.

Liam: [23:41] For sure.

Dr. Duckworth: [23:43] Let's talk a little bit about how you found NAMI. How did you find NAMI? What was your journey like in that?

Liam: [23:55] Right after I got out of that inpatient facility, I felt terrible. I was seeing a therapist at the time. She's awesome, and said, "You should read stuff about this so you don't feel like…" I read a bunch of NAMI blogs online about bipolar disorder and got into the statistics behind how frequent this was for people. It wasn't in 30 million thing.

[24:21] I think a book that I found on NAMI's site and my therapist recommended was life-changing to me because it affirmed that I could make something out of myself despite having this chronic illness. That was Kay Redfield Jamison's "An Unquiet Mind."…

[24:38] [crosstalk]

Dr. Duckworth: [24:39] Classic.

Liam: [24:39] that everyone who lives with bipolar disorder.

Dr. Duckworth: [24:44] Classic. What you were looking for was a model for how to live a meaningful life living with this condition.

Liam: [24:53] Yes. That was awesome. NAMI was really important to me. Seeing someone like myself who was successful who had bipolar disorder was something I never even thought about, but I had negative associations about my condition in my own mind, which I don't really anymore.

Dr. Duckworth: [25:18] Liam hadn't mentioned that his sister, Emma, had also experienced bipolar disorder, just like Liam had. He said they had given each a lot of support. When he told me that Emma would be available to be interviewed, I felt this was a great opportunity to showcase how families can communicate in positive ways.

[25:41] With your sister, I look forward to chatting with her about the idea of the book. I'm very interested in how you seem to have created a culture where you two can talk about it and support each other.

Liam: [25:50] For real.

Dr. Duckworth: [25:51] You don't see that every day, Liam. I'm congratulating you, but I'm also interested in it.

Liam: [25:55] Thank you. I think for us, it was really important, and it is still really important, and will continue to be important that we laugh about it. We have very messed up senses of humor. Honestly, if I'd met someone who I didn't really know and made some of the jokes that my sister makes to me or I make to her, we would feel like that's fucked up. [laughs]

[26:18] We totally get that about each other. I feel awesome to have that feedback loop. So many people are supportive. Also, just friends.

Dr. Duckworth: [26:26] You've also created a lot of support in your life. I don't think that just happens. I think you're the agent of that because you have a supportive family, supportive friends, you've created something with your sister.

Liam: [26:40] I still do go through depressive episodes. I can only hope they're not severe. They have waned in severity.

[26:50] I view it as you build out this reservoir of good people by doing a good job at your job, maintaining social friendships, sending people memes, whatever that might be, so that when you go through that really difficult time, you don't feel as bad about not texting people back or [inaudible] this thing your friends are doing, or whatever. I feel like that for me.

Dr. Duckworth: [27:17] A reservoir of goodwill. Did your sister develop symptoms after you? Were you able to coach her at all?

Liam: [27:32] She had lived with mental health symptoms growing up, and I knew that. We talked about it a little bit. I think we've talked about it. I remember I was pre-gaming to go out to bars with some of my friends when I was 21.

I got a call from my mom at 10: [27:53] 30 on a Friday or something, and was like, "I just want you to know, don't freak out, but Emma's been hospitalized at inpatient facility." That was one of the scariest and saddest moments of my life. It's very hard because I didn't know what I could do.

[28:19] I have always wrestled with that. How much of my own experience should I try to share with this person who I love and I'm very close with, but I know it's important that she has her own experiences and learns to [inaudible] ? I don't want to generalize my experiences to her.

Dr. Duckworth: [28:39] Had you already been in the hospital when she went into the hospital, or no?

Liam: [28:45] I went to an inpatient facility when I was 20, almost 21. Then I think I was 22 when my mom called me with that news. Basically, we were about the same age.

Dr. Duckworth: [29:01] She and you can talk about it.

Liam: [29:04] Absolutely. She honestly probably does a better job taking care of herself than I do.

Dr. Duckworth: [29:09] I look forward to chatting with her. I want to thank you for connecting me to her. I'm grateful for that. Siblings that work the problem, support each other, and keep moving in life, it's a great model to have in the book.

Liam: [29:26] For sure.

Dr. Duckworth: [29:30] What is your definition of recovery?

Liam: [29:32] I used to think it meant you went through this thing, like a friend who's in remission from having cancer. It's like you go through this thing, it stinks, it sucks, and then over the course of time, you just get better, and then you're better.

[29:53] Having a chronic mental health condition has very much forced me to re-evaluate what that means. I think for me, it's important to see recovery as not a linear ongoing process or, "I had this difficult time in my life and then I just got better."

[30:12] That might be great for a lot of people and be valuable to see someone who struggled and see them on the other side, but I think lack of discussion of that level of nuance can be harmful to people like me who feel well and then feel bad, and then have to go through that cycle.

[30:31] I think as long as I'm doing better over time with my mental health condition and with being happy, that would be recovery to me. Doing it on a mont…