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

AUG. 10, 2023

Voices of Recovery: Episode 20

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.

This conversation was part of Dr. Duckworth’s research for the book, You Are Not Alone: The NAMI Guide to Navigating Mental Health--With Advice from Experts and Wisdom from Real People and Families. Hear more episodes of this and other podcasts at nami.org/podcast.  




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 month-by-month basis, but viewing it through the long game.

[30:46] That's something I've also gained, is perspective even when I'm really depressed now. I know it's like something's happening in my brain, I can't control it, I'll feel better soon.

Dr. Duckworth: [30:54] Emma Winters had dealt with anxiety issues and periods of depression a lot in her childhood. Her health became more of a concern when she was a student at Boston College.

Emma Winters: [31:04] The depression was pretty persistent. It was really hanging in there. Around the same time, I'd also started taking a very low dose of amitriptyline to treat some of my stomach pain. That's used off-label for pain, but it's really good.

Dr. Duckworth: [31:26] Low dose.

Emma: [31:27] Low dose. Very low dose. Probably like 10 milligrams or so.

Dr. Duckworth: [31:31] It's micro-dose. It wouldn't touch depression, typically.

Emma: [31:34] Right. When I did see the psychiatrist, they were like, "Well, seems like you've had a hard time with your stomach for the last six years. We don't want to mess with that. Maybe before we try you on a more typical SSRI, let's try to up your dose on the amitriptyline."

[31:55] They did that and very quickly I had reaction to it. I felt very activated and anxious, and very up high energy, but unable to breathe, basically.

[32:14] I just felt, it's such a hard thing to describe but it was almost like I was going to jump out of my skin. Because I felt that way, I went to the counseling services for an emergency session. It was 4:30 on a Friday, thereabouts.

[32:29] They were basically like, "Go home, watch some TV, try to relax" sort of thing.

Dr. Duckworth: [32:34] Or keep taking your amitriptyline, or did they say?

Emma: [32:39] Keep taking it, because they were just a counselor, they weren't...

Dr. Duckworth: [32:44] Right, they weren't a doctor.

Emma: [32:45] They weren't a doctor. They weren't in a place to tell me that. I had scheduled something. I had an appointment for the next week where I was going to talk to the doctor. I remember I went home and so what do I do, because I don't have answers? Go on Google.

[33:04] I start going through WebMD articles and the whole thing. I see that if you have that some people who are bipolar have a reaction when they use amitriptyline for depression. I'm like, "Oh shit," because my brother has bipolar.

[33:25] I say that to the psychiatrist at my next visit. I'm just like, "Hey, I'm really worried about this. I have these concerns." They asked me a couple of the standard bipolar questions and I'm like, "No, no, no to all of that, but I really think this reaction is significant."

Dr. Duckworth: [33:44] Something really is happening to my body and my mind.

Emma: [33:47] Yeah. They take me down from the medication and they say, "Well, it's almost the end of the year, so we don't want to put you on anything else because we can't supervise you." I stay back with the micro-dose of amitriptyline that I was using before.

[34:05] Then when I go to my annual physical that summer, so I'm trying to get everything squared away so I can study abroad in the fall.

Dr. Duckworth: [34:13] We're back home now in the Carolinas?

Emma: [34:16] Back home in the Carolinas.

Dr. Duckworth: [34:17] Got it.

Emma: [34:21] I get one of those classic anxiety anti-depression forms. [laughs] I just filled it out honestly. Then the doctor was like, "Hey, you scored pretty high. Are you good?" I'm like, "Nope, I'm not. Still not good."

[34:36] She provided me an SSRI, which I took with the amitriptyline for about nine months, and then I had a really severe manic episode.

Dr. Duckworth: [34:49] Can you describe that a little bit?

Emma: [34:51] Sure. I was leading the retreat. It was a religious retreat. Towards the end of it, actually I guess I have to go back a little bit. Leading this retreat, it was the week after spring break. For spring break, I had just come home.

[35:12] When I came home to North Carolina, I pretty much crashed. I was so tired. I basically slept on the couch all week. Then I went back to school and I all of a sudden felt very anxious and kind of activated. It reminded me of how I felt when I took that really high dose of amitriptyline.

Dr. Duckworth: [35:40] The initial feeling that you had.

Emma: [35:42] Yeah. I felt it was like I had this anxiety that just could not be contained. I run, so it couldn't be run out. It couldn't be anything. It just was so much and I was crying. I had to give a talk on the retreat, and when I gave it to the campus ministry person, I just cried.

[36:04] I just sobbed giving the talk, but it wasn't sad. It was very weird. It was like I was crying but I couldn't control it.

Dr. Duckworth: [36:15] What did you think about that? You must have noticed that you weren't sad, but here you were unable to control tears.

Emma: [36:23] Yeah, I didn't know. I feel like I didn't know why that was happening. Then after it happened, I was like, "OK, well I feel fine now, so I guess whatever."

Dr. Duckworth: [36:35] Yeah, move on.

Emma: [36:37] Move on. Then I went under a tree and again, was crying at various times, was definitely being like I would say, overly social. Felt like I was making fast connections to things.

[37:02] I remember at the end of the retreat, I was sitting with all the other leaders, and we were having a debrief and we were talking a little bit. I was telling them all about a different person that they all reminded me of, and they were all like, "OK, this is like, why are you telling us this?"

[37:18] It was things like that where I was like, "Oh my God. All of a sudden, you all remind me of people that I've known like before." They were all like, "OK."

Dr. Duckworth: [37:26] That your mind was hyper-engaged in...

Emma: [37:31] Yes.

Dr. Duckworth: [37:32] Association, through Associating. You remind me of somebody from third grade.

Emma: [37:36] Yeah, exactly. I was just making those weird connections. Then I went to class the next evening, creative writing professor. She's one of those mentors that I have just eased on. I had her three times in college.

[37:56] In class, I wore my pajamas, which I would sometimes wear my pajamas to the library, but to wear it to class is still a little weird, and it was my day to be workshopped. That means people were reading my work and they were commenting on it.

[38:15] Every single person, every single comment, no matter if positive, negative, whatever direction, I laughed, hysterical laughed. After class my professor was like, "Are you good?" [indecipherable] I had an appointment with my counselor, the one who I had connected with sophomore year. I had started re-seeing her again.

[38:39] It was a Monday and I said, "Oh, I have an appointment on Thursday, so I guess I can get this checked out." [laughs] Then she was like, "I really think you should go tomorrow." Because it was a late-night class, it was 8:30 at night. I was like, "OK, if you say so."

[39:06] I was able to make another counseling appointment for the next day, and then I cried for that whole session. I told my therapist that I was really convinced that I had figured things out now and I had OCD. I needed to get this treated, and I was very upset. She was like, "OK, well, we'll talk about this more."

[39:25] Then we had another appointment on Thursday. At that appointment he recommended that I go to my McLean Hospital because I was pretty manic. It's interesting, I feel like even when I was that manic, I really wanted help.

[39:50] I specifically said to her like, "I need you to give me all the magic beans and I need you to trust me to take them one at a time." Which was like me saying something's not right here and I the right medication, and I don't have it. I will take it, I'm very committed to that, but I just didn't have what I needed.

Dr. Duckworth: [40:13] Yeah, but also, you were looking for magic. You were really struggling. Magic beans, not just any beans will help you.

Emma: [40:22] Because my manic episode was very uncomfortable. I was very agitated.

Dr. Duckworth: [40:27] Were you angry?

Emma: [40:30] Not angry, more like anxious, restless.

Dr. Duckworth: [40:38] Agitated, where you said it. How much were you sleeping?

Emma: [40:42] One night I didn't sleep at all, I just paced my room talking to myself.

Dr. Duckworth: [40:48] Did you ever hear voices? Which is common when people get sleep deprivation.

Emma: [40:54] I didn't hear voices, but I felt like my own voice was running so fast.

Dr. Duckworth: [41:03] Do you think you had times when you had lost touch with reality? Did you think you were going to become the president of BC, for example? Did you have a grandiose fantasy? These are common, but you may not have had one.

Emma: [41:19] I was trying to work on my senior thesis during that. Also that's something I'd always planned to do. I only didn't do because of the manic episode. [laughs] I don't think I had anything like I thought, "Oh, everyone loves me now and I'm going to become the first female president."

Dr. Duckworth: [41:41] I made that up, but a grandiose fantasy, I met someone who thought they would become Mother Teresa. They really thought that they actually traveled to another country in the context of a manic psychosis, because they figured "Well, if I'm not person who's going to do this, I should hop a plane and go do it."

Emma: [42:04] I don't think I had that. I think what I thought was I'm finally figuring this out for myself. Like with OCD thing, I was like, "I'm finally figuring out what's wrong and then everything else in my life is going to fall into place after this." That was how I was thinking.

[42:23] I wasn't thinking, "Oh, I'm the best." It was more like, "Oh, I've solved this, guys. I've hacked this life." You know what I mean? It's that feeling.

Dr. Duckworth: [42:33] That's a very good description. It's a very good description. You go to McLean Hospital. Is there concerns about your safety at this point?

Emma: [42:40] From myself or from others?

Dr. Duckworth: [42:45] Yes. For you in particular, but broadly speaking, were you behaving unsafely where you taking unnecessary risks?

Emma: [42:51] It's hard because it wasn't I was like, "Oh, now I'm going to do drugs and streak the campus." Do you know what I mean? It wasn't I was going to do that, but I was jumping on couches and when I came, when I showed up at my counselor's office on Thursday, I had my childhood blanket wrapped around my neck. I wasn't in control.

Dr. Duckworth: [43:21] You were not in control.

Emma: [43:24] My room looked like it had an explosion in it, my dorm room. I had to apologize to my roommate [laughs] so hard when I got back.

Dr. Duckworth: [43:32] The chaos within you was reflected in the room.

Emma: [43:34] Absolutely. I had missed class that week, which I never miss class. Basically, before that it's like if I miss class, I'm almost dead. You know? [laughs]

Dr. Duckworth: [43:45] Yeah.

Emma: [43:45] I really never miss class, even when I was depressed.

Dr. Duckworth: [43:48] You go to McLean Hospital. Were you relieved? Were you anxious? Were you afraid?

Emma: [43:56] I think the first I was just confused. They were having me fill out paperwork. I remember, I think they considered me an involuntary admit because I signed the paperwork, and then I ripped it in half.

[44:14] Then I remember they put me in a room. They kept giving me, or maybe I was asking for it. I don't even know. [laughs] I just remember there was one point where I was like, "I need something to read." Because I knew I needed to calm down, there was too much going on and I thought that might help me.

[44:41] I looked at the first page of this book, and oh gosh, what was it? It was something by Sue Monk Kidd, it was one of those Oprah picks. I tried to read the first page and I couldn't read it. I couldn't even get through three words, because that's how much my mind couldn't focus.

[45:03] That was terrifying, because I'm a fantastic reader. I have a major, I was a writer, I was an editor, and I couldn't read a sentence of this book.

Dr. Duckworth: [45:19] Because you were so overwhelmed, because your thoughts were so fast or?

Emma: [45:22] Couldn't follow it because my mind was going too fast.

Dr. Duckworth: [45:25] You were racing.

Emma: [45:26] Yeah.

Dr. Duckworth: [45:28] How long were you at McLean and did they help you?

Emma: [45:31] I was there for 10 days. I think it did help me, but I wish I could have been helped in a different way.

Dr. Duckworth: [45:44] By not having the medicationer?

Emma: [45:47] By not having the medicationer. It's very demoralizing to be in one of those places. When you're locked in somewhere, you just feel like an animal. I don't know how else to say that. It's very dehumanizing to have all your privileges taken away.

[46:11] I remember at one point I was like, "Hey, I just need to see my computer." This is how much I didn't get it. I was, "OK, I just want to see my computer for like 30 minutes, so I can register for class on Tuesday morning," and they were like, "You can't have your computer in here."

[46:25] I was like, "Well, what do you mean? It's my computer and I have to register for class and that's the timeslot I was given." I just didn't and I felt like...

Dr. Duckworth: [50:03] You didn't realize how restrictive it was going to be.

Emma: [58:30] Yeah, I did not know. I was like, "You can watch me on my computer if you want. I'm not going to do anything."

Dr. Duckworth: [29:15] No problem, right.

Emma: [32:46] They were like, "No, you can't have it." I was just like, "What do you mean? It's mine."

Dr. Duckworth: [46:51] Yeah, I see why that would be dehumanizing. Did they give you a new medication or psychotherapy or did they offer anything else?

Emma: [47:00] They put me on lithium pretty quickly. Again, knowing the family history was super helpful, because I feel like they really didn't consider too many diagnoses. They were like, "This seems pretty manic, and you have this in the family, so we'll just go with this."

Dr. Duckworth: [47:25] Particularly your brother's response to lithium.

Emma: [47:27] Yeah. Just knowing, because at that point I wasn't diagnosed with anything. I think just having a bipolar diagnosis in the family, they were like, "OK well, we know that's a good bet now and we'll..."

Dr. Duckworth: [47:42] That's a good start.

Emma: [47:43] Then they also put me on, oh gosh, I'm going to forget the medication.

Dr. Duckworth: [47:49] They gave you an anti-psychotic as well?

Emma: [47:52] They did.

Dr. Duckworth: [47:53] Which can happen in the acute phase, just to try to slow the train down. Many people don't need to be on that long term.

Emma: [48:03] Oh wait, olanzapine.

Dr. Duckworth: [48:04] Olanzapine?

Emma: [48:05] Yeah. They put me on, I think 10 milligrams of that with the idea of like, "We'll take you off this when you're unstable," type thing.

[48:18] I took that for a few months. That's what I was on in the hospital. Then I was there for 10 days. There were groups and stuff that they had you go to. Personally, did not love that. I just remember, I felt very surveilled when I was in the hospital in a way that made me more paranoid than anything.

[48:49] I got very upset with how the way things worked. Obviously in the bathroom, they don't have a real hook because, you know? I would put my towel on the fake hook, but didn't take weight and then it would just fall off and fall on the floor, and I'd be like, "Oh God. Now that towel is ruined because it's on the floor. It just was things like that where it was overwhelming.

Dr. Duckworth: [49:15] Basic things weren't regular for you and so you had all this added stress.

Emma: [49:21] Right. My mind is already having trouble making the proper connections and then it's like, "Oh now, I have to use a phone that's not an iPhone, and I don't know how that works." It's pay phone now and I don't know how a pay phone works. I haven't used one.

Dr. Duckworth: [49:39] You're too young to know pay phones, right? That's old school, right? Why would you need to know how to use the pay phone? All right, so 10 days, they put you on their protection. Are you able to return to school, and what was your experience after being discharged?

Emma: [49:53] I did return to school. I was very insistent on that. A lot of people like my mom and the people in the hospital were like, "You might need to just take a break" and I was like, "No, I will finish this semester."

[50:07] I went back, I did get pretty overwhelmed. I had to call my internship quiz early. I didn't really feel like they made a great counseling plan for me in the hospital, which may have been, because I was there for so short.

[50:26] Ultimately, I came home a bit early before finals and I had attended enough class that they basically said, "You can have an extension on all your classes, and you can do the work over the summer, the final papers and stuff and then you'll just get your grades whenever it's done."

[50:52] I went home and I attended a partial hospitalization program. I would say that more than anything really helped me.

Dr. Duckworth: [51:04] How so, did they help you integrate this idea that you might have this vulnerability, but you could still have a life? Did you meet other people who were like you? What was that helpful element?

Emma: [51:18] First it was getting the medication actually right, was a very helpful. The olanzapine was very harsh on me and I really couldn't think straight on it. I don't think it was ever intended to be a long-term solution.

Dr. Duckworth: [51:32] No, it was not. It was to help get you out of that state. That's right.

Emma: [51:36] I also gained a ton of weight on it.

Dr. Duckworth: [51:39] Which is classic olanzapine problem. I hope they told you that might happen.

Emma: [51:45] They did but it didn't help [laughs] pretty much.

Dr. Duckworth: [51:48] Still, yeah.

Emma: [51:48] I got the medication piece right there. Settled on lithium, and Seroquel at 50 milligrams. 500 tried 75, tried 50, 50 is just right.

Dr. Duckworth: [52:05] The lowest effective dose, that's what we're going for.

Emma: [52:08] Pretty much anything else, I felt like a zombie. It's honestly bizarre, just how much a little change can...

Dr. Duckworth: [52:16] How close it is for you.

Emma: [52:18] Yeah. I was in group therapy really fantastic group members. It was a mixed group, so it wasn't like, "Oh, this is all people who've been diagnosed with bipolar disorder." It was everything across the spectrum from...

[52:36] I think we had someone with schizoaffective disorder. We had another bipolar person, another cyclothymia diagnosis, depression, PTSD. It was a broad array of diagnosis. It was a broad array of ages. I think the youngest person in the group was a couple of years younger than me, maybe 19. Then the oldest person was in their 60s.

[53:06] It was very nice to see a broad spectrum and an environment where I felt safe. There was individual counseling as well as CBT, DBT. There were also less traditional therapies, which were to help break up the day. You can't be doing CBT eight hours a day.

Dr. Duckworth: [53:34] That's true.

Interviewee: [53:36] We had a nutrition once, so you were cooking and we would get to eat the food. It was nice. It's a really great organization.

Dr. Duckworth: [53:45] How long were you there?

Emma: [53:47] I did the partial hospitalization program for four weeks. They have a lesser-extent outpatient program that's three hours a day for three days a week instead of five days a week. I did that for I think maybe one more week. Then I came to New York City for an internship. [laughs]

Dr. Duckworth: [54:11] Just like that. You graduated during that when your school...

Emma: [54:17] No, I still had one more year of Boston College.

Dr. Duckworth: [54:21] How did that go?

Emma: [54:23] Finished all that schoolwork. It was hard. I felt like I was still adjusting to everything. I found a fantastic provider in Boston. A real more old school style provider who does psychiatry, but has a therapy session, hour-long appointments. A lot of psychiatrists do that.

[54:50] Maybe you're in the Boston circuit, but Irwin Avery, that's the name, just in case you...

Dr. Duckworth: [54:57] I know that name.

Emma: [54:58] He was my provider. We met every week for an hour. I feel like that helped me know because I think I was still playing around with the Seroquel, the right dose at that time. We kept working on it.

Dr. Duckworth: [55:15] That's great. You got good care.

Emma: [55:18] I really got good care.

Dr. Duckworth: [55:19] How was this being integrated into your identity? It's a challenge for a young person figuring out who they are to add this to their portfolio of human experience. What was that like for you?

Emma: [55:34] It was really hard because I...Like I said earlier, I have that tendency of being very anxious and careful about things. Then mania's the opposite of that. I feel like just to have been so out of control is really scary for me. I didn't want to be out of control.

[56:06] It just is very hard to accept that, "Oh, something happened to me and it was in my brain. It totally affected how I thought and acted." I didn't control that. It's like who am I if I can't make choices in a way?

[56:29] Now I feel I can make choices, but if there was a period of time where I couldn't make choices, it's like what does that say about me?

Dr. Duckworth: [56:38] Do you think that contributes to the shame associated with these conditions? Because it's like you're at the center of who you are. This is getting pretty personal.

Emma: [56:49] No, it does. It really does. I don't know. Even growing up with a Catholic worldview, it's like one of the things that makes humans special is that they have free will. You're like, "I don't have that. Am I less human than everyone else?" If I didn't have it for a time, it's like does that make me less human, less worthy?

Dr. Duckworth: [57:12] The answer's no, but it's a good question.

Emma: [57:15] [laughs]

Dr. Duckworth: [57:16] It could be like diabetes, a system that can get dysregulated.

Emma: [57:20] Exactly.

Dr. Duckworth: [57:21] How did you and Liam talk about it? Was Liam a support to you?

Emma: [57:27] Yeah. He was definitely really supportive. Especially right when I came out of the hospital, he was always calling me and sending me Spotify playlists. [laughs] He was really trying to help me and giving me advice. Sometimes we're different so the advice didn't land, but it meant so much that he was trying to reach out to me.

[58:00] I think at that point, I so much felt afraid and I didn't want to feel alone. I wasn't like I listen to the songs on a playlist and I was like, "Yes, now I feel better."

Dr. Duckworth: [58:15] [laughs]

Emma: [58:15] It's knowing that he was caring enough to...

Dr. Duckworth: [58:21] Liam thought about my experience enough to put together a few songs because he cares about me.

Emma: [58:30] Yeah. He's reaching out to me constantly. I feel like there was almost a while where I heard from him almost every day and it was nice. I just didn't feel alone.

Dr. Duckworth: [58:40] That's what the book is called, "You Are Not Alone." This is why I'm so grateful that you spoke with us because the idea that he would step forward. Did other people in your life step back away from you or did friends have difficulty connecting with you?

Emma: [58:56] Most people stepped towards me. I did feel there was one friend who stepped away. That was really hard. The vast majority of the outpouring was very positive. My mom was extremely supportive. My older brother, my younger brother, my creative writing teacher. [laughs]

Dr. Duckworth: [59:35] How about these siblings who don't have a mood vulnerability? How did they think about it? They were able to step forward as well?

Emma: [59:48] Yeah, definitely. I called definitely my older brother in the hospital. It was very good to talk to him because he's very practical. I was very concerned. He was like, "No. Look how well Liam's doing. You can be like that, too."

[1:00:12] He was saying, "You'll take care of yourself, you will." Just having that. Then my younger brother, I didn't feel very safe driving because I mentally wasn't... [laughs] I wasn't fully back to...

[1:00:29] [crosstalk]

Dr. Duckworth: [1:00:29] You were not yet at your best, Emma.

Emma: [1:00:31] You should be at your best when you go behind a steel vehicle.

Dr. Duckworth: [1:00:35] Yes, 4,000 pounds. Yes.

Emma: [1:00:36] [laughs] My younger brother would drive me there a lot. We'd talk on the way. He would say, "I'm just so proud of you for all for all you're doing to take care of yourself." This is an 18-year-old guy who's in a [inaudible] . So sensitive. He listened to me so much. [inaudible].

Dr. Duckworth: [1:00:59] Really, it was all the siblings and your mother.

Emma: [1:01:03] And my mom.

Dr. Duckworth: [1:01:05] It was a whole family system. Did any of them do anything with NAMI Family-to-Family? Did anybody do any programming or are they just natural? There are naturals in the world.

Emma: [1:01:18] I don't think they did any programming. I think they just stepped up. When I moved to New York for the summer to work an internship that I interviewed for [laughs] two days after I was released from the hospital by Skype call.

Dr. Duckworth: [1:01:38] You got the internship?

Emma: [1:01:42] I did. When I went to New York to work there, I stayed with a friend of my mom's, so a family friend. I had some support there. My mom came up and stayed with us. I feel like she was in New York probably half the summer [laughs] that I was there. She was really supportive.

Dr. Duckworth: [1:02:05] That is fantastic. Emma, it's a beautiful family story because it's a family that made the decision to prioritize love and support over some alternative pathways that might include shame, blame, and isolation.

Emma: [1:02:22] I agree.

Dr. Duckworth: [1:02:23] The last question. I ask everybody one question. What does recovery mean to you?

Emma: [1:02:29] To me, I think the most important part of recovery maybe besides the medication was really learning to trust myself again. Trust the decisions that I made for myself as a young adult.

[1:02:46] I think sometimes, especially after the manic episode, I always was very self-aware, but then after that, it became more self-doubt. Like, "Oh, I don't know if I should do this because I'm going to be out late," or, "I don't know if I should take this job because it might be too stressful," or, "I don't know if I should XYZ."

"[1:03:10] I don't know if I should live by myself because maybe I'm too vulnerable for that," or whatever it is.

[1:03:19] [background music]

Emma: [1:03:19] I think getting to a point as a young adult where I really feel like I know what's best for me and that I can take care of myself not in a lonely way where I don't reach out for support, but in a way where I feel confident in my own choices.

Dr. Duckworth: [1:03:43] This has been You Are Not Alone, Voices of Recovery. For more episodes of this and other NAMI podcasts, visit name.org/podcast, or check wherever you get your podcast. For more information on the book, "You Are Not Alone," visit nami.org/youarenotalonebook.

[1:04:04] I wish I had the wisdom of the Winters family when I was going through my own understanding of what my dad's bipolar disorder was. It would have made a difference for me.

[1:04:26] This podcast was produced by John Moe and Jordan Miller for the National Alliance on Mental Illness. We get engineering help from John Mueller. I'm Dr. Ken Duckworth and thank you.

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