Voices of Recovery, Episode 10: Dissociative Identity Disorder, Church & Family

Tracy Green was diagnosed with dissociative identity disorder, or DID. It’s a condition where there are two or more personality states within the same person. DID used to be known as multiple personality disorder, and while the condition is often depicted in movies and TV shows, the reality is very different from Hollywood’s portrayal. Tracy talks with NAMI’s Chief Medical Officer, Dr. Ken Duckworth, about living with DID, meeting resistance from family and church, and ultimately finding a path to recovery.

Episode:

Episode Transcript:

Ken Duckworth: [0:00] Welcome to "You Are Not Alone ‑‑ Voices of Recovery."

[0:02] [background music]

Ken: [0:03] Hi. I'm Dr. Ken Duckworth. I'm a psychiatrist. I'm fortunate to be the chief medical officer for the National Alliance on Mental Illness, or NAMI. 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 Families."

[0:22] I talked to over 100 people for this book. I wanted to share some conversations that I felt had important teaching moments.

[0:30] Tracy Green lives in the Dallas area. She has a recovery story that is an inspiration. She was diagnosed with dissociative identity disorder, or DID. DID is where there are two or more personality states within the same person. DID used to be known as multiple personality disorder. DID is uncommon, but real.

[0:55] Tracy struggled to get understanding and support within her family and also her church. That led to Tracy being appointed to NAMI's Peer Leadership Council. The Peer Leadership Council is a group of people who've lived with mental health conditions and advise NAMI's Board of Directors.

Tracy Green: [1:17] I'm very excited about the lessons that I've learned on this journey of being diagnosed with a mental illness. It has freed me not to be ashamed of my diagnosis, but to embrace it as well as the lessons I've gained and relationships that I've gained through this process.

Ken: [1:44] Let's talk about life before you embraced it and life after you embraced it. What was that process like?

Tracy: [1:52] If I had to put words to the process, I would say isolated, scary. What's a word for no hope? I didn't have any hope.

Ken: [2:06] Hopeless.

Tracy: [2:07] Yeah. Right.

Ken: [3:30] Right? Is that it? Is that the word?

Tracy: [6:30] Hopeless. Yes, it is, absolutely.

Ken: [19:20] Isolated, scared, and hopeless doesn't sound great.

Tracy: [2:15] First of all, I came from a Christian background. I'm a black female from the South. Mental health is not discussed. Everybody knows about it, knows the people who they call crazy, but nobody talks in terms of recovery or even support.

Ken: [2:41] Within the church or within the black culture?

Tracy: [2:45] Both.

Ken: [2:48] How do you think about that?

Tracy: [2:50] It's expansive, the idea of not addressing mental illness in the black culture. At least in the environments that I grew up in and relationships that I experienced, it's not talked about.

Ken: [3:09] Has it changed, in your experience, within the church? Have you brought anything to the church in this regard? Do you talk about it at church now? How do you think about that, your relationship to the church and mental health?

Tracy: [3:26] It's funny. I'm not in a church right now. I am a Christian, but I'm not in a church. Absolutely, I brought it to the church, knowingly and unknowingly, because I needed help. I did reach out to the church for help. It was like a closed door to address it.

Ken: [3:52] You go to the church, and you say, "I need help for…I need support."

Tracy: [3:56] For depression. It wasn't one conversation. It was multiple attempts. The biggest thing you hear is you don't have enough faith, or you have sin in your life. If you get the sin out of your life, then you won't feel these feelings anymore, for which I try. First of all, how do I identify what sin or sins? Secondly, how do I get them out?

[4:34] I don't like this feeling of depression. I don't like this hopelessness. I don't like feeling suicidal and even attempting suicide. When I'd go to the church, there was only shame. I do think it's gotten better. I'm not trying to beat up the church.

Ken: [4:55] No, of course. We're just telling what your experience was.

Tracy: [5:03] I know that it's better because I know that NAMI itself has a religious arm.

Ken: [5:12] FaithNet.

Tracy: [5:14] Yes, and not only that. Even other conferences that I've attended, there is a place for having discussions within the church and bringing in leaders in the church. I'm very excited about what has moved. I don't think it's moved enough fast enough, but I'm very grateful for the movement that has taken place.

Ken: [5:46] When did you embrace becoming a peer, and taking this on, and having this as part of your identity in life? How long ago was it?

Tracy: [6:00] This is a process for me. Before I was a peer, I was an individual. I had to acknowledge my own illness, and accept it, and get help. Because I couldn't get help if I didn't first acknowledge that I needed help, that I was sick. If that's not the right word, if I wasn't fully well. I've been on this journey for about 30 years now.

[6:43] It was almost immediately because I began having symptoms, and I could not get help within my own community. When I'm talking community, initially, I'm talking my own family, my nuclear family. I had to be brave enough to reach outside of the norm. Which meant that I took on a lot a lot of rejection.

Ken: [7:19] In the family?

Tracy: [7:23] Absolutely. First, we don't talk about things with other people. To reach outside of the family for help means to say that I have a problem. Culturally, even just in my own family system, that meant sharing our business. Which is a major taboo.

Ken: [7:48] Privacy is really valued, sharing your business is not OK. It's a taboo.

Tracy: [7:52] Not so much privacy as much as secrecy.

Ken: [7:55] Secrecy.

Tracy: [7:57] Yes. Which is unfortunate.

Ken: [8:00] Yeah. That is unfortunate. Did your family come to appreciate why you might have done that, over time? Initially, it didn't go well, but over time, did your family start to see it differently?

Tracy: [8:16] For the most part, no. I still have a very complex relationship with my family, where I know who to be with them. It's not something that I embrace. Each year, when we do NAMIWalks, my family does not support me. Whether it's coming to the walk or contributing, it's a non‑issue. It's not even acknowledged.

Ken: [8:53] It's just ignored.

Tracy: [8:55] Absolutely. In other ways as well. NAMIWalks was just one of the ways…

[8:59] [crosstalk]

Ken: [8:59] That's a good example though because that's something a person can be part of without doing much. Right?

Tracy: [9:05] Right.

Ken: [9:05] You contribute 20 bucks, or you show up and take a walk. Right?

Tracy: [9:11] Right. It is sad when you go out there for the walk and you see all these families, and we're talking large extensions of family and friends, and I'm represented by friends but no biological family. It's a constant reminder.

Ken: [9:37] That's hard. That is a hard reminder.

Tracy: [9:40] Something you live with, you learn to live with.

Ken: [9:43] I'm sorry you've had to live with that.

Tracy: [9:46] Thank you.

Ken: [9:48] But then in NAMI, you found a family too. You're on the Peer Leadership Council.

Tracy: [9:52] Absolutely.

Ken: [9:55] What led you to become on the Peer Leadership Council? Do you consider NAMI a kind of family?

Tracy: [10:01] Yes, are you kidding?

[10:03] [laughter]

Ken: [10:07] Tell me about your journey to the Peer Leadership Council. What was that like for you? Did somebody ask you to do it?

Tracy: [10:15] It started with a staff member of NAMI here in Texas hearing me speak about my journey at a separate conference and approaching me and asking me if I would be willing to share my story as part of NAMI In Our Own Voices.

Ken: [10:40] In Our Own Voice program, yes.

Tracy: [10:46] I was given the opportunity to go into places and situations where I could share and encourage others. That's where it all began.

Ken: [10:59] That's the moment, right? You were like, "Hey, wait a minute."

Tracy: [11:01] Wow. There are other people like me. It also destroyed that sense of isolation because I began to meet people who also had family members who didn't support them, and so I wanted to be that family member for them.

Ken: [11:20] That is so beautiful.

Tracy: [11:23] Wow, it was so powerful to realize that I could take all that pain and use that to share it with others, especially when I went into treatment facilities, because I myself had been in treatment facilities a few times.

[11:43] To see the people light up with knowing, "I'm not the only one who's experiencing this," that was the most powerful part of the journey for me. When I was approached to be on the Peer Leadership Council, it wasn't even a decision. It became a mission. "Yeah, absolutely."

[12:15] I get to help speak for others as well as myself, and not like I think my voice represents everybody. I know that we each have our own voices, and I totally, totally want that to stand out.

[12:41] As a whole, I can share some experiences that I know are common among people who live with a mental illness or a mental health diagnosis, and it is my privilege to do so.

Ken: [12:59] It's been helpful to you to help others.

Tracy: [13:01] Absolutely. It's part of my healing to do that.

Ken: [13:05] I hear that, and I've heard that from many other people. How long have you been on the Peer Leadership Council?

Tracy: [13:11] Two years now. I just completed two years this month. I was assigned…

Ken: [13:20] Congratulations.

Tracy: [13:21] Thank you. [laughs]

Ken: [13:24] What's it like since you've embraced this? You mentioned there was a time before you embraced it, and now you've embraced it.

Tracy: [13:32] You mean my diagnosis?

Ken: [13:34] Yes, your experience, your diagnosis.

Tracy: [13:40] I am married. Next month will be 38 years. Yay.

Ken: [13:44] Yay. Fantastic.

Tracy: [13:44] To the love of my life. We have two adult children. For the most part, it was very limiting. My kids couldn't go out and talk about their experiences because we had to keep this to ourselves because it was a taboo.

[14:08] There was so much stigma with having mental health issues. It was very isolating, not only for me, but for my husband and for the kids, especially in the first years before I knew that my symptoms could be managed.

[14:32] That was very troubling for my children, seeing me act out, and be hospitalized, and for my husband having to take time off from work without really saying what was going on. It was a very difficult time.

Ken: [14:52] I think it is. Is it true that you didn't have a name for it, like you didn't know what it was?

Tracy: [14:59] [laughs] That's correct.

Ken: [15:00] Did the diagnosis help put a name to it?

Tracy: [15:06] Absolutely. We had no idea what was going on. I felt so out of control. It's incredible how out of control I felt that I'm having these symptoms, but I couldn't put a reasoning behind it. I'm somewhat of an analytical person, I think, A‑type personality, where I need to understand the logic.

[15:36] It was a great relief to finally get a name to it, but at the same time, that set up a whole new dynamic of fear because of the limitations of what I knew about the diagnosis and the limitations of resources out there to help me with my diagnosis.

Ken: [16:02] Was the diagnosis major depression?

Tracy: [16:07] Yes, but also dissociative identity disorder. All I knew and all people would refer to was "Sybil."

Ken: [16:21] Sybil is a made‑for‑TV movie from back in the day in 1976. It is about a young woman with dissociative identity disorder, again, then called multiple personality disorder. Sybil is played by Sally Field.

Tracy: [16:37] Black people don't get DID. [laughs]

Ken: [16:44] I don't look like Sybil."

Tracy: [16:45] [laughs] Right, and there is no one else that I can compare myself to. It took the movie "Frankie & Alice" for me to finally say, "OK, I'm not the only one." I know that was a fictionalization of a real person. Halle Berry plays the part.

Ken: [17:12] Frankie & Alice is a 2010 movie starring Halle Berry as a woman with dissociative identity disorder.

Tracy: [17:20] Wow, that was 20 years into my diagnosis before I got somebody that looked like me that I could relate to. You know how crazy that is?

Ken: [17:32] That is crazy, but it made a difference for you.

Tracy: [17:37] It was another level of validation, because, believe it or not, even in the hospital, my admissions for suicidal ideation, I was, again, isolated. I'm talking four or five hospitalizations being the only black person or having staff members say, "What are you doing in here? We don't come in the hospital."

Ken: [18:10] Were they black?

Tracy: [18:12] Yes.

Ken: [18:14] Staff members would say to you, "What are you doing here? We don't come to the hospital"?

Tracy: [18:19] You don't come to the hospital. Yeah. This situation, mental illness, runs a gamut of experiences and emotions. It's been intense.

Ken: [18:38] Yes, I imagine it has been. It's amazing that you're on the Peer Leadership Council, that you're volunteering to help others through this book. It's amazing. The journey is amazing. You've maintained a marriage for 38 years through all of it. It's incredible.

Tracy: [18:58] Nothing short of God. That's all I can attribute it to.

Ken: [19:02] We're back to God, right?

Tracy: [19:04] Right.

Ken: [19:05] You don't have to attend church to believe in God.

Tracy: [19:08] That's right.

Ken: [19:11] As you look at this whole experience, when you embrace it, let's talk about your family, your kids, because they're isolated. They can't talk about it. They can't put a name to it. They don't know what it is. There's a lot of shame. We don't talk about that. Then how is it for them now? You said they're adults. Are they in their 20s?

Tracy: [19:33] Oh, Lord. My daughter is 38.

Ken: [19:36] 38? OK.

Tracy: [19:37] 37 and 38. Thank you. [laughs]

Ken: [19:42] There it is. You have less gray hair than I do.

Tracy: [19:43] [laughs]

Ken: [19:45] My kids are in their 20s. I was just operating off of that. I used the gray hair test.

Tracy: [19:51] [laughs]

Ken: [19:52] Let's talk about, what's it like for them? Is this something they can talk about with you? Are they free to engage in discussions with you about it?

Tracy: [20:03] My son is a public school teacher. He teaches. His role is working with children with autism. He says he does that because of our experience.

Ken: [20:18] That he wants a life of service?

Tracy: [20:24] Absolutely. My daughter is a trainer with computers or something like that. She did not embrace my mental health easily at all. In fact, she was here for the summer. My daughter lives in Boston. I'm here in Texas. She brought her boyfriend down for us to meet. My husband mentioned something about my DID to the boyfriend, thinking he knew.

[21:04] My daughter and I had discussed. She wouldn't tell him about my diagnosis until he met me. I wanted him to meet the person, not the diagnosis, because people set up their own conceptions, context.

Ken: [21:17] Yeah, that's right.

Tracy: [21:22] He didn't know anything. When my husband mentioned it, I just said, "Oh, he doesn't know what you're talking about because we haven't discussed it with him, but now we have to, it being my daughter's pride."

Ken: [21:35] The cat's out of the…

[21:37] [crosstalk]

Tracy: [21:39] I don't know why. I've asked her. The idea still overwhelms her. She is now seeking counseling there. She just told me last week, actually, that she was looking for a counselor. It's not necessarily because of this. COVID pushed her into it.

Ken: [22:04] COVID pushed a lot of people into it.

Tracy: [22:09] My son is much more grounded with this situation than my daughter is. Here's something that's really ironic. I was so disappointed when we had to explain my diagnosis to my grandchildren. That's another generation that I thought it would be over.

[22:32] I'm not nearly as symptomatic like I was in the beginning, but there are times that I'm triggered. We had to explain that to our grandchildren. That crushed my heart because I was hoping that they didn't have to experience that. Initially, I was crushed. Now it's a norm. It's turned out to be a beautiful thing.

[23:05] I have two boys, two grandsons, and two granddaughters. They're all siblings. They all belong to my son. The boys are the bookends. The oldest is 14. The youngest is 6. The girls are in the middle 12 and 10. When the girls, whether it's the American doll or Barbie or whatever, they gravitate to dolls with disabilities, but it's so amazing to me.

Ken: [23:35] That is so amazing.

Tracy: [23:40] That is so amazing. What I initially thought was a major failure on my part not to have this stuff cleaned up by the time they came along, ended up another generation that's being taught sensitivity to other people.

Ken: [23:56] Beautiful because this was not your experience in your family. You now create a family, which now has multigenerational openness and discussion.

Tracy: [24:07] Absolutely.

Ken: [24:10] How do you think about…? I may not use terms that you agree with. Did internal family systems work? Did you do what kinds of psychotherapy to pull the part selves together? I may not use the proper terminology. I interviewed a woman who had DID, and these are the terms she used.

Tracy: [24:32] No worries.

Ken: [24:33] Forgive me if I don't have it right.

Tracy: [24:35] No, you're fine. I don't know. I'm sure you have heard of…I never get his name right, Colin Ross or Ross Colin. It's so first names to me.

Ken: [24:46] Right, exactly.

Tracy: [24:47] I'm not sure if that's right. [laughs] About 30 years ago, when all this unfolded, well, he still does. Now. he's in Denton, I think, but he was in Plano, Texas. It was very first of my experience. He had a DID unit. I was hospitalized there. I learned quite a bit.

[25:22] I was taught how to set up. It took years to get [inaudible] but set up an internal system where we had a place to live and everybody had their own room and set up to safety places and people who would help the injured, it's a very elaborate system.

[25:48] It's not so elaborate anymore since I am, I'd say, 90 percent integrated and we don't even like that word, but I've learned a lot over the years and not only from his program, because I've moved around the country and so I've had resources wherever I was, but yes, my internal system is very connected and helpful in recovery.

Ken: [26:27] Knowing that diagnosis means there's a very specific time to treatment.

Tracy: [26:32] That's exactly right.

Ken: [26:33] Because this is not any psychotherapy.

Tracy: [26:36] No.

Ken: [26:38] Let's just talk about…

Tracy: [26:39] I have many people just be intrigued with the diagnosis. I was doing more of the teaching than getting help and…

[26:49] Ken You mean therapists?

Tracy: [26:51] Yeah.

Ken: [26:53] You've done a lot of great work, and you've gotten a lot of benefits from it. How do you spend your days in addition to the peer leadership council work you're doing?

Tracy: [27:05] You know what, that's very interesting that you ask, because it's for most of my adult life, I've never not been able to manage having a job outside of the home as well as managing home. About four years ago, I took on a part time job. I don't do full time even still, and that's one of the things that I'm working on with wanting to get…

[27:45] I just recognize that my new coping skills have just become coping skills and it's time to get more healing. That's why I want to work on the brain mapping and all of that stuff. Because I'm also a part of other organizations beyond NAMI. I don't know you may have heard of an Infinite Mine with Jamie Pollack.

[28:13] That's an organization for people strictly with DD, dissociative disorders, of course. I'm a part of that as well. With the job situation, the last job that I had four years ago, I was able to hold for two years, which was huge. I'd never held a job for two years. I could feel the tension building with it. I did eventually have to let it go.

[28:52] I have since been working just things where I am flexible, I have more flexibility, part time things where I have more flexibility, so that's what I'm filling my days with. I just got certified as a notary public.

Ken: [29:18] Congratulations.

Tracy: [29:21] Thank you. I'm working toward being a notary signing agent. Again, it gives me that flexibility that I felt like I need. In the interim, I've just been a personal shopper with Instacart ship, things like that.

Ken: [29:45] It's great, but it's part of your brain mapping. [inaudible] more you'd like to do.

Tracy: [29:51] Absolutely. There's more healing to be had.

Ken: [29:55] That's beautiful. I'm going to ask you a little bit I asked everybody what their definition of recovery is or what recovery means to them. I know it's a big question, but I ask anyway. What is either your definition of recovery or what does recovery mean to you?

Tracy: [30:17] I'm trying to summarize recovery. What does recovery mean to me? Recovery, for me, it's not the destination. I think recovery is a journey and the beginning of the journey is acceptance, awareness. You start recovering the minute you can, except that you have a mental illness.

Ken: [30:57] I know that's true, but nobody's ever said it like that. You're the 105th person I've interviewed.

Tracy: [31:02] [laughs]

Ken: [31:04] I actually think it's true exactly what you said. It's fantastic.

Tracy: [31:08] Yeah. I also think that recovery encompasses being able to breathe. It's giving yourself permission to be fallible.

Ken: [31:21] When you say permission to breathe, what do you mean?

[31:24] [background music]

Tracy: [31:26] It's OK not to be OK. I've given myself permission to be fallible and not accept my infallibility as the end all but a part of the journey.

Ken: [31:53] This has been You Are Not Alone ‑‑ Voices of Recovery. For more episodes of this and other NAMI podcasts, visit nami.org/podcasts. That's N‑A‑M‑I.O‑R‑G/podcasts or check wherever you get your podcasts.

[32:09] For more information on the book, You Are Not Alone, visit nami.org/You‑Are‑Not‑Alone‑book. Lived experience is expertise, and that is true on every page.

[32:19] This podcast was produced by John Moe and Jordan Miller for the National Alliance on Mental Illness. We get engineering help from John Miller. I'm Ken Duckworth, and thank you for listening.

[32:30] [music]

back to top