Voices of Recovery, Episode 8: Late-in-Life Diagnosis & Mobile Crisis Teams

Tera Carter was 39 years old when she was diagnosed with bipolar disorder. She talks about that revelation and the reception it received in her community and family with NAMI’s Chief Medical Officer, Dr. Ken Duckworth. They also discuss the work she’s doing now as a certified peer specialist on a mobile crisis team.

Episode:

Episode Transcript:

[0:00] [background music]

Ken Duckworth: [0:00] Welcome to "You Are Not Alone ‑‑ Voices of Recovery." Hi. I'm Dr. Ken Duckworth. I'm a psychiatrist and 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."

[0:19] I was fortunate to talk to over 100 people for this book. People used their names in this book to reduce the shame and isolation that is so common with mental health conditions. I found that to be inspirational. I also picked up some important teaching lessons that I wanted to share in this podcast.

[0:36] This episode is almost two episodes in one conversation. I talked with Tera Carter, who lives in the Atlanta area. Tera was diagnosed with bipolar disorder, but not until age 39. She faced a lot of pushback in her communities when it came to being open about her mental health.

[0:54] We'll also hear about the work that Tera now does as a certified peer specialist on a mobile crisis team. Her role is a position that provides assistance to people in mental health emergencies. We'll also hear about Tera's involvement with NAMI and her work as a facilitator and national trainer for some of the classes that NAMI offers.

Tera Carter: [1:16] I have a grandmother that lives with Schizophrenia. My sister struggles with depression. I have several other family members that have mental health diagnosis. We also have substance abuse as well. My dad did struggle with alcoholism before he went to AA and went to AA and decided to make a change with his wife. I've kind of lived around that.

[1:43] I've seen family members struggle on both ends of the scope with substance abuse as well as mental health. Another reason why I do what I do, Ken is because from a cultural perspective, there's still a lot of stigma around mental health in the Black community.

[2:05] One of the tragedies that you see is you have someone like me who doesn't get diagnosed till 39, but I have been living with these symptoms since I was in high school. If no one is educated about mental illness and is not aware what those signs are, it's normal. The behavior is normal. Nobody thinks anything of it, right?

Ken: [2:29] That's true in the community. Did you ever see a doctor and describe it to the doctor and the doctor's not able to see it because of racism? Have you had that experience?

Tera: [2:40] I haven't had that experience. I did have…My husband and I went for a marriage workshop in our church one time, and the lady that was over the workshop was an LPC.

Voice‑over Narrator: [2:54] LPC stands for licensed professional counselor. It's a master's degree level professional.

Tera: [3:02] After the workshop was over, I told her that I felt like I had moments where I had a lot of energy, and then after like six to eight months, my energy would drop down and I'd be feeling like I was almost depressed. I'll never forget her telling me, "You need to see somebody about that," and I was like, really? Because I was like this is just how I've been my whole life. [laughs]

[3:30] She was like, "No, you really should see someone about that." A couple of years later, I did. What I found, Ken, is that one of the things that's tricky about getting an official bipolar diagnosis is, people tend to see a doctor according to the phase that they're in.

[3:50] When I did see someone, I was seeing someone because I was feeling depressed. I was having depressive symptoms, and I was having problems with my focus. I ended up being misdiagnosed with ADHD as an adult.

Ken: [4:07] They didn't see the movie. They only had the snapshot.

Tera: [4:10] Exactly.

Ken: [4:11] Right?

Tera: [4:11] Because they were only getting these snapshots, and then of course, by the time I started experiencing the manic episodes, mania feels good. When you have a lot of energy, you don't think about the fact that you're only sleeping three or four hours.

[4:29] That was the norm my entire life up until I got diagnosed, was that was the average for me, was to sleep three or four hours and that's it. Of course, once mania starts stepping in, it would go from three to four hours to not sleeping at ll. I'm not sleeping for two days straight, and then going back to three hours. That was just the cycle that I was in.

[4:52] Like I said, this started in my junior year of high school, the moods shifting. My junior year in high school, I turned into a completely different person. I was very shy, very withdrawn before, and then my mood shifted when I was a junior and I was a completely different person.

[5:12] I always tell people that when you have bipolar type 1, you almost have what I call an alter ego. When you are in a hypomania mania, you're an extended version of what your real self is. When I'm in those phases, I am very extroverted. Not introverted, I'm very extroverted. I talk a lot.

[5:37] I would call myself a leader, but I feel like when I'm in those space my personality is more dominant. I have more of a dominant personality. I feel like I have an extra level of charisma when I'm hypomanic.

[5:58] When you start functioning…When you're in manic episodes for long periods of time, then people forget who the other person was. I feel like that's what happened when I started working in the music industry. I started as one person, but maybe two or three years in I turned into this other person because I was always functioning in this hypomanic manic type of space.

[6:23] When I had my children…I had my children. My children are all pretty close in age. That whole time during childbearing years I was in depressive episodes. That entire time I did not see during that time that I was depressed. It wasn't until after I had my last daughter that I really thought maybe something was wrong.

[6:46] My mom had brought it up several times. I had some friends that had brought it up, but it was very difficult for me to see that I was depressed, but I was.

[6:58] Then, after I had my children and they started going to school and I reentered the workforce. That's when things started shifting and I started having these longer episodes of hypomania and mania.

[7:17] Before working and going into the music business, I worked at a large church. I was the assistant youth director there. Again, I don't know why I like high stress jobs, but that was a very high stress position.

[7:35] That position ended up being dissolved due to the economic crisis. That's how I ended up starting as a volunteer in the entertainment industry and working my way up to an executive. I did feel like that was my dream job. I thought that I was going to retire in the music business. That is not what happened.

[7:55] I had a…

Ken: [7:56] You mentioned a conversation you had with a psychiatrist about that that changed the way you thought about it. Do you mind…?

Tera: [8:05] Oh, absolutely. I love my psychiatrist. I've been blessed to have the same psychiatrist and therapist since I got diagnosed. They've been with me from the beginning. They're still with me now. I'm grateful for that because I know a lot of people don't have that.

[8:20] My psychiatrist told me when we were talking about work, the first thing he told me was that I probably wouldn't be able to work for three to five years. That was alarming for me because I had been working my whole life. I had been working since I was 16. To hear I wasn't going to be able to work, it would be best for me not to work during those times, was disturbing for me.

[8:43] I did try anyway, three times. I tried and it was a disaster. I really needed to rest.

[8:50] The other thing we talked about was my line of work. I was in the music business on the management side. Very stressful. Required a lot of traveling. Required a lot of long hours, sometimes, especially when touring times came up.

[9:09] When we talked about it, he was like, "You really need to consider whether or not this is going to be best for you and whether or not you can stay healthy in that line of work." He did not feel like it would be suitable for me to be able to stay healthy being in that line of work that I…"

[9:28] He was right. I made the decision to not go back into the music business.

Ken: [9:34] I want to develop this idea. I think I mentioned to you, my dad had bipolar disorder. I became a psychiatrist to help him. He was the most loving man, but he periodically got very sick, hospitalized, hearing voices.

[9:47] Did you have any of those experiences or not so much?

Tera: [9:52] For me, I've only been in the hospital one time. That was when I first got diagnosed.

[9:59] My bipolar disorder, I don't have the psychotic features when I go into mania. That's not something that I've experienced. I've been inpatient one time. Then, I've done outpatient one time, as well. That's been my experience as it relates to treatment in the hospitals.

Ken: [10:18] What about the experience of it? You mentioned you kind of liked it. You're charismatic, high energy, getting stuff done, and very high level. What is that like? When you got a diagnosis, did you feel like you were losing something? The question is about the seductiveness of being [inaudible] .

Tera: [10:43] It's very seductive. I'll be honest that I do at times miss the extra energy. I will say that I do go through seasons where I have more energy than others. Typically, in the fall, my energy level drops. All the time around October, it just happens. In the spring, in the summer, I tend to have a little more energy.

[11:10] Do I miss the day sometimes where my energy was just off the charts and I felt like I can do anything? Yes, I miss that. [laughs]

Ken: [29:34] When you got the diagnosis of bipolar disorder at 39 years old, so not early, what was your experience of that? Did it make sense, did it feel like you're going to lose something?

Tera: [11:32] I think because I had just went through the trauma of losing so much, when he told me about my diagnosis, it made sense. It was a sense of relief for me because it explained so many things that happened over my life that I couldn't make sense of. [laughs]

[11:58] I was never in denial about it. The only thing I was in denial about was not working. [laughs] I wasn't in denial about the diagnosis. I embraced it. I became very passionate about finding out everything that I could about the illness. I didn't see it as I was missing out.

[12:24] I think it was because I was older and I still, even though I have been going through these episodes all my life, I still was able to manage to get to a certain level of success even while sick. For me, I did not feel like necessarily I missed out. I think that what I realized was that because of the illness, I was not able to sustain and be as productive as I could be.

[12:53] I think that my mind went more towards that. What could I do if I was able to maintain some level of stability? How much more would I be able to do if I was able to get to that place? It was very much a relief for me to have an answer to all the different things that had happened over my life.

Ken: [13:16] It sounds like it just fit.

Tera: [13:18] It did. It fit, and it made complete sense. For my family, what was funny about my family members is, at the hospital that I was at…The hospital I was in was called Richview Institute in Smyrna, Georgia.

[13:33] My family came for the family days. The first time they came out, and they were at a class ‑‑ they didn't believe that I was living with this disorder ‑‑ but they came to the class, and the class was breaking down what looked like to have bipolar disorder. I'll never forget when the class was over, we had a session together, and they were like, "Ma."

[14:00] We were like, "Mom doesn't have bipolar disorder." Then they started wandering down all those symptoms and we was like, "Uh‑oh. Mama had about 10 of those…"

[14:08] [laughter]

Tera: [14:08] on the list." Even for them, for them being able to see what were those, the warnings, and what were the symptoms, once they were able to see, they were able to see a stark difference.

[14:24] Once I started treatment, I think I had been home about two weeks and I finally asked my family member why they kept asking if I was OK because they kept asking me that and I didn't understand why. When I asked them, they were like, "You're very calm."

[14:42] I was like, "What do you mean I'm calm?" They're like, "You're calm, and you're calm all the time now." I was like, "I wasn't calm before?" and they were like, "Nope." [laughs]

Ken: [14:50] No, you were not calm before."

Tera: [14:51] You were always on 10. You were on 10 all the time." You start learning different things about how you were before treatment versus in recovery, and you have to lean on the people that love you the most to help you see how you were because you don't see it when you're in it. It was a very unique experience.

Ken: [15:18] That's an amazing gift to give to them. You can talk about it. Because you mentioned the Black community has not been particularly open to that, so I'm guessing there wasn't a conversation that you had in your own family about mental health, mental illness, addiction.

Tera: [15:38] The thing that was interesting was that my grandmother lived in the house with us for 15 years, and she has schizophrenia. We knew what schizophrenia looked like because she lived in a house with us. As it relates to bipolar disorder and depression, there wasn't any talks about those things. We just only knew about the schizophrenia because grandma had that, was living with that.

[16:06] We didn't know anything about the other disorders, and so we were blind as it relates to that. I think, honestly, that so many of us on the family have those symptoms that for the older people in my family, they just feel like that's just normal. It's just normal to them.

[16:27] They don't think that there's anything wrong. Because of my experience, my kids are very educated on mental health and they have a great understanding of it. I have two kids that have some of their own mental health challenges as well, and so we've been very proactive with them and I feel like they have an advantage because they do know so much because of my experiences of how to handle this.

Ken: [16:55] How about your faith community? How did they deal with all this and how has that evolved as you've shared, or have you shared, within the faith community?

Tera: [17:08] I believe that my faith community has the same level of stigma that the Black community has as relates to mental illness. In my situation, I was working in the music business in the faith community. I was working for a Christian record label.

[17:29] When my crisis went down, it was very public. It was challenging, it was hard. Because I was so functional, it was difficult for people to accept that there was something wrong with me.

[17:46] It was difficult for people to accept that I had a mental health disorder because they've been able to see me and do so many great things. "There's nothing wrong with Tera. There can't possibly be anything wrong with Tera because we've seen her do X, Y, and Z." The level of stigma was high. The shame was high.

[18:06] The guilt was high. I lost so many people that I thought were friends. I lost them. I want to make sure that I communicate that when we're in the middle of a crisis, it's important for people to know that people get hurt. One of the hardest things for me to deal with was that my illness led itself to people getting hurt that I love.

[18:32] Even though the things that I did, I did them and I didn't do them intentionally to hurt people. It doesn't take away the fact that they were hurt. I had to make peace with the fact that I lost a lot of people out of my sphere of influence because my behavior during that time hurt them. Because it hurt them, there was this divide.

[18:58] There's some people I pray that I'll be able to make amends with, and maybe see them, or have some type of interaction with them, to be able to dialogue, and be able to share from an authentic and a vulnerable place what was going on during that time.

[19:15] Most of my hurt and pain came from my faith community. I think, definitely, the rejection was probably the biggest thing. Me living as a Christian, one of the things that's very difficult for people to understand is that there's a reason why we call behavior health behavior health ‑‑ because when people are sick, their behavior changes.

[19:45] In the Christian community, there's a difficulty of being able to see that a person is sick. Because they're sick, they're "sinning." Being able to separate that from the fact that that person is ill, that is very difficult for the Christian community to do.

[20:06] I am passionate about that. I do go to as many churches as I can to be able to talk to leadership about the importance of addressing things at the right time. You can't talk to someone about sin when they're sick. You just cannot do it. It's not going to end well. It's not going to be productive.

[20:29] I think that that was the biggest hurt piece was that, unlike if I had cancer, we probably would have had a whole slew of people over supporting my family, but we had a mental health crisis, and so because of that, nobody wanted to deal with us. I'm grateful that the best friends that I have stuck with me, and I can name them on one hand.

[20:56] They stuck with me through all of it. One of them actually worked with me at the label, so she was there up close and personal. All the other people kind of went to the wayside, and that was something that was difficult for my family as well because we were all very close‑knit.

[21:16] My children had a very difficult time understanding, how is it that mummy did all these things to help people, and these were our friends, and now our mummy's sick…Because they're young. They don't understand that those people didn't see mom in the hospital. They didn't see that. You see that, but they…

[21:37] [crosstalk]

Ken: [21:37] They didn't know yet, yeah.

Tera: [21:39] They didn't know that. For them, it was very difficult. That's why therapy was important for them. It was important for them to go to therapy to try to work through some of those things as well. It was a challenge. It was a challenging…

[21:53] [crosstalk]

Ken: [21:53] I hear that. Did the minister ever meet with you and have a discussion about your behavior? No.

Tera: [22:01] No.

Ken: [22:02] You got the feeling that you were seen as a person who was sinning?

Tera: [22:06] Yeah, definitely.

Ken: [22:09] Did they ask you to leave or take a break?

Tera: [22:13] I got fired.

Ken: [22:14] You got fired?

Tera: [22:16] I got fired from my job, and because my job was based in the Christian community, that's where all the backlash happened. When I say my faith community, I had the most pain from that community is because that was my whole world. Everyone I worked with was part of that community.

[22:38] All of my friends were part of that community, and it was like a double‑edged sword because they were people that I worked with as well.

Ken: [22:44] Yes, I see it. Have you found the church more open as you've been engaging with them now?

Tera: [22:51] Absolutely. What I have seen is that even the church that I'm a part of now really takes mental health very seriously. We bring speakers in. We have workshops and classes that we make available to our members. We're starting to see more of that.

[23:14] You have churches now, like The Potter's House in Dallas, T.D. Jakes' church. They have a full‑fledged counseling ministry with LPCs available on site giving free services to the people that live in their community.

[23:30] Now, we're seeing a spark in that community, as well as the black community, too. There's the spark there, too. We still have a lot more work that needs to be done, but we are seeing people starting to open up. We are seeing people in the faith world come out and talk about the challenges that they're having. Being more open about it.

[23:51] We're seeing more people in the black community, as well, coming out about these things. I feel great about the way things are going. I think we're going to continue to see even more walls being broken down as it relates to that.

Ken: [24:12] Tera, you're seeing this change in seven years.

Tera: [24:14] In seven years, yeah.

Ken: [24:17] This is not last week. It's seven years, this has all happened.

[24:20] The question I ask everybody is, what is your definition of recovery?

Tera: [24:24] Ooh, let's see here. I would say that my definition of recovery is getting to a place to where you have peace with whatever mental health condition you're living with, that you have the peace with it, that you have an understanding of it, and that it's no longer causing havoc in your life.

[24:46] You're at a place where you are able to manage that illness. It doesn't mean that those symptoms go away altogether, but you're able to manage it in a way to where you can still have a productive life and you can still fulfill whatever your purpose is.

[25:02] I do believe that all of us are here for a divine purpose. All of our purposes look different. Just because I live with a mental health condition does not mean that I can't fulfill the purpose that I have for my life.

[25:16] That's my definition. I do think that peace and understanding part is what is able to keep people in recovery for the long‑term.

[25:28] I wrote a quote the other day for mental health for Recovery Month. I was looking at the difference between warriors and soldiers and what the difference between the two are when it comes to recovery.

[25:46] One of the things I thought about, I always consider myself a warrior when it comes to recovery. Warriors are…Soldiers do their due diligence but sometimes soldiers fight even when they don't want to fight.

[26:03] I see myself as a warrior because warriors are always up for the fight. I think one of the things that keeps me in my recovery is that I know the fight is part of the recovery so I expect it. You see what I'm saying? I expect the fight.

Ken: [26:19] I'm not surprised by it.

Tera: [26:21] I'm not surprised by it, exactly.

Ken: [26:23] No, it's got me. This is life. This is what this is.

Tera: [26:26] It's what it is. When we get to that place where we're not thrown off when something happens. Now, a couple of weeks ago, my mood had dropped. OK, you don't get surprised. You're like, "OK, this happens sometimes." How do we deal with it when we don't have that mindset? We're constantly thrown off by our symptoms and things like that. It makes it difficult to adjust.

[26:55] If we have the mindset of, "This is part of…Recovery is the fight," then I think it helps us.

Ken: [27:03] As I mentioned, Tera now works as a certified peer specialist on a mobile crisis team in the Atlanta area. I asked her what that work involves.

Tera: [27:12] When we go out, my role as a second responder is to communicate why we're there. We're with the mobile crisis team. I explain what we do. I go over the consent with the individual and tell them what their rights are as it relates to the call.

[27:34] I tell them…make sure that they know who the clinician is. Then, I explain to them what my role is. I try to be very thorough about that so no one is alarmed that I'm writing. We talk to them about confidentiality. I make sure that they understand the exceptions to the confidentiality rules.

[27:57] If you are a harm to yourself or a harm to someone else and you're not willing to voluntarily get help for that, then we legally do have to step in. You want to explain as much as possible on the front end so that there's not any surprises.

Ken: [28:12] What do you tell them about your experience? When do you introduce that idea to use your judgment? Is that in your opening, intro?

Tera: [28:20] It's not in my opening. I use my judgment on that. Typically, what happens as it relates to me sharing my experiences, we're assessing someone, and they say that they have a mood disorder, and they may say that they're struggling with their medication.

[28:40] Or, they say, "I'm never going to be able to get better." That's when I step in and be like, "No, no, no. You can get better."

[28:48] [laughter]

Ken: [28:51] Then, they say, "How would you know?" Then, what do you say?

Tera: [28:55] Exactly. I know them. Most of the time, after I tell them, they're like, "Are you serious?" I'm like, "I'm very serious. I am very serious that I've been in crisis. I've lost just about everything. Had to rebuild, having to take medication, find the right medications."

[29:14] It gives people hope. It gives them hope to be able to see that it is possible to do better. I also make sure that I share that it requires work. It requires work, it requires commitment, and it requires consistency. You have to hang in there.

[29:34] If you don't find the right medication the first two times, you might have to try three, four, or five times.

Ken: [29:39] Keep going, keep going.

Tera: [29:40] You got to keep going. You got to keep going, and you have to be, like I said, you have to be your biggest advocate. You have to say that, "I'm willing to do whatever it takes for me to get to a place to where I'm able to manage my illness."

[29:58] I love being able to share when I'm out on the calls. Sometimes, it's with the individual that's in crisis. Sometimes, it's maybe with the parent, maybe it's with the spouse.

Ken: [30:08] How might that look? Can you think of one?

Tera: [30:12] Yeah, absolutely. I've had discussions with spouses, because I was married for 21 years. I was married for 21 years, and so in the middle of my marriage, we had to go through my crisis, and so I'm able to speak with a partner.

[30:30] We had one time, a guy, and he was frustrated. He was having a hard time with his wife, who had bipolar disorder. I spoke with him from the perspective of how he has to take care of himself. He has to make sure that he practices his own self‑care, because he was draining himself, trying to do everything for his wife.

[30:54] I told him that it was important that his wife had to take ownership for her own recovery, that he couldn't save her. "You can't save her. She has to want it for herself, and you have to put those boundaries in place to keep yourself healthy."

[31:10] I've been able to speak from that perspective. I've been able to speak from the perspective of family members that are frustrated because they want their loved one to get the help. Telling them that they have to be at a place where they're ready to get that help themselves.

[31:30] Until that happens, you're limited on what you're able to do. From a parenting perspective, I have three kids. They're 23, 21, and 20. When I was going through my crisis, all my kids were teenagers. Even being able to share with a individual, last individual I spoke with as it…