From Hiding To Helping - Schizophrenia Advocate Rebecca Chamaa | RDID; 206

At a recent conference for health advocates from all across the country, our Executive Director and show host, Gabriel Nathan, was reunited with an extraordinary woman and schizophrenia advocate, Rebecca Chamaa. Years earlier, in around 2015, Rebecca had submitted her very first essay, I Have Schizophrenia, about living with mental illness to Recovery Diaries and Gabe, who had just joined the organization as a part-time essay editor, was assigned to work on her piece with her.  

It would take ten years for these two mental health advocates to be physically in the same room and share a warm hug and conversation. So, obviously, Rebecca was going to be a guest on Recovery Diaries in Depth! As you can imagine, she and Gabe had lots to talk about. Rebecca revealed during the conversation about how long (very, very long) she hid her schizophrenia from so, so many people in her life, her experiences with therapists and psychiatrists, medication, and stigma. Rebecca is breathtakingly blunt as she explores her education and outreach, training law enforcement officers and psychiatric nursing staff about schizophrenia and how to safely and helpfully interact with people who live with thought disorders. 

The highlight of the interview, arguably, is Rebecca's reaction to her now decade-old essay on Recovery Diaries; in quiet disbelief at how honest she was during that time. The piece obviously opened the floodgates for Rebecca, because now she has been published in numerous magazines, journals, and newspapers; she teaches writing and she finds joy in life as a person living with schizophrenia who isn't keeping it from anybody, who isn't ashamed of it, and who isn't staying quiet. Please listen to her wonderful interview and share it far and wide; it might just change how somebody sees people with schizophrenia.

Conversations like the ones on this podcast can sometimes be hard, but they’re always necessary. If you or someone you know is struggling, please consider visiting wannatalkaboutit.com. If you or someone you know is considering suicide, please call, text, or chat 988.

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Transcript

Welcome And Rebecca’s Background

Gabe Nathan 0:00

Hello. This is Recovery Diaries in Depth. I'm your host, Gabe Nathan. Thanks so much for joining us. We're very happy to have you here. We are so, so happy to have on Recovery Diaries in Depth today Rebecca Chamaa. She is an old friend of Recovery Diaries. She lives with schizophrenia and anxiety disorder. She's a writer. Her pieces have appeared in Teen Vogue, Good Housekeeping, Glamour, Women's Day, and of course, Recovery Diaries. She's also a speaker for NAMI. She trains law enforcement, nurses, therapists, and other people who work with those with mental illness. Each week, we'll bring you a Recovery Diaries contributor, folks who have shared their mental health journey with us through essay or video format. We want to see where they are on their mental health journey since initially being published on our website. Our goal is to continue supporting our diverse community by having conversations here on our podcast to follow up and see what has shifted, what has changed, and what new things have emerged. We're so happy to have you along for this journey. We want to remind you to follow our show for new and back episodes at recoverydiaries.org. There, like the podcast, you'll find stories of mental health, empowerment, and change. You can also sign up for our mailing list there so you never miss a new podcast episode, essay, or film. And you can find this podcast pretty much anywhere you get your podcasts. We appreciate your comments and feedback about our show. It helps us improve, make changes, and grow. And of course, make sure to like, share, and subscribe. Rebecca Chamaa, welcome to Recovery Diaries in Depth. It is such a pleasure to be sitting here talking to you.

Rebecca Chamaa 1:53

Oh, thanks, Gabe. It's it I I know it's a pleasure for me as well.

Coming Out And Early Advocacy

Gabe Nathan 1:59

So we've known each other for a long time, and uh on the same end, we're kind of new friends. So can you talk a little bit about how we quote met? Because we didn't really meet until uh last month, I guess it was. Um, but a long time ago we we e met. Um can you talk a little bit about like the those beginnings?

Rebecca Chamaa 2:24

Yeah, it was uh a unique time for me. I had just um just come out uh publicly with my diagnosis of uh chronic paranoid schizophrenia, and I was writing as much as I could to educate and advocate about that. And I kind of came across OC87, the um uh diaries, and um I think I pitched uh uh an essay to you. I don't know if you contacted me or I contacted you. I'm not sure. This was way back in 2014 or 2015. And um and I wrote that, and and that was after 20 years of being of hiding, of just my husband and I living in a bubble uh of us dealing with my mental illness by ourselves. I mean, my family, of course, my mom and dad and um my brothers knew that I had schizophrenia, but none of my husband's family knew that I had schizophrenia, and none of our friends knew that I had schizophrenia. Um, and I I just had come out, um, I started a blog and I found out about you, and uh we worked on that essay together, and that's how I met you. And then last month we were both at a health advocacy conference, and I heard your name in the room, and I just turned around and thought, oh my goodness, you've got to be kidding me. Um, I knew your name. I I I recognized it, I remembered it, and then we got to spend a lot of time in person together, just kind of talking about what's happened um since that that time in 2014 or 2015.

The Promise And Pitfalls Of Mental Health Advocacy

Gabe Nathan 4:15

And and talking a lot about issues related to mental health and mental illness, and you know, gaining so much from connecting with you at that conference, um, you have such a different, unique take on a lot of things. Um, and we're gonna get to to talking about a lot of that because there's a lot of different perspectives and a lot of influencers and advocates out there, um, some who live with SPMI, serious and persistent mental illness, some, you know, who have other mental health challenges. And, you know, advocacy is a wonderful thing, right? Like it it enables people to uh who otherwise couldn't to have a platform and to speak their mind and speak their truth and and and be heard and seen. And for so many people living with mental illness, like you're invisible, right? So advocacy is a wonderful thing. There's a flip side to that where it can be uh kind of unhealthy uh or even dangerous um because there may be people putting out misinformation or putting out opinion and labeling it as fact. Um, not everybody is super responsible um with what they put out there into the world. And so it was really lovely and refreshing to talk to someone who uh is responsible, is thoughtful, um you know, really does her homework on things, um, is fact-based and and speaks from you know, I don't know how old you are, and I'm not gonna ask, but I it's okay.

Rebecca Chamaa 5:56

I'm 60. You're volunteering. Okay.

Gabe Nathan 5:59

So I mean, and that's thank you. Uh I'm 45, not that anyone cares. But uh, you know, the the thing about the thing about you, and I think your your Instagram handle is is it's some senior it's schizophrenic senior. Schizophrenic senior, right? And that's a badge that you wear with honor because lots of people with schizophrenia don't make it to 60. And can you talk a little bit about that, please?

Rebecca Chamaa 6:26

Yeah, that is why I I used to, and in my essay, people will see this. I used to refer uh not ever want to be referred to as schizophrenic. I always chose first person first language, um, schizophrenia. I wanted to be a person with schizophrenia, I wanted to have that um separation between me and my identity. But I realized that um on Instagram anyway, um that uh without that in my title, people wouldn't find me. So I chose the name schizophrenic senior, and the senior part is the important part because you're right. I mean, statistics show, um, I don't know if there's been any update in statistics lately, but statistics show that people with schizophrenia die 15 to 20 years earlier than the average population. And I've talked to my own psychiatrist about why that is, um and and why he thinks that is, it's his opinion. Um, and there are a lot of reasons for that. Um uh suicide is one of those reasons, um, smoking is another one of those reasons, heart disease is another reason, and some of those reasons come about from being on long-term antipsychotic medication. So I love to say to people, I I and that's why I said offered willingly that I'm 60 is because I'm proud of being 60. I'm thankful to be 60. I'm delighted that I'm 60 and that I can advocate as someone who's a senior and say, you know, this is what's possible.

Longevity, Stigma, And What’s Possible

Gabe Nathan 8:09

Yeah. And I think there's a lot, a lot that I have to say about this. But I mean, A, I'm so glad that you're here on the show and that you're still here on Earth at 60, living with chronic paranoid schizophrenia. And, you know, um, my aunt didn't make it that far. She took her own life at 52 at a psychiatric hospital in Israel, um, also diagnosed with chronic paranoid schizophrenia. And I used to work in a psychiatric hospital um in southeastern Pennsylvania, and a lot of people with chronic paranoid schizophrenia would come in and recidivism was very high. You know, you would see it when they were admitted 111th admission, 123rd admission, over and over and over and over and over again. And I would see the chain smoking, you know, in the smoke room, which thank God the hospital doesn't have anymore, but we used to have a smoke room, and you know, they would be in there just on on tiny little little little little bits of of cigarette to the last nub and and picking them off the floor and and what you said uh uh about proudly proclaiming that you're 60 and letting people know what's possible, I think uh seeing you and hearing from you and learning from you is so vital, um, particularly uh for clinicians and providers. Um because when I think back to my days working at the hospital, uh I think that we all had a very, very narrow view of what was possible for people living with chronic paranoid schizophrenia. And it was basically they're gonna be sleeping in the bus terminal and they're gonna be walking around in hospital robes, um, you know, with uh acathesia and um um tartive dyskinesia and carrying their belongings in a brown paper bag and you know dying if they're lucky in their early 50s. And it's just not true. And it doesn't have to be that way. And I hope that you are I hope that you're uh speaking to clinicians. I I hope that mental health providers are hearing you and reading your work and inviting you in to give talks. I really hope that's happening. Um, because I think a lot of people could could really benefit from just seeing what's possible.

Rebecca Chamaa 10:54

I do do public speaking, um, mostly with not clinicians as much as nurses. I do um training of nursing students and um law enforcement and um uh and uh psychology students, so uh some some people working, but not so much on the psychiatry end, not so much on the prescribing end, which would be more beneficial, I think.

Gabe Nathan 11:23

Yeah, you need to be in psych hospitals. I'll be your manager. Like honestly, okay, that would be great. You really need to be giving true because some trainings that we went to at when at the hospital were so fucking dumb um and so pointless. And and to have to have someone like you up there talking to psych nurses, uh CRNPs, psychiatrists, um about what is possible, um, I think that could really be revolutionary because I think as a as a provider, you really get stuck in a lens of like this is what it is. And these I'll I'll share a personal story. Um one day I showed up for work and you know, you look at the names of whoever was admitted overnight. And I saw a name and my heart just like fell to the floor, and it was uh someone I went to middle school and high school with. And I was like, what the hell? What is this person uh doing here? And I went and I pulled her chart and um chronic paranoid schizophrenia, uh, first break, first admission. And um I didn't uh let on that I knew her, like I she was in the group, um, and I I maybe should have said something. I didn't know if it was the right thing to do, if it was boundary crossing or not. Um but like I just went about kind of just treating her like any other patient, right? Um, but I did have a conversation with her psychiatrist, and I said, you know, what is what do you think about her? What's her prognosis like? And he said, um, you know, it's gonna be really bad. It's it's just gonna be really bad. And this, you know, this was a long time ago. Uh me and this person I went to school with, we were in our early 30s. Um, and to basically kind of write her off as like this is what the rest of her life is gonna be, um really just drove home to me that this was a clinician who was also not terribly far into his own career, who just wrote this person off. Um and I don't know, I just think it's it's a real shame and a real kind of lack of imagination and and understanding of of what's possible.

Misdiagnosis, Medication, And A Six-Month Psychosis

Rebecca Chamaa 13:55

Yeah, you know, but I've had such a different experience. My first diagnosis was bipolar disorder with psychotic features, and I held that diagnosis for at least 10 years, but I'm not sure how long. And at first I was I was non-compliant on my medication. I would go in and out of psychosis on a regular basis because I just couldn't believe, I was a social worker at the time, I just couldn't believe that I was mentally ill because I have this vision in my mind of what mental illness was, which is what you're talking about. People have this vision in their mind of what mental illness is. So I met my I met my second husband, the one that you met at the training. We've been married for over 26 years. And um, and I knew that if I was gonna have any chance with him at all, that I was gonna have to take my medication. So I started taking my medication regularly and then had 10 of the most productive years of my life. I worked at a library uh in a university, an architectural library. I had friends, I socialized, I sat on city council um committees, I just did a tremendous amount, it was mostly productive. And then the psychiatrist said to me, There's something wrong with your diagnosis. And I said, Really? And he said, Yeah, in fact, I don't think you're mentally ill at all. And he took me off all medication. Well, within a year, I was because again, he couldn't see this successful person as someone who had a mental illness. So I was taken off all my medication and ended up psychotic for six months, six whole months, which is a very long time. Because I know that you know that psychosis does damage to the brain. So I was psyched, and I never did regain that level of productivity, that level of success that I had before that episode. But anyway, after that incident, I went to a new psychiatrist, obviously. Um big surprise. Um, I went to a new psychiatrist and I was diagnosed with chronic paranoid schizophrenia.

Gabe Nathan 16:06

Wow. And that's so amazing how human beings can have blinders on, right? Oh, this person can't possibly have this. And you had the same thought when you were a social worker. I can't possibly have this. And it's it's amazing how our brains can can trick ourselves. Um and also this idea, too, that like I experienced it at the psychiatric hospital, too, that there's us and there's them. There's the people who have mental illness, and then we have keys and ID badges, and we go home at the end of our shift, and it's them and not us. And the truth is that we were all fucked up, all of us, the patients, the staff, everybody. I mean, everybody. Um, and you know, a lot of us were kind of in denial about it, or we're engaging in maladaptive coping strategies, drinking, you know, heavily. That was a huge activity for a lot of the staff. Um you know, I never joined in in that. I I had other maladaptive ways to cope with the situation that I was in. But like that, it's it's it's them over here. And same thing with suicide, right? There's people who kill themselves, and then there are people who don't. Um, and that's just the way it is. And that is so not true, also. Like, we all have risk factors, we all have protective factors, and they change all throughout our lives. Um but but yeah, our own minds can really uh do a number on us. Um no matter how much training and how much education we have, um, those perceptions can really still get in the way. Um I I have a question for you related to living with schizophrenia and kind of hiding it. So, you know, you you mentioned that like no one in your husband's family knew, um, that you hid it from friends and and colleagues, I'm assuming. And like, so I live with anxiety and depression, right? And even though a lot of people in my world know that, um, there are people who don't. And it's not hard to hide that you live with anxiety and depression, but I feel like it would probably be really hard to hide that you live with schizophrenia. And can you just talk about like how do you even do that? How did you how did you do that and why? Um, I would love to know the reasons behind it. And they're probably different. So, like, why did you hide it from your husband's family versus hiding it from other people? Um, so I just want to hear about that.

Shame, Disclosure, And Building Support

Rebecca Chamaa 18:53

Um, yeah. So why I hid it from my husband's family mostly was I just couldn't cut get a break with them. I mean, they didn't uh they didn't like me and they didn't welcome me into the family, and now they they like me and now they welcome me into the family. But I mean, it took years and years and years. And so I I just thought another thing, you know, telling them, I mean, just another thing, another reason for them not to like me. Our friends, you know, I think there was a lot of shame involved. I think, and I think there's still a lot of shame. I'll tell you an interesting story. When we were at the uh the advocacy conference where we met in person for the first time last month, my husband said, You had a a lanyard around your neck that said schizophrenia. He said, I cannot believe that we were in a space with people that you actually literally had a sign around your neck saying schizophrenia, and everyone talked to you and everyone interacted with you, and everyone. Just sat next to you at dinner and no one looked at you, and everyone had normal conversations with you. And I was like, You're right. I actually literally had a sign around my neck saying schizophrenia. And I was treated like everyone else. And I don't, and I didn't realize the absolute metaphor and profound nature of that. Um, because I think I've carried a lot of shame about it and a lot of fear around um, how will they accept me? Will they accept me? Will they reject me? Um, I happen to work at NAMI now. I mean, that's one of my jobs. We'll talk about that later, but I I do. And, you know, in order to work at NAMI, you have to have personal experience with mental illness, either you someone you love or cared for, or you have to have it yourself. So that's another environment that I'm in where it doesn't, everyone knows that I have schizophrenia and it's okay. It's it's completely okay. But I find that that's very unique. I find that that's very, those are very sacred spaces. And um, and I I feel I guess the the thing I um I kind of talked in circle a little bit there. Sorry about that. But um, I guess a little bit of it is shame, maybe a lot of it, and fear.

Gabe Nathan 21:24

Fear of how you'll be perceived, fear of how and fear of rejection.

Rebecca Chamaa 21:29

Yes, fear.

Gabe Nathan 21:30

Have you I mean, so again, as someone who lives with anxiety, I'm always afraid of things. I'm always afraid that a situation is gonna go bad or that I'm gonna be rejected or that someone's gonna be mean to me, or like constantly, right? What I find is uh and what I've tried to learn through therapy and tried to tell myself is that most of the things you're afraid of uh don't end up actually happening. Because that's what anxiety does, right? Trying to put up guardrails and protect you from all manner of things. Most of them never happen. But I'm assuming that you have had experiences with being rejected because of schizophrenia. Um maybe I'm wrong. I don't know. Um, have you?

Rebecca Chamaa 22:16

I think when I first came out, and when I first came out, what I did was I did a blanket, okay. I took social media and I wrote an essay and I put it on my Facebook. And so everyone who I was connected with on Facebook all of a sudden knew that I had schizophrenia. And that's the way I came out. Well, the first thing I did was I got a challenge from my psychiatrist at the time, who was a lovely woman. Um, very, I just really, really connected with her. Um, she told me, I'm gonna give you one assignment. I'm gonna tell you you have to tell one person you have schizophrenia. You have to tell one person in your social circle that you have schizophrenia. My husband and I talked about it for months. And um, we came up with one of our friends who's uh happens to be almost all of our friends are social workers because that's what the field that I worked in for so long. So um we came up with one of our friends who's a therapist, not our therapist, a friend of ours. Um, and we told him and he asked some questions. He was a little bit taken back, he asked some questions about it, and then he just turned the conversation back to our everyday lives. And it was so successful, right? I mean, what better response could you have other than ho hum, you have schizophrenia?

Gabe Nathan 23:42

Yeah, okay, thank you. Thanks for letting me know.

Rebecca Chamaa 23:44

Yeah, thanks for letting me know. I mean, he was taken back a minute for a minute. He missed a beat, but then he jumped right back on. And then um, so and so after that, that's when I I produced this essay and put it out on Facebook. I thought, okay, if he can handle it and our friend circle can handle it, then the whole world who knows me can handle it. And I put it out on Facebook, and that's the way that everyone else found out. That's the way my in-laws found out. That's the way that I mean, that's not very nice and it's not very intimate, but I just at that point was like a tea kettle, you know, boiling, and I just popped and it just my my schizophrenia diagnosis just landed on everyone.

Reading “I Have Schizophrenia”

Gabe Nathan 24:31

Yeah, I mean, and I don't think I mean, not to sound like a therapist, but I don't think we need to put a value judgment on it that it was not nice or it was not this. It was that it was a choice. It was a choice that you made. And you know, you could have made lots of other different choices, but this is the choice that you made. And I think it's totally understandable why you would make it, and at least it gets everyone on the same page in the same way in in the same time. And I think it was probably not to put words in your mouth, but I'm assuming it was probably very cathartic for you. And because that tea kettle was gonna blow, right? Um and so you can either let the steam out very, very slowly, or you can just pop the top and let it let it go. Um and I don't know. I think it's it's really wonderful what you did because not only did you let everyone know that you had schizophrenia, but you let everyone know that it's okay to talk about it. Um you let everyone know that it's okay to write about it, you let everyone know that this is nothing to uh hide from. And you wrote it under your real name. You wrote like there's no pseudonym, there's no Rebecca C. Um, you know, and some publications do that. And I that's okay too. Like I don't want to seem like I'm insulting anyone. Everybody has their own, like their own rationale for why they do things the way they do it. And I've gotten shit sometimes here at Recovery Diaries with why do you make everyone, you know, put their real name and why do you make everyone submit their pictures and like da-da-da. The reason is because uh I want uh people to know that there is no shame in talking about your mental health, and if we allow people to use pseudonyms and write anonymously or whatever, we are kind of perpetuating that idea that you really probably really shouldn't be talking about this unless your identity is concealed. I don't want to live in that world. I just I don't want to. I want to live in the world where we can just be open and vulnerable and be ourselves.

Rebecca Chamaa 26:53

Yeah, I agree. I think it's fabulous that people are willing to and put your face to it too. Like, see, I'm just I'm just a for me, I'm just this senior. I'm just this regular lady that you would see in the grocery store struggling with my bags, you know. I mean, I'm just the regular person. And um, and I was a young woman when in the picture that you have on Recovery Dyers. So it was actually nice. It was just this regular, everyday woman that you'd see walking down the street.

Gabe Nathan 27:27

Yeah, and that's another perception that I think people have about schizophrenia, that it's this scary person, and you know, um, oh, they're gonna shoot up a school and they're gonna all of these dumb, very problematic, um, and very inaccurate uh ideas of who and what uh schizophrenia is, looks like, results in, um, will end like, you know, all of that. I think there are so many myths that are really ingrained in the psyche of people when they're thinking about that. Um, when they're thinking about that mental health challenge and and thinking about how it manifests in the world, um which is just another reason that I'm really grateful um that you stepped forward with your essay, which I would love to hear you read, if you wouldn't mind. This was written so long ago that we were not audio recording these. Um I think four years ago we started um I started audio recording all of these essays and reading them all aloud. Um so this is even way back before that. So there is no reading of this essay. This will be the first one allowed in your own voice, the voice of the author Rebecca Chamaa. And the title is very simply and very poignantly, I have schizophrenia.

Then Versus Now: Aspirations Realized

Work, Purpose, And Law Enforcement Training

Art, Writing Classes, And Daily Practices

Rebecca Chamaa 28:55

Okay. Living with schizophrenia poses some challenges, but as someone who has attempted suicide twice and was saved by strangers, I am thankful for the life I have, even with the challenges. On a daily basis, I battle with a lack of motivation, which makes it difficult to complete projects or even start projects. I agonize for days over essays I need to complete. I get the most accomplished when someone sets a deadline and sets expectations for me. I do complete some writing projects without outside motivation, but not as often as I would like. Frequently, I am uninterested in social interactions because of the effort and energy they take. I spend the majority of my time alone. I also suffer from a great deal of anxiety and some paranoia. Both of these issues cause me discomfort that can take occasionally be extreme. Considering I have a severe mental illness and suffer from the symptoms I described above, I feel like I have done and continue to do fairly well. Before I came out publicly with my diagnosis, I spent many years as a social worker, marketing coordinator, and working in a university library. I have had some rewarding and fulfilling jobs. I have also been fortunate enough to attend college, complete a degree, and participate in workshops, graduate school training programs, seminars, and classes on and off throughout my whole adult life. I am currently working with a writing mentor to transition from unemployment to freelance writing career. I want to return to work, but I no longer think it is possible to work from nine to five in an office setting. The stress of that type of employment increases my symptoms to a point that life is uncomfortable all of the time. But even with the battle of self-motivate, even with the battle to self-motivate, I still desire to be productive and strive to find ways to contribute to my household. I have had periods where I have been so ill that I was unable to communicate with my husband. These times included bouts of psychosis, hallucinations, voices, suicidal ideation, delusions, paranoia, and extreme stress. If I could sleep at all, I was only it was only for a couple of hours, and I frequently went without eating. During one episode that lasted six months, I constantly heard voices, but I was able to cook and clean. Relationships and socializing were confused, confused and difficult because of the distraction of the voices and because of the information they, the voices, would tell me. I thought I heard the voice of God. I believed I was having discussions with God, Jesus, and the Holy Spirit. To this day, I have never heard a voice as sweet and innocent as the one that I believe to be the Holy Spirit. During this time, the longest I have been actively psychotic, it was as if I was living in a world within the world, a place where I am cut off and alone. I have been in treatment for over 20 years. The first few years of my treatment, I fought the idea of being mentally ill, and I went on and off my medications. Going on and off medication left me in a state of frequent psychosis that would come and go, including my initial hospitalization. I was in psych wards a total of three times during this period. On two occasions, I signed myself in, and once I was committed after an attempted suicide. Not taking my diagnosis and treatment seriously put me in dangerously close, put me dangerously close to losing my life. I have followed the advice of doctors for approximately 19 years now, and I take my treatment very seriously. I look at taking my medications as a lifesaver, a regimen that has saved my life and increased the quality of my life significantly. Medications have side effects though: weight gain, high cholesterol, diabetes, etc. And to try to manage the adverse effects of the medicine I take, I try to keep up a healthy diet and participate in physical activities. Occasionally my weight will creep up for a couple of years and then I will get back on track and lose the excess pounds. It is a form of maintenance that I am not perfect at, but I keep trying. No one with a psychiatric diagnosis can be completely defined by that diagnosis. That is one reason I prefer to be called a person living with schizophrenia, not a schizophrenic. We are all complex people, and some of us happen to have an illness, but those of us with an illness are not the illness itself. For me, it is important to keep my existing relationships, have hobbies and interests, and be active with things that both have to do with schizophrenia and don't have to do with schizophrenia. For instance, I consider myself an activist in the mental illness, disability, and feminist circles. Being an advocate, advocate activist for people living with a mental illness means I write and try to bring awareness to the topic on a regular basis. Bringing awareness, being an advocate, makes having my illness seem meaningful in a bigger picture. I have had many people write to me and tell me that my words give them hope, and I don't take being an occasional inspiration for others lightly. Advocacy, fighting stigma, educating, and breaking down stereotypes is important work that all of us can do. Writing is a way to reach others and is a great therapeutic discipline. I write a column that focuses on art, literature, and mental illness. I am also a blogger on a major mental health site and keep up a personal blog. But besides that, writing, which is all focused on living with a severe mental illness, I also write essays about relationships, marriage, social media, being a woman, friendships, and a wide variety of other topics. I think this provides balance in my life. There are so many things that I would like to concentrate on besides my disability. I will celebrate 18 years of marriage to my husband next March. And for almost all of those years, that relationship is one of the biggest supplies of joy in my life. Having schizophrenia adds stress to our relationship and requires that we make certain sacrifices to avoid putting me in stressful situations, but it isn't too different from the chronic illness my husband has that we have to manage as well. Both conditions require the care of doctors, lifestyle choices like the monitoring of diet and exercise, precautions and care. Having the support of my husband has a huge impact on my overall well-being. When I am paranoid, my husband is someone who can usually bring my thinking back to a rational place with some tricks he has learned over time. My husband takes an active role in my treatment and care. He attends every doctor appointment with me and monitors my medication on a daily basis. It is also critical to have someone to trust, and I trust my husband completely. We make a good team, but even so, there are times and days where we both feel overwhelmed or a little bit beaten by my more persistent symptoms like anxiety and paranoia. During a period when I was actively psychotic, I told my husband I wanted a divorce. Of course, I don't know what I was saying, and my thoughts were not based in reality. My husband felt very alone during that period. And one of the things we worked on together after that incident was building a network of friends who are aware of my diagnosis. In the future, if I become his psychotic, my husband will have support from people who love him and can help him not feel isolated or alone. I'm not the only one who needs support. It is critical for him to feel supported as well. My diagnosis was a secret that we hid from most friends and family up until recently. Friends, some I've had for over a decade, were surprised by my confession, but remain supportive. I have a core group of friends that I try to see at least two or three times a month, and that helps with the social isolation I also choose, I often choose for myself. I also try to visit with other writers on occasion and frequently have email and social media contact with people who fit into this group. I talk to my mom and dad almost every day, and one of my brothers and I talk a couple times a week on the phone. I can easily go weeks without seeing anyone but my husband. So having these supportive people in my life helps keep me remain social, helps me keep helps keep helps me remain social while I may otherwise choose not to be. Having supportive people around seems to be the most important part of living well. Besides supportive people, writing and art projects are the two things that help the most with how I feel about my illness, doing something positive with a negative situation and expressing myself. I think when people, when someone starts out writing about their symptoms, their experiences, their treatment, or anything to do with their illness, it helps to get it all out. I would recommend writing to anyone as a part of healing and recovery, but I would also recommend taking writing classes online or in person to get better at writing and to write essays, poems, stories, or even a novel that has nothing to do with a diagnosis or illness. There are endless possibilities of what to write about. Someone can see a fig tree and create a whole story around its history, or they can research the origins of the fig tree and create an educational piece about that type of tree. Art of all kinds can be an excellent part of treatment. I have taken up photography and I try to spend a couple of hours each week looking for interesting pictures to take. Of course, painting, ceramics, drawing, knitting, or sewing can all help in various ways. There is something unique about creating and expressing oneself that contributes to overall health. Part of the reason might be that it helps you deal with thoughts and emotions you may not be able to deal with in any other way. For myself, I feel very productive, which helps with the negative feelings I have in regards to my lack of motivation. For me, it is important to expose myself to new ideas through books, movies, documentaries, radio, and museums. New ideas help keep my brain from thinking too much about what is going wrong with it and focus on the larger world. Being focused on current events, art, or politics can ground me in reality and it can help me foster an attitude of gratitude and thanksgiving instead of one of self-pity. I don't want to sit around feeling sorry for myself because I have schizophrenia and life can be difficult sometimes. Exposing myself to the lives and stories of other people reminds me that we all struggle and we all suffer. Suffering is not unique to me or to the people with mental illness. My suffering or struggles may not look exactly like someone else's, but many times when I read an essay by someone who has had cancer or survived an assault or survived a war, I think to myself, I could never do that. I'm not strong enough to do that. People reading my story may feel the same way about living with schizophrenia. The old adage about having everyone's problems thrown into a basket and then being able to choose which problems you want to live with and ending up picking your own your problems over those of someone else really is true. I am familiar with what it takes to live with and try to manage schizophrenia. And I wouldn't swap my difficulties for someone else's because I don't know how to cope with their struggles. I only know how to cope with mine. I always tell people, never give up hope. Things can change any day, and they often do. My life is both beautiful and tragic, but the beauty is everlasting and the tragic is only temporary. I love my life and I'm so happy people and medication helped to save it. Wow.

Gabe Nathan 42:33

What wow. So your reaction at the end, what what's that about? What are you feeling?

Rebecca Chamaa 42:42

It just feels like I knew something. I I don't think I was living that life at that time. I don't think so. Um uh but I knew something was coming. It's almost almost like I read that and I'm like, yeah, I have that life now. I I I have three part-time jobs. I mean, they're very part-time because I can't work um full-time. And I'm proud of every one of them. They're dream jobs for me. I love them. Um, they're all advocacy jobs and writing jobs and and stuff like that. I just, I mean, I think my life is beautiful. And um, and I can't believe I said that back then. I'm I'm kind of surprised that I said that back then, but I could definitely say it now.

Gabe Nathan 43:33

Do you believe that it was aspirational back then that that's what you wanted to believe life was in 2014 when you wrote this, but you didn't really believe it?

Rebecca Chamaa 43:47

Yeah, kind of. I think I I I um I think I have so much more gratitude now and so much more so much of the life I dreamed about, I have now. Um, so I don't know, but it it really touched me. Um, that young, younger version of myself. I was like, yeah, you had the hope that got you where you are today.

Gabe Nathan 44:14

So and so, and what helped you get there? So you weren't really there in 2014, but you are there now. What helped you along the way, do you think?

Language Matters And Closing Reflections

Rebecca Chamaa 44:27

Um a lot of people giving me opportunities, right? So, and I I went back to school at uh during the pandemic. Um uh I went back to school at Columbia University and I got a certificate in narrative medicine. And that was like a dream to have this certificate from an Ivy League school. I mean, I thought who would accept me? I, you know, I I went to state schools, I I graduated from state colleges, I'll never get into an Ivy League university. So that that was a huge um boost for my just for my for the for my self-esteem, right? Because having schizophrenia is something that always pushes up against my self-esteem. And so, and then from there I got some grants and I did some writing work and and I've been able to continue writing, which was a dream of mine as a young woman, and that uh my my initial um um episode took away from me because I couldn't write after I started taking medication at first. And so, and that was the only dream I had was to be a writer. So I made that dream come true for myself. It might not look like what other people want to be a writer, and it looked like how they, I mean, I'm not a best New York Times bestseller or anything like that, but I am writing, and that's part of what I do for a living. And um, and then there's just the joy of being married all these years. I absolutely love to tell people that I've been married 28 years. I think that that's a huge success. Um, and um there's also the joy of publicly, I have one of my jobs is to publicly speak about my mental illness. So I train police officers and and psych and psych nurses and stuff like that on um what it's like to live with schizophrenia. And I just feel like that's such impactful work and it makes me so proud. And I just love it so, so much. And then I work on a warm line and I get to help people with active symptoms of schizophrenia. I get to sit there and talk to them through, you know, through, I mean, I don't solve any problems for them, don't get me wrong, but I talk to them through scary delusions and scary, um, scary things. So those those things are just beautiful. I love, I love that. I don't, I mean, maybe someone else wouldn't think that's success, but I think of that as like such a success.

Gabe Nathan 47:15

Well, A, who gives a shit about what anyone else would think or say about it? You know, it's it's your life, so it's your success and it's your definition of success, right? Um, and it sure sounds successful to me. I mean, you're you're walking the walk um and really helping people in myriad ways, um, which I just think is so extraordinary. And and just to pick two, you know, examples of that, training law enforcement, um, you know, because unfortunately, and they shouldn't be, but they are the ones who are most likely to be on scene with someone experiencing symptoms of schizophrenia, active psychosis, um, you know, someone's acting the fool in the town square at 3 a.m. That's generally who's showing up. And they need to be hearing from you, they need to understand that this is a human being, um, and what is helpful and what is harmful, and that you cannot approach them like you would anybody else. Um, and uh it that's just so, so vital. And that is life-saving, Rebecca. You know, you're like, I'm not saving anybody's life. That is potentially life-saving um to give them that uh insight and awareness and education. Uh and then as far as the warmline, uh, you know, I say this a lot that like uh the thing that mental illness whispers into your ear is that you're alone and it's it's the biggest lie that it wants to tell you because it wants to isolate you and it wants to make you alone and afraid and and feel like you're a freak and that no one else understands. And to have someone with schizophrenia uh call that warmline and to be talking to someone else with schizophrenia who is able to go, I get it. I understand, like really understand. Um that's incredibly powerful. Um, and you're doing it through the writing work that you do. You did it through this essay. Um, and the line that really stands out to me um when I read an essay by someone who has had cancer or survived an assault or survived a war, I think to myself, I can never do that. I'm not strong enough to do that. People reading my story may feel the same way about living with schizophrenia. And that's that's the whole reason why we do what we do. Um so that uh people who are sitting there in the throes of mental illness who are being lied to by that mental illness to say that not only are you a freak and a loser and a piece of shit or whatever the mental illness is telling them, but that you're never gonna get better and it's always gonna feel like this, and you'll never be able to live with this in any meaningful way. Um you know, your essay here is combating that. I can live with this, I can manage this, um, and so can you, and that's huge, and that's people need to hear that.

Rebecca Chamaa 50:31

Yeah, she knew uh uh that younger version of myself knew a little bit about what was coming, I think.

Gabe Nathan 50:39

Yeah, she she saw it on the horizon, she saw the successes, um, and and she saw that ability, that ability to not just live, but to thrive. Um, and you're really doing that. And I think it's just extraordinary. And and to sit here with you now and see everything that's changed, and perhaps the biggest evolution is you living the life that you really wanted to be living back when you wrote this essay. Um, I don't know, it's just incredible.

Rebecca Chamaa 51:13

Yeah, um, I think it's incredible too. Uh I I have interests outside of schizophrenia, and I always tell people this is important to have interests outside of schizophrenia and not to just define yourself everything about uh always just about schizophrenia. But my work with people with schizophrenia and my work um educating people about schizophrenia is probably the most, I mean, I feel like it's the most valuable. I think writing, because I write every day, writing is something that helps with my treatment and helps with my uh growth and helps me feel joy. But the the work that I feel that I'm doing that is the most significant and the most important are those things where I'm helping someone with schizophrenia or I'm educating someone about schizophrenia.

Gabe Nathan 52:09

But while you're doing that, you're also taking care of yourself and you're also managing your illness and you are engaging, like you said, in those other areas of interest that are helping you to stay like a complete and whole person. And what are some of those interests? I'm just curious, what else are you into? What do you what do you do you still take pictures? Um I do.

Rebecca Chamaa 52:33

I had a show. I had a show last year, a photography show, and it was called um um okay, it was the the original project was a hundred days, uh it was a hundred day project. I don't know if you've ever heard of that. It's popular with artists to do a hundred day project. I did a hundred-day project of what mental illness looks like to me, and I posted them on Instagram and on Facebook, and a gallery picked it up and posted some of my, and it was all about what psychosis looks like to me and um just pictures that I took and um I did a show. So I I still do like photography. I don't do it as much as I like, and I'm just starting in the new year. I just hired her the other day. I'm starting art therapy, so I'll be painting um and doing art therap therapy. Um, yeah, I'm I'm not sure that I'll be any good out of it. That doesn't really matter. And then and I take two to four writing classes a week.

Gabe Nathan 53:40

Wow. That's very, very busy.

Rebecca Chamaa 53:43

Yeah, I I mean sometimes I have to cancel because of my work and stuff like that. But on a regular basis, I take two to four writing classes a week because I just really love writing. I really, really love it.

Gabe Nathan 53:56

And my last question to you is do you still identify as I'm a person living with schizophrenia, or do you identify as like I'm schizophrenic? Um, or what what's the what's the word choice that you're drawn to and why?

Rebecca Chamaa 54:14

No, my true love is I'm a person living with schizophrenia. And I I I do the schizophrenic one just to um try to show to attract people to that um work. But no, I that person knew exactly what she was talking about in that essay. I still believe I'm a person living with schizophrenia, and I prefer not to be called a person. I prefer not to be called a schizophrenic.

Gabe Nathan 54:45

You are indeed a person living with schizophrenia, an extraordinary person, uh a helpful, hopeful person, a creative person, uh, and a very generous person. Um, and thank you for being generous with your time here today. Um, and with what you put out into the world. It's it's appreciated more than you know.

Rebecca Chamaa 55:05

Oh, thanks, Gabe. It's just such a nice, nice uh to be able to reconnect with you. And uh I just I find that to be one of the things that brought me a lot of joy this last year.

Credits And Community Invitation

Gabe Nathan 55:20

Same. Um, thank you so much for being here. It's uh it's been wonderful, and there better be a new essay from you coming. You're way overdue.

Rebecca Chamaa 55:31

There is one.

Gabe Nathan 55:32

Okay, good. Rebecca, thanks so much for being here.

Rebecca Chamaa 55:36

Thanks, Gabe. I really appreciate it.

Gabe Nathan 55:42

Thank you again for joining us in conversation today. It's beautiful to see the progression of our contributors. We are so very grateful to our guest for today, Rebecca Chamaa. She lives with schizophrenia and she finds purpose by sharing her story. She's written in Teen Vogue, good housekeeping, glamour, women's day, and of course, recovery diaries. She also works as a public speaker for NAMI, educating first responders, nurses and therapists, and other people who work with folks with mental illness. Before we leave you, we want to remind you to check out our website, recoverydiaries.org. There, like this podcast, you'll find additional stories, videos, and content about mental health, empowerment, and change. We look forward to continuing to grow our community. Thank you so much for being a part of it. We wouldn't be here without you. Be sure to join our mailing list so you never miss a podcast episode, essay, or film. I'm Gabe Nathan. Until next time, take good care.