Inside Schizophrenia: Families Impacted by Schizophrenia
Schizophrenia does not just affect the person with schizophrenia, but their families, also. This episode of Inside Schizophrenia explores the family relationships impacted by schizophrenia, both immediate and extended.
Two guests join us. The first is Chrisa Hickey, who is the mother of an adult son with schizophrenia and started an online site for parents of children who have a severe mental illness. The other guest, interviewed by co-host Gabe Howard, is Janel Star Withers, mother of host Rachel Star Withers. Janel shares her experiences with raising a schizophrenic daughter.
Host Rachel Star Withers, a diagnosed schizophrenic, and co-host Gabe Howard delve into these intense subjects in this episode of Inside Schizophrenia.
Highlights from “Families Impacted by Schizophrenia” Episode
[02:00] How people with schizophrenia can be viewed as a burden
[08:00] The family is painted as heroes to the outside world
[10:01] How physical illnesses are viewed differently than mental
[11:22] Interview with Chrisa Hickey, mother of a son with schizophrenia
[13:00] What it means to be an adoptive parent
[17:30] Chrisa’s biggest fear for her son
[24:37] Adoptive son, no my son
[35:31] Interview with Janel Star Withers, host Rachel’s mother
[44:19] Janel’s advice for parents who find out their child has schizophrenia
[55:49] Brother/sister relationship
About our Guests
Chrisa Hickey is an eCommerce and digital marketing professional, blogger and mental health advocate specializing in providing education and support for parents of children diagnosed with serious mental health conditions. Chrisa began her journey into the world of childhood-onset mental illness when her middle child was diagnosed with schizophrenia at the age of 11.
Chrisa has guest blogged for the Balanced Mind Foundation, Pete Earley, and NAMI Massachusetts, and has appeared on The Ricki Lake Show, NPR, NYC Doctors Radio, Blog Talk Radio for HealthyPlace.com and The Coffee Klatch.
Janel Star Withers is a mother of 2 adult children and has been married for 36 years. She is currently retired, but had a home-based business for 2 decades while her children were growing up. She sculls (a type of rowing) recreationally every day for miles.
Computer Generated Transcript for ‘Families Impacted By Schizophrenia’ Episode
Rachel Star Withers: [00:00:00] Welcome to Inside Schizophrenia. I’m Rachel here with Gabe Howard. Gabe, today, family. We all have issues with family. Jumping right in, having someone in your family with a mental disorder, especially schizophrenia, that’s an added extra stress. Last episode we talked about psychosis in children and towards that end, we touched on the toll it can take emotionally, physically, financially. This episode, though, we are going to be focusing on the relationships side.
Gabe Howard: [00:00:30] Obviously, we know that having schizophrenia or any mental illness is not the only thing that causes stress in families. There’s frictions in every family. Good, bad or otherwise. But schizophrenia, it creates a toll even when everybody’s doing everything well. And while we talked about, you know, the medical side of children and young adults living with schizophrenia and what that does to the caregiver, we really want to delve deep into the burden that schizophrenia places on families. Not the schizophrenic, not the person living with schizophrenia, but the actual toll that the illness takes on an entire family.
Rachel Star Withers: [00:01:07] And I would even say just the idea of the illness to other people. Which kind of moves me to my first point. When people hear that you have someone in your family, someone close to you, that has schizophrenia, right away you get the reaction of, “Oh, I’m so sorry. That must be so hard on you.” On them? They’re not the ones with a mental disorder. It’s like just the idea of someone having a mental disorder in your family is such a burden. You have to live this life with just someone who is just dragging you down. And you are so wonderful and brave for putting up with that person, that sickly person. God bless you. I hate that. No one wants to be a burden. No one wants to think that I am holding my family back. I am holding my loved ones back. If you’re the burden that makes everyone around you automatically your caretaker, like they must be having to do everything for you.
Gabe Howard: [00:02:00] And isn’t this the double edged sword, right? Because on one hand, we want the people around us who help us, who care about us, who are there for us, to get credit. Say that I break my leg tomorrow and every day for six weeks, my wife has to help me get up the steps because our bedroom is upstairs and somebody says, “Oh, my God, Gabe broke his leg. That must be so tough on you.” Like that wouldn’t offend me. It was tough on my wife having to carry me up the steps. This never happened, obviously.
Rachel Star Withers: [00:02:29] Well, yeah, you’re a big guy, I’m not sure if she could. I mean,she’s got to be like a weight lifter strong and I’m impressed if that happens. I’m impressed.
Gabe Howard: [00:02:37] I mean, she really is awesome. But I guess I just don’t feel that when somebody says, “Oh, man, that must have been tough on you,helping Gabe up the steps every day and every night.” I don’t feel like they’re insulting me, but when they say, “Oh, you live with somebody with schizophrenia? That must be so tough on you.” I sort of feel like there’s a piece missing. Like they’re not acknowledging that it’s also tough on the person that’s sick. It seems like the person with schizophrenia only gets the label of burden. And the person helping to take care of the person with schizophrenia only gets the label of hero. And that kind of makes living with schizophrenia feel very hopeless.
Rachel Star Withers: [00:03:13] Yes. Gabe and I both work in mental health awareness and on that note, the entertainment field also. You have to be entertaining. Like this podcast; we’re very entertaining. I hope. But in our field, a term that gets thrown around a lot is “mental health advocates.” In fact, the beginning of this podcast starts by referring to us as advocates and we hear it a lot. But I guess in normal talk, people don’t. And I asked my dad to tell me what pops up in his mind when he hears mental health advocate. And he said a mother raising awareness about an illness that her child struggles with or has died from. And that’s I mean, that’s just what a normal person thinks when they hear that. And it goes back to right, that burden. Somebody has to come and raise awareness, because I can’t because I have schizophrenia and I just could never stand up for myself.
Gabe Howard: [00:04:10] But to be fair, I bet if we would have asked somebody living with schizophrenia what a mental health advocate was, they would say somebody living with schizophrenia who fights for their rights to be as awesome as possible.
Rachel Star Withers: [00:04:22] Correct. The other thing is that people tend to think if you’re advocating for something, you have to be really serious and depressing. Especially because mental health is serious and depressing and no one wants to have a mental disorder. And I think that’s why so many people also correlate it with it has to be someone advocating that doesn’t have the disorder. Because it’s horrible, anyone with the disorder has to be a super downer. I’ve overheard people tell my parents, “I just don’t know how you do it.” Do what? Be a parent. I mean, like the underlying message there is I could never live with someone like her. I could never be a parent of someone with such a horrible disorder. And no one wants to hear that. Like no one wants to find out that everyone around you thinks that you are burdened just like with your broken leg. If I had asthma, no one would walk up to my parents and be like, “I just don’t know how you do it. I mean, Rachel cannot run a mile without her inhaler. It’s just you guys are incredible.”
Gabe Howard: [00:05:22] And it’s such a bummer because I know that you do think highly of your parents. Later on in the episode, we’re going to talk to your mother about what it’s like to be the mother of a young woman with schizophrenia. And she has a lot to say. And I think you’re going to love it. You want her to have all of this praise. You just don’t want your parents’ praise to come at the cost of your autonomy or at the cost of your success. You want to be both successful and your parents be praised for also being successful. You want to share in it.
Rachel Star Withers: [00:05:59] And I’ll be the first one to tell you I am so lucky. My parents are incredible. They put up with so much between me and my brother. Okay, so both of us and not just like mental disorder to stuff like my brother has bicycled through Africa, through Eastern Europe alone, through Mexico, gotten in so much trouble. He’s incredibly adventurous, we all are. So they’re so stressed out. I think between the two of us, he is probably overall in life caused them way more stress than me. And I carry around a lot of guilt. The past like year and a half, I have felt so guilty for how much my parents have had to help me and take care of me. Ironically, it had nothing to do with schizophrenia. I contracted a rare flesh eating bacteria that ate its way up my spine, into my nervous system, and out my face. I had to be in isolation in the hospital and then I was at home. My mother had to learn how to put the IV’s in me. My dad had to go to every single doctor’s visit with me and I feel so bad because I had to really lean on them financially just for all the medical bills. But this has nothing to do with schizophrenia. And when people hear this about me, they feel so bad for me. They’re like, “Oh, my God, Rachel!” You know? And I’ll even say, hey, my parents have been incredible, but they still focus on me, whereas the minute they hear schizophrenia, they focus on, oh, my God, your family has given up so much for you and your life. I mean, I mean, a little bit. I mean, let’s not get crazy here. But, yeah, I do feel like a burden. But it’s not just a mental health thing. Like, it really was more of a physical thing.
Gabe Howard: [00:07:36] You are living with a major mental health issue with schizophrenia. Nobody’s denying that, and right now you’re also living with a major physical issue, with a flesh eating bacteria that doctors are still trying to get under control. So your schizophrenia is, well, by and large, managed. You do what you need to do. And I’m not saying that you can ignore it or forget about it, but it’s not the biggest part of your life right now, this physical illnesses is. But the unique position that you’re in is you have seen how people respond to you and your family through both ordeals, one a mental illness, one a physical illness. And the very fact that it’s different does show some of the issues that people with mental disorders, and mental health issues, and mental illnesses face because it shouldn’t be different. Sick is sick. And families come together to help their sick loved ones and it should be viewed the same.
Rachel Star Withers: [00:08:31] I was about to say that, like, people brought us cookies and stuff and I’m like, no one ever does that. No one randomly stops by. If my mom has told them I’ve been, you know, mentally very bad. No one does that. But just the thought that I had been sick for so long. People were just so worried. And it’s just interesting, though, how people feel fine talking about something really bizarre as a flesh eating bacteria. That’s really creepy and weird, but it’s almost like that’s OK. But schizophrenia, mental disorders, that’s taboo. We’re not going to ask how Rachel is about all that. Even though we know she’s bad, we’re not going to ask.
Gabe Howard: [00:09:08] And I feel that it should be pointed out that having a flesh eating bacteria is not common. I know a lot of people, Rachel, and you are the only person in the entirety of my life who has ever had a flesh eating bacteria. So you would think that if the old oh, well, they’re fearful of schizophrenia. They don’t understand schizophrenia. It’s coming from a place of they’re not familiar with it. You would think that that would also apply over to the physical illness that you are just unfortunate enough to have. But it does show a willingness to learn. Probably because flesh eating bacteria doesn’t have the same stigma and misinformation campaign as mental illness does. People with flesh eating bacteria aren’t accused of being violent and hurting people, whereas people with mental illness are, which I know we already covered in another episode. But I think that all of this goes part and parcel into your friends and family are educating themselves about one illness and they’re burying their heads in the sand about another illness, and it’s impacting you and your family.
Rachel Star Withers: [00:10:13] People are willing to ask me like a thousand questions about the whole flesh eating bacteria thing. The hospital, how does it feel? Is it in pain? Just flat out walk up to me and be like, what’s going on with your face? But so timid at asking about mental health and schizophrenia.
Gabe Howard: [00:10:30] And that’s what podcasts like this are trying to change, and we are so lucky to be able to put this podcast on and we’re so lucky to have great guests and we want to introduce the first one right now.
Rachel Star Withers: [00:10:41] Yes, our first guest is a mom with a schizophrenic son. Let’s listen in. Right now we have Chrisa Hickey. Tell us a little bit about yourself, Chrisa.
Chrisa Hickey: [00:10:45] Sure, I have three kids. They’re all adults now. My oldest son is our, my husband’s biological son, who is a kind of a neurotypical kid. And our younger two children are children we adopted. On of our children. Tim, our middle child has childhood onset schizophrenia. He was diagnosed at 11. He’s 25 now. And I do advocacy work at ParentsLikeUs.club helping other families who are raising children with serious mental illness.
Rachel Star Withers: [00:11:13] Yes. I had it as a child, but I wasn’t diagnosed yet. I think there’s a completely different dynamic when you think of someone adopting a child with a mental disorder or really any type of big issue. You tend to either think of like, oh my God, that person is just a martyr. All the things they’re going through, like you’re put up on this pedestal of just you’re so super human. Or I think you have the idea of why would you put yourself through that? Well, he’s, you know, not technically yours. You could still get out of this. What is your opinion on all those?
Chrisa Hickey: [00:11:45] Well, we had both comments, obviously directed towards us. We adopted him from the foster care system, but it was a foster to adopt situation. So we actually brought him home when he was a day old. So we really didn’t know that he had a mental illness until he was a little bit older. His first diagnosis of some kind of emotional disorder was at age four. But when we started having realizing what was going on and working with Tim, a lot of people said to us either, “Oh, he’s so lucky.” Which I hate because it’s the stupidest comment ever or, “Well, why don’t you just give him back?” Like he was a toaster. And I think that people that think about adoption, some people that think about adoption, I want to caveat that, don’t really get understand what it’s like to be an adoptive parent. You know, for me and Tom, my husband, when we decided to adopt him, we wanted to adopt a child. And the only thing that mattered to us is that the child needed a home. And we were very adamant in adopting in the US from the foster care system because there are so many kids waiting for adoptive homes in foster care. And comments like that, I understand what people are trying to say, especially the ones who say, “Oh, you’re so lucky.” or, “You guys are so great!” or whatever. I understand what they’re trying to say. But if it wasn’t for, I mean, Tim is my kid and I wanted to have another kid. It’s like if you’ve given birth to another kid, you wouldn’t congratulate. You wouldn’t congratulate someone for raising their own child. Tim is my kid. That’s just the way it is when you agree to adopt a child. The child becomes part of your family. It doesn’t matter that they aren’t biological.
Rachel Star Withers: [00:13:07] That’s awesome. So he was diagnosed really young, which we actually did an episode last time about childhood psychosis. And for one, how hard it is to be diagnosed. But just kind of all the twists and turns when it comes to getting a diagnosis at that age. How would you describe being a mother to a child who had schizophrenia?
Chrisa Hickey: [00:13:27] Well, when they first told me he had schizophrenia, he was actually inpatient in hospital and I checked him out AMA, against medical advice. So they wanted to try and stabilize him more. But I basically said, nope, give me my kid. And they basically have to within 48 hours if you want to check them out. Because I didn’t believe what the doctor was telling me. And a lot of that’s just because there’s no information out there. I mean, nobody talks about schizophrenia out in the open. Especially they didn’t 18 years ago when Tim was first having symptoms. They didn’t talk about it out in the open. So I’d never heard of a kid having it before.
Rachel Star Withers: [00:14:00] So that’s why you just didn’t want to believe it?
Chrisa Hickey: [00:14:03] Yeah, I didn’t believe him, I said there’s gotta be something else going on, and Tim was about 10 years old or eleven years old at the time. And we had been dealing with a neurologist and neuropsychologist and had a therapist that he was going to see. And I mean, this is how it is for a lot of parents who have kids like this. The therapist said to us, “Your son’s really sick. He needs to be hospitalized. It’s not going to be the only time in his life he’s going to be hospitalized.” But she would never say the word “schizophrenia.” Never. She would not say it. You have a lot of parents that are trying to get their kids help and trying to get their kids treatment, having that problem, because doctors say, you know, here’s the stigma coming over smack in your face from the medical community, I don’t want to label the child with that. It’s like it’s not a label, it’s a diagnosis. I mean, would you label them with some other disease if they had it and needed to get treatment. I mean, I think that’s ridiculous. You don’t outgrow schizophrenia,
Rachel Star Withers: [00:14:48] Yes.
Chrisa Hickey: [00:14:49] But that’s the kind of thing we’re often hit with as parents is they don’t want to diagnose our kids because they’re worried about putting it in their permanent record, which is so crazy.
Rachel Star Withers: [00:14:57] Also, I want to, because I didn’t realize this until you just said it, that you had another child that has a physical, physical disorder.
Chrisa Hickey: [00:15:05] Yeah.
Rachel Star Withers: [00:15:05] But you said that’s completely different. Can you elaborate on that? How it is two different challenges as a parent?
Chrisa Hickey: [00:15:10] My daughter has epilepsy and she also has a form of cerebral palsy. It’s a little bit different. She can overcome these things and understand it. But Tim is fighting with his own brain and it’s very hard to help a child get through something like that when they don’t know what’s real and what’s not. I mean, for my daughter, you know, she has a lot of challenges with mobility. And when she was young, you know, trying to overcome, we did a lot of physical therapy because she had a lot of challenges of coordination and walking and things like that. She has a fairly mild form of cerebral palsy, but we had to work with her with therapy. But you could. She could understand that. She could understand that my legs don’t work like other people’s do and I do these special things and I wear braces and I’m learning how to do these things because my legs don’t work. It’s hard to explain to someone who is, especially someone who’s in the throes of delusions and voices, that the brain doesn’t work. It’s very easy to see with my daughter when she walks that her gait was not normal. With my son, it was very difficult to understand. Does he have a very active imagination? Or is he really hallucinating? And we can’t parent the same way for a child with a physical disability versus a mental illness. The child has to be old enough or cognizant enough or stable enough to be able to work with you on the therapy. You know, my daughter could not walk for a week and then go to physical therapy, there was no problem. Tim was in the throes of psychosis for a week. Forget it. We had to figure out how to get him stable before we could even work with him on how to cope with dealing with psychosis.
Rachel Star Withers: [00:16:27] Growing up, what was your biggest fear for your son?
Chrisa Hickey: [00:16:31] That he would survive to be an adult. Tim’s twenty fifth birthday was yesterday, and I turned to my mom as we sat across having dessert with him and she said, “I can’t believe it’s twenty five.” And I said, “I know.” I said honestly, because Tim attempted suicide three times before he was 18.
Rachel Star Withers: [00:16:48] Wow.
Chrisa Hickey: [00:16:49] We spent the better portion of his adolescent and early adulthood years just trying to keep him alive. So my greatest fear was that he would do himself in. Which is interesting because conversely, as an adult, my greatest fear for him is that someone else will do him in. You know, I was worried about his own brain against him. But now I’m worried about what may happen to him out in public. We used to live in Chicago. We live in the extreme northeast of Wisconsin now. And we moved here because in Chicago, it just wasn’t a safe environment for him to be able to grow up and be a productive adult. There’s too many people. There’s too much temptation. There’s no way to help kind of create a safe environment for him. You know, the police there have a history of kind of shooting first and asking questions later, especially people with a mental illness. And I was afraid that something would happen to him externally to end his life rather than when he was a child it was internal.
Rachel Star Withers: [00:17:41] So Tim has, and happy birthday to him, just hit 25. How would you describe life now with him?
Chrisa Hickey: [00:17:48] Life now is pretty good. I mean, like I said, we’ve moved to a very small community with the intention of creating a safe environment for Tim. So now Tim is doing things that I never thought were possible when he was a kid. He has a part time job. He works a couple days a week in a local restaurant, washing dishes and bussing tables. He has his own apartment and that’s a rent controlled apartment in a very nice complex. He only lives a mile away. So when he needs help and support, we’re here for him. He’s got friends. He has a social life. And life’s pretty good. We’re still here to help support him because unfortunately, one of the things that typically goes along with childhood onset schizophrenia is also a cognitive decline. Tim’s lost about 40 IQ points since he was a child. So executive functioning isn’t as good as it should be for a twenty five year old. But that’s OK, because we’re close enough here. You know, I can go over, I can help him when, I ask questions. You know, we help me help him manage money. I help him with his meds because he has gotten off track on those when he tried to do it on his own. But overall, I feel confident that he’s in an environment now, that he can be happy and healthy and for the rest of his life.
Rachel Star Withers: [00:18:51] What advice would you tell someone who just found out that their child has some sort of mental disorder?
Chrisa Hickey: [00:18:58] Oh, boy. Well, I think there’s two things. If you’re adopting a child and they tell you that the child has some emotional or behavioral issues, especially if you’re adopting from foster care. But unfortunately, the foster care systems have a spotty record of being incredibly upfront with adoptive parents, which I understand because these kids tend to be very difficult to find permanent homes for. There’s a lot of disruption in adoptions of children that are a little bit older, a little bit older means basically more than three, that have some kind of emotional or behavioral disturbance going on. I think if you’re adopting, be very upfront with your caseworker that you want to know everything. It’s not because you want to reject the child. You just need to know everything you’re dealing with before you can really commit and you need to know what your family is going to be going through. If the child you’ve already adopted or your biological child and you just found out, find a group you can talk to. The worst part about having a child with serious mental illness is the isolation that the family feels. We often say it’s the “no casserole disease,” right?
Chrisa Hickey: [00:19:55] When your child has cancer, everyone comes over, they make you meals, they take your kids to soccer practice. When your child goes into a psychiatric hospital, nobody calls. They don’t know what to say. They don’t know what to do. And they’re afraid of it because they don’t understand it. So find people you can talk to. Come to my website. You know, our nonprofit is ParentsLikeUS.club. It’s all about stories of other families who are going through this. We’ve got lots of resources. We have a Facebook support group to help parents that are going through the situation. I learned more from other parents who have kids, a serious mental illness than I ever learned from a medical professional. And even my son’s child psychiatrist said he would go to my, he called them my “mom posse.” We’d go to the mom posse to get information and feedback for him, because even he didn’t have all the answers. And he knew that the only way to get the answers was from other people going through it. So find some support. Find a place where you can talk to someone who understands.
Rachel Star Withers: [00:20:50] And that’s really cool, I was looking all over your Web site the past few days as I was researching you, watching clips of you, just reading all of your different writings. And I like how incredibly open you are and yet realistic on your Web site when it comes for this is what it’s like. And I really like that. I guess it’s beautiful overall how vulnerable you are when you talk about some different things. I was reading like some of your very first postings and just
Chrisa Hickey: [00:21:17] Wow, yeah.
Rachel Star Withers: [00:21:17] Pretty much why you’re going to do this. And I guess overall when I was reading, I thought that this is a really beautiful story. And I think some people they’re only going to hear, you know, oh, god, someone with a child with schizophrenia. This sounds horrible. Their life must be terrible. But I when I was reading through your postings, I don’t know, I just really felt hopeful. And I just thought it was like a beautiful story the way you were so open and told everything.
Chrisa Hickey: [00:21:41] I get contacted by parents all the time, and the number one thing they say is, you know, at least because I felt this way when Tim was younger, we had no help. We had no idea what we were heading into. Every year seemed to get worse and worse, you know, puberty. Oh, my God. Puberty and psychosis is not a fun combo. You know, as we would go through that, we would start to lose hope. And now I get the parents saying, now that you’re on the other side of that and things have gotten stable. And, you know, Tim’s child psychiatrist said to me, “This is the most severe case of schizophrenia I’ve ever seen.” And I was like, thanks for that. But, you know, that kind of thing. And then hearing it on the other side that he’s healthy and happy and has a job and has a you know, he has a dog and he has his apartment and and he’s doing all right. Gives him some hope that they can that they can make it. And I think that’s what it’s like. Like I said, this isolation families feel is really horrible. And anything we can do to kind of band together and help each other through the rough patches is really important.
Rachel Star Withers: [00:22:32] Thank you so much, Chrisa. One more time, tell us what your Web site was so everyone can check it out.
Chrisa Hickey: [00:22:37] Sure. Well, it’s my new Web site for if we are a 501(c)(3) registered non-profit at ParentsLikeUs.club. And if you have a child of your own and you want to come share your story, either anonymously or not, to help other families like yours, then come on over and share it with us.
Rachel Star Withers: [00:22:51] Thank you so much for talking with us, Chrisa. Absolutely wonderful hearing your story. Thank you so much.
Gabe Howard: [00:22:58] Thank you, Rachel. That was really cool. Rachel, Chrisa is amazing and so is her son. They’ve accomplished a lot together. And I think that that’s really what we’re trying to explain, that it’s not just about the family and it’s not just about the person living with schizophrenia. It’s about their collective. It’s about them working together. It’s about the family unit. It’s about the, I don’t know, love.
Rachel Star Withers: [00:23:21] And family hitting on, that’s not just biological. Some of our family, yeah, we’re born into. But you look at things like adoption, but also family, friends, extended family. There’s just so many things and connections.
Gabe Howard: [00:23:34] It’s interesting that she talked about, “He’s not my adoptive son. He’s my son.” And this really spoke to me for a number of reasons. First, because that’s what family is. Isn’t it? It’s not this collection of biology. It’s our bond. It’s our love. It’s what we decide. And also because, you know, my father adopted me. My mother is my biological mother, and my father is not. He has no reason under the sun to accept me. He could easily get away with introducing me as his stepson. He didn’t have to adopt me. And what’s sad is that I don’t think that people would have been mean to him about it. I don’t think that people would have walked up to him and been like, “Dude, why aren’t you accepting this kid is your son?” And I really do think that that’s an amazing thing about my family, because we don’t do steps. You know, I’m a foot taller than every member of my family. I am the only redhead. So for those who are playing along at home, that does, in fact, make me a redheaded stepchild. And I did not feel that way. Growing up, and I was a sick kid, I’m a person living with bipolar disorder, with psychotic features. I had psychosis. I had issues. I had problems. And never once did my father think about sending me back. And when Chrisa talked about that, I was like, yeah, that’s what being a real parent is. I’m fond of saying in my story that he’s not my biological dad, he’s my real dad. And I think that is made up because of all the things that he’s done for me over 42 years.
Rachel Star Withers: [00:25:09] And that’s awesome because you are just his son.
Gabe Howard: [00:25:12] Yeah.
Rachel Star Withers: [00:25:12] And that was something I really loved in Chrisa’s interview where she said when they were going to adopt a child, they didn’t think about what could happen. It was we just want to give a child a home. We just want a child. And really not even thinking about what this child might have been born with. They didn’t know about any background. Just we want to give a child a home.
Gabe Howard: [00:25:35] And that, of course, is the thing with children, right?
Rachel Star Withers: [00:25:39] Yeah.
Gabe Howard: [00:25:40] You are a biological, Rachel, for lack of a better word. You’re not an adopted kid, you’re a biological kid, and you have schizophrenia. Nobody would think it was OK for your family to abandon you. But as Chrisa has said, there is, and she said it a lot. You know, we had to cut a lot of it because you could tell that it caused her some pain, that people would think that there was a return policy on a child. And this was unfathomable to her. It’s interesting that other people talk about it so openly. Well, yeah, your child is not schizophrenic. Your adopted child is. And I’m not quite sure why society sees that distinction as meaningful.
Rachel Star Withers: [00:26:19] Now, I can’t even begin to imagine mentally what that would do to me as a kid. Like thinking. Yeah. My parents didn’t want to deal with me like that. That’s a lot. It’s really a very hard thing, I think, for any kid to grasp, but especially if, you know, you have a mental disorder. And this is specifically why I’m not at home anymore.
Gabe Howard: [00:26:40] I think it’s a hard thing for an adult to grasp. I think it’s a very hard thing for an adult to grasp, as you and I are sitting here, Rachel, we’re just clocking our brains at the idea that, man, what if we didn’t have a mom and dad? Imagine you’re twelve. And that leads me to my next question, Rachel. Do you think that one of the reasons that you do so well, managing your schizophrenia, is because you had a solid foundation placed in you when you were 3, 6, 9, 12, 16? Because you had a stable and loving family that you could count on? Did that help improve your odds of managing schizophrenia?
Rachel Star Withers: [00:27:19] Absolutely. Even the times in my life where I was like super out of control and angry at my parents and that whole I hate you phase. Probably a normal teenage I hate you phase, but times 20, I always knew that I could come home. I always knew that if I was in trouble, I could message them and they would find a way to get me home. I don’t think I ever doubted in my mind that my parents, one of them, wouldn’t drop everything to come find me wherever in the world I was. And that was one thing they actually had to do once, was get me home from the Czech Republic because I was very, very sick. And you think about other people who don’t have that kind of foundation. Who would they have called? Who would they have helped? You know, I very well could have ended up hurt very badly, because mentally I was not well, but I had them. And even in like my messed up mental state, I had someone I could run to. At that time, we didn’t get along. But I knew I could run to both of them. And I wasn’t gonna have a problem even if we weren’t seeing eye to eye on things. I knew I was sick. I needed help. They’re always gonna be my default.
Gabe Howard: [00:28:28] Obviously, there’s a big difference between I’m not connecting with my family or my family is annoying me or even I don’t trust my family. There’s just a really big difference between families arguing and a family not existing. When you’re arguing with your family, they exist and arguing is a passion. You argue with people that you love and care about because you’ve got there’s a principle there. And that principle, especially in families, is often a bond. It just is. And you’re right. I can’t imagine where in this world I could go that my family would not find me. I also can’t imagine living a life where I didn’t know that that was true.
Rachel Star Withers: [00:29:13] That’s a really great point. I agree wholeheartedly.
Gabe Howard: [00:29:17] And that begs the question, what do you do if you don’t have that solid family foundation?
Rachel Star Withers: [00:29:22] What I said earlier in the show and what we obviously all know as humans from our after school specials is that we create our family, we create these relationships and you have to water and grow them, turn them into what you want them to be. And to my adults out there, and you’re trying to make that relationship and you’re like, Rachel, where do I find like, how do I start out as an adult? It’s hard enough just to make friends, not less find that kind of strong support system, but support groups, especially when you’re at the doctor’s office. Ask them. I know that my doctor’s office, when I actually look around the lobby, there are so many little pamphlets and I’ll just kind of go and take all of them. And a lot of them are for support groups in different times. Find those people who understand what you’re going through. I used to be part of one support group and it was just for general mental health. So you had people in there with depression all the way to I remember, there was like a lady in her 70s who had had schizophrenia her whole life.
Rachel Star Withers: [00:30:27] And I loved listening to her because she had been in the hospital system in and out of it for years. And her stories of just how it had changed were fascinating to me. She had been on every single drug possible, and I learned from her for the first time that she couldn’t be trusted with taking her pills. She had a bad issue with overdosing, becoming suicidal. So the pharmacy kept her pills and she would go there every single day and they would give her one. And I was just like, that’s something you can have done? And she’s like, Oh, yeah. I was like, wow. I never had any idea until I was speaking with her that that was an option. And so that’s the thing is when you’re in these support groups, you can learn tips that can make your life so much easier. And while I’ve never used that situation, I like knowing that it’s a backup for me, that if I cannot be trusted and I’m not around my parents, I’m older, that that someone that I can go to and be like, hi, this is what I need.
Gabe Howard: [00:31:24] And of course, we should also give a shout out to online options like PsychCentral.com has forums on every mental health issue, disorder, etc. under the sun where people just share. And I always recommend this method. Remember, it’s a salad bar. It’s a buffet. OK, if you go into the buffet and there’s something on the buffet that you don’t like, you don’t have to get mad at it. You don’t have to comment that you don’t like it. Just ignore it. Take what you want and leave the rest. There really is a lot to learn. You know, listen, I went to a group called “Bi Polar Bears” because I have bipolar disorder and I don’t want to oversell it. I didn’t meet my best friend there. I didn’t even meet any lifelong friends there. But for a period of about a year, these people were very much my family. I looked forward to seeing them once a week and they looked forward to seeing me. And just because we didn’t become lifelong besties that lived in New York across the hall from each other, it doesn’t mean that they didn’t have a real value in my life. There’s an advocate out there that says online friends are real friends, and I believe that support group friends or real friends as well. I think there’s a tremendous amount of value in it. Rachel, we are going to turn the tables on you and hijack your own show. Throw you out. And I am going to interview your mother. Are you nervous about this at all?
Rachel Star Withers: [00:32:49] My mother gets nervous easily, so I am nervous about what she will say when she is nervous.
Gabe Howard: [00:32:56] You seem to be wavering between worried about what she’ll say and worried that she’ll be uncomfortable, but worried about what she’ll say. Is she looking forward to it?
Rachel Star Withers: [00:33:08] Yes, she literally typed up like three pages of paragraphs just to help her calm down. Of literally just my life like me growing up, just to have something like, OK, I’ve prepped, I’ve done my work. My mom was very studious in school, if you didn’t catch that. But I was like, when did you have time to do this?
Gabe Howard: [00:33:30] That is incredible.
Rachel Star Withers: [00:33:32] I know, right?
Gabe Howard: [00:33:33] We’ll be right back after this message from our sponsor speaking with Janel Withers, Rachel’s mom.
Gabe Howard: Hello, everyone. My name is Gabe and we are here with Rachel’s mom, Janel Withers. Welcome. How are you?
Janel Star Withers: [00:33:46] Just wonderful, thank you.
Gabe Howard: [00:33:48] We are talking about schizophrenia and families. There’s lots of conversations in our society of, well, how does the family handle schizophrenia? And one of the things that we’re trying to do with this episode is instead of having Rachel tell us how her family feels, we just thought we’d go straight to the top and talk to her mom. So I really appreciate you being willing to do this. I think it’s going to help a lot of people.
Janel Star Withers: [00:34:13] I hope so.
Gabe Howard: [00:34:14] We’ll start with a softball question just to get you all warmed up. How would you describe being Rachel’s mom?
Janel Star Withers: [00:34:21] Well, I feel blessed, actually, she’s a wonderful person, she’s very loving and giving. I’m really fortunate that she’s our daughter. She’s just to me, she’s an amazing child. And even though she’s an adult, she’ll always be my child. But she’s a very good girl.
Gabe Howard: [00:34:36] I love that answer because, you know, I’m 43 years old and whenever I get in a room with my mom and grandma, I’m 12. Many parents see their children just as children, which kind of leads me to my next question. Do you see her as a child with schizophrenia or is she just Rachel?
Janel Star Withers: [00:34:53] Oh, goodness. I really don’t think about the schizophrenia that much. I guess I just am more concerned about her happiness and helping her to feel good about herself. I really don’t think about her as having schizophrenia, I guess, because she’s had it so long. I don’t let that define her. You know, to me that’s just a part of who she is. But the main part to me is she’s my daughter. So it’s just a condition she has.
Gabe Howard: [00:35:17] Do you think that society thinks that you should have answered differently, that that schizophrenia should be at the forefront of everything that your family discusses? Do you think people will be surprised that you just see her as your daughter rather than an illness?
Janel Star Withers: [00:35:31] Oh, my goodness, I don’t know. I’m not sure really how to answer that, I guess. You probably have a point, but I mean, she’s not dangerous. She’s loving and kind and does volunteer work. She works very hard. She puts a lot on herself. So more than anything, I’m just proud of her, how she handles her schizophrenia. And I know she really has some tough times, some tough nights, but she just keeps on trucking along there. And I think with her, she tries to make life easier on us without making us worry about her so much. I’m sure she hides a lot of stuff because she doesn’t want to concern us. So it may not seem as obvious to us sometimes as it does when she’s talking on Facebook or something like that.
Gabe Howard: [00:36:14] You became aware of Rachel’s schizophrenia when she was 20 years old. Did you suspect that there was something going on before then?
Janel Star Withers: [00:36:22] Well, I knew she had anger issues. We knew she had depression. We knew she was very hard on herself. She tried to be a perfectionist. You know, she was a quiet child. She was always very obedient in school and church. And the teachers loved her. And she did great grades. I never had to harp on her about doing her homework. But yes, as she got older, in her teenage years, she would have these overreactions to something negative, like if it was an argument in the family or something like that, if we said something negative and it was just a little tiny thing, she would just overblow her emotions with it. And sometimes she got where she was so angry she would throw things. And that was scary to me. My father has anger issues, but she was never really around him to see that. But he had mental illness. He, I’m sure he, suffered from depression. And he really had a lot of anger going on there. So, you know, he was abusive. Yeah.
Gabe Howard: [00:37:17] During those times before she was diagnosed in and in her teenage years, did you suspect mental illness or schizophrenia was at work? Or did you think it was, I don’t want to say “a normal” childhood development, but something that went along with childhood development?
Janel Star Withers: [00:37:32] Schizophrenia was never in my head at all. I just, I just didn’t think about that at all. You know, I really didn’t know anything about it. And I guess I just always heard what you heard on the media. But to me, it was depression. And my mother, she had depression. You know, I have it somewhat, too. But there were times like when she was 4, she had some temper tantrums. But I just thought it was part of her age growing up. Yeah. She sometimes would lock herself away in her room when she was a teenager. But then I also thought she was just being independent. So, you know, you can. Hindsight is so much you know, you could look back and say, oh, OK, now that makes sense. But, you know, when you do an everyday life and you have another child to take care of and you’re working and and sometimes the child, like with Rachel, she would keep things hidden and she wouldn’t talk to us. Sometimes you just don’t know. I mean, I hate to say I was unobservant, but both my husband and I were like, floored, I think when she was diagnosed with schizophrenia, I mean, we knew she had depression and stuff, but we really knew nothing about schizophrenia.
Gabe Howard: [00:38:34] Well, let’s talk about that for a moment. So there you are. Your daughter’s 20 years old. She’s an adult. You love her, obviously. And you hear this. You now know that Rachel has schizophrenia. What were those conversations like? What were you thinking? What were the days and weeks following it?
Janel Star Withers: [00:38:49] Well, the main thing was this how do we treat this? We had gone to a few counselors, some of whom she didn’t care for. So, you know, we had to find the right people. She tried numerous drugs, numerous treatments. She also went to electroconvulsive therapy, which was, I think, to help the depression and her anger issues. And I gotta say, that was a godsend in the way of her anger issues, because ever since then, she’s been such a joy to be around. I got to say, you know, I wouldn’t recommend it to everybody. I was terrified of it, but she researched and researched it and she said, this is what I feel I have to do. That I’m at my breaking point. Also, how do we deal with her? I mean, what can we do that will help her and not aggravate her, not make it worse?
Gabe Howard: [00:39:33] That’s kind of an interesting point that you made where you talk about what could the family do away from Rachel in order to support her. You know, so often the onus is always put on the person with schizophrenia. What can we do for them? What can we do to them? What do they need? And you’re sort of describing a situation where the family came together and said, OK, what do we have to do to take care of ourself and to make sure that we create a good home for all of us? Can you sort of elaborate on that a little bit? Because I really do think that that’s a point that’s often missed.
Janel Star Withers: [00:40:03] And we were blessed because Rachel was so independent and she was one to really research everything, she researched her drugs, her doses, her doctors. We were blessed in that she actually took the first big step into all of this. And then she would educate us. And while we might read books and stuff, she would say, well, this is the way it really is for me, which there’s no one answer for everybody. It’s just sort of a hit and miss. I hate to say that, but so we were really lucky that she was the one who did most of it. So we were lucky. Plus, she was older, too. She wasn’t a child anymore either. And she was college educated and stuff. So she would sometimes on her good day, she’d do all this research. And she was much better on the computer than we were. Of course, you know, back then we didn’t quite have all the online groups. And, you know, information out there like today is. It’s amazing what’s out there for help.
Gabe Howard: [00:41:00] And it should be pointed out that Rachel was one of the first online advocates. I mean, she started her YouTube channel a long time ago to help educate people. So it is a knack that she has. I mean, she’s not just good at explaining it to her friends and family. She’s really good at explaining it to the world. And that’s why she has this show now. So thank you for for helping bring Rachel into the world. It’s been amazing.
Janel Star Withers: [00:41:24] Well, I have to say, when she started doing those videos, I kept thinking, oh, you kind of need to keep this quiet, you know, because I don’t want people to think the wrong thing, because you automatically think, oh, you know, murderers and violence and all this stuff. But I’m glad that she’s out there. I’m really proud that she’s out there educating people. And she’s constantly researching. And it’s she’s talking to professionals. She’s educating people in a simple way. And she’s also shown it’s not the scariest thing to have. And parents, get over it. It’s not the end of the world. If your daughter or your son is diagnosed with schizophrenia, there’s a whole beautiful world out there and there’s treatments out there and there’s hope out there. I’m actually so proud of her for bringing this to light when in the beginning I really wanted to keep it quiet. So shame on me. But, you know, that’s the way it is.
Gabe Howard: [00:42:17] Well, and that sort of leads me into my last question. You know what you said about parents having to remember to have hope? What advice do you have for parents who find out that their their child or young adult has schizophrenia? What advice do you have for them?
Janel Star Withers: [00:42:32] First of all, I applaud them for taking this step to have their child checked out, to have that diagnosis. I think that’s a really huge step. You love, you listen, you watch them, and you get them treatment. And if one doctor doesn’t work or one psychiatrist or one counselor, you go to one that the child likes. Because if they don’t like they’re not going to open up to them. And they have to be comfortable with their professional, do online research, join, join groups, watch the medications that they’re on, watch the side effects, watch the benefits, the doses. As the drugs, you’ll have to find the right one that fits your child. Try to be supportive, find ways to calm them down. It could be like leaving a light on all night or just hugging them and rubbing their head when their head hurts or having them wear solid colored shirts and family members wear solid colored shirts because that calms a schizophrenic down. Other times they just need to be left alone for quiet time if they’re feeling pressured. But I would say if you can keep the door open, don’t let them lock the door.
Janel Star Withers: [00:43:33] See periodically check on them. For Rachel, it was a huge help, she insisted on having a small dog pet, an indoor pet. And we always had a farm. So we always believed the animals should be outside. But that dog is amazing. It gets her out of bed. She has to love it. She has to feed it. She has to wash it. She has to care for it. And it’s like a security blanket to her. She sleeps with him and it gives her somebody to love unconditionally. And oddly enough, dogs pick up on schizophrenics’ emotions and they’re right there with them. Also, it helps to make your child feel secure and let them feel that they can approach you anytime with any problem. And also something that’s great for Rachel and myself, our family’s always done family walks. Rachel and I go for about four mile walks about four times a week. And that’s when she really opens up her heart to me when we’re walking. So a lot of times you walk and talk. That alone just helps tremendously.
Gabe Howard: [00:44:33] Janel, thank you so much for agreeing to do this. You are right. A lot of families, they do try to keep it a secret both in terms of asking the person who is diagnosed with schizophrenia not to say anything. And then the families don’t say anything either. That really creates this void of support. And I’m hoping that through your daughter’s courage and your courage talking about it, that it will inspire other people to get the support that they need in their own communities.
Janel Star Withers: [00:44:59] Thank you so much. And a person with schizophrenia can have a full and wonderful life, just like Rachel.
Gabe Howard: [00:45:06] That’s awesome, thank you so very much. So, Rachel, did anything in there surprise you? Did your mother give away any deep, dark family secrets?
Rachel Star Withers: [00:45:17] Definitely no deep, dark family secrets. I was surprised that she opened up about a few things. I was very touched by a lot of her answers.
Gabe Howard: [00:45:27] When you say that you were surprised that she opened up about a few things, what in particular?
Rachel Star Withers: [00:45:32] Where she mentioned that her father had a mental disorder also. I was very surprised she said that. I know it. It’s not like that’s a surprise. We all know it, but I was surprised that she felt comfortable enough to share that. That’s something she definitely wouldn’t have shared years ago. And just kind of seeing that growth in her of being open about talking about mental illness across the board, not just with me, but referencing other family members. It makes me happy.
Gabe Howard: [00:46:01] Obviously, you’ve known your mother literally your entire life.
Rachel Star Withers: [00:46:06] Yes.
Gabe Howard: [00:46:06] Have you seen this growth? And just how do you, as a Janel’s daughter, feel about your mother’s change of opinion in all of this?
Rachel Star Withers: [00:46:17] It means the world to me. When I first told them they didn’t understand or I’m thinking maybe they understood what I was saying with the diagnosis, but didn’t want to accept it or just didn’t know how to handle it. So to see over the years my mom become more open, because I remember her sitting me down and being like, listen, you can’t make a video about this. You can’t talk about this to straight up. Being in videos about my schizophrenia is incredible. My dad is like such a happy go lucky person. And it was very hard for him to understand depression because he is very much the kind of person who is. Well, you know, if you’re not happy, choose to be happy. I mean, it sounds like a wonderful life. Oh, that’s just how he is. And he really just had no concept. And it took him quite a few years. I remember he once he was like, Rachel, I read this article where this man had cancer, but he’d also had depression for many years. And the man was saying that his battle with depression was so much harder than cancer. But no one ever wanted to talk about his depression because they couldn’t understand it. But cancer, they could. And he’s like, I think I understand now what you’re going through. More about it being in your mind. I just thought it was a really great thing for him to sit me down and tell me that it showed me he was definitely trying. He doesn’t understand a lot of things, but I love that with both of them. I can see them trying. My mom has gone through so much growth and that’s really cool to see her like I’m an adult. I’m in my thirties. To still be trying to understand her child and to still be adjusting is really heartwarming to say.
Gabe Howard: [00:48:00] Obviously, we edit the show, we edit the interviews, it’s all edited, so the interview with your mother took about a half an hour. And I want to disclose to both you and the audience, you know, I asked your mother and in several different ways, well, what’s it like raising a daughter with schizophrenia? What’s it like raising a schizophrenic daughter? What’s it like to live with a schizophrenic? And every time it was I just live with Rachel. I just live with Rachel. I just live with Rachel. She was very acutely aware in our conversations that you are, in fact, a person who has schizophrenia. But I couldn’t find any coloring of that in her decision making process or in the way that she relates to you. You were just Rachel. It was awesome.
Rachel Star Withers: [00:48:39] Yeah, a lot of her answers where she just said, I don’t think about it like you’re saying, I just she’s Rachel now. That was. It was very touching to me to say that. And while I wasn’t diagnosed as a child, there were clearly some issues. I don’t think she even referenced going to multiple counselors. I did have. She sent me to anger management counselors and whatnot when I was younger and a few different ones who never diagnosed me with anything. It was more just talking therapy. But even then, yeah, I don’t think she ever saw me as someone with an anger problem, some with any issues. It was just my child is going through something, not my child has this this undiagnosed thing at the time. She definitely was just really awesome how she responded. I agree.
Gabe Howard: [00:49:28] There’s a lot of talk in the interview, obviously, about, OK, we know this thing is wrong. What I found sort of interesting for your mother’s perspective is that she very much had a line drawn between the thing that was wrong you and the solution. And I think that kind of silo in compartmentalization is really, really good because she never saw you as the disease. She never saw you as anything other than you. And then we had to find what was wrong. The illness. And then we had to find the solution, the cure, the help and all of those things. Working together gets us to what her ultimate goal was, which is that her daughter lives the best life possible. And I think that sometimes we don’t think about things like that. And and this is why I think that it’s so important for caregivers and for family members and for friends to understand that they need education and potentially therapy as well so that they understand what’s going on. And I think that’s something that we should probably talk about for a moment. Do you think your parents did better when they educated themselves away from you?
Rachel Star Withers: [00:51:02] Yes, very much to be able to kind of step back, read things and then kind of look back on me and be like, oh, wow, yeah. These symptoms completely lined up to read. Other parents get different stories and what not. For one, I think it helped them. Not feel guilty because my parents have been in multiple media works of mine. I’ll sometimes free comments and people are very rude and judgmental saying, well, that’s just ridiculous. They should have noticed how come they didn’t get her help. But when you have a child, gee, you know, you do have the rose colored glasses on that. OK, whatever they’re going through. You know, that’s normal kid stuff. And I was my parent’s first child. This was our pre Internet. So it’s not like they could just look up something. If you didn’t know about a certain mental disorder, you just didn’t know anything about it.
Gabe Howard: [00:51:57] And Rachel, you live in a small town, so support groups are limited. There’s just there’s a lot less options than if you lived in, like, say, New York City with eight million people.
Rachel Star Withers: [00:52:06] Yes, and I actually grew up in the country, so not even small town surrounded by farms and cows and fields.
Gabe Howard: [00:52:16] And obviously, the Internet is good. You know, to give a
Rachel Star Withers: [00:52:18] Oh, yes.
Gabe Howard: [00:52:19] Shout back out to Chris Hickey, she started the Parents Like US Club, which is WW W. Dot. Parents like US DOT Club. And the whole purpose of that is just for parents to be able to share ideas, get education, and also when I think this gets lost. But to just vent, to just say, I hate this, I’m scared of this. I don’t understand this. I think it’s important. I think so often parents think, oh, well, all I can do is love. And I can’t have any dissent. I can’t show any fear, anger, nothing. And I think that’s unhealthy.
Rachel Star Withers: [00:52:55] One thing my mom said that I’m very proud that she said it is that getting a diagnosis of schizophrenia? It’s not the end of the world. I like that. She kind of went into that and she said that the world is whole, world is beautiful and that there’s a lot of different options. And she said there’s hope. And that made me feel warm and fuzzy inside, honestly, that that’s something that I’ve been saying for years, that she’s kind of picked up. And for her to add the hope part on that. Honestly, it makes me not feel like any kind of burden. You know, I feel that she sees this as, oh, Rachel will be OK. I’m not worried that she’s thinking, oh, my God, what am I going to do if we pass away? What? I just like the hope part that she mentions there.
Gabe Howard: [00:53:47] I agree, I like that a lot as well, and if you don’t have hope, what do you have? And I think that that is often missing when somebody is diagnosed with schizophrenia. Like you said, people walk up to your family like, oh, I’m so sorry. And nobody is saying it can be OK if treatment is available, recovery is possible, recovery is likely. It’s going to be hard, but it can be done. Now you have a brother. So you’re not an only child, and I I want to kind of talk about that for a moment because, you know, sometimes this gets missed in families. You know, we’re ultra focused on the parents were ultra focused on the person living with with schizophrenia, but they’re siblings. Let’s talk about your brother for a minute.
Rachel Star Withers: [00:54:59] And I would even say with a sibling style relationship. Cousins, the whole extended family kind of falls into this, too, where you’re growing up around someone with a mental disorder. What what is your part of me? My brother actually incredibly close now. I don’t think growing up that my schizophrenia affected him, but I could be completely wrong about that. He has never said it did. So me and my brother lived out in the country kind of in the middle of nowhere, so there weren’t a lot of other kids to play with. So we played with each other a lot and he is five years younger than me. And it’s funny because as adults now people will think that we have to only be like a year or two apart, like the way we interact. And I also think that’s great because I must look younger than I am adult, though. Assume that. Oh, wow. And a lot of times I’ve been told they think that my brother is actually the one who’s older because of just how kind of like funny that we are. And he picks on me so much that usually that’s a different dynamic. I remember as kids, I love playing with him and we would play action figures and Legos and we’d have all these different storylines. And he always wanted to play with me and it was really cool.
Rachel Star Withers: [00:56:22] I remember once as a kid, I latched onto this memory where he said, it’s so much more fun to play with you, like you make it interesting. I mean, we’re talking about like action figures. And I don’t know, I just as a kid, I was like, oh, wow. He thinks I make this interesting. I just like that. As an adult, after getting diagnosed, I really didn’t want my brother to know. I assumed my parents had told him, but I I didn’t bring it up. And one time my mid 20s, I was incredibly sick. I had an episode and I couldn’t drive and I called my mother. I’m sorry, you have to come get me. And she came and got me because I had my car at this other place. She brought my brother to drive it back. And at the moment when I was in the episode, I didn’t respond. But afterwards, when I fully realized that he’d been there, I was so embarrassed and ashamed at the thought of He saw me like that. He saw me with my words slurring. He saw me not making any sense. Being confused. And we really still didn’t talk about it until a few years later when me and him we would go on these really long trail runs and running for hours. And that’s when we started opening up and kind of talking to each other about both of our mental health things that we’ve both been through.
Rachel Star Withers: [00:57:44] And he felt like he could ask me questions about hallucinations. He felt that kind of we were in like a safe space where both of us could talk about it and. About two years ago, I had been my medication had been switched and I had some very dark thoughts in the switch. And one of them was too. It was so strong that it was to drink bleach. And I had shared him about it and I had been moved off the medication. And I he reached out and sent me a text was like, listen, you have another thought like that I want you to call me. So I just I don’t care what it is. Call me. It really meant a lot. But that’s how close we are now. And that yeah, he’s like, look, when it happens. Don’t tell me. Three weeks later, all this happened. So call me up. And just kind of to see that growth in our relationship is really cool. And I think the main point of it is that it’s just been a support base growing between me and him over the years. It didn’t happen overnight. I kept it from him for so long. But it’s definitely of all their relationships that I have. It’s one of the ones that means the most to me.
Gabe Howard: [00:58:58] Well, I think that is really cool and obviously, as you said, this is how families are constructed. There’s there’s cousins and there’s aunts and uncles and grandmas and grandpas and. And I think we need to talk more about the impact on the extended family, because they’re all there as well. And they have vital roles to play, even if it’s just supporting the people around you or giving them a break or, hey, just being your grandma and grandpa or your cousin or your sibling. Our relationships with our extended family is very important.
Rachel Star Withers: [00:59:54] To my other people out there with schizophrenia. Give your family a chance. I’ve had so many different family members reach out to me worried about someone in their family who had schizophrenia. I once had I was at an event and a guy in college came up to me and was like, I want to know how I can help my nephew. He’s like, what can I do? He’s this old. He’s I and I don’t know what I would I should do. Should I bring it up? Should I talk to him? Should we do something like a physical activity? Like it was just very interesting that this college kid was wanting to connect with his nephew like that. I had a grandfather e-mail me a few weeks ago and just look, I just found out that my granddaughter has this, you know? Do you have any tips for me? And just knowing that, you know, it’s not just mom, dad, like immediate family, you know, there are other people in your network that you might not be considering. And to those people who are listening to this, do reach out to them, let them know that you’re there. You do not have to take on some big responsibility, just like me and my brother would go running for miles. And that’s when we opened up. It wasn’t like we sat down to let’s have a really intense conversation. It was that was there something we were doing? And because we were running for miles, we would talk.
Gabe Howard: [01:01:24] I know that in advocacy we hear about a lot of families that are that are broken down by this, and I don’t think that that’s uncommon. So that’s the first thing that I think that we should say, if you’re listening to this and you think, well, my family is all messed up. A lot of families are messed up by this. This is this is this is serious. And there’s a lot of pitfalls to step into. A lot of times these dynamics. They weren’t created overnight and they’re not going to be resolved overnight. And we’d like to look at things like TV, movies, where we just sit our loved ones down and we have this big impassioned speech and it’s fixed. That’s really not reality. I think that your situation, Rachel, is more reality. You didn’t sit down to talk. You went running. You know, go bowling. Go play putt putt. Go to a movie. Go out to dinner. Offer to help them with a chore. You know, clean their apartment, their house. You clean the gutters and just spend time and then hope that these things will slowly start to form trust and a bond. And then hopefully that will lead to all of this stuff coming out and getting better.
Rachel Star Withers: [01:02:33] And our relationships with people change over time. New challenges that have nothing to do with mental health. Could you break relationships constantly but give people a chance? It’s one of the biggest things that I always said. Just give them a chance. Don’t write off well, this person. You know, my father has always been this. People change a lot as they age. And if it’s still a situation where Rachel, I can’t have any contact or my family refuses to help me, they’ve abandoned me. Create your own family. You know, all of this is about building relationships and the relationship doesn’t have to be hinging on your schizophrenia. I just stick out to build relationships and get those bond stronger. And yeah, it might take a few years to even broach the subject of the schizophrenia. Thank you so much for listening to Inside Schizophrenia. I’m Rachel Star Withers with my co-host Gabe Howard. Please check out our other episodes. Like. Subscribe. Write a review comment. And if you have any friends or loved ones or anybody who could benefit from our episodes, please share them. We will see you all next month.
Withers, R. (2019). Inside Schizophrenia: Families Impacted by Schizophrenia. Psych Central. Retrieved on July 8, 2020, from https://psychcentral.com/blog/families-impacted-by-schizophrenia/