Can people with schizophrenia fall in love? Can they date or even get married? In today’s episode, host Rachel Star Withers (a woman who lives with schizophrenia) and co-host Gabe Howard review their own past romantic experiences.
They also interview Andrew and Stephanie Downing, authors of Marriage and Schizophrenia: Eyes on the Prize. Listen to learn about their incredible journey of overcoming schizophrenia and building a healthy, rewarding, and happy marriage.
Editor’s Note: Please be mindful that this transcript has been computer generated and therefore may contain inaccuracies and grammar errors. Thank you.
Announcer: Welcome to Inside Schizophrenia, a look in to better understanding and living well with schizophrenia. Hosted by renowned advocate and influencer Rachel Star Withers and featuring Gabe Howard.
Sponsor: Listeners, could a change in your schizophrenia treatment plan make a difference? There are options out there you might not know about. Visit OnceMonthlyDifference.com to find out more about once monthly injections for adults with schizophrenia.
Rachel Star Withers: Welcome to Inside Schizophrenia. I’m Rachel Star here with my co-host, Gabe Howard. Gabe today, an interesting topic, love, dating, marriage while having schizophrenia. As if those three things weren’t hard enough.
Gabe Howard: Yeah, you can see why we waited so long to do this, because I’ve known you for a long time, Rachel, and in all that time you’ve never wanted to discuss love, dating or marriage.
Rachel Star Withers: No.
Gabe Howard: You’re OK discussing schizophrenia,
Rachel Star Withers: Yes.
Gabe Howard: But not love dating or marriage. So this is gonna be fun.
Rachel Star Withers: Yeah, I’m not a great source for relationship advice because I’m single. Like, that’s the end of the story, I you know,
Gabe Howard: That’s very fair.
Rachel Star Withers: Yeah, I have been. For a long time.
Gabe Howard: And you’re happy being single, you’re.
Rachel Star Withers: Yeah, sure, whatever.
Gabe Howard: No, I mean, seriously, are you happy being single?
Rachel Star Withers: I’d rather be single than unhappy.
Gabe Howard: That’s fair. OK.
Rachel Star Withers: So I’m fine as I am. We’ll say it that way.
Gabe Howard: You’re fine as you are.
Rachel Star Withers: Yeah.
Gabe Howard: I think the important thing for the audience to understand, though, is that you’re not single because of schizophrenia. Right? You don’t feel that those two things have any relation. You do have schizophrenia and you are single. But they’re, you understand what I’m trying to say.
Rachel Star Withers: If you’re asking me, could I just find someone, yes, I could.
Gabe Howard: But you’d be unhappy in that relationship,
Rachel Star Withers: Right, yeah.
Gabe Howard: I know that schizophrenia wraps around your entire life, but you don’t feel that schizophrenia is holding you back. You just haven’t met the right person. And you have very high standards and you’re an impressive woman.
Rachel Star Withers: I do, I do.
Gabe Howard: You should have high standards.
Rachel Star Withers: Another way for high standards is shallow,
Gabe Howard: You’re not shallow,
Rachel Star Withers: That’s all I like to say, shallow,
Gabe Howard: You’re not.
Rachel Star Withers: High standards, shallow, whichever.
Gabe Howard: Luckily, luckily, we found a married couple, we found Andrew and Stephanie Downing, who are the authors of Marriage and Schizophrenia: Eyes on the Prize. I had no idea that this existed. But, Rachel, you’ve been aware of this book for quite some time, even before we interviewed them for the show.
Rachel Star Withers: And what’s cool is so Andrew, the husband, he has schizophrenia and they found out and then they got married. So, it wasn’t like they’d been together, and then suddenly something happened a few years. She went in knowing that this is something that they’re going to have to deal with together for the rest of their lives.
Gabe Howard: And what was really cool about the interview, which is coming up a little later, is we interviewed them both at the same time, and I thought they were very, very candid. It was really interesting to hear their thoughts on this idea that people with schizophrenia shouldn’t get married and shouldn’t have kids. Rachel, what do you think about that concept that people with schizophrenia either should not be in romantic relationships or, what we most often hear, cannot be in stable relationships?
Rachel Star Withers: I think people with schizophrenia can do anything relationship wise, that doesn’t mean it’s going to be easy, as is most things in life. The schizophrenia is just something else added on. The reason two people break up may have nothing to do with schizophrenia. It could be the mother in law’s terrible. I mean, it could be they’re just really annoying. They snore at night and you can’t take it. You can only take so many years without sleep, you know. So there’s like silly reasons and like serious reasons why people do or don’t get married or do or don’t stay married.
Gabe Howard: Backing off from schizophrenia for a moment, just talking about general mental illness, as longtime listeners of the show know, I have bipolar disorder and I have been divorced twice. And I’m fascinated at the number of people who hear that I have bipolar disorder, and hear that I got divorced, that’s it. That’s all they know. They weren’t around when I was married. They’re just meeting me for the first time. I’ve been happily married for eight years now. And they’re like, oh, you got divorced twice? Bipolar disorder, right?
Rachel Star Withers: I mean, Gabe, I’ve always assumed you ran them off.
Gabe Howard: I understand why people feel that way, I do. It is an easy conclusion to draw and much in the same way with schizophrenia, bipolar disorder is all encompassing. To say that it had zero to do with it is certainly disingenuous. Rachel, I feel that following these stereotypes removes agency and responsibility from the people involved. And I think this doesn’t give us an opportunity to grow. I believed the divorces were my fault and that allowed me to be very introspective, look into myself and grow as a person. If I would have taken the company line, oh, it’s because I have bipolar disorder, then I don’t know that I would have improved and I don’t think that I would be happily married now. How do you feel about people who just blame their love woes on schizophrenia and then don’t improve as a person? I imagine that you don’t feel good about that because I’ve never, ever seen you use schizophrenia as an excuse for anything.
Rachel Star Withers: I think if you want an excuse, you’re going to find an excuse. Schizophrenia is a really big one that you could be like, well, no one wants me because of this reason. And there’s other things like, yes, the medication makes you gain weight. Yes, the medication makes you want to sleep. Most of them have sexual side effects. And you can say all of that does contribute. Absolutely. But at the end of the day, I’m responsible for me and it’s my job to find a way to love my life, you know, because those same things I could immediately flip in like, oh, man, I have a really bad job. No one’s going to want to be with me. My hair is falling out. Mine is, so don’t feel like I’m just pointing out the guys, it’s mine too. You know, there’s so many things, though. If you want an excuse, you will always have one. That’s not the way to look at it. And honestly, no one wants to be in a relationship with that.
Gabe Howard: We talked about in preparation for this show, and you told me that you were on dating apps. Do you list yourself on dating apps? You know, hi, woman living with schizophrenia, likes dogs?
Rachel Star Withers: No, if it’s someone that I like and we want to meet up for a date, I want them to know that ahead of time. I rather them know going in, hey, she has a mental disorder, blah, blah, blah, the more you get attached to them and then bring it up three weeks later and then they leave, I rather you leave than me get attached to you. The downside of that is, yeah, it probably makes a lot of people leave, but those don’t sound like good people for me.
Gabe Howard: This, of course, is a rampant discussion on mental health message boards. When is the right time to tell? Some people advocate like you, immediately. Some people advocate putting it in your dating profile. Other people say before the first date, some people say in person on the first date, somebody says by the sixth date. Some people say it’s none of their business, tell them on your wedding day. And when you read through it, all of the reasons seem rational. Now, you said that you tell people before you meet them in person and the number one objection to that is, but isn’t that a lot? I mean, you’ve never even laid eyes on this person and they’re already sending you their health history. How did you arrive at that being the perfect time to tell them rather than in person or on date number three?
Rachel Star Withers: I don’t just like send this message being like, hey, by the way, guess what? Can’t wait to see you tomorrow night. But I am at a different situation than most people with schizophrenia. I have a Web presence. I make a lot of media and different things. And it’s usually listed in most of my bios. And I always make sure that we’ve either looked at each other’s Instagram’s or something where I have a lot of schizophrenia stuff. Twitter. Like if you were to look over any of my social media and you didn’t realize that I had it, I mean, I don’t know. If it’s a case where I’m not sure if they looked at my Instagram like we haven’t friended each other, I usually send them a link to something I’ve done or just straight up to my website. And I say, hey, by the way, this is me. I work in mental health making media and I also have schizophrenia. I’ve only had to do the text thing probably about like five to ten times. So it’s not like I’m constantly sending out these texts. Most of the time, people will just see the social media or whatnot.
Gabe Howard: It’s interesting about texting people before you go on a date with them and telling them that you have schizophrenia. I want to say that I am against this method. I think that it’s kind of a lot for somebody to see in a text before they’ve laid eyes on you, met you as a person, been in your orbit. All of that said my wife, Kendall, I texted it to her and we’re now married and just celebrated our eighth wedding anniversary. So it worked. And people are you know, Gabe, you’ve just said that you were against it, but you did it. Yeah, I had just had a relationship end where I decided that I was going to tell the person on like the third or fourth date and it took about six weeks to get there. So a lot of texting, a lot of phone calls, but we only hung out three or four times. And finally over lunch, I told the person, I said, you know, hey, I want to let you know I have bipolar disorder. And a couple of days later, she’s like, hey, it’s too much for me. And like you said, I got attached. The reason that I told that person is because I liked them. I enjoyed the six weeks. So here came Kendall on the same dating app. And I was like, I’m just going to get rid of you. And it all worked out. Do you think maybe there just is no right answer? It’s whatever happens to you happens to you?
Rachel Star Withers: I would say there’s absolutely no right answer, your gender, your age, your other situations, all of that stuff plays in. Every situation is different and every person is. You shouldn’t feel like you have to tell anyone up front. That’s your personal business.
Gabe Howard: You mentioned gender differences, do you think that there’s a gender difference between a woman telling a man that she lives with schizophrenia versus a man telling a woman or even in the LGBTQ community? Do you think it’s different than in the straight community? I know I’m asking you to speak for a lot of people. I know that’s a lot. But you’re the research queen. What have you found?
Rachel Star Withers: Our two episodes we did on gender and schizophrenia, definitely check those out if you haven’t yet.
Gabe Howard: They’re great, they’re great.
Rachel Star Withers: We learned that women with schizophrenia tend to have a better social outcome and longer lasting relationships and children than men with schizophrenia. Men tend to be diagnosed with schizophrenia, significantly younger, around late teens. And then you have women, the average age, which doesn’t apply to everybody, didn’t apply to me around like 30s to mid 30s. So there’s a very good chance that a lot of women are already married before it ever is a diagnosis. Whereas you have guys going in knowing, oh, no, I have to tell this person this thing, whereas the women you’re already married already probably have kids and then it comes up. So I think just the social constructs are kind of stacked against men in that situation. You know, we always have the joke in society that women are crazy. So I do think a woman would probably get away with saying she has a mental disorder and the other person taking it easier than if a man says it. And unfortunately, like we also learned with gender, with the males, usually people hear males with schizophrenia and they think violence.
Gabe Howard: I can imagine this would be hard for dating because your friends would be like, wait, you’re dating a schizophrenic? Doesn’t that mean that you will be X, Y, Z in your sleep? That’s unfortunate, because please listen to that episode. Schizophrenia and violence. Small, tiny percentage, yes, but there’s a small, tiny percentage of violence that exists in society. Schizophrenia doesn’t raise or lower it. It just sort of exists within it.
Rachel Star Withers: Let’s talk about that other person in the relationship, so the person who does not have a mental disorder, who is, and we’re talking just waiting to full on marriage, whatever went with that. And that’s kind of where I mean, you are a little bit different, Gabe, where you’ve had multiple marriages and I’ve had none nor been in even close to a stage where that would happen. And in a way, it’s good because I don’t have anything hanging over my head. I don’t feel that I impacted anyone’s life that negatively. And I’m not saying, you know, you are a horrible person, but same thing. You know, that is a lot to kind of weigh on you, that your symptoms did affect another person.
Gabe Howard: It’s true, and I imagine it’s a silver lining to being single. I know I’m prying. Rachel, thank you for being vulnerable, but do you feel that the fact that you’ve never been married is sort of a plus for you? Because, like you said, you don’t have any regrets. Your schizophrenia did not impact a love interest.
Rachel Star Withers: It’s a good and bad thing. While I haven’t had to deal with those negatives, I also haven’t gotten any of the positives. I’m sure you had great moments, positive moments in that marriage. And I think that’s something hard for a lot of people with mental disorders who are single. They’re like, well, I want that. I want to be in love. I want to have someone. When you look at just your support network, you kind of think, oh, well, what if I’m alone at age, such and such? You know what’s going to happen to me after my parents pass away, after, you know, my friends get married and have their own families? Like, what about my support system? And they’ve even found research that people with schizophrenia, when you’re unhappy with your relationship status, you will have worse symptoms than those who are happy with their current relationship.
Gabe Howard: In many ways, it’s one of the meanest things about schizophrenia that the disease process is impacted by external factors. If you’re in a healthy relationship, your symptoms are less. If you’re in an unhappy relationship, your symptoms are worse. But now if you’re in no relationship, your symptoms are less or worse, depending on how you feel about that. Rachel, as a single woman, are you happy being single and therefore getting the benefits of less symptoms or are you unhappy being single?
Rachel Star Withers: I personally am very happy with my relationship of nothingness right now, like, I don’t feel like, oh, wow, I really wish, you know, I was married, I really wish, you know, and at age 35, as a woman, most women are either married or they’re not happy that they are still single at thirty five, that’s not like a good thing. They’re like, you know, really throwing that net out there, whatever I can catch at this point. So I do think it’s different. I actually get asked quite a lot, why are you single? Different things like that. And I’m like, oh, you don’t know me, that’s why.
Gabe Howard: Rachel, you kind of brought up an interesting point there, that you’re 35 years old and you’re single and that society doesn’t like that. I know that my 35 year old single female friends who do not have schizophrenia just get all kinds of pressure to just relationship up right now, because after all, the biological clock is ticking. You’re not getting any younger. Do you get more or less pressure because of the schizophrenia in comparison to your non schizophrenic 35 year old contemporaries?
Rachel Star Withers: I get a lot less, and that’s been something that’s kind of come up and I don’t really let people know that it hurts me, but it does. It will kind of come up like subtlely.
Rachel Star Withers: It can be frustrating because I feel that the schizophrenia label is just so like put on certain people and that even people closest to you, your family, have these biases against you. And they don’t mean to. They absolutely don’t mean to. But it is what it is.
Gabe Howard: But an unintentional bias is still a bias. Do you think that people would be surprised if you got married?
Rachel Star Withers: I absolutely think they would be surprised if I met someone and I was in a relationship and then got married. I think it would have some bad sides, too, because, oh, well, thank goodness someone saved her.
Gabe Howard: Really, even though you’ve been living for 35 years all by yourself, if you got married tomorrow, the full credit would pass to the spouse?
Rachel Star Withers: I really think so, and, oh, thank God we were so worried about her and OK, now we don’t have to, you know, worry she’s taken care of. Like, I really do think that there would be a bad side to that of just seeing me. Like, yeah. As if that other person is my caretaker as opposed to a spouse.
Gabe Howard: When it comes to schizophrenia, caregivers are very important. The problem, I think, is I don’t know that we have like a good definition of caregiver. In many cases, the term caregiver is simply given to the person standing next to the person with schizophrenia. I would like a more robust definition. A caregiver is somebody who is actually giving care on a daily basis, and the person that they’re giving care to cannot live without that care. That is what I consider a caregiver. For example, when I had surgery, my wife was my caregiver for a couple of days because I couldn’t stand up without her. That seems like caregiving to me. But two years after surgery, when people are like, oh, well, that’s Gabe and his caregiver. What? What care is she giving? Well, you know, because you live with mental illness. OK, so you’re literally just calling her my caregiver because she’s standing next to me. Good marriages are based on being equal. And for the most part, people don’t consider people living with schizophrenia equal to their caregivers.
Rachel Star Withers: And that’s a very important point, especially for anybody who is looking to get married in the near future, is to think about that and even set up some kind of like boundaries because one partner is going to get really burned out quickly if they feel that they’re that caregiver, if they feel that they have to take responsibility over this other person, that’s just too much for anybody to handle. And that’s why support systems are so important. It shouldn’t just be you two against the world. It doesn’t work in most normal relationships. And it’s definitely not going to work when you’re dealing with schizophrenia thrown in there, too. Make sure that you stay in contact with your friends, that you bring your parents around whenever you feel comfortable, if possible, let them come to the therapist with you or the doctor at least like get to see that side of you and understand. Even for the partner without the mental disorder, it’s important that they have a support group, too. You shouldn’t be their only sounding board because they’re going to get frustrated, they’re going to get stressed out. They’re going to need other friends to talk to and be like, hey, he did this. And I don’t know if this is schizophrenia or that’s just what being married to a man is like. So both sides need a support system and they need to be able to talk openly without judgment. If there comes a time when one of them needs more care than others, you should already kind of know what you’re going to do, kind of have that plan in place. So, hey, I’m going to be making sure that you take your meds every day when you get sicker. I’m going to help with this. All right, cool. And then when you have your throat surgery next month, I’m going to buy you so much ice cream.
Gabe Howard: Rachel, people ask me about my marriage all the time and they want to know the differences between my marriage and regular marriage, and that’s the first thing that I want to say. There is no difference. I do have a regular marriage. In a regular marriage, there will be challenges. It’s for better, for worse, in sickness and in health. That applies to all marriages. I just happen to have this sickness that I need help managing. And some of that help is very, very tiny. Most days, the only help that I need is my wife reminds me to make a doctor’s appointment, not because I’m not managing my mental health, but because the minutia of life gets in the way and she’s like, oh, shoot, you need a physical this week. Don’t forget to work in your blood work and pick up the dry cleaning because your blood work is next to the dry cleaner. That’s just what life is like. I’m surprised at the number of people that are like, well, no, no, no, no. Your marriage must be completely and entirely different because of this one thing. It’s not. We can’t figure out what to have for dinner either. We’re largely not special. I think that is a key component.
Rachel Star Withers: And we’ll be right back after a message from our sponsor.
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Rachel Star Withers: And we’re back talking about love, dating and marriage while having schizophrenia.
Gabe Howard: Rachel, we have a great guest interview, and you were very impressed with their online presence, their book. Honestly, it’s one of my favorites, but I might be a sucker for love stories.
Rachel Star Withers: Yes, Andrew and Stephanie Downing, who wrote Marriage and Schizophrenia: Eyes on the Prize, and they are a married couple. He has schizophrenia. Whenever you’re looking for books about schizophrenia, not many of them are really upbeat. And then you think, oh, wow, marriage and schizophrenia. I’m thinking that can also work as a horror title. You know, this could go a lot of different ways. And I was reading different parts of their book and I just really loved their attitude to take on life. And I was surprised by the interview, Gabe. I don’t know what I was expecting, I was just so taken that they were like an open book with us.
Gabe Howard: I thought they were super cool, let’s listen right now.
Rachel Star Withers: Today we have Andrew and Stephanie Downing, the authors of Marriage and Schizophrenia: Eyes on the Prize. Andrew, first of all, I’m excited to talk to you, a fellow person with schizophrenia. What’s up?
Andrew Downing: Hey, I’m doing good, how are you?
Rachel Star Withers: Very good, and especially to talk to the both of you. Earlier in the podcast, I said so I’m single, pretty much forever, so I don’t have much to put in when it comes to having a major mental disorder and long term relationships. So I’m excited to talk to both of you, inspired to talk to the both of you. I want to jump right in. What has been the biggest obstacle?
Andrew Downing: We’ve been through so much, we’ve been together for 18 years and we’ve gone through so many different periods, and if you look at the first period of our relationship, there was different challenges and obstacles at that time. And now fast forward to 18 years later. Now there’s new obstacles. And so schizophrenia has just really brought us on a really long, different journey with so many different angles and all the questions you could ask us are going to be different at different times in our life.
Stephanie Downing: As I reflect back, the biggest obstacle was when Andrew was in the middle of a psychotic episode, meaning when he did not have a good sense of reality and he was having hallucinations, he was delusional. We were engaged at the time and he ended up in the psych ward. The night before he ended up in the psych ward, he gave my engagement ring back and it felt like the Andrew that I fell in love with, the Andrew that I knew died on me. It truly felt like a death. And the person I knew and fell in love with was gone. And I would say that that was the biggest obstacle showing up at the psych ward and visiting him there and realizing that this person that I love is very, very sick. And I was young. And so we’ve been together now for 18 years. That was the most difficult time. And that was 16 years ago.
Rachel Star Withers: So that was kind of the biggest obstacle right there at the beginning, so you got the hardest part over. That’s amazing. But what have been some of like the constant stressors throughout your marriage?
Stephanie Downing: The big stressors, I would say, is just instability. Also, a big stressor for us has been health care. Medication is a stressor, finding the balance between working through challenges and then also just accepting challenges.
Andrew Downing: Yeah, and when I was first diagnosed with schizophrenia, I was taking a load of medication and now you fast forward to this part of my life and I’m on a lot less medication. That has made life a lot easier for me in general. The medication and the side effects have been so intense and dealing with that from the age of 19 and now I’m 38 has brought so many challenges. Like Steph mentioned, the health care as well, just the stress of not knowing that I can afford my medications or finding the right health care plan so I can continue to take my medications. All these hoops that we’ve had to jump through around schizophrenia with medication and health care has definitely been an obstacle and a major stressor.
Rachel Star Withers: Speaking of medication, how do you two deal with changes, so, for instance, if the doctor wants to change you to a different type of medication, do you talk to Stephanie about it? Do you all weigh out the consequences? Because believe me, I understand side effects.
Andrew Downing: Yeah.
Rachel Star Withers: Yeah, I think how much it’s disrupted my life. I can’t imagine also being a parent and having a spouse with it.
Andrew Downing: It’s an incredible challenge and that probably eight or nine years ago, maybe a little bit more, because of the medications and the side effects, trying to keep up to Steph and trying to be a good husband for her and trying to be a good father. I didn’t know that I could keep doing it. The side effects from the medication were so intense, they’re still intense. And just trying to keep up to people that are not on those medications was incredibly difficult. And there’s been many times in my life I thought, I don’t know if I can do this anymore. So I just feel fortunate to have survived. And fortunately, Stephanie has been patient and just willing to deal with my ups and downs and more importantly, my downs. You know, how willing she was to sacrifice to be in my space and allow me to heal.
Stephanie Downing: When I first started dating Andrew, he was on a very low amount of medication and he was so lively and talkative and energetic. And that’s the guy I fell in love with and I didn’t really know any better. And when he started getting sick to the point where he was starting to have more symptoms, he then had to increase again. And he was so different. He was so tired. He was so just lethargic. And he looked sick to me and that was medication side effects. And so that was very new to me to experience that. And that went on for years that he was just so tired and he seemed so sick to me. And I would question like, is everything OK with us? Like, does he just, is it things just not going well in our marriage? Is he unhappy? But a lot of that was truly the side effects of the meds. And we’ve watched him try to adjust and tolerate. But it’s had so many effects that it’s really a lot to talk about, just even thinking about how he’s had to change his lifestyle. And if we want to go on a trip making sure he has his medication and thankfully he can be the night driver because if he doesn’t take his nightly meds, he can stay up all hours of the night. But then he’s kind of punished in the next day. We all kind of feel a little punished when he’s so tired throughout the whole entire day. So I think a lot of people think that people go off their meds because they’re feeling better and they don’t need them anymore. But I think another part of it is that people truly feel sick and tired on their medication.
Andrew Downing: I was not very honest with my medications right away. I didn’t really want to even talk to doctors about my medications. I just wanted to avoid doctors. And I was very closed off as far as discussing medication with people in general. I was more comfortable with Steph and we did and continue to talk just about everything. And she’s been so great for that. We just have gotten the pattern of communicating and communicating as much as possible. And I’ve betrayed that confidence many times with the medications and not told her that I was going to not take the medications anymore. But she’s definitely been a process of are you on enough meds? Do you need more? Do you need to talk to a doctor about this? But in general, I would say that Steph has acted as my therapist and my med provider and just somebody who I should like, everything should be should go through her. And that role that she played, that instrumental role, that being a therapist, being a med provider in a marriage was a lot of stress for her. And I believe that got really frustrating after a while. And so eventually I needed to find a way to do this more on my own where it was less of a burden for her so she could have more of a regular life. And we’ve transitioned into that now where, you know, I don’t talk to her about the meds as much. And I’m really consistent and locked in with what I want to do. We’ve communicated about everything and usually been on the same page with what medications to take and what to do next.
Rachel Star Withers: You’re not just married, you also have children. Your children are pretty young. How have you dealt with pretty much your schizophrenia being part of the family relationship? Do they know? Has it caused any issues?
Stephanie Downing: It has been pretty normal overall, and both Andrew and I work in the mental health field, so I think that helps a lot. And our daughter is 14 now and our son is 7. And so it’s just kind of where they’re at developmentally to know how to talk about it with them. Our daughter just read our book last summer, I believe we said it seems like a PG-13 book. And she had questions, but she’s very mature and actually, you know, considering genetics and things that are passed down, I mean, I can already see anxiety and depression kind of forming and, you know, the concerns about her future mental health. But because Andrew and I are so open and honest and we work in the field, I think that conversation and that encouraging communication and comfort talking about what’s going on has been really helpful. We try to take things seriously at times and then at other times we have to take things lightly and joke about things and use humor and just try to keep it balanced that way a bit.
Andrew Downing: Yeah, and we have a 7 year old boy and we’re driving down the road, and there was something on the radio about mental health and my son James in the back, he goes, hey, dad, you have mental health, right? And I was like, yeah, yeah, I got mental health. My daughter’s in the car, too. And we just started laughing. So Ella being 14, she gets it and she says the word schizophrenia, whereas James is more like, oh, dad has mental health or I think he says schizophrenia once in a while. But it’s a total different experience. I’ve tried to use mental health and my journey as inspiration for them too and not been afraid to tell them, yeah, I am mentally ill because living a lie or pretending that I don’t have it is really, really bad for me. I have to be up front if I want to feel close to people. They usually need to know that I have schizophrenia and I have this issue because it’s such a major part of my life. And so my kids are no different. You know, I feel like they need to know what’s going on in my life.
Rachel Star Withers: When it came to having children, were you worried at all about them having schizophrenia or how that how Andrew’s schizophrenia might affect that?
Stephanie Downing: I would say yes, because of the reactions of others for one. I think it’s probably people’s number one question that they ask us when we’re sharing or talking about the kids and having that fear. And I think that it’s there, it’s in the back of my head but, like Andrew tries to remind me and I try to remind him, is that with schizophrenia or with mental illness, there’s also so many strengths in a person that we try to just really focus on those and try to build those up and build those skills. Because whether our children end up with schizophrenia, which does run in Andrew’s side of the family, even beyond Andrew, or if they end up with anxiety or depression or anything, it is just to have those skills to be able to manage it. And then even beyond that, the hope of a recovery.
Andrew Downing: Right away, at the beginning of our relationship, we had certain medical professionals, teachers and different people in places of power or influence who were definitely worried about Stephanie having a relationship and having children and we were told don’t have children. And I think that attitude has changed a little bit. And I’d like to say that I’m more on that revolutionary side or that really super hopeful side that says, why do we have to be so afraid of schizophrenia? Because I enjoy my life. I’m a happy human being. I like my daily life. And sometimes I feel more healthy or happy than people that don’t have schizophrenia. So other people in my life I see are struggling with alcoholism and they’re struggling with drug addiction or they’re struggling with this, you name it. What life isn’t going to have a struggle? And why do we have to think that schizophrenia is this just awful, horrible thing that you can never enjoy your life on? Part of my training as a peer support specialist was really rejecting the notion that schizophrenia was this endless, hopeless struggle and that you couldn’t get better and that you couldn’t be happy. So I’ve tried to have that forward thinking and not being afraid. And Stephanie has really helped me understand that if we can be there for our kids and talk to them and have this open relationship and be able to talk about mental illness and not be afraid of it. And if we had early intervention, we even have less to worry about.
Rachel Star Withers: That’s absolutely awesome, Andrew, I love that attitude, obviously, schizophrenia is a very serious mental disorder and whatnot, but I’m always like, you know, it’s not that bad. I was like in a lot of things could be worse, you know, compared to the world’s problems of like, you know. Oh, but that’s a really great attitude. And I love your answer. I have so many people ask me, should people who have mental disorders have children? And I’m like, I don’t have any children. So I don’t feel like I should answer that because I’ve never even been remotely in the situation. It hasn’t happened. So it’s really interesting to get to talk to you two who have already been there and have such a great outlook. What advice do you have for couples who are thinking about getting married and one of them has a very serious mental disorder like schizophrenia?
Andrew Downing: Steph, you want to go first on that one? You took the big risk, you were the one, you’re like, yep, I’m going to sign up for this. So I just feel like you might have the best advice right away on this one.
Stephanie Downing: Ok. Again, communication is a huge part of a healthy relationship, and that got us through a lot. That communication piece is huge and we needed to talk about things, we needed to process things. And I needed to know that he was going to be receptive of what I was going to say. And we got to this point in our relationship when we talk about love. And a lot of that was can you put that other person’s needs and happiness before yourself? And I tried to do that for him. And I think he could see that. He saw me model that through the time and the sacrifices that I made to be with him, to show up, to leave my college dorm and show up at the hospital and visit him there and just to be there with him through those really difficult times. And then in turn, I could see that he wanted to do that for me. And if his sickest moments, I didn’t see that and that hurt. But pretty much the majority of the time I knew that he wanted to put me first and make sure that he was going to be able to meet my needs in a relationship. And so I saw that potential and I knew that we were going to work through a lot together. But because he had that desire and he wanted to make those choices, I can tell that, you know, hopefully with the time and practice and training in every relationship, you want to teach different things. And now it’s trying to get them to load the dishwasher properly. But I knew that he was responsive and receptive to what I wanted.
Andrew Downing: Yeah, and advice I would give to other couples or maybe someone that has a serious mental illness and is considering being in a relationship would be to make sure you feel prepared for an incredible journey and climbing a mountain. It’s going to be difficult. And if you’re taking a lot of medications that are making you super tired and sick, being in a relationship is going to make that more difficult. And it has been a really big challenge for me to have a wife and have kids. And I felt like at the beginning of the journey and throughout different periods of our life, that mountain has felt like it’s just too hard to climb. And thankfully, I’ve been able to keep going. But I think you need to ask yourself what kind of intensity or what kind of pain can you put up with? What can you deal with? And everybody’s going to be different. So everybody has a unique set of challenges and has different stressors. And so my advice might not be the best for somebody else in a relationship situation. I have a background in hockey. And I played hockey through two torn rotator cuffs and three traumatic brain injuries. And so being in a marriage and having kids, I was used to training my body and used to taking a punishment. And so, I just want to make it clear that it is a big adventure and it’s not something to be taken lightly because you’re joining two lives together and possibly more with kids. And it’s not something to just rush into. And I feel so lucky that I found Steph because I feel that most other people I knew couldn’t have put up with me. I was so lucky to find her because she was willing to deal with some really intense, weird stuff.
Stephanie Downing: It just keeps ringing in my mind to take your vows seriously in sickness or in death. I mean, I did take those seriously and as I went, I think I was 21 when we got married, pretty young. And when I said those vows in sickness and death, like, I knew that that must mean somebody is going to get sick, somebody is going to struggle. And how am I going to respond to that?
Rachel Star Withers: I have a question for you, Stephanie, when Andrew may be starting to have a hard time, whether it’s an episode or maybe side effects kicking in from medication, how do you know that’s coming and how do you deal with it? How do you bring that up to him?
Stephanie Downing: So that is difficult to answer, but one thing that I do look for is irritability and anger and frustration. There’s the right time or better times to talk to somebody about things. My children know not to talk to me when I’m tired or hungry. They’re just not going to get a good answer from me in the right tone and stuff. So looking for that with Andrew has been helpful. If he is seeming really agitated that I’m going to back off. But then it really, truly is important to confront at times. And as long as they know that you are somebody that is going to be consistent in their life, that you want to be the person that is accountable for keeping them accountable. I think if they can have that sense and use wisdom or discernment and it’s a good time to talk about it, then you’re just going to bring it up and you’re going to let them know how you’re feeling or I’m feeling and just letting them be aware. And this seems really off right now. And so not being afraid to have those conversations, but also considering the right timing of it.
Andrew Downing: I would just add too that Steph has done a good job of challenging me on things that she was certain that I was being delusional or that I needed to change courses in my life or needed to recognize that I was feeling mentally ill. And she hasn’t got it perfect every time. But she has taken those chances and been willing to say, Andrew, you’re not doing well right now. I think you need to recognize that these thoughts that you’re having are they’re delusional or that they’re wrong. And that you need to make an adjustment in your life. And there’s been other times in my life where she’s backed off at just the right time and just given me space to feel. And so that is such a hard thing to know. Which one does he need? Does he need this challenged? Does he need this confrontation or does he need space? And that is that is very difficult.
Stephanie Downing: But I will say when we work through the chaos and the challenge, that there’s usually a lot of growth and healing after that and a lot that we both learn from the experience. So it does prove worth it.
Rachel Star Withers: Obviously, all marriages have conflict. Does any normal marital issues ever get blamed on the schizophrenia?
Andrew Downing: That’s a good question. I think at times, maybe once in a while it does, I think, normal things get changed into schizophrenia things. But Steph has been amazing for one, just not accepting the label. She doesn’t see me as somebody with schizophrenia and therefore she doesn’t have this set expectation from that. And I think that is a really destructive thing. So if you see somebody as a label or somebody with schizophrenia, then you’re going to have that problem more often with regular things are getting attributed to schizophrenia. And she has been so great of not seeing me as somebody with schizophrenia, but more just as a person, just seeing me as Andrew and that has really helped.
Rachel Star Withers: Hearing you both speak, you just hear an absolutely wonderful, very happy, supportive couple, the schizophrenia takes a back seat, which is awesome. So I actually want to end the interview with Stephanie, if you could tell us about Andrew and then Andrew about her.
Stephanie Downing: Ok, so Andrew was on my crush list in ninth grade, and he was just this amazing person that was very skilled at hockey and then he was this talented or is this talented musician that can play right now every instrument. And not only that, but he paints, too. And when I first started hanging around with Andrew, which was like in college when we first started dating, looking at his paintings and the depth and the creativity of his brain and the way it works is so fascinating to me. And we just kind of went on a journey together. I just knew that he had these qualities and these values that I loved and he was so sensitive and easy to talk to. I fell in love. And he’s been an absolutely wonderful husband. We do have our difficult times, as everybody does. I just am so thankful to be with him and I’m proud of him.
Andrew Downing: Stephanie has been on my radar since ninth grade as well. That’s a long history. And, you know, I have actually a pretty hard time talking about the subject without just starting to cry like a baby because she really saved my life. You know, she came to me when I was at absolute rock bottom and was basically the only person willing to get in my space, not just be from a distance or say one thing here and there and just be really distant. She was not afraid of schizophrenia, was not afraid of mental illness, was not afraid of anything. She came into my life and stayed there. And I was so lucky to fall in love with her. She was willing to go somewhere really uncomfortable and be willing to be in somebody’s space that was kind of scary. And I was scary when I was 19. I was a kind of a person you didn’t want to be around because you were afraid of what was going on. And because of my success in hockey, my name was known across the country. And yet at that time, 19 years old, nobody wanted to be around me except for Stephanie. She saw me walking on the hill and she called me up and has changed my life. And I feel so fortunate to be with her and to watch her grow through all of this and to be such an impactful human being in the mental health service world. She’s getting her graduate degree now, and I’m just so proud of her. She’s such an asset for this community, for kids in the community, for adults. She has served people all the years of my life. I’m so proud of her.
Rachel Star Withers: That’s awesome. Is there anything else that you two would like to share with our listeners here on Inside Schizophrenia?
Stephanie Downing: I would say just having hope is such a big deal and to know that we strongly support the mental health field and believe that having wraparound services is so important, but then also just knowing that if it’s your neighbor, if it’s a friend and you’re just there to support through having those conversations and being willing to go in those uncomfortable topics is really important. But having hope and the value of loving somebody in a way that sometimes you do have to have some sacrifice.
Andrew Downing: Our culture, we’ve moved towards isolation so much, and I know that part of that is to do with COVID right now, but I would just encourage others to get involved in other people’s lives and not from a distance and not from a safe place, but really get up close and personal and spend time with people and reach out and try to make a difference. Not just from a comfortable space at home, but to get out there in the community and try to reach people that are struggling. Try to help others avoid isolation.
Rachel Star Withers: Awesome, so I know I have the book here, Marriage and Schizophrenia. Is there anything else you want to promote?
Andrew Downing: We do have our book available, Marriage and Schizophrenia: Eyes on the Prize, it is on Amazon and most other places for the paperback copy, but you can get the ebook for a dollar right now. Also, my music is available out there. My debut solo jazz album, Fighting Time. So Andrew Downing, Fighting Time is available on all the streaming platforms. Check it out. I think you’ll enjoy it.
Stephanie Downing: It’s awesome for sure, he plays all instruments, and writes the music.
Andrew Downing: So to clarify, I don’t play all instruments, but yes, I do play piano, bass, drums and guitar on that album.
Rachel Star Withers: How can our listeners find you? Are you all on any social media?
Andrew Downing: Andrew Downing music is on YouTube. I’m also on LinkedIn, Twitter, Instagram, Andrew Downing music, the social media platforms that we have are more geared towards the music. But I also put stuff on there for our book as well.
Rachel Star Withers: Thank you so much for spending this time talking to us. It’s good and bad, but you’re a rarity. It was incredibly hard for me doing research for this episode. Getting to meet you both and hear you talk and how just absolutely uplifting you are. And just honestly, #relationship goals. Like it’s really, really awesome. Definitely I know giving our listeners and me also a lot of hope.
Andrew Downing: Awesome. That’s really great.
Stephanie Downing: Thank you. Thank you for having us.
Andrew Downing: Yeah, thank you so much.
Gabe Howard: And we’re back. Rachel, what are your thoughts?
Rachel Star Withers: I was taken away, you know, the whole time they were talking, I loved it, it was very sweet. I think you can hear in their voices when they’re talking back and forth and sometimes you hear his voice begin to crack a little and you kind of hear it in hers that you could just see that they’ve both been through a lot and they both love each other a whole lot. I don’t know. I was so inspired by them. If I’m going to get married, that’s what I want. I want that kind of partnership.
Gabe Howard: It was nice, it was hopeful.
Rachel Star Withers: And I absolutely love the way that they had already brought it up to their children, the young son saying you have mental health. Like those kids, you know, are able to ask questions. They’re able to be knowledgeable and not be afraid of stereotypes.
Gabe Howard: The schizophrenia was just something that as a couple they had to deal with. Like managing the household or taking care of the children or taking care of the dog or planning a vacation, manage schizophrenia was just something on the list. It wasn’t the focal point, but it was important and something that they as a couple had to address. And I thought that was amazing because so often mental illness permeates too much and that’s all they focus on or one person tries to handle alone and not utilize the resource of their spouse or support system. And that never turns out well either. I liked their management style. They didn’t ignore schizophrenia, but they also didn’t make it the focal point of their marriage. They made each other the focal point of their marriage.
Rachel Star Withers: And this sounds like a mushy thing to say, Gabe, especially you know me, I’m pretty cool, but they gave me hope. They really did. You know, just how uplifting they were and the fact that they both kind of were like, hey, this is life. Relationships are not easy for anyone. Recently, a psychiatrist, who I only went to once, asked me why I was single, and she kept pressing me for answers. And I was getting really annoyed about this because I was there because I have severe depression also, and I needed a medication change. I understand why she was asking. She was asking pretty much how was I responding with sexual side effects of what I was currently on. And I’m like, no, I need medicine so I won’t hurt myself not to go on the dating game. And a lot of times I feel people with schizophrenia are like me. We have so much to deal with, hallucinations, delusions, depressions. Just getting out of bed, taking a shower some days is monumental. So trying to find a relationship, a person to date, is the least important thing on my list. But listening to Andrew and Stephanie, it really helped me see that a relationship wasn’t out of the picture for me. It didn’t have to be, you know, the last thing on my list, it was more of a possibility. Thank you so much for listening, like, share, subscribe with all of your friends and family, and we will see you next time here on Inside Schizophrenia.
Announcer: Inside Schizophrenia is presented by PsychCentral.com, America’s largest and longest operating independent mental health website. Your host, Rachel Star Withers, can be found online at RachelStarLive.com. Co-host Gabe Howard can be found online at gabehoward.com. For questions, or to provide feedback, please e-mail [email protected]. The official website for Inside Schizophrenia is PsychCentral.com/IS. Thank you for listening, and please, share widely.
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