Schizophrenia, a neuro-mental condition that affects less than one percent of all people, is well-known, yet poorly understood. Contrary to typical pop culture portrayals, it does not create a split personality, or make people violent and dangerous. When it starts to manifest, typically in adolescence or early adulthood, the condition’s effects can be so subtle that both medical experts and the people experiencing them often miss them, or misread them as signs of anxiety or depression.
As it develops, schizophrenia usually causes constant or intermittent hallucinations, disorganized speech and thought, and distorted perceptions of the world, including other people’s actions and motives. People with schizophrenia may struggle to differentiate delusions from reality. Many also find it hard to feel pleasure, express or manage their emotions, or connect with others.
The exact nature and intensity of schizophrenia symptoms and the frequency at which people experience them vary considerably from case to case. So does the extent to which the right combination of medication, therapy, and everyday support for a person’s specific needs can mitigate them. But across cases, schizophrenia usually has a major impact on people’s everyday lives—including their sex lives.
People with schizophrenia are as interested in sex and relationships as anyone. But they often have trouble finding intimacy, sometimes because their symptoms make it hard to manage dating or hookups, and sometimes because of the social stigmas surrounding the condition. Those who do find partners often report that their symptoms can make it hard to think about sex or feel sexy, to concentrate during sex, or to communicate their sexual needs and wants. Some of the medications used to manage symptoms can also lead to issues with libido, sexual sensation, and orgasm.
Conversely, some people with schizophrenia experience episodes of hypersexuality, which may lead them to take risks they otherwise wouldn’t. This, alongside the general vulnerabilities associated with symptomatic schizophrenia, may help to explain why people with the condition seem to experience more STIs and unwanted pregnancies, among other issues.
Unfortunately, it can be difficult for folks living with schizophrenia to find support in figuring out how to navigate sex and intimacy. Researchers didn’t pay much attention to the topic until fairly recently, and many clinicians don’t think to bring it up with patients. A few academics and care providers are trying to change this with calls to action in professional groups and academic journals. And in recent years, advocates have sparked public dialogue by speaking openly about sex and schizophrenia on podcasts, social media, and other public forums.
Still, it’s hard to find stories of schizophrenia’s effects on people’s intimate lives. VICE recently spoke to Lauren Kennedy, who runs the popular Living Well with Schizophrenia YouTube channel, and her longtime partner, Rob Lim, about the role schizophrenia plays in their sex lives and how they manage its effects.
This interview has been edited for length and clarity.
Lauren: My schizophrenia started when I was in high school, with mood disturbances. I thought I had depression. That morphed into highs and lows, and mania. (I have schizoaffective disorder, which is like a combination of schizophrenia and bipolar disorder.)
When I was 24, I started to smell terrible things and hear things—like my name, or just chatter—that weren’t coming from anywhere. I had delusional thoughts, like believing my medical care team was trying to harm me.
I was in a long-term relationship when my psychosis symptoms developed. They completely changed the dynamic of that relationship. I was consumed with my symptoms and didn’t have the headspace to pursue intimacy anymore. The relationship ended just before I got diagnosed at 25.
After my diagnosis, my mind didn’t turn to sex very quickly, but I worried right away about intimacy more generally. I worried people wouldn’t accept me because of the stigmas around schizophrenia, and that I wouldn’t be able to be a good partner. On the medications I was on then, I felt like I wasn’t able to fully function, or to be as present and active a partner as I wanted.
Rob and I got together when I was 26. I’d been dating beforehand, but I hadn’t ever told anyone about my schizoaffective disorder, because that didn’t feel safe. I think I decided to tell Rob about my condition on our third date, because I did feel safe. He took it really well.
Rob: I have a degree in psychology, so I’d studied schizophrenia a little. But that was 15 years before we met, so I didn’t know a ton. I hadn’t noticed anything that I’d connected to schizophrenia before Lauren told me she had it.
Lauren: I still don’t think you really knew what schizophrenia was, or how it could affect me—or us—in practice until much later in our relationship.
Rob: No, I probably didn’t fully realize what it meant for you or us until you ended up in the hospital much later on.
Lauren: Do you think I misrepresented it to you when I first told you about it?
Rob: Umm... Not in the worst way?
Rob: There’s a lot to unpack, though, beyond just saying, “I have schizophrenia.” Like, What has your experience with it been like? Disclosing something like that is the start of a conversation.
Lauren: When did you first notice my schizophrenia in our intimate life? [Laughs] I’ve never asked, so I’m curious to know about this!
Rob: There were times when you seemed more tired—like it wasn’t a great time for sex. But the beginning of our relationship felt pretty typical to me, in terms of being in a honeymoon period where we had sex with each other a lot. I didn’t feel like schizophrenia affected that at all.
Lauren: But at that point, we weren’t living together. Our dates were on days when things were going well for me. If I was experiencing a lot of symptoms, I’d stay home in bed. It’s hard to initiate any intimacy when I’m having hallucinations or feeling restless or emotionally flat. And sometimes I’m just too manic to have sex.
Rob: Yeah, I definitely saw more of that as we got closer.
Lauren: I also feel like I was super flat when we started dating. Did you pick up on that?
Rob: When we’ve talked about what we want in sex, you’ve said you’re looking for feelings of ecstasy and connection. And I appreciate that, but sex is a more physical thing for me.
Lauren: So, maybe because sex is more about creating emotional connection for me than it is for you, I notice when I’m having trouble with my affect and connection more than you do?
Rob: Yeah, I think so. To be honest, I don’t really pick up on when Lauren’s having trouble processing or expressing emotion.
Lauren: I don’t think we’ve ever had a discussion like, “Hey, I’m symptomatic now, I don’t want to have sex.” Rob’s always just been good at picking up on when sex might not be on the table for me on any given day or night.
I’m not always symptomatic, so we still have plenty of chances to be intimate with each other. And sometimes when I am symptomatic, sex actually helps ground me. It’s a pretty intense act that occupies my headspace enough that I’m not having hallucinations or anything else when it’s happening. It also reaffirms my connection to the closest person to me in the world. I try to judge if sex will be grounding based on if it feels good and right when we’re cuddling or starting to kiss. If so, then, Yeah, let’s keep going.
Rob: As I learned more about schizophrenia, I did have some doubts about whether we’d be able to have a successful relationship in the long term.
Lauren: In 2019, I went off my medication and tried to hide the fact that I was becoming more symptomatic. I was hospitalized that October. I think Rob felt like I betrayed his trust by hiding that, and that definitely affected our intimacy.
Rob: After that, we started going to couples therapy regularly. We both have our own therapists, as well. We’ve realized that we can navigate a lot together, but there will always be friction—and especially after something like that, we need support in working through things.
Lauren: We made the conscious decision to work on communication, and on getting stability back in our lives. It’s actually dawning on me that maybe the fact that we never discussed and tried to work on schizophrenia specifically in our early relationship was an issue in and of itself. We may not have given as much thought to my condition in our intimate life as we should have.
Rob: We didn’t realize the importance of communication at the beginning of our sex life. It’s something we’re working on. Recently, we’ve had some conversations with our therapists about how we think about consent in relation to schizophrenia. Because we don’t have sex when Lauren’s really symptomatic, but...
Lauren: There are grey areas.
Rob: This actually came up a while back: We were having sex, and I stopped and said, “I don’t know if we should be having sex right now.” Lauren was like, “Oh, no, I totally can,” and I took her at her word. But after, she was like, “I probably couldn’t have given consent then.”
Lauren: Yeah, I wasn’t sure I was totally present, or that I knew what was going on. I mean, I did know, but… It’s really hard to explain what this is like…
Rob: So… what does that mean for our sex life? I don’t feel good about that, you know?
Lauren: But I feel like that’s my fault! [Laughs] If I want to have sex in a given moment, I’m probably not going to tell Rob all the details of where my head is. But that lessens his ability to make an informed decision.
Rob: We haven’t reached a conclusion about this yet. We need to talk about it more. [Laughs]
Lauren: It’s tricky, because those grey areas are just slightly more extreme versions of what I go through all the time. But I think that usually I can consent to sex even when I’m more symptomatic—especially because I always know that Rob is someone I love and trust and want to be intimate with, even when I’m constructing alternate narratives about the rest of reality.
There’ve also been periods in our relationship where we haven’t has as much sex. Like, if I’m on different medications for any reason, my sex drive might just plummet. We also have three kids now, and one of them is seven months old. So that’s changed our sex life, too. [Laughs]
Rob: I’m impressed we’ve been able to maintain our sex life as well as we have, given that we have kids. But there’s still room for us to develop how we navigate sex, for sure.
Lauren: We’re always working on our communication. That’s an ongoing process.