Inside Schizophrenia: Schizophrenia in Women
Often we don’t really consider gender dynamics in treatment or medication. A lot of medications are only tested on men because of the risk of pregnancy, etc. This means there are whole drugs that have made it to market that may not have ever been tested with women. Schizophrenia affects women in many different ways than men.
In this episode schizophrenic Rachel Star Withers and cohost Gabe Howard discuss differences in age, symptoms, treatments, lifestyle, parenthood in the genders as they experience schizophrenia.
Dr. Hayden Finch joins to explain the medical side.
Highlights in “Schizophrenia in Women” Episode
[02:00] Age of Onset
[04:45] Age of Onset in families with mental disorders
[05:00] Social Dynamics
[07:00] Symptom and Treatment differences in women
[11:30] Diagnosis differences
[13:30] Menstruation’s effect on schizophrenia
[19:00] Romantic relationship differences
[21:20] Pregnancy and schizophrenia
[31:45] Aging and the Second Peak of schizophrenia
[38:00] Interview with Dr. Hayden Finch
[48:00] Be Assertive
[54:00] Self Advocacy
About Our Guest
Hayden Finch, PhD in Clinical Psychology
Dr. Finch is passionate about serious mental illness and is an accomplished clinician and writer. In addition to developing outpatient and residential treatment programs for people with serious mental illnesses, she has been involved in mental health policy and legislation advocacy. After graduate school, she was fortunate to combine her commitment to Veterans and passion for mental health by training at the VA, where she was involved in developing an inpatient treatment program for Veterans with serious mental illnesses. A true lifelong learner and teacher, Dr. Finch is now applying her passion for education and serious mental illness to developing educational materials aimed at reducing stigma about serious mental illnesses and coaching people with serious mental illness, their providers, and their families to work toward recovery. Dr. Finch practices what she preaches regarding setting life goals and is most content when she’s traveling with her family or walking with her dogs.
Get Dr. Finch’s new book on schizophrenia:
Computer Generated Transcript of “Schizophrenia in Women” Episode
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 Withers here with my wonderful co-host, Gabe Howard. This episode we are exploring schizophrenia in women. Next episode, we’re going to focus on the men. But this whole episode is for the ladies.
Gabe Howard: Often we don’t really consider gender dynamics in treatment or medication. And this is chronic across all health, not just schizophrenia. A lot of medications, et cetera, are only tested on men because of risk. They don’t want to impact, you know, a potential pregnancy, etc. And on one hand, this sounds good. We’re protecting pregnancy. But on the other hand, this means there’s whole drugs that have made it to market that may not have ever been tested with women. So I think that it’s exciting to consider how schizophrenia impacts the genders differently. Obviously, we want to state unequivocally that if you meet two people with schizophrenia, you’ve met two people with schizophrenia. You know, there tends to be this idea that all people with schizophrenia are exactly alike. And we hope that this show has done a lot to dispel that misinformation.
Rachel Star Withers: Just like if I meet two guys named Gabe, they’re probably both different,
Gabe Howard: Probably.
Rachel Star Withers: Probably. Repeatedly you hear the difference between men and women with schizophrenia, the biggest thing is the age of onset. Women are said to develop it later than men. On average, they say four to six years later than a man would be diagnosed, let’s go. Be diagnosed with schizophrenia. And that’s one of the things they’ve noticed repeatedly in research across the years, is that women get schizophrenia in life later. Sometimes, you know, late 20s, they’ll even say.
Gabe Howard: It’s interesting because as you said, it’s diagnosed with. We know from research that people are born with schizophrenia. So the question becomes, and we don’t know the answer to this because research is ongoing, do men and women become symptomatic at the same time, but men get the diagnosis faster? Or do women not develop the symptoms of schizophrenia until later? And it’s difficult to discover that. And some of it is social engineering. If a woman is behaving erratically, well, of course, she’s a woman. And this is the kind of thinking that we have to prevent and get over to make sure that everybody gets the best care. But it’s on one hand, it’s interesting to think about when we’re diagnosing people and how we’re diagnosing people. But on the other hand, it’s kind of sad if men and women are showing symptoms at the exact same age, but it takes women an extra four to six years to be diagnosed. That’s also scary.
Rachel Star Withers: Yes. And they do say, however, that it’s less detectable in women, which I could totally see because I grew up having hallucinations, but I didn’t even realize myself that that was weird until my late teens. Then I stopped talking about it. So I didn’t get a diagnosis either till my 20s so I could easily see, you know. Yeah. Women tend to be more social. They tend to be more active than men who have schizophrenia. So, yeah, it could probably fly under the radar much longer.
Gabe Howard: It’s interesting how you put that, Rachel. You said that as soon as you noticed that you were having these hallucinations and issues, that you hid them, but you remained social, you remained engaged and talking to the people around you. Whereas men, when they notice them, they tend to retreat. It’s that retreating that I think makes people realize that perhaps something is wrong. You know, why is this person staying in their room? Why does this person not have a job? Why is this person talking to themselves? Whereas because you remained social, people don’t say, well, hey, we like it when Rachel comes over. Rachel is funny. Rachel is nice. She must be hearing voices in her head and experiencing psychosis and hallucinations and all of the other symptoms of schizophrenia. I can see how it could mask it, especially to our friends and family who are not trained psychologists or psychiatrists.
Rachel Star Withers: And the flip side of that coin is families that schizophrenia tends to run in, there actually is no difference in the onset of age between men and women. So like brothers, sisters. And that’s because, yeah, if grandma had it, if mom had it, you know, so and so cousin has it, you tend to be looking for those symptoms and recognize them earlier, whether it’s a boy or girl growing up. You tend to notice that. They have acknowledged that if the family and friends are aware that there could be a potential problem on the horizon, they are noticing it much, much sooner.
Gabe Howard: There’s also a study out of India that has found no difference in the average age of onset between men and women. And I think that really does speak to the social dynamics between cultures, because if people in India are all having the onset of schizophrenia at the same time, it would really be unusual to think that there’s some sort of genetic difference between Americans and Indians. It sort of speaks to this being a social construct. And again, research is ongoing. We’re not 100 percent sure of any of these things.
Rachel Star Withers: In a lot of countries, having a mental disorder is looked down upon even more so than I would say in the Western world. They don’t have statistics on those kinds of things because, unfortunately, it will go no one is diagnosed until much later in life where they can’t function at all. So it is interesting. When we look like, you know, how people grow up. What’s expected of men and women? I do think women can fly under the radar longer sometimes just because you’re not like, well, a guy at 18, he needs to get out. He needs to get a job. He needs to. And yeah, I feel like just like my family, they’re gonna be a little softer on the girl in the family than the boy. So I can easily see like that flying under the radar.
Gabe Howard: To your point, Rachel, when we talk about the social differences between men and women, of which there’s a lot, I really think of people who have battled schizophrenia for a long time. And when I work with those people, they say, hey, look, I haven’t had a job in five years. And all of the men very much want to know what to do about their resume. They’ve got a five year gap, a five year gap, a five year gap. And many of the women are like, well, a five year gap is no problem. I was raising kids. I was a caretaker for family. It’s just nobody is questioning their five year gap, whereas people are questioning a male’s five year gap. And all of this is just to tie in that in some cases, the differences between the treatments and the symptoms of schizophrenia have considerably more to do with our society than it does with the actual disease. Now, all that said, there are disease processes and symptoms, processes that work differently in women vs. men.
Rachel Star Withers: As we get into the symptoms, if I’m saying this, and you know, you’re like, well, Rachel, I’m a woman and I don’t experience it that way or I’m a man and I totally have. No, no, no. Just saying across the board, which symptoms tend to flare up in different genders? Women actually, like we said, are more sociable. So different things like the flat affect pretty much where you don’t experience emotion. You have a very dull expression is not seen as often in women. Women tend to even have more emotions. And I know that’s like, oh, of course women are emotional. But with schizophrenia, a lot of times people have a blunted emotional response so they don’t really react the same way, quote unquote, normal people do. But women, we come off as still acting more emotional to those around us. Inside, we might not, but we’re able to kind of fake it much better. Our speech isn’t reduced. And I found this interesting, Gabe, women with schizophrenia are actually more physically active than men across the board. And also under that, they can be more hostile. You know, past episodes where we’ve talked about violence and schizophrenia, if you were to picture a violent schizophrenic, I don’t think anyone pictures a woman.
Gabe Howard: Not only do I not think that anybody pictures a woman, I think that the way that society responds to a male who is being aggressive and a female who is being aggressive is very different. And there’s a plethora of reasons for this. Listen, I weigh 275 pounds and I’m six foot three. If I am being extremely aggressive and loud, that’s going to look a lot scarier than if Rachel, who is considerably smaller than Gabe is yelling. Also, people tend to be more willing to de-escalate a female than a male. And again, a lot of these things fall under social constructs and our whole society is set up this way. Right? It’s not just in schizophrenia where this is important. We see this in policing. We see this in jobs. We see this in you know, I could never scream at a server in public. But, you know, there’s a whole Internet trend of calling women who scream at servers Karen, and everybody thinks that that’s funny. But sincerely, the humor comes from somebody yelling at somebody in public. And because that person’s a woman, it’s considered funny. You could never change the Karen memes to John. Well, you know, John just stands up and starts screaming at a server. People would think that’s not funny.
Rachel Star Withers: No, that’s like, yeah, everyone turns around and is like their about to call the police thinking he’s going to start swinging.
Gabe Howard: The perception is very, very different. And because schizophrenia is an illness that is based on self-reporting, based on observation, based on behavioral patterns. So obviously society’s perception of what they’re observing is going to determine the diagnosis that you receive. And to that end, because of the different ways that we perceive the genders, women are often mis diagnosed with schizophrenia more often than men are.
Rachel Star Withers: When it comes to health reporting, I feel that men and women would probably also report different symptoms more often. I don’t think I ever went in and was reporting, you know, oh, I just don’t want to go out with my friends. Oh, I just want to, like, stay inside. I talked about depression and that was the initial diagnosis I got repeatedly, was just that I had depression. And I was too scared to even bring up hallucinations and delusions. I kind of, you get used to just, oh, OK, you’re just overreacting. Oh, you’re just overthinking. So that never occurred to me that certain things I was having was a delusion. It was just, oh, yeah, I just, I’m overthinking things. So I think across the board it’s easy to see the women who would be diagnosed with different things. I do wonder if doctors are quicker to label men as schizophrenic than women.
Gabe Howard: It’s important to point out how difficult it is to research and study this when we exist in a culture that isn’t actively discussing it. And as we’ve been talking about this whole show, culture and society impacts our outlook. So when a male is looking at a female patient, some of those biases are bound to creep in. I do think that we have made great strides now that more women are in psychiatry, because while they have biases, too, they at least have interjected more understanding of women. And I think that’s very, very good. Now, one of the things that’s interesting to me is when we plotted out the show, Rachel, I was shocked at how much was just society. How did you feel about that? What were you thinking when you were researching the show?
Rachel Star Withers: It made me look back on my own life and kind of think huh? You know, how had I like self-reported, you know, certain things and didn’t like the way they were responded to. And I think back to the more physically active and hostile thing. I was very, very hostile towards my father specifically when I was in high school. And I don’t mean I was like trying to hurt him or anything, but I would have these breakdowns and he would try and restrain me, which just made it worse. You know, not necessarily doing what’s the best way to deal with someone having a psychotic breakdown. And he was still much bigger than me and able to kind of like grab me and control me. But I think now, had it been my brother who was bigger than my father, there wouldn’t have been any controlling. It definitely would have escalated to police or we can’t deal with this on our own situation much quicker than it did with me. And it just makes you think, though. Wow, like, yeah, if I’d been a guy, you know, or even just more physically different, my life could’ve played out, I don’t want to say worse, but it would have had a different impact.
Gabe Howard: Rachel, well, this is an awkward question. Do you think that a female menstrual cycle has anything to do with schizophrenia and why or why not?
Rachel Star Withers: Oh, I think it absolutely does. I’ve long thought that menstrual cycles and the women type stuff definitely affects my schizophrenia. It frustrates me to no end that at least once a month, I know for three days my schizophrenia is gonna get a lot worse. I’m going to lose touch with reality. I’m going to kind of get more spacey. I have to really be very careful. I get more delusional. I know my hallucinations get worse. I pretty much have to anticipate these days are coming. And during these days, I need to live in my room as much as possible to avoid potential issues. And it’s right before my period. And this has happened over and over. And I’ve brought it up to multiple doctors. And it’s not like you can just, okay, well, you know, up your medication for three days. It doesn’t work that way. You know, they’ll just be like, well, you know, make sure you track it and do your best. There’s never really been like a way to deal with this. And it’s been frustrating because talking to other women with schizophrenia and mental disorders, they agree that the exact same thing will happen to them. And yet no one really has an answer for us.
Gabe Howard: And to put it another way, half of the schizophrenia population is having this issue or has had this issue at some point and there doesn’t seem to be a big push to do anything about it or resolve it or to come up with a plan other than hunker down. This is just part of womanhood. I imagine that it is extraordinarily problematic because three days out of every month, that’s 10 percent of your life between the ages of 16 and 45 on average. That’s a lot of time.
Rachel Star Withers: Yeah, and I’m not saying that’s three days for all women with schizophrenia. It’s just me, I know there’s going to be three bad days. And it’s not just okay, women saying, hey, I think this is happening. No, it’s been observed that schizophrenia symptoms in women get much more severe during the low estrogen phase of their menstrual cycle that women go through once a month if they’re in those certain ages. That, yeah, it’s been observed. The symptoms are much more severe. It’s like, OK, we’re not going to deal with this, though. And I’m not trying to put down anything. But I’d say most of the times that I’ve been lucky enough to get to speak with researchers in that side of mental health, people who are like the scientists, it does tend to be predominately men. I could see this not being on their radar as much. Just kind of, yeah, if ninety percent of the guys are researchers, it doesn’t even occur to them to look into that.
Gabe Howard: Rachel, along those same lines, you’ve been a schizophrenia advocate for well over a decade, advocating for others. But of course, you’ve had to advocate for yourself. Really probably since the beginning. What advice do you have for women who are experiencing this so that they can advocate for themselves and have a chance to be heard?
Rachel Star Withers: I’ve said this so, so many times about so many different things on this podcast, but track your symptoms. Be able to actually prove, and this sounds bad, prove. I’ll have like my little app, it’s a menstrual app that tracks menstruation, all that, but it lets me put down symptoms. So you can actually like hand it to the doctor, be like, no, no, look. See this week right here? See this? Again, I’ve never gotten a good answer on how to deal with this particular situation. But it has helped to be able to be like, look, no. I can see that these are the main three days and I can usually pick out the week where those days are gonna hit. And just kind of, all right, let’s do my best to work as little as possible, you know, if that’s an option for me and that kind of thing.
Gabe Howard: Rachel, continuing the discussion of symptoms that only impact women. Women with schizophrenia are diagnosed much later in the process with breast cancer than women without schizophrenia.
Rachel Star Withers: Yes. And there’s a few different reasons why they think this is. One is that women with schizophrenia tend to ignore their physical health more so than the normal population of women. OK. And it could be partly because of psychosis, not actually realizing something is wrong. For me, I can easily see that a lot of times my physical health just takes a back seat to my mental health. It’s like I’m already doing so much trying to keep my brain on track. I can easily just not worry about physical stuff because I’m already on like six different medications from my brain. Do I really need to do other things? And I think I go to the psychiatrist so often, my therapist so often, and then I got to go to a normal doctor, too? When I was reading the different stats as far as what woman with schizophrenia tend to not get treated for until the later stages, osteoporosis, also thyroid conditions, diabetes. Yeah, I could see that. I totally could see that. Too busy worrying about your brain falling apart half the time to worry about your body also.
Gabe Howard: As we discussed in last month’s episode, people with schizophrenia are much more likely to have more comorbid issues of schizophrenia and something else. So in that line of thinking for a woman, it’s not too far of a stretch to consider that one of those co-morbid conditions, of course, would be breast cancer.
Rachel Star Withers: Yes, Gabe, that makes perfect sense.
Gabe Howard: Rachel, let’s move over to dating for a moment. Now, men and women culturally and societally date differently. So it’s not too much of a stretch to assume that women with schizophrenia and men with schizophrenia would also date differently. Now, what research did you find? Because I was really surprised that there was any research at all on how people living with schizophrenia date. But you found a wealth of it.
Rachel Star Withers: Oh, so much. And on that note, throughout my years of being open about schizophrenia, I have repeatedly got messages all the way down from teenage males to significantly older, all the way to like their 70s, 80s males. And one of the main things they always bring up to me is issues with the opposite sex romantically. And I’ve even had some very angry comments left on many of my videos. It’ll be like, well, it’s easy for you to say, you know, you’re not an overweight male. And I’m like, you know, and I get that.
Gabe Howard: Yeah. What do you say to that? Yeah.
Rachel Star Withers: Yeah. Yeah, I can see, yeah. There’s a How I Met Your Mother, if you ever watch that show, where Barney has like a little chart saying that, you know, women, their hotness and their crazy and this like can’t be off. So the hotter a woman is, the crazier she can be. But you don’t want to date a woman who’s like really, really crazy, but she’s not that hot. And it’s like a TV show and it’s a joke. But I do think women can get away with, yeah, guys will overlook a lot of things to still date certain women. Women could, you know, just be seen across the board like, oh, well, yeah, they’re a little bit crazy or wild, and it not be a bad thing. They’ll still be able to date and marry. Whereas a guy that’s more red flags. It’s also easier to hide your schizophrenia as a woman. If I’m on a dating app, and I talk to a 34 year old guy who lives at home with his parents in their basement.
Gabe Howard: That’s like a deal breaker
Rachel Star Withers: Yeah. Yeah.
Gabe Howard: For you. Even though you’re a 34 year old woman who lives at home in your parents basement.
Rachel Star Withers: Yeah, it’s more easy to be like, well, you know. Oh, OK. It’s OK for her, but yeah. A guy, I immediately I think it’s like, oh, no. That’s unfair. I agree. It is totally unfair.
Gabe Howard: Rachel, no show about women and schizophrenia can be complete if we don’t discuss pregnancy. What all did you learn about schizophrenic women who are pregnant or trying to get pregnant?
Rachel Star Withers: First, I feel like we should hit on that this is a touchy subject. Should women with schizophrenia even get pregnant? Should that actively seek out to be like, yes, I want to have my own children? I’ve had people just out of the blue come at me being like, so what are you going to do? And regardless of me having schizophrenia, kids are gross. Let me stress that. They’re just gross. Um, and I figure like.
Gabe Howard: But even that said, I think it’s important to point out as much as you don’t want to have children, Rachel, you still think that it would be wrong if somebody passed a law that said women with schizophrenia cannot be mothers.
Rachel Star Withers: Yes, I agree. My own personal beliefs and I think this is gonna be different for every woman with schizophrenia and different during parts of your schizophrenia. Mine has gotten incredibly bad at times where no me being pregnant would not have been an option. Nor holding down a job, nor like driving a car. That’s just being in certain psychotic episodes. Right now, if I were to get pregnant, it would not be the end of the world. Yeah, it wouldn’t be great, again. But I really don’t think that anything, you know, horrible. I’m not in a really bad mental place. Do I still have episodes? Yes, but I feel like I honestly could have a baby right now and be fine. Again, that’s a touchy subject across the board and.
Gabe Howard: It was shocking how touchy it was. I mean, with everybody weighing in. Men, women, mothers, even politicians weighed in. The research was frankly shocking as to the number of people that had an opinion about a woman being a mother. And, I’d like to point out, a woman that nobody knows, we’re not discussing whether or not Rachel. Just like a whole swath of women based on a medical diagnosis. And all of the sudden a large group of people decided that their opinion was strongly relevant.
Rachel Star Withers: And this is something that has happened repeatedly throughout history. I live in South Carolina and just north of me in North Carolina, there was a big issue where, not even that long ago, the 60s, 70s and 80s, women who had mental disorders were sterilized. If they were in different asylums and things like they were just forced sterilization across the board. Some of them who weren’t even diagnosed correctly. And that has just been kind of an ongoing thing that had happened. And it was also had a lot to do with ethnic groups were particularly pointed out also. So this is like a real thing. And I know I’ve gotten so many messages throughout the years that have been like, you need to be sterilized. And I’m like, OK. But it’s funny, though, because, yeah, you’ll have people who don’t know anything about you who feel very, very passionate about this subject. Probably and it doesn’t affect them in any way. And it’s going to be a very personal issue. Let’s talk, though, about some of the fears about a woman getting pregnant who has schizophrenia. One is that they might not realize or recognize that they’re pregnant.
Rachel Star Withers: It could be due to psychosis. It could be they’re in denial of the pregnancy. It could be that they’re misinterpreting. Think about like how many medications cause weight gain. I could easily see, you know, someone gaining weight and you’re starting a new medication. It never even occurs to you, oh, wait, this isn’t, it isn’t that type of weight gain. So there’s that is the worry about schizophrenic women not necessarily realizing quickly enough that they’re pregnant. And then there’s the whole medication side of it. Usually it is highly suggested that you stop anti-psychotics, and most antidepressants and whatnot if you’re pregnant due to the safety of the baby. And then there’s the withdrawal action. So while someone could have been stable before, having to go off their medications to be pregnant might cause other issues. It’s all just very interesting. And there is no cut and dry answer of, oh yeah, you should totally get pregnant or you shouldn’t. I do think it’s a personal decision and a situation that’s gonna be, yeah, different for every single human going through pregnancy.
Gabe Howard: We’ll be right back after this message from our sponsor.
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Rachel Star Withers: We’re back discussing how schizophrenia affects women.
Gabe Howard: Obviously, when we’re talking about pregnancy, Rachel, we have to talk about motherhood. So now you’re a woman with schizophrenia and you have children. There was a plethora of research on that. It was compelling.
Rachel Star Withers: Yes. And when we’re dealing mental disorders, you know, you have homelessness. You have a lot of I don’t want to say sad stories, but you do you have a lot of sad stories that are also factored in. You have a lot of sad stories dealing with rape and things like that. One third of women with schizophrenia lose custody of their children. And whether the children are going to other family members, ex-partners, the foster care system. And, the others, women with schizophrenia who have children, very few maintain sole custody. And that goes back to fear that they are unable to care for a child correctly, that they might not recognize problems, especially in infancy. What the baby might need, what the baby is going through. The mother might interpret it wrong. And again, it’s all this is a touchy subject because every situation is going to be different. And I can’t even imagine being in a situation like that. I said a few minutes ago, like, oh, I feel like if I got pregnant, that I, you know, for the most part, I would be fine. And I still stand by that. But I would need a lot of help. I would need a lot of help. Hopefully there would be a partner, but if there wasn’t, then with my parents, because my parents already have to step in with me a lot of times. And and I feel like I would even need more to make sure I was. I personally was seeing reality the correct way, if there was a little, another life in my hands.
Gabe Howard: One of the interesting things that I saw when I was reading this research is this idea that mothers with schizophrenia, they don’t have a lot of leeway. One of the things that you just said is that you would need a lot of help. I would really defy you to find a mother on this planet that doesn’t need a lot of help. Now, I understand that if you’re managing any illness, any illness,
Rachel Star Withers: Yes.
Gabe Howard: Not, not mental illness. If you have an illness, then obviously you are going to need more help. That is understood. But do you think that the bar is just significantly lower for women with schizophrenia? That if something happens, if a mistake occurs, if an illness symptom pops up, that it’s like, oh, well, you’re schizophrenic, we’ve got to take your baby? Whereas with other mothers like, oh, well, you just made a mistake. Mistakes are part of parenting. Everybody does. Do you think that that is a factor in some of these stats?
Rachel Star Withers: Absolutely. And I think if someone has some sort of even genetic disorder, very few people are like, oh, you shouldn’t have a child. You shouldn’t be over, you know, another person’s welfare. But when it comes to mental stuff, it’s like, oh, you have depression? Oh, you have bipolar? Oh, you have schizophrenia? Like, no, you shouldn’t be around children. And not even like you shouldn’t be a mother, you shouldn’t be around children. So there is definitely a double standard with that all where anything mental freaks people out.
Gabe Howard: There’s just so much stigma, discrimination and misinformation that it makes it very difficult. And it’s interesting because, you know, Rachel, I love you and I think the world of you, but I know what it’s like to be sick. And I can’t imagine having to care for a baby. And I can’t imagine you caring for a baby when you’re that sick. And part of me is like, oh, geez, I don’t know. Maybe that’s not a good idea. But my mom broke her wrist when she had three children. She was not doing well that six weeks. My father lost his job when we were younger. Well, that’s not a good idea either. I just I think of all of the adversity that my family faced growing up. But everybody was like, hey, band together, work it out. You can do it. Nobody said, oh, yeah, this is proof that people named Gary Howard shouldn’t be fathers. Oh, this is proof that people named Susan Howard just can’t hack motherhood. We just got through it as a family and a community. And I think that more often than not, women with schizophrenia, they just don’t get those benefits. And I think it’s worth pointing out, because it is another layer that makes it very difficult for women with schizophrenia to lead the lives that they would like.
Rachel Star Withers: And I did want to put a little note on this. Over and over, I could find so much info about women having children as far as schizophrenia, like pros, cons, mostly cons and just lots of people with opinions. And yet next to nothing about men with schizophrenia being fathers. Nothing. Really, there was nothing at all. Just that’s interesting, like how society, we view people with mental disorders having families. Like it was just kind of like women obviously, yeah, they’re gonna deal with this, but not men.
Gabe Howard: That is incredible and obviously something that we’ll discuss more next month on men with schizophrenia. Rachel, shifting gears from motherhood, we have to talk about the aging process. What’s the difference between men and women with schizophrenia as we get older?
Rachel Star Withers: This is fascinating. We talked about earlier age of onset, about women tend to get schizophrenia later. Another thing, though, is that women can have a second peak of schizophrenia is what they call it. And it’s usually women age 45 to 50 who have not been previously diagnosed with schizophrenia. It suddenly comes on and it has to do with the pre-menopausal stage hitting. And they think because the estrogen drops, there’s something about estrogen that keeps schizophrenia more in control. And harkening back to what we talked about earlier with periods and estrogen dropping. But men don’t have this. There is no second part of life where suddenly a man who hasn’t had schizophrenia will develop it in his 50s, 60s. It’s just not seen. In fact, men with schizophrenia as they age tend to get more of a handle on it. And women, it’s the opposite because you have for some women, suddenly schizophrenia develops. And there’s a lot about that. I was wondering when I looked at the different research, did these women already have schizophrenia? But maybe because they were so social, it just wasn’t recognizable? Or did it really just come on at that moment? And there is no answer for that. But I did think it was very interesting and something that if you’ve already been diagnosed with schizophrenia to look out for. That it could get a lot worse hitting around age forty five if you’re a woman. So, you know, I got a little over 10 years there. Clock’s ticking for the second round of fun.
Gabe Howard: And it’s something else that women have to be aware of that may or may not be as researched or as discussed. Oftentimes I think society does forget how much educated guesswork there is in a mental health diagnosis. Schizophrenia is diagnosed by observation. It’s treated by best case practices and research and then more observation. There’s a lot of self-reporting from the person living with schizophrenia. And all of that really allows our culture and our society and our bias to influence the end result. We have to be aware of it. While it does sound scary, and it is, I don’t like the idea that men and women get different treatment. Obviously, you don’t like the idea that men and women get different treatment because it kind of sounds like women are getting the short end of the stick. It is what we have now. And for the women listening to this show, this is where advocacy is just so important, along with education. And, Rachel, I’m going to ask you, would you have known any of this information about being a woman living with schizophrenia if it wasn’t for your job? Do you feel more educated and more empowered today than you did before the research for this show? And what advice do you have for women living with schizophrenia to make sure that they get the best care, taking into account the fact that they’re women?
Rachel Star Withers: I would not have known a lot of the things we’ve talked about today, but especially the way estrogen is thought to affect schizophrenia. None of that’s ever been brought up to me. No doctors ever said anything. Like I said, I’m in my mid 30s and you would think maybe, hey, just so you know, Rachel, you know, women with schizophrenia, it could get a lot worse here in the next few years. None of that’s ever been said to me. And it makes me realize how important it is to do your own research. And I’m not saying to diagnose yourself. I’m saying to really know and research what could be on the horizon, especially with the pregnancy and things like that. I’m like, okay, well, I don’t plan on having kids. So why would I ever like research or look into all that? But then that’s what led me to finding out about all of this, which led to the menopause thing. And again, it’s just not something you normally see on any of the little pamphlets in the doctor’s office or brought up at any therapist meeting.
Gabe Howard: Rachel, were you surprised to find out just how separated physical health and mental health is? Because it just seems to me like before we started the research for this show that it never occurred to really anybody that your physical health would drive your mental health outcomes. And while this is a chronic problem, just across the board in mental health advocacy, specifically for schizophrenia. The fact that what’s going on with your physical body has been so far removed from your schizophrenia treatment, how does that make you feel?
Rachel Star Withers: Last episode we talked about the, quote, co-morbidity and then to go in to seeing just how the hormones. They do, everything affects your schizophrenia. And it’s all connected. And yeah, having a hard time. Mental health affects your physical and vice versa. Something else that we as people with mental disorders do need to be aware of and to kind of not be so hard on ourselves. As I’ve done research and just kind of learned about different statistics, a lot of things are normal that I just didn’t realize were. It’s like, hey, it’s OK that I have this issue. It’s not that I’m being super unhealthy. A lot of women or a lot of people with schizophrenia also struggle with this. It’s good and bad. Let’s go with that. It’s good and bad, Gabe.
Gabe Howard: Rachel, thank you so much for your candor. Now, you had the opportunity to talk to Dr. Hayden Finch, who is a Ph.D. and a researcher and understands schizophrenia from the clinical perspective. And you got to ask her a lot of questions about, well, really the differences between men and women and specifically what it’s like to be a woman and getting treatment with schizophrenia. It’s a great interview. And we’re gonna go ahead and play that right now.
Rachel Star Withers: Our guest today is Dr. Hayden Finch, a psychologist from Iowa. Thank you so much for being with us today.
Dr. Hayden Finch: I’m so happy to be here. Thank you for the opportunity.
Rachel Star Withers: Our episode today, we’re focusing on women who have schizophrenia, specifically as a psychologist, what issues have you seen that women with schizophrenia tend to seek help with?
Dr. Hayden Finch: Well, women, interestingly, tend to have more emotional symptoms with their schizophrenia than men do, so often they’re coming to treatment for things like relieving anxiety and depression. We see that more in women than in men. And then they also have, you know, a lot of trauma. They tend to be victimized quite a lot in their lives. And so that’s often a focus of treatment. And then lots of things related to family planning and relationships.
Rachel Star Withers: Women with schizophrenia across the board tend to be more social than men who have schizophrenia. Why do you think that is?
Dr. Hayden Finch: So symptoms of schizophrenia are divided into positive symptoms and negative symptoms and positive symptoms don’t mean good, they just mean that something is there that shouldn’t be there. So, for example, hallucinations or delusions, whereas negative symptoms are things that aren’t, there should be a lack of motivation or lack of facial expressions. So, men tend to have more negative symptoms than women do. So they have a lack of social drive and a lack of social interest, whereas women don’t tend to have those symptoms as much, but also women, their onset of the illness tends to be a few years later than men. So they have a bit more opportunity to develop their personality and their social skills in their 20s, and that will protect their social skills through the rest of their lives.
Rachel Star Withers: Talking about the positive symptoms you just brought up. Do women tend to have a different type of hallucination than men experience?
Dr. Hayden Finch: Not necessarily. We see the same types of hallucinations and delusions. Sometimes with women, the content will be a little bit different and it will focus on their children a little bit more or safety a little bit more. But often they’re very similar in type, though just the content can vary a little bit.
Rachel Star Withers: What are the biggest challenges for a woman with schizophrenia who is pregnant?
Dr. Hayden Finch: The most obvious one has to do with medication. So a lot of women with or without schizophrenia will stop taking most medications while they’re pregnant just to air on the side of safety. And so when it comes to a woman with schizophrenia who gets pregnant, a lot of them will discontinue their medications for the same concerns about potential effects on the fetus. And sometimes those concerns are coming from the woman herself, sometimes from her family, sometimes even from her doctor. But stopping medications during pregnancy for women with schizophrenia increases the risk for relapse. So I think about sixty five percent of women with schizophrenia who don’t stay on their medication during pregnancy will relapse during their pregnancy. So then they have more problems with their mental health during pregnancy. So most women who don’t have schizophrenia don’t report major changes in their mental health during pregnancy. But women with schizophrenia do, in part, again, because of that medication thing. But then psychosis during pregnancy can affect seeking prenatal care, not recognizing signs of labor or problems during the pregnancy. They might not even recognize that they’re pregnant. There can be lots of negative consequences on the pregnancy and on the fetus when psychosis develops.
Rachel Star Withers: So I am a woman with schizophrenia.
Dr. Hayden Finch: Right.
Rachel Star Withers: Let’s say that I found out that I’m pregnant. What would you suggest being my next steps?
Dr. Hayden Finch: It’s a situation where you need to talk to your doctor, especially the psychiatrist, about what medications are safest during pregnancy. We do have some information about medications, antipsychotics even, that are relatively safe during pregnancy. But it’s a balance between protecting yourself and your mental health and the secondary effect that has on the baby. It’s a really difficult balance. It’s an individual decision. And it really depends on the particular woman, her health, her history, her symptoms and all of that. That’s a very difficult decision to make with respect to medications.
Rachel Star Withers: What are the biggest challenges when it comes to being a mother with schizophrenia?
Dr. Hayden Finch: All moms are overwhelmed, right? So you have that regular level of being overwhelmed with responsibilities. But then on top of that, you’re trying to manage your own mental health. So you’re trying to get organized with post-natal checkups and pediatrician appointments, plus your own medical appointments and mental health appointments. They often don’t have as much support as women without schizophrenia. So there aren’t as many family members to lean on for emergency child care. They don’t have those extra hands when they just need a break. They also symptomatically can have more difficulty reading the cues that the baby is giving them so they might misinterpret what the baby is needing or wanting. And that can interfere with the relationship that they develop with the baby. And a lot of women with schizophrenia during that postpartum phase will have a pretty significant exacerbation and symptoms. And a lot of women are at risk for postpartum depression. But women with schizophrenia, especially those women who weren’t taking their medication during pregnancy, are at especially high risk. And that can increase the need for hospitalization. But a lot of women then won’t seek hospitalization really truthfully because the majority of women with schizophrenia lose custody of their children.
Rachel Star Withers: In my research, I found that so many of the women who have children who have schizophrenia also are single mothers and do very often lose custody due to either not being able to afford to provide for that child because the mother herself is having a hard time working and being able to provide, or having to be hospitalized. What would you say like if you have someone coming to you who’s in that situation?
Dr. Hayden Finch: The biggest thing I think, is asking for help before there is a problem. So if you’re noticing that your symptoms are making it hard for you to care for the baby, if you’re getting extremely overwhelmed with caring for a baby or even a child, it’s important to ask for help before a problem comes up. Those are the women who have the greatest likelihood of being able to maintain custody versus waiting until there is a major problem, when the child has been neglected or even abused. Then it’s very difficult to make an argument to maintain custody. It’s a situation where we definitely want to prevent problems rather than try to correct problems.
Rachel Star Withers: And most women, if they have a family and they’re going through treatment, like you’re just trying to juggle everything. And
Dr. Hayden Finch: Oh, absoluttely.
Rachel Star Withers: Everybody who has kids and whatnot are just constantly trying to juggle their lives. With the schizophrenia added, what advice do you have for women?
Dr. Hayden Finch: The biggest thing we can all do, really, but especially women with schizophrenia or women who are involved in the mental health system, is to find out exactly what services are available in your area. So you can call 211, which is a public line where they’ll connect you with services in your area. That you can be looking for things like housing for mothers and their children, family Services support groups for parents with mental illness, respite care for when you really need a break. There are specialized clinical services for parents with mental illness. There are in-home services where a provider will come in your home and help you learn parenting skills or learn how to interpret what the children are needing. Even transportation services can be a big help for people who are trying to juggle it all. That’s one thing is is making sure that you know what services are available and you take advantage of them, but also to the extent you can, I think it’s helpful to integrate your family into the treatment. So look for providers who are willing to work with you and your child because there are a lot of opportunities for skill development there. Or invite your parents or your partner to therapy and work on communication. There are opportunities for integrating it so that you don’t have quite so much to juggle and you can actually build skills to make it easier to juggle all of it.
Rachel Star Withers: Something that surprised me, and it seems to me someone should have said it to me long before now, but with schizophrenia in women, a lot of women don’t tend to get schizophrenia until they hit menopause . O they already
Dr. Hayden Finch: Right.
Rachel Star Withers: Have it and it gets a whole lot worse come menopause time. I had no idea. But what advice do you have? I mean, if I’m, if I’ve already hit that age range and I haven’t had schizophrenia yet, that’s a lot to suddenly hit you. What is your advice for seeking help at that point?
Dr. Hayden Finch: You think that sort of in the back half of your life, you kind of figured it out, you’re kind of coasting for the rest of it. And things should be easy from here on out. And to get hit with something like schizophrenia around menopause is, yeah, that’s a blow. We’re still doing research on exactly what causes that in women and what causes, first of all, the later age of onset in the beginning, and then that second risk time around menopause. But we think it has something to do with maybe estrogen. So one thing you can do is talk to your doctor about any medical treatments that could be available to address it or protect it from getting worse. But certainly seeking mental health treatment is the most important thing to do. Go ahead and get involved in treatment, learn how to cope with the symptoms, medicate them if that’s something that is valuable to you and effective and fits with your personal ethic and then learn skills to protect the great life you’ve already built for yourself. The good thing, if there is a good thing about psychosis after menopause, is that those women have had their whole lives to develop good relationships, good social skills, good occupational skills, and that is helpful in going through the illness at that time in life. You’ve got a lot of good skills that are automatic and that keeps the illness from being quite as devastating as it can be earlier in life.
Rachel Star Withers: Some women have had issues with doctors not taking it seriously where they’re just kind of like, oh, okay, well, that’s just your hormones,
Dr. Hayden Finch: Mm-hmm.
Rachel Star Withers: That’s just this time of life. You know, kind of brushing off very serious symptoms. What would you tell someone who’s kind of having that issue? They’re worried it’s something more.
Dr. Hayden Finch: Definitely be assertive. Talk to your doctor. More than once if you feel like they’re not getting it. If you feel like they’re not really hearing you, go get a second opinion. If that’s needed. Be assertive in some ways. We need to sort of trust doctors and if they’re telling us it’s no big deal, we sort of need to listen to that. But also in your gut, if that’s not right to you, then be assertive. Seek a second opinion. Bring it up two or three times. If multiple doctors are giving you the same opinion, then that can be telling that you might sort of be making something out of nothing. But if your gut is telling you that there’s something missing that they’re not really listening to you, then be assertive or get another doctor.
Rachel Star Withers: Across the board, it’s always said that women get diagnosed for schizophrenia, usually many years later than men. Do you think that just something with, like you said, the estrogen or is it more that women tend to mature faster and it might not be as noticeable?
Dr. Hayden Finch: So women are diagnosed later in life than men are. So, men are diagnosed usually in late teens or early 20s, whereas women are diagnosed more mid to late twenties. And that is just part of how the illness develops differently across men and women. We think that might have something to do with estrogen protecting women from the symptoms a little bit more. Whereas men don’t have that. But that’s still being researched and we’re still trying to understand that. So women are diagnosed a little bit later than men. But like I said, that’s just a consequence of the illness. But when they’re diagnosed, they tend to be diagnosed more quickly, meaning that men will have untreated psychosis longer than women do. So once women start showing symptoms, they tend to get diagnosed more quickly than men do.
Rachel Star Withers: Well thank you so much for talking with us today. And you actually have a book coming out soon, don’t you, Dr. Finch?
Dr. Hayden Finch: I do. I just wrote a book in part because a lot of the information that we’re seeing on the Internet is either incorrect or it’s so complicated you can’t understand it. So I wrote a book giving you all the details, everything you need to know about schizophrenia. And I tried to write it in the plainest language possible. So it’s super understandable. But I talk about everything from what schizophrenia is, what the symptoms are, how it relates to schizoaffective disorder and all of the other similar disorders. We talk about violence. I’ll talk about brain stuff. What parts of the brain are affected and what’s different about a schizophrenia brain versus the average brain? And of course, talking about treatment, a lot of the things we talked about today were kind of downers, were about problems, but schizophrenia is treatable. And I do believe that people can recover from schizophrenia. So I talk about what recovery means, what that looks like and how to get there in the book as well. So it’s called The Beginner’s Guide to Understanding Schizophrenia. It will be available as an electronic book on Amazon. And so I will have the link to that in the show notes and also on my Web site at HaydenFinch.com/SchizophreniaBook.
Rachel Star Withers: Awesome, we’re definitely gonna have to check that out. That sounds exactly like the kind of stuff we talk about here on our podcast, Inside Schizophrenia.
Dr. Hayden Finch: Yeah, absolutely.
Rachel Star Withers: And as a schizophrenic, I guess I would love to read some of that and especially in the easier to understand language.
Dr. Hayden Finch: Yeah, it’s even the stuff that’s written for people with schizophrenia or their families, sometimes then they won’t give you all the technical details that you want. So I’ve tried to kind of strike that balance that you get all the details, you feel like you really know the science. But in a way that’s relatively easy to understand.
Rachel Star Withers: Awesome. Thank you so much for joining us here today and shedding some light on this topic.
Dr. Hayden Finch: Thanks for having me.
Gabe Howard: Rachel, that was incredible, what were your takeaways from that interview?
Rachel Star Withers: I love talking with her. I love how knowledgeable she was. I like that she stressed how important it was for women to speak up and to make sure the doctors are hearing them and taking them seriously about things. And she even mentioned, yeah, and if one is not listening, you may need to go talk to a different one.
Gabe Howard: I completely agree. Self-Advocacy is a thing in all of health care and it’s really a thing in mental health care. And I think a major takeaway from this episode really needs to be ask questions. Because it really seems like doctors aren’t bringing up some of the physical health components of schizophrenia. And I think that’s of vital importance.
Rachel Star Withers: And seriously, ladies, take this to heart, talk to your psychiatrist. Let them know, you know, if you are having any issues with hormonal type things with your periods. Talk to them if you’re planning on getting pregnant or even if that’s just something that you know, hey, I want to talk about like future. What does that mean? Will I have to go off my medication? Would I need to do it, let’s say, a few months before? Like speak up about these types of things. For me, it’s interesting because we talked about co-morbidities last time and how important the physical doctors are and we really didn’t even mention gynecologists. But yes, gynecologists are a major part of women’s health and making sure that psychiatrists and our gynecologist are on the same page. Next time, we’re gonna be exploring how schizophrenia affects men. So we’re gonna be hitting on how symptoms affect men differently. And also testosterone. So that will be happening. And we will have Dr. Hayden Finch returning to talk to us more about the clinical side of the gentlemen. So join us next month on Inside Schizophrenia. I’m your host, Rachel Star Withers here with Gabe Howard. And you’ve been listening to a Psych Central podcast. Please like, share, subscribe with all of your friends, family, loved ones, the women in your life with schizophrenia. Thank you so much.
Gabe Howard: And we will see you next month.
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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Withers, R. (2020). Inside Schizophrenia: Schizophrenia in Women. Psych Central. Retrieved on July 7, 2020, from https://psychcentral.com/blog/schizophrenia-in-women/