Ep. 28 – Reality Check – Aaisha Alvi (Author of A Mom Like That)

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Welcome to the Reality Check, Psychosis is Real, So is Recovery podcast. I'm Dr. Ashley Weiss, I'm a child adolescent psychiatrist. And I'm Serena Chaudhry, I'm a clinical social worker.

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And we are the co-founders of Epic NOLA, which is an early psychosis intervention clinic in New Orleans, and also the co-founders of CALM, Clear Answers to Louisiana Mental Health. Hi, welcome to Reality Check. We're here this afternoon with Aisha Alvi.

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She is a postpartum psychosis awareness advocate and the author of the book, A Mom Like That, a memoir of postpartum psychosis. We're really excited to have you here with us today and really appreciate your willingness to come on and have a conversation with us about an issue that is very, very important, but I think a little misunderstood and maybe not talked about enough. Yeah, thank you so much for having me on.

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It's always wonderful to have an opportunity to shed awareness of this condition. So I'm very grateful for the opportunity. So Ashley, who's here with me and I, we, as you, I think now work at the First Episode Psychosis Clinic in New Orleans.

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And just to give you context, when we first started out in our specialty psychiatry clinic, we had another program that was co-located with us called Fourth Trimester. And Fourth Trimester helped women and there was a specific emphasis on postpartum psychosis and we did some collaboration with them. So while we're very familiar with it from a clinical standpoint, can you tell our listeners a little bit more about postpartum psychosis in general and or your experience, whichever way you want to work towards this? OK, so in terms of, I guess I could start off just sharing a little bit about what postpartum psychosis is.

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So postpartum psychosis is one condition on a spectrum of conditions called postpartum mood and anxiety disorders. And on that spectrum includes everything from postpartum depression, it can be postpartum anxiety, postpartum obsessive compulsive disorder. And on the most extreme end is postpartum psychosis.

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And postpartum psychosis is actually really important to know about because it's a life threatening psychiatric and medical condition with a 5% suicide risk and a 4% infanticide risk when it's not treated. And I think people don't know a lot of information about it. And that's why a lot of what happened in my story happened, which was the basic gist of it is that I was dismissed five times, even though I was acutely psychotic and homicidal and suicidal.

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And that's what leads to the risk of tragedy. Yeah. So in terms of my own experience with postpartum psychosis, first of all, it is one of the few psychiatric conditions that is like a life threatening medical emergency.

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And people that have never had any mental health issues can suddenly experience postpartum psychosis, which was what happened to me. I have no preexisting mental health conditions. And I was just suddenly experienced postpartum psychosis both times.

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And they say 50% to two thirds of people that do experience postpartum psychosis have no known risk factors. So for me, like I was like, I got married. And after about five years, my husband and I were ready to start a family.

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I was I had started my career and everything. And I was in a place where I was ready to start a family. And I had always loved children and always envisaged myself having like two or three children.

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And so I was super excited when I got pregnant. I had no preexisting mental health issues. And so I really didn't think I had anything to worry about in that department.

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My pregnancy was pretty smooth. I mean, no pregnancy is perfect, but I thought it went well. And I wasn't really traumatized by anything from it.

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But pretty soon after I gave birth to my daughter, like about a couple of days after I started to feel like super depressed, and then I started to get like experience a lot of anxiety. And in terms of anxiety, I was like, starting to like obsessively worry about if my daughter was getting enough to drink. And, and, like, you know, I worry normal, a normal amount, but this became kind of really obsessively worrying.

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And I couldn't just have the thought that she wasn't getting enough to drink out of my head. And then pretty soon after that, I started developing intrusive thoughts. Because I had no preexisting mental health conditions from before, this really frightened me because intrusive thoughts are, you know, random unwanted thoughts that pop up into your head.

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And I had these mental images that were quite frightening of like, my daughter's head being bashed in or her drowning in the water and things like that. And it terrified me because I had never experienced anything like that. And I still think I know now as a, as a, as an awareness advocate, that intrusive thoughts are very common 90% of parents experience intrusive thoughts in the postpartum period, both moms and dads.

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I didn't know it at that time, but that's all pretty normal for what can happen in the postpartum period. But pretty soon after that, I started to develop some strange beliefs. And just like out of some random benign conversation I was having with my mother, I got it into my head that I started to believe that she and the rest of my family was at risk of acting on the intrusive thoughts in my head.

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So I didn't think that they were having these thoughts. I knew they were in my head, but I started to believe that they were at risk of acting on them. And as we know, when, when you believe like something like a, like a belief that's not true and not grounded in reality, that's a delusion.

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So I started having these, developing these strange beliefs, strange delusions. The first one was that my family was at risk of acting on the violent thoughts in my head. I then started to doubt that my daughter was a baby.

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And I thought that she was an adult pretending to be a baby. And I know that might sound weird, but maybe not to you guys, if you're psychiatrists, but I really did believe that she was just pretending to be a baby. And that was, um, you know, annoying me and frustrating me.

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And then I started to think that maybe she was autistic. And then I started to have these other delusions that my husband was having an affair. And for me, the worst delusion that I had during that first episode of part of psychosis was, um, I started to think that my husband wanted to molest our daughter and I really believed it as totally disgusted and repulsed me.

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And I remember one day while, while he was driving on the highway, I was so upset that I started punching him in the head because I was like, I can't believe you want to do this. And, you know, that's how, that's how strong the belief was in me. Um, all the rest of the beliefs I was having because of all the rest of the beliefs, I wasn't sharing what I was thinking with anybody, but I was definitely behaving bizarrely because of all the things that I believed.

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And because I was behaving bizarrely, my family was like, there's something wrong with you. And they tried to take me to the doctor. And, um, both times that I remember being taken to the doctor, I was essentially told that, you know, motherhood is hard and, you know, it'll get better for you.

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And, um, I was never, I was never screened. I was never treated. I was like, there was no questions even asked.

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I was just kind of sent home, like with a pat on my back. And I believed all these things. And then suddenly, um, I remember my family tried to stage an intervention and I ran away from them and all this kind of stuff.

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And then I was just mad at them. And then there's a period of time of like a one month chunk of time that I have absolutely no memory of. I just remember going to sleep telling my husband, I thought something was wrong with me.

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And I thought he should put me in a mental hospital. And I just remember falling asleep. And all I can say is I remember waking up like a month later and I was completely back to my baseline.

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And I just was, what was, what were those four months about? Why did I think all these strange things? I was kind of embarrassed at my behavior because I remembered some of the things I did. And I just completely went back to my normal baseline. And that was that.

And for, I would say a good four years as I knew something had happened to me, but I didn't have any words to explain what had happened to me. So even though I wanted more children, I was terrified of having more children because I didn't know what that chunk of time in my life was about. And so that was my first experience with postpartum psychosis.

It lasted about four months and then believing all these strange, bizarre things and acting extremely bizarrely. And then just waking up one day back to my normal baseline. Now, I don't blame them because this was about over 20 years ago.

So I think that, okay, maybe, you know, they weren't so attuned to things like postpartum issues and stuff. But the reality of the situation is like five years later, when there was greater awareness of a condition like postpartum psychosis, because of like this hallmark case of Andrea Yates, I experienced even worse care. So if you don't mind pausing there for a second.

So you had the period of psychosis lasted for four months. And when you woke up, as you just described, you fell back to your baseline, so to speak. But you had a felt sense that something awful had happened.

Well, when I came out. Or not necessarily. No, when I came out and returned to my baseline, I was like, why did I think my husband was going to molest our daughter? Why did I think my parents were going to harm my daughter? So yeah, so when I when I came to kind of, you know, I realized that I had, you know, believed all these weird things and behaved bizarrely.

But I just was kind of like, why did I think those things? I don't think those things now. Okay, okay. So you had you were clear that these things that happened and you had done and thought these things, but the why wasn't there? That's right.

Okay, please continue. Thank you for clarifying that for me. Yeah.

So then, you know, I was scared of having more children because I realized something weird had happened to me. And but I didn't have any explanation for it. And I, you know, I dabbled in some research because I was truly befuddled by what had happened to me.

And I came across some information related to postpartum depression. And although all the symptoms of postpartum depression didn't line up for me, I kind of was like, well, I was sad. I was miserable.

I'm sure it doesn't talk about believing strange things and stuff, but maybe that's what I had. And so I kind of chalked it up to maybe I had experienced postpartum depression. And because memories fade and stuff, seeing all my friends have second kids and stuff like that, I wanted to have another baby.

And so we got pregnant again. And this time at about 14 weeks, which was close to four months postpartum, I mean, four months pregnancy, I miscarried. And I learned that I was having a missed miscarriage.

So I found out that I would be miscarrying because my baby had passed on in utero. And so I was told this, and it took about two weeks for my fetus to pass. And in that time, I solidly had come to terms with the fact that I was losing this baby and I had grieved.

I'm a religious person. So I had made sense of it with the help of my faith and stuff like that. And so when the fetus actually passed, I was ready for it to pass.

And I felt normal, like myself, for about four or five days. Then on day six, I suddenly felt like I was super depressed and started to feel a little bit anxious. And I was like, wait, there's only been one time in my life that I felt like this.

And that was right after I gave birth. So I was like, I had that insight to know there's something wrong. So I quickly went to the doctor.

And I told her what was going on. And I said, I'm concerned because I'm so depressed. I feel like I'm in this dark pit.

I can't even raise the corners of my mouth to smile. There's something wrong. And she was like, you just had a miscarriage.

You're grieving. And I was like, no, but I feel like I'm in a good place about this loss. And I don't feel like it's grief.

And she was like, ah, you're grieving. Just kind of go home. And so then things started worsening for me more.

And I started having these repetitive thoughts and things like that. So I went back again. And I was like, no, there's something wrong.

And she was like, no, you're grieving. If you're having ruminating thoughts, you're OK. Things progressively got worse.

I started having developed bizarre thinking. And by bizarre thinking, I mean it was truly bizarre. I felt like my mind was telling me that my daughter needed to die so that she could go to heaven.

And I was like, where is this coming from? I don't agree with that. Why is my mind trying to convince me that my daughter needs to die? So I went back again. And it was saying that I'm experiencing bizarre kind of thoughts and stuff like that.

And I was told that I was having intrusive thoughts and sent home and told to take warm baths and things like that. So I tried doing that. It wasn't working.

I started feeling like the repeating thoughts were turning into a voice telling me disturbing things. So I went back again. And I told them that it sounds like I'm hearing a voice.

And they were basically like, oh, no, it seems like you're depressed, but you're handling yourself well. And so they dismissed me. Things continued to spiral worse.

And by the time I got to the fifth doctor, I was starting to really believe that I was in this apocalyptic battle, in the middle of this battle between God and the devil. And they were both trying to control my body and mind. And it was the devil's voice that I was hearing.

So I went back to the doctor because I was terrified. I was like, this is real. But you know what? I'm so terrified of this reality.

I must need some medication or something to help me because I'm so terrified of what I'm seeing, of what I'm hearing, and all this stuff. So I went back to the doctor. And I tried to tell them that I wanted medication.

And they kind of listened to me. And while I was standing right in the clinic, I heard a voice in my head telling me to stab my daughter to death. And I was absolutely hysterical.

So I was like, just started screaming that they should just inject me with some medication to kind of put me out of my misery of these symptoms and stuff. And the doctors, they thought I was having a panic attack. So they told me to go take a walk out on the street and fill a prescription for some anxiety medications.

And at that point, when I got out onto the streets, I started feeling like what I would later understand to be, I felt like a delusion of influence. And I felt like I was being told and being forced to shove people into the street. I was told and being forced, pushed towards like this pregnant woman I saw.

And it was like the voice was telling me that I should, you know, you know, I'm sorry to be so graphic, but it was telling me to like slice her belly open and take out her baby. And it was like horrendous, the things that I was hearing and the things that I was. And I eventually, you know, went back to the doctor after taking my walk.

And I just basically said, can you please hospitalize me? There's something like not right, like I'm feeling like doing really bad things to people and I don't want bad things. So I want to be hospitalized. But they said that they thought I was having a they said that they thought I was having a panic attack.

And they prescribed me a small dose of an antidepressant and a huge dose of an anti-anxiety medication. And they told me that they thought I was safe to go home. And I went home.

I got a referral to see a psychiatrist, which was a week later. And it was when I went to see that psychiatrist, I have no clue how I managed to keep all my violent. It was just God helping me.

But when I saw the psychiatrist, she was at that point, though, by the time I saw the psychiatrist, I had become somewhat catatonic and I had a new delusion, which was that I couldn't tell the psychiatrist everything that was going on because we didn't share the same fate. So I was a little bit mutish and catatonic also because my depression was so severe. But she still managed to clue in on the fact that something was not really right with me.

And she decided to start me on the tiniest dose of an anti-psychotic medication because she said, I feel like you had like psychotic features to your depression the first time and I want to ward it off the second time. Although she didn't know that I was completely psychotic. Right, right.

So she sent me a home with a small dose of anti-psychotic medication. But she gave me her number. She's amazing.

She gave me her number and I kept calling her obsessively because I was like, Oh my God, this is happening. That's happening. And so she took my medication to 10 times, which she had initially prescribed.

And at that point, my psychosis broke and I started recovering. Wow. Yeah, so that was basically my story in a nutshell.

There's a lot more details into how everything went down and that's why I have a book about it. But yeah, it was very disturbing that even though I went in, I told doctors that I was hearing voices. I told them I was feeling forced to do bad things to other people and wanted to do bad things to myself.

The doctor actually turned around and said, what kind of bad things? And I said, they're evil. And I was still sent home, you know? It blows my mind and it really is just so disappointing. And we've talked about this with other guests on the podcast.

Our training as mental health professionals is inadequate. And I believe I really do see this across the professional silos and spectrums. There's not enough.

People do not understand psychosis, psychosis symptoms and are unable, unwilling, you can choose the way to phrase it, see them when they present in a clinic space. And that's where I believe you telling your story and in the detail that you have here and then obviously in more detail in your book is so essential. Because if our training sessions aren't going, if our trainings aren't going to teach us how to better help people in a position like yours, then the onus, unfortunately, is on us to teach.

Right. And I appreciate your courage in being able to do so. Oh, thank you so much.

And I just appreciate the opportunity. And I'm sorry that I went into a little bit of a graphic detail. To be honest, it was kind of mild as compared to what's in the book.

But I did want to share how bad things got. And regardless of how bad things got, like the ignorance level amongst the providers that I interacted with. And these were all people that should have known better.

Like my psychiatrist said, she said, what more could you have done except self-diagnose yourself? You told them you were hearing voices. That's a hallucination. Told them you felt like you were feeling forced to do bad things.

That's a delusion. And if they can't recognize those simple things, that's really disturbing. Yeah, this is, I mean, it is disturbing.

I lead the medical student curriculum here at Tulane. And I mean, the one takeaway for all of them, this is before they get to clinicals, before they've decided what they want to go into. But in their teaching and even in their testing, postpartum psychosis is a medical emergency.

It's always tested. It's always given a lot of attention because of the severity and the importance of getting someone emergent help. And I tell my students, no matter what kind of doctor you're going to be, you have to recognize this.

And that's just tragic. And I wonder, do you think that there were any reasons in particular with you as an individual that they maybe didn't take you, or that they couldn't actually fathom that you could have psychosis? And I'll say that because we have a lot of young people in our clinic. And we had one person, for instance, who was told that she was too smart to have psychosis and too smart to have schizophrenia, or that she would have another man recently.

He was cognitively too advanced to have a psychotic disorder. And that's coming from a place of not only ignorance, but also stigma and judgment. And I'm wondering if you felt that that was a part of the dismissing of you.

Yeah, so I think that there was a number of layers to why I was dismissed. And I can go into a few of those. One of them is definitely, I think, that they knew what I did for a living, which is not something which you need education and a certain level of education for.

And these were doctors that knew me and knew my baseline. They had interacted, like the people that I went to were the one that was supposed to deliver my baby, my primary care physician, a psychologist I had seen for therapy purposes and stuff like that. So they knew me to be a relatively high-functioning person.

And maybe there was that stigma of like, somebody like this, you know, that. But I think another really important reason why I was dismissed, and I think that that has been a crux of what a lot of my work has now been on was the fact that there is this notion. I don't know if it applies to all types of psychosis, but I know there is this notion in the postpartum mental health community, where they always want to differentiate between postpartum OCD and postpartum psychosis.

And one of the things that they teach, which is so ignorant, sorry for me saying that it's ignorant, but it is ignorant, is that they say, if you're disturbed by your thoughts, you're not psychotic. And that is completely stupid and foolish, because when I went back to look at my notes, it kept saying, patient is disturbed by her thoughts, patient, as if this was proof positive that I was saying, as if that trumped the fact that I'm hearing voices. And this is something that, you know, I've done a lot of work in this area.

And because of the work that I've done, Postpartum Support International has changed the way they teach about postpartum psychosis, because of my book, and because of this information that I shared with them. And I said, literally, people are being harmed because of this. It's almost like people want this easy litmus test to find out if people are psychotic.

And so they want to be able to just say, are you disturbed? Okay, if you're disturbed, you're not psychotic. I mean, if you're disturbed, you can't be psychotic. And the reality is that, you know, psychiatrists need that extra level of education, because it goes beyond whether or not you're disturbed by your thoughts.

I just doesn't even, but the, you know, even just that makes no sense. Because if the outcome, if the most frequent outcome of, you know, the worst case scenario is suicide and homicide, I don't imagine that anyone in that mindset, that's that, like that, that is not that part of that experience is not disturbing. Well, you cannot, you know, it's like, you couldn't, that's just no, but they would, but they, but the tendon, the understanding within this postpartum space has been like, kind of like these moms want to do it.

Oh, my gosh. Yeah. And that's what it implies.

That's, and I was not wanting to do any of the things I felt compelled to do it, forced to do it. And that's why I wanted to harm myself, because I did not want to do these things. That's a big focus of my book is to dispel this notion that just because you're disturbed by your thoughts, is not proof that you're saying you can be disturbed by your thoughts.

It's the content of your hallucinations and delusions that will determine if you're disturbed. Like I was delivering a webinar, which is something that I do now lived experience, insights webinars. And I said, if I've hallucinated a unicorn, I might not be disturbed by what I see.

But if I hallucinate the devil, you can bet I'll be disturbed by it. It's the content that's important. So, you know, so I think the reality of the situation is one of the reasons was that, you know, you know, I appear to be an educated person.

And that doesn't fit what you think of a crazy person to be like, quote, unquote, I'm just using that not as my personal word, but as you know, how people tend to think of things like you can't get this illness if you're smart. The other thing was that I was very much disturbed by my thoughts. And that would to a lot of the doctors was proof that I was saying, and that is a really sad situation.

Because right now, currently through the legal system, the case of Lindsay Clancy, I don't know if you know about her. She's a Boston mother who experienced postpartum psychosis. She took the lives of her three children.

There was a New Yorker article published last year, where Patrick Clancy, her husband said, we were essentially told that because she was disturbed by her thoughts, there was nothing to fear. She was not a danger. That is just tragic.

Yes. And that is what's at the bottom of a lot of these things that it's people's overwhelming need to simplify a complicated illness that is resulting in these in people being turned away. And that's why I was turned away because I read my medical notes.

And then after I sat through some trainings on perinatal mood and anxiety disorders, I kept hearing this come up. Oh, women with postpartum OCD. This distinction of like egocentronic, ego.

I hate that. I just want to get rid of that. So yeah, was that I went back to my own psychiatrist and I said, what do you think about this? And she said, you know, frankly, I could not care if you care less if you're disturbed or not disturbed by your thoughts.

I care if you're hallucinating or delusional. Right. And that's the reality of the situation.