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Kay's Story

All my life, I had experienced episodes of depression, and I had postpartum depression after my first child. When I got pregnant with my second, I told my OB/GYN that I thought it would likely happen again. "No problem," he said. "Just call me if you experience any mood changes, and I'll call you in a prescription. We do it all the time." My daughter's birth went as well as could be expected, but several days afterward, I could feel my mood crashing, and true to the doctor's word, I was given a low dose of Prozac and told I could continue nursing.  


Prozac did help my mood, and for a couple months, I did well. About three months after the birth, though, I felt my mood getting low again, and then other, stranger things started to happen. My husband was often gone in the evenings for activities or away for business, and I began to feel very fearful, especially at night. At first, it seemed like normal anxieties over the baby or people breaking in, but then I started worrying about aliens and sentient beings in the closets. Things like moths trying to get into the screen door started to look like fingers. None of this was normal for me.  


As the fears grew, so did my depression. I started to feel suicidal, and then for some reason I could not explain, I began self-harming. I had never done this in my life. This was 2002, before social media feeds. I didn't have good internet access or even a public library, so I wasn't interacting with anyone else about this. I was seeing a therapist, and neither one of us understood where this was coming from. I tried to find a psychiatrist, but we lived in a small rural area, and I could not get an appointment within six months. I didn't know what to do, so I just kept taking Prozac, taking care of the baby and living my life. I was a teacher, and went back to school in the fall, but I was in bad shape and not improving. I grew more paranoid, more suicidal, and was bent on harming myself much of the time. I never considered harming anyone else; I would've killed myself long before I touched my baby or anyone else.  


Around the time the baby was six or seven months old, my therapist went on vacation and referred me to another clinician in her office. I sat down with the new clinician, and she sent me straight from her couch to a psychiatrist in town who was private pay only, which we could not afford. He diagnosed me as having borderline personality disorder because of the self-harming and told me to increase the Prozac. I saw him a couple times, but I knew he was incorrect, and I wasn't getting any better. A few weeks later, I knew I was about to make a suicide attempt and told my husband. He called the therapist, and she sent me to the ER. They had an inpatient psych unit, but it was full, and they had no beds, so they sent me home. My therapist was furious.  


The one thing that helped me during this time was drawing. Colors and paints and sensory experiences like crafts made sense to me in a way that nothing else did, so I spent a lot of time drawing the things I was seeing and feeling. It was also a way to spend time in a way that took me out of the rumination in my own head. I felt like there were dozens of voices in my head talking to me and shouting at me constantly, to harm myself, to kill myself, to be wary of this and that. Finally, I made a deal with them. We had an upcoming vacation to Disney World scheduled with my extended family. I would get through that, and then I would kill myself. The voices quieted down, and I felt better. 


We returned from our trip, and the next day, which was December 24th, my daughter stopped nursing. I knew she was almost done, but that was the day she quit. I remember nothing about Christmas that year except that. I went through the motions on Christmas Day, and the day after, I was catatonic. The television was talking to me. I was terrified of every sound, every corner, every person. I laid my head down on the table and wouldn't get up. My husband was scared and called the psychiatrist and my therapist. They said, "Take her to the hospital." They admitted me immediately, and I stayed for 18 days. My daughter learned to walk while I was there.  


They weren't sure what was wrong with me because I didn't fit "the literature," which mostly says that postpartum psychosis (PP) happens within a few weeks of birth. I was 35 years old, which they thought was too late for an onset of schizophrenia. They prescribed me enough meds to drug a horse and sent me home.  


I was stable, but not very functional. I struggled with my mood, continuing psychosis (I hadn't even known what I was experiencing was psychosis until I was hospitalized), side effects, and crushing fatigue. I was soon hospitalized again. And again. My original therapist came back from vacation, and she and her colleague soon met with me. The first thing they said was that they wouldn't see me anymore. I was too sick. They weren't qualified. They referred me to a psychologist who was affiliated with the hospital. This psychologist helped me understand the psychosis but didn't see what was happening to me as postpartum related. They assigned me the diagnosis of "schizo-affective disorder" and kept me on many, many medications, including antipsychotics.  


I could not continue my teaching job in my current condition and had to resign, which was devastating because I loved my students and my job and felt like it was the one thing that had kept me going, to some extent. I was somehow able to function at school to a good degree. I never entertained thoughts of harming any of my students, and I loved them all very much, but eventually, I had to concede that it wasn't safe for me to care for a roomful of children when I didn't have a good grip on reality. Resigning was like a death.  


At this point, we had to move, and I was shuffled around to different mental health professionals. I did begin to stabilize more but was constantly in a cycle of trying to tolerate medications, particularly antipsychotics. I had trouble finding care. Some clinicians told me flat out they wouldn't see anyone with schizo-affective disorder. I gained 100 pounds on the medications. I was occasionally hospitalized, usually due to trying to deal with or change the medications. My mood was pretty terrible most of the time.  


As years went by, I did find better combinations, and stabilized more and more. I was always told I had to continue the antipsychotics and could never go off them. My symptoms would come back if I did. In 2022, twenty years after the birth of my child, I began to try to improve my health, which was wrecked from the weight gain and medications. I started working out and managed to lose a little weight. I had a new psychiatrist, and she agreed to let me cut down on the antipsychotics and see if I could get off them because I had been stable for many years. Very, very gradually, I did get off the antipsychotics altogether. It has been almost a year now, and I have not experienced any psychosis at all. I still take a mood stabilizer and an antidepressant. My mood has been perfect.  


I believe now that I did have postpartum psychosis and was misdiagnosed. My father is a retired clinical psychologist who worked on the DSM-2 and the DSM-3 with a specialty of classification of psychotic disorders. He has shared with me some of the research available both then and now on postpartum depression, and there appears to be very little of it. My lived experience is that very few psychiatric clinicians, primary care doctors, OB/GYNS, and anyone else who has ever had a PP patient, understand this disorder. They have nearly all been fascinated with my story.  


I, myself, have never met another survivor. It has been an incredibly lonely and confusing road. I wish I had had information, a support group, or even a single professional who knew what they were looking at. To this day, I do not know if I had true postpartum psychosis or psychotic postpartum depression, but I do believe that I did not have schizo-affective disorder or borderline personality disorder. Even the DSM-5 does not classify PP as a psychiatric disorder. How are physicians supposed to know what this is?  


Fairly recently, I met a group of survivors through the APP network forum in England. These are the first PP survivors I have ever met, and their stories are quite like mine in many ways. Many of them are still struggling years later, not just with symptoms, but with managing horrible side effects of anti-psychotic medications. The struggle is well beyond the 3–6-week period after birth. I don't know at what point I could have come off those medications and lived a normal life. I do know that they wrecked my health six ways to Sunday and caused me to lose my career, among other things.  


I'm quite fortunate that my family and spouse stuck with me, and because of them, I have survived to tell the tale. I've done a lot of writing about my experience and still have my drawings. I had intended to publish a memoir but was told it wouldn't sell because the condition is too rare. I do hope to reach out to other women and clinicians to continue to tell my story and spread some understanding. It saddens me to see that even 21 years later, women are still struggling to be understood and figure out what is happening to them in this incredibly frightening condition. I'm concerned that support is still minimal, and if I could do something to change that, I would.


-Kay

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