Hello all, I just wanted to introduce myself to the group. I'm a 20 year survivor of postpartum psychosis in the USA. I found this group through Postpartum Support International and I'm so glad I did. I have never actually spoken to another survivor of PP until I got here, just because I've never met one. Just from having glanced at your group and the APP website, I think you have a great resource here and one that was never available to me in the US.
I had cycles of depression my entire life and after my first child I got postpartum depression. I waited a long time to get help because I didn't have very many options available to me in the small rural town where we lived. Eventually I went to my primary care doctor and he gave me an antidepressant. When I got pregnant with my second child, I told my OB/GYN that I had this history and it would probably happen again. He said, no problem, if you start feeling depressed just call me and I'll prescribe you something. The birth went well but a few days later I felt myself crashing and I called him. He put me on a low dose of fluoxetine. I felt better for a while but after a few months started feeling down again and developing other symptoms like restlessness and paranoia. The baby wasn't sleeping well so I was up a lot at night. As the months went on, things just got worse and worse. I was afraid of aliens lurking in my house and outside. I couldn't concentrate, couldn't sleep, and was getting intrusive thoughts to harm myself. After a while I started doing it. Keep in mind that in 2002, the internet was not what it is today. I hadn't ever seen or spoken with anyone who was self-harming, or even read about it online. Social media feeds as we know them today didn't exist. I had email and I could look up some information online but there wasn't a great deal available. So I started self harming and could not explain why. I became very suicidal.
After the baby stopped nursing at ten months old, it was like a light switch had flipped. I started actively hallucinating and became catatonic. My husband panicked and took me to the hospital. I was hospitalized for about 19 days. The nurses thought I had postpartum psychosis, but the doctors didn't think so because almost all the scientific literature says that PP happens within a few weeks of the birth. I was too old to be having an onset of schizophrenia and had never had a single episode of hallucinations prior to that point. They told my husband maybe it was depression with psychosis. They called it schizo-affective disorder, bipolar type 2, put me on about a million medications and sent me home.
Long story short, I have spent the last 20 years dealing with medications, side effects, and a huge struggle to live life. I was very unstable in the early years and hospitalized a number of times. I gained 100 pounds and a lot of health problems came on because of obesity. I had never been overweight before taking antipsychotics. Over the years I tried to diet, I tried to lose weight, I tried to get off the meds, but every time I would try, I would get symptoms and was told to take them again. About two years ago, the health issues were getting so bad I started to make serious attempts to lose weight. A new psychiatrist and therapist suggested I could try again to get off the meds. After a tapering period of months I did it, and then.... ta da! No more psychotic symptoms. No more intrusive thoughts. Gone. I did this by cutting down the meds very, very gradually and by just a few milligrams at a time. I also began eating much healthier and exercising every day. I found a great fitness program that has helped me get strong again. I've lost 50 pounds.
It took me forever to get to this point, but I'm doing great now. I'm the happiest I've ever been. I used to lie in bed at night thinking my life was over, and I was in terrible physical pain. Now I'm out, and active, I'm healthier, I feel better, and I can do more. I have new friends, I'm doing things I haven't done in years, and I'm looking forward to trying some new things. As for postpartum psychosis, I now think that that was what I had, not schizo-affective disorder, because that doesn't usually just go away. It is my belief that it was actually medication withdrawal that was causing the symptoms everyone interpreted as being a psychiatric disorder. I DID need the meds for years, but I think there was some point at which I could've gotten off, and was told not to, because I was misdiagnosed. There's a reason for this, which is that I think PP is still very poorly understood. It's very under-researched compared to other disorders because it's so rare. My lived experience here in the US has been that almost none of the many, many providers I've seen over the years had had another patient with PP. I've told them my story and I think they've learned from it. My goal now is to try to do what I can about that. Find research projects if I can and see if I can add to them. Reach out to women who have experienced this. Help educate providers. I lost my teaching career when I became ill but I still love teaching. So that's what I hope to do - learn as much as I can, and then teach others, from the point of view of someone who has LIVED it.
For all of you, I just want to say there is hope! If I can do this with virtually no resources, so can you! It may take a long time to get where you want to be, but there is a light at the end of the tunnel. You are not alone. I hope to read all of your stories and hear more about you here.
Thanks for reading and happy holidays to you all. May 2024 be a BETTER year for all of you. We stand together in our strength!
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Has anyone else lost their child because of their postpartum psychosis?
