New to group and a survivor with encouragement!

[Survivedwithcolor]

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!

[Jenny_at_APP Partner]

Hello Survivedwithcolor,

Thank you so much for sharing some of your story with us, and a big welcome to this community 💜

My name's Jenny, I'm one of the national peer support coordinators at APP. I had PP in 2012 after my first son was born and was lucky to have very good support and admission to a Mother and Baby Unit. Finding APP was such an important part of my recovery, I think making connections with others who really understand is so valuable.

I'm sorry to hear there was so little support and understanding when you experienced PP - what a journey you've been on. It's good to hear how well you're doing now, thank you for sharing that hope with others, as well as your passion to support and educate.

Wishing you a happy festive period, I'm so glad you've found us

Best wishes,

Jenny x

[Emarie2929]

This is such a nice story to read.

I am very happy that you have finally found a happy place after all these years.

Although I never got to the PPP part of the disease I empathize with many of these posts and I love to read about recovery.

[The_Wes_Anderson_Fan Volunteer]

Thank you so much for sharing your story. Thank goodness that you eventually found the new psychiatrist and therapist. I had PP about 20 years ago and always consider myself very lucky to have received a quick diagnosis.I am so pleased that you are now ok. Good luck with spreading the message. Xx

[Pikorua Volunteer]

Hello dear Survivedwithcolour,

yes, I do believe there is a light switch somewhere in order to get out of the dark. It is certainly such a traumatising illness and it can be in particular horrendous for those who are not diagnosed, misdiagnosed, or not receiving appropriate care or even experience "unreasonable behaviour" by members of staff and patients and not getting gynaecological support (after 2 weeks of birth) in the South West in the UK as it was in my case in 2010 ...my experience were like Victorian times. This was the year when APP was founded. I did not find out till 2016 that there was such an amazing org with compassionate members.

Yes, teaching and learning and raising awareness is vital. I do not blame nor do I have anger, it was pure ignorance of individuals, who insured my shoulders or locked me up in isolation most of the time. They did not know what to do in my case for nearly 3 months.

Lived experience is useful, especially when you are a fringe group. I was from mainland EU and started talking in my native language and French, not English when acutely ill

APP is now wonderful and represents people from different backgrounds and cultures. It is such a different experience when you are not English, despite having an intellect. I do not wish anybody to put an individual under one umbrella, we are all authentic with diverse needs.

I used to be a lecturer in higher education, I have BP1 and need to manage my stressors, therefore teaching and learning had to be adapted to my life style and of course choice of activities suiting my needs and abilities nowadays.

I would love to talk to you more in a private chat. Wishing you well and thank you for sharing your story.

Enjoy your festive Season and health and happiness for you. So pleased you found the door to reach the light. xxx

[Survivedwithcolor in reply to Pikorua]

Thank you for your reply. I’m happy to say I was almost always treated with respect during the times I was hospitalized. I have Bipolar 2 and by nature I’ve always been a calm person, and I was never violent or a risk of harming others. I was extremely suicidal and always under suicide precautions but I would never have hurt anyone else. Here in the US, the story of PPP often centers around women killing their children and sometimes the babies are removed from the home simply as a precautionary measure! Every time I hear one of these stories it just breaks my heart. I don’t mean to intimate that you were a risk to others by saying that. I have seen people who were overactive or loudly hallucinating be isolated. I was isolated a few times as a suicide precaution. The whole thing was indeed very traumatic.

I’m informed by the APP researchers that I’m not eligible to participate in their studies, and I assume that I wouldn’t be allowed to participate in the group chat sessions, either. I will have to content myself with reading the stories and replies on this feed, but I will think of all of you just as if we could talk.

[Naomi_at_app Volunteer in reply to Survivedwithcolor]

Hi Survivedwithcolor

I'm sorry to hear that you're not eligible to take part in the UK-based research studies. Were PSI able to advise on any academic work going on in the States on bipolar disorder/PP? If not, do let me know and I can liaise with APP trustee, Professor Ian Jones, who is a world-leading academic in the field and I'm sure will have contacts for where this type work is taking place in the US.

I know that our 1-1 peer support service where you can speak to a volunteer on Zoom, email or phone is very sadly limited to the UK due to our funding.

However, during Maternal Mental Health Awareness Week this year, we collaborated with Cherished Mom and PSI to run the first ever worldwide PP survivor gathering. I'd love to put you in touch with Cherished Mom, as their founder suffered from PPP and I know runs Zoom storytelling sessions for those affected by PPP - as well as a Facebook community cherishedmom.org/digging-de...

I'm so glad you've found us through PSI and now have this opportunity to talk to other families with personal experience of PP. No matter how many years ago we had PP, it's often the most valuable things to just be in community with others who "get it" - and we're so glad to welcome you here! Thank you for sharing your encouragement and your story. Naomi xx

[Pikorua Volunteer]

Take good care and look after yourself! Thank you for sharing.