Why Postpartum Psychosis Needs Our Attention
A Conversation with PSI Postpartum Psychosis Program Manager Julia Alzoubaidi, PhD, PMH-C
Postpartum psychosis (PP) is a serious perinatal mental health disorder and medical emergency that occurs in about 1 to 2 of every 1,000 perinatal individuals – yet it is the least talked about. Why is it so important to have a bigger conversation about this disorder?
It is critical that we amplify this conversation for multiple reasons. First and foremost, no one should lose their life to a disorder that is temporary and treatable; however, tragedy as a result of not recognizing PP occurs too often. It is my understanding that providers have shied away from discussing PP as a real complication of delivery so as not to unnecessarily scare new or soon-to-be parents. However, doing so only stigmatizes PP further, and it precludes families from having potentially life-saving knowledge.
What do you think are the most common misconceptions about PP?
One is that PP only occurs after a live delivery. Like other perinatal mental health disorders, PP can occur after pregnancy loss, termination, or stillbirth. Another is that everyone who has PP will act violently toward their infant or themselves. While the risk of harm is elevated in cases of PP due to the lack of reasoning, not everyone who experiences it has thoughts of harming themselves or others. The stories that most of us hear oftentime involve tragedy, merely because those are the ones media outlets sensationalize.
Psychotic symptoms are not always obvious to others, or even to the person experiencing them. Families may notice that their loved one is acting out of character or behaving in a bizarre way. Will you elaborate on why strange behavior in the postpartum period should never be ignored?
The person experiencing psychosis has little–if any–insight into the fact that they are sick. They do not understand that the hallucinations and/or delusions they are experiencing are not reality, but symptoms of PP. Moreover, they might not have the ability to describe what is wrong, as PP can include difficulty with cognition. In their irrational state, the person might withhold what is happening to them internally, in a misguided attempt to avoid separation from their baby or “protect” others (for example, not telling their partner that they believe the government is spying on them, because doing so would put their partner and infant in danger). Therefore, uncharacteristic or bizarre behavior as observed by others might be the only indication that something is very, very wrong.
In an Emergency/If you suspect Postpartum Psychosis:
- National Maternal Mental Health Hotline: 1-833-852-6262 (1-833-TLC-MAMA)
- National Suicide Prevention Lifeline: Call 988
About 40-50% of those who develop PP have no personal history of mental illness. Can you speak to why it is so important that everyone understands the facts about PP?
PP is a mental health disorder that does not discriminate. While the most understood risk factors include a personal or family history of bipolar disorder or postpartum psychosis, there is much we still don’t know about who gets PP and why. For that reason, it is important that everyone knows what PP can look like and what to do if you think you or a loved one might be experiencing it. The Postpartum Psychosis Discussion Tool is available on PSI’s website, and it describes symptoms from a lived-experience perspective in order to help determine if someone might be experiencing PP. It is not an empirically validated screening tool, and is not meant to be used for diagnostic purposes, but it can be helpful to try to gain understanding. We also created Fact Sheets that list symptoms in a straightforward way, available in English and Spanish.
PSI is launching a new PP training for perinatal professionals at the PSI annual conference in LA this summer. Tell us more – how the training was developed, the audiences it is designed for, and why training is so important.
The training was developed in response to requests from professionals working in the perinatal mental health space who reported wanting more than what currently exists. It is designed for any medical provider, mental health professional, or volunteer with an interest in learning more about Postpartum Psychosis (i.e., mental health practitioners, social workers, therapists, psychotherapists, psychologists, psychiatrists, nurse practitioners, physician assistants, doulas, physicians, lactation consultants, nurses, and midwives, etc.). Training is so important because PP can be very difficult to identify and differentiate from other perinatal mental health disorders; however, doing so effectively could mean the difference between life and death for certain birthing individuals and their babies.
We no longer describe PP as rare. Can you explain why this is?
Language is extremely powerful, and how we describe something affects the way it is viewed. Calling PP rare inadvertently casts it aside as a potential experience, and it stigmatizes those who are affected. Many survivors report being completely caught off-guard by their experience of PP, even those with multiple risk factors. Some were aware of the possibility before or during pregnancy, but most warnings were brushed off by family members unaware of the disorder, or by health care providers themselves. Fellow advocates, including PSI as an organization, want to make sure that neither the risk for nor the experience of PP is minimized. It can be helpful to compare PP to other medical conditions with a similar prevalence rate, but that do not carry as much stigma or shame. We created a new infographic to help emphasize the point.
Experts are seeking to add postpartum psychosis as a distinct category within the DSM-5. How would this affect psychiatric care for postpartum patients?
I believe that a distinct DSM diagnosis of postpartum psychosis would have a profoundly positive impact on patients’ access to appropriate care, primarily through accurate identification. Postpartum psychosis still lacks a distinct diagnostic category in the Diagnostic and Statistical Manual. To quote the Postpartum Psychosis Expert Panel, “This matter is urgent; deferring formal recognition risks ongoing clinical and public health consequences. The absence of a clear diagnostic category continues to contribute to significant risks, including morbidity, mortality, and adverse legal outcomes.” I have heard many, many stories of fellow advocates–while in acute psychosis–being turned away from immediate care. It is then that tragedy can and does ensue. A DSM diagnosis of postpartum psychosis would increase its salience amongst the providers who interact with postpartum patients. In addition, it would provide a clearer international agreement about how we define the disorder. Last, having a distinct diagnosis would provide patients and their loved ones with a clearer understanding of what is happening to them, and an understanding that with appropriate treatment, they will get better.
PSI’s Postpartum Psychosis Task Force works to support those affected by postpartum psychosis through advocacy, education, and community-building. What does this work look like?
The Postpartum Psychosis Task Force consists of over 50 members from all over the world. We are individuals with lived experience of PP and allied professionals in various settings. Together, we have created various resources for individuals and family members, including PSI’s Postpartum Psychosis Discussion Tool, awareness campaigns (#PPlookslikeme), and PSI blog content.
What else would you like to share about PP?
While PP is life-changing, it does not need to define you, your loved one, or your parenting journey. It is a complication of delivery, and not a sign of weakness or an indicator of parenting ability. You can have PP and still be a really, really good parent!
Resources:
Friedman, S.H., Reed, E. & Ross, N.E. (2023). Postpartum Psychosis. Current Psychiatry Reports, 25, 65–72. doi: 10.1007/s11920-022-01406-4
VanderKruik, R., Barrei M., Chou, D., Allen, T., Say, L. Cohen, L.S., and on behalf of the Maternal Morbidity Working Group. (2017) The global prevalence of postpartum psychosis: a systematic review. BMC Psychiatry, 17,272. doi: 10.1186/s12888-017-1427-7
About the Author
Julia Alzoubaidi, PhD, PMH-C
Julia is PSI’s Postpartum Psychosis Program Manager and Task Force Coordinator. She is a licensed psychologist who worked with children and adolescents up until her firstborn was six months old, when she experienced postpartum psychosis. As part of her healing process, she began volunteering with PSI in various capacities, including facilitating support groups and co-leading a local Climb event. Her involvement evolved into managing PSI’s Postpartum Psychosis Program and coordinating PSI’s Postpartum Psychosis Task Force. She lives in the Chicago suburbs with her husband and two children.
Interview conducted by Postpartum Support International’s Samantha Reaves, MA, PMH-C.
Explore these PSI Resources:
Help for Perinatal/Postpartum Psychosis
Connect with a Postpartum Psychosis Specialized Coordinator
Pregnancy and Postpartum Psychosis Support for Survivors (Moms and Birthing People)
Support For Families Touched by Postpartum Psychosis (PP)
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