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Calling PPP "rare" sends the wrong message.

Calling PPP “Rare” Sends the Wrong Message

Written by Teresa Twomey 

With editing assistance from Michelle Sweeney, Dr. Olivia Scalf Wedel, Cheri Wissmann, and Kristina Dulaney.

As we stood in line to board the airplane, the little girl behind me said that she was scared. She had never flown before and was afraid of the plane crashing.

“Don’t worry,” I said; “Airplane crashes are really rare.” 

After a beat, the girl’s grandmother asked if she felt better. The girl nodded, but I could still see the fear in her eyes. 

She may have been too young to get the coded message I sent by using the word rare: 

“Not this plane. Not you.”

When we use the word “rare” when talking about pregnancy and postpartum psychosis (PPP), we send that same message: 

“Yes, PPP happens; but don’t worry, it won’t happen to YOU.” 

Unfortunately, this message is the opposite of the one that we, as survivor-advocates, are trying to send:

PPP can happen to ANYONE who becomes pregnant or gives birth. 

Why is it so important to shift our awareness messages away from “rare” and “it won’t happen to you”?

We do not yet know what causes PPP.  We do know that we do not have any categories of pregnant or postpartum women who we can safely say are at “no risk.”

Yes, we know some are at greater risk, but none have NO risk.

That is why we send the message of “any woman.”

I can imagine objections along the lines of:

“We don’t want to be alarmist.”  (See Teresa’s post published by Postpartum Progress: The Big Bad Wolf of Postpartum Mood Disorders)

“But it is rare.” (See other posts on this site: Rare is Relative and Rare is Redundant.)

“Is one word really that important?”

Yes, it is.

Words matter.

Sending the message “don’t worry” and “not you” encourages those preparing to welcome a new baby to do nothing. But preparation is key to improving outcomes and preventing tragedies.

There are five reasons that all pregnant individuals and their loved ones should be able to recognize the signs and symptoms of pregnancy and postpartum psychosis.

Reason 1: PPP Symptoms Wax and Wane

The waxing and waning nature of psychosis symptoms can provide windows of opportunity for a woman to seek help. This help-seeking is more likely to be effective if she can recognize the symptoms, know that they are temporary and treatable, and know the resources for getting help.

Reason 2: Loved Ones Are the First Line of Defense

Those supporting a birthing parent and their baby are often the first to recognize the changes in behavior that indicate PPP.

When educated about PPP ahead of time, they are better equipped to ask direct questions that can reveal the presence of dangerous false beliefs or hallucinations. 

When these educated loved ones interact with dismissive care providers – something that is sadly a part of many survivor stories – they will be better able to advocate for immediate, emergency care.

And while seeking treatment, they will avoid unnecessary risks, and understand the need to ensure safety through constant supervision of both mother and baby.

Reason 3: Paranoia Can Be a Barrier to Effective Care

Paranoia is a common feature of PPP. The types of false beliefs that cause paranoia might sound like: believing that someone wants to take your child away, being suddenly convinced that your spouse hates you, or feeling sure that someone is “out to get you.”

Someone suffering from PPP may be likely to perceive that those trying to help are actually trying to cause harm. When faced with a situation of people trying to control her, and particularly trying to get her to accept hospitalization or to take medication, there is a good chance that her paranoia will feed resistance.

Delusions, false beliefs and paranoia are very frustrating for loved ones to respond to, and can create tension and conflict. Unfortunately, for the person experiencing psychosis, this tension provides greater “evidence” that the delusions are reality, and their paranoia is justified.

Loved ones and support people who understand that PPP is driving this resistance may be more likely to respond with empathy and understanding. This could lead to greater cooperation in seeking care.  Educated loved ones will also understand that moments of insight are possible, but that psychosis symptoms can take over again without warning. And that when this happens, the victim of PPP is at the mercy of her illness. 

Reason 4: Psychosis Can Cause Violent Behavior

Those who are aren’t educated on PPP frequently do not believe that their loved one, whom they know as sane and loving, could suddenly become dangerous to herself or others due to psychosis.

Even when they see clear signs of disorganized thoughts, false beliefs, and hallucinations, they may fail to seek care urgently, or to understand how necessary it is to provide constant supervision.

Families sometimes think that a woman who loves their child would not harm them, but this is false. Sometimes a woman’s delusions can convince her that the most loving thing to do is to end her child’s life.

Education and awareness are the best defense we have to prevent tragedies and loss of life due to psychosis.

Reason 5: Psychosis Symptoms are an Emergency During Pregnancy and Postpartum

PPP can come on fast and severe, and psychosis symptoms arise when families are already struggling to provide constant care to their new babies. This leaves new parents, and those supporting them, little to no time to “get up to speed” once psychosis symptoms are present.

Taking a “wait and see” attitude about psychosis symptoms in pregnancy and postpartum can have devastating consequences. It’s imperative that new parents, and anyone supporting them, understand that psychosis symptoms are a medical emergency.

The importance of raising awareness and educating women and expectant families about this illness cannot be overstated.

It is one of the key components to avoiding the multitude of harms this illness can cause. There is simply no compelling reason to send a message to discourage  families from getting the information they may need.

So please, stop calling it “rare.”

11 thoughts on “Calling PPP “Rare” Sends the Wrong Message”

    1. I am so sorry for your loss 💔😢
      I also did not know the symptoms of PPP. I lost my granddaughter 12/30/2022. Now I am losing my daughter. She is currently incarcerated. Fighting in her own mind what happened. I feel lost, frustrated with no way to help her now. I’m angry at the mental health care system and the medical system. She tried to get help for her mind many times but no one would listen. I did not see this coming. There needs to be more education on PPP for ALL family members!!!

      1. Thank you so much for sharing this. I’m so so very sorry for your tragic and painful loss…we will continue to fight and raise awareness for her! Moms and families deserve so much better! You’re absolutely right, there needs to be more education for ALL family members to prevent trauma and tragedy. Thank you! <3

    2. Thank you for sharing and we are so so very sorry for your loss! I know she has left a legacy in the midst of a heartbreaking loss! I hope you’ll allow us to fight in her honor and demand better for all families!

  1. Caitlyn Chaconas

    Such a smart way to raise awareness. I really appreciate your efforts and hope that I can help spread your message

  2. I had to advocate for myself while pregnant. I knew I was at risk for PPP, since I was diagnosed prior with some mental health issues. I set a plan in place and told my partner and family to watch for symptoms. It became a troublesome worry for me and I often reminded them. Once I quit breastfeeding, I went into psychosis. I remember being so catatonic in delusions I could barely speak. I barely got out the words ‘It’s happening” to my partner. I got help that day and fully recovered in about two weeks. I now advocate on the education and importance of implementing a plan of action. I was truly one of the lucky ones.

    1. Thank you for your advocacy and for sharing this!!! Your story highlights so many often overlooked aspects of PPP.

  3. Excellent post! Calling it “rare” also encourages health care providers to stay ignorant about it. When they believe they are not likely to see it (because it is “rare”), they are less likely to look for it and be dismissive of it even when it does present itself before them.

  4. I am new to this website, but am trying to reach Teresa Twomey. If someone could contact her (or if she’s reading and can contact me directly) and relay this, I would greatly appreciate it. A theme that still generates today that you (collectively) are trying to change are how “rare” PPP is; how marginalized groups don’t get the same attention (or any); and how words matter. Teresa, when you were in VA, a couple of the group advocates told me that they didn’t “believe” your experience as being a PMAD-PPP. I, too, experienced this; I am a person of color; and so you can imagine the isolation I have felt for all these years about the dismissiveness. I reached out several times to many beforehand to many people within, but all in vain. But you also expressed a word phrase to someone who relayed it to me that was more than hurtful…”not successful in killing the kids.” I don’t think when a woman is in the thrust of serious mental health crisis, as such that we are talking about, is logically and linearly thinking about being “successful” vs “unsuccessful” in going on a “family permanent vacation.” It’s not foresight; and it’s certainly not insightful.

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