The Truth About Postpartum Psychosis

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emergency-stop-buttonThese are the kind of posts we don’t like to write. But they are also the posts we must write because these situations carry the most potential for stigma and misunderstanding as they relate to the Perinatal Mood & Anxiety realm.

A recent situation in Cincinnati is the reason for this post. I won’t link for safety reasons, and if you are fragile, I would recommend you NOT Google for the story. (If, however, you do, and you need someone to talk to about it during the day, find me on Twitter here: @unxpctdblessing. I will be happy to chat with you.)

Media sensationalism along with misunderstanding by society at large can turn a singular incident into a large scale stigma fest. THIS is why we write posts like this. To educate and prevent misunderstandings in the future. It is a delicate balance to write these posts without triggering our audience, hence the emergency stop picture. While I have tried to keep this post as non-triggering as possible, again, if you are fragile, you may want to skip this post.

When a mother with Postpartum Psychosis follows through with behavior which is limited to a very small percentage of mothers who do experience psychosis, it is splashed across the front pages and often combined with the term “postpartum depression” or “baby blues,” leading readers to believe a depressed mother is capable of this act.

Let’s get a few things straight here.

Postpartum Psychosis only occurs in 1-2 of every 1000 births, or .1% of births.

Of those .1%, only 4% may commit infanticide, and 5% may commit suicide.

Postpartum Psychosis is NOT Postpartum Depression.

Postpartum Psychosis is defined by hallucinations, delusions, rapid mood swings, decreased sleep, and increased paranoia.

Postpartum Depression is defined by increased sadness, irritability, increased sleep, feelings of guilt, and loss of interest in usual things. It also carries the risk of thoughts of harming your child or yourself, but mothers with Postpartum Depression are highly unlikely to follow through.

Baby Blues is experienced by up to 80% of all new mothers and is NOT a disorder found on the Perinatal Mood & Anxiety spectrum.

It’s important to note here that I know more than a few mothers who have successfully fought back against psychosis and won. They (and their children) are still with us. Psychosis also does not always equal the death of a mother or a child. It is, however, the one disorder on the spectrum which carries the highest risk for loss of life.

I want to add that Postpartum OCD is the other disorder on the spectrum closest to the signs and symptoms of Postpartum Psychosis. How do you tell the two apart? OCD moms are typically disgusted by the thoughts which flit through their heads while moms with Psychosis believe the thoughts they are experiencing, no matter how delusional, are real and rational. They are driven to follow through with them, while moms with OCD fight against them and do everything to make them go away. Am I saying moms with Psychosis WANT to follow through with their delusions? No. I’m saying that because of the nature of the disorder, they are unable to fight back without help.

From the Postpartum Support International Website:

It is also important to know that many survivors of postpartum psychosis never had delusions containing violent commands. Delusions take many forms, and not all of them are destructive. Most women who experience postpartum psychosis do not harm themselves or anyone else. However, there is always the risk of danger because psychosis includes delusional thinking and irrational judgment, and this is why women with this illness must be treated and carefully monitored by a trained healthcare professional.

So what should you do if you or a mother you know and love shows signs and symptoms of Postpartum Psychosis?

She should immediately be seen by a physician. She should not be left by herself, or alone with her infant at any time. It is possible she may need to be hospitalized for a short (or longer) time until she begins to respond to any prescription medications to balance her psychosis. Unfortunately, we do not live in a perfect world and mothers often fall through the cracks. Compliance with medications outside of the hospital setting (which is the alleged case in Cincinnati), is something no one can monitor. What we can do, however, is continue to educate the population at large about the signs and symptoms, encourage them to not leave the mother alone, and encourage compliance with any treatments set forth by a medical professional.

Healing from a Perinatal Mood & Anxiety Disorder is not a solo journey, nor is it an easy journey. We need a village to wrap their arms around us as we learn how to walk again. Be a part of that village. Please.

Here are some resources to get you started:

Signs & Symptoms of Postpartum Psychosis

Suicide Hotlines

Know that above all, you are not alone and you will get through this.

 

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Breaking Down The Privilege of Me Too

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women talking and woman standingThis past week, I had the privilege of speaking about Perinatal Mood and Anxiety Disorders with the Moms’ weekly group I attend. It was a bit beyond my comfort zone as I am accustomed to supporting and disseminating information in cyberspace more than in person, something I hope to change this year.

One of the things I love about sharing information is the inevitable “Me too,” which reverberates among the group, much like a pinball caught in a continuous loop in a pinball machine, refusing to exit until it has hit every available surface.

Me too.

Think about how huge that is for so many of us.

Despite the fact that up to 10% of new moms struggle with a Perinatal Mood & Anxiety Disorder, many of us don’t have the PRIVILEGE of having someone we can say “Me too” with at the end of a hard day with the baby in our arms and the struggling brain in our head.

“Me too” shouldn’t be a privilege.

It’s something we should be able to say without guilt, without fear, without shame, without stigma.

I have intrusive thoughts.

Me too.

I didn’t love my baby at first sight.

Me too.

I cried all the time.

Me too.

I was inexplicably and illogically filled with rage.

Me too.

I still wonder if my baby loves me.

Me too.

I am scared to talk to my doctor about what’s wrong with me.

Me too.

I wonder if I will ever be well.

Me too.

I worry about everything and think everyone who sees me knows I am a horrible mother.

Me too.

We all have these thoughts. They’re on parade in our head on a daily basis. For me, I even went as far to keep all the blinds down in my house because I was convinced that if anyone saw in, they would know I was a horrible mother. I felt as if I were living in a fish bowl. Saying “Me too,” finally, helped that feeling to fade and I finally allowed the sunshine into my life.

This privilege, this “me too” phenomenon, is why I started #PPDChat and why I will always listen when a mother begins to talk about the emotional roller-coaster that is motherhood. Because we ALL deserve to have someone with whom we can say, “Me too.”

What’s the one thing you wish you had been able to tell someone and have them respond with “Me too?”

Tell us in the comments. Or take to Twitter and use the hashtag #ppdme2.

 

photo source: “women talking and woman standing” by kalexanderson on flickr
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Women of Color and Maternal Mental Health: Why Are We So Underserved?

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women of color maternal mental healthOver the past year, I’ve made it a point in my advocacy efforts to focus more on women of color, talking with them about their mental health experiences during pregnancy and the postpartum period. Based on those conversations and my own personal experience, I’ve become especially interested in how perinatal mood disorders and their symptoms impact and manifest in our lives, what culturally specific barriers to support and treatment we encounter, and what mental health advocacy efforts are being made to remove those barriers for us. Here’s what I’ve learned from research, Postpartum Progress’ current survey on mothers of color and their experience with perinatal mental health, conversations I’ve had with fellow mothers of color, and from what I’ve seen in the mental health advocacy space.

 

  • We are woefully underserved by mental health professionals and social services that reside in our communities-for a variety of reasons. Many of the women I spoke to were dismissed, rebuffed, or had their mental health concerns during pregnancy and the postpartum period downplayed by their doctor, pediatrician, pastor, and/or social worker.
  • Women of color are either without health insurance, or have insurance plans that do not cover mental health services, especially during pregnancy. Medicaid, for example, often lapses in many states six weeks after pregnancy, leaving many without continued coverage and access to mental health care.
  • We are not informed or aware of what places us at a particular risk for developing one of these illnesses compared to Whites.
  • We simply aren’t aware of the symptoms of perinatal mood disorders.
  • Stigma around mental illness is prevalent in our cultures but this is especially true when it comes to motherhood. Our cultures place a significant emphasis on us being silent about our struggles, taking care of everyone else before ourselves, turning to religion in an effort to overcome, and on being strong in the face of adversity-particularly in the face of oppression, racism and other socioeconomic stressors. Seeking the help of a professional, and disclosing our symptoms is seen as a sign of weakness so much so that we ignore the need to make our mental health a priority. Health advocacy efforts focus solely on physical illnesses such as diabetes, heart disease, stroke, infant mortality, and cultural disparities in breastfeeding rates. The latest statistics show that women of color and those living at or below the poverty line have a higher rate of occurrence, yet none of the national organizations dedicated to empowering and serving minorities discuss maternal mental health and the disparities that exist in regards to diagnosis, support, and treatment. This is preposterous and negligent considering our rate of occurrence is 1 in 4.
  • Our reasons for not discussing it publicly are a significant barrier to raising awareness and seeking treatment. We face racial and gender discrimination in our places of employment so as you can imagine, disclosure of a postpartum mood disorder can increase the risk of losing our jobs significantly. Many of the women I’ve spoken with have expressed this fear, with several stating it was the sole reason they didn’t seek treatment either during pregnancy or when their symptoms peaked during their child’s first year. Support from family and friends is often minimal due to culture specific stigma and ignorance surrounding mental illness. Many of us living at the poverty line or who are in the lower-income bracket utilize the help of social services such as SNAP, WIC, and TANF; speaking from personal experience, I can say being under scrutiny from social workers and the state triggers fears of losing your children for being seen as unfit to care for them.
  • Lack of research. I’ve grown incredibly frustrated in my efforts to find consistent research on this issue because, quite frankly, it’s pretty scant. Most of the research that focuses solely on women of color and perinatal mental health is also out of date, with data from the late 90’s and early 2000’s.
  • Lack of targeted advocacy. We do not see women who look like us in literature doctor’s offices, or on websites that talk about perinatal mental health. There are very few if any advocacy campaigns or outreach targeted specifically towards us, like there are for other health issues and breastfeeding. Advocacy organizations often focus on minority mental health only during designated months once or twice a year, instead of on a consistent basis. Many organizations simply focus on all pregnant and new mothers, which is fine, but such a general scope ignores our unique experiences with mental health. Our disparities in support and treatment due to socioeconomic stressors, our particular needs, the risk factors we face, as well as the role culturally specific stigma plays as a barrier are not taken into consideration when calls to action are given. They are mentioned as an afterthought, a sentence or two in a post or article. The results of such inattentiveness are programs and initiatives that are not inclusive of our unique needs. Finally, we lack support groups in our own communities as well as safe spaces online to talk with other women like us who understand our unique struggles as mothers, which for many of us creates a very isolated existence.

This has to change. It’s unacceptable and as a woman of color and survivor of postpartum depression and anxiety, it hurts my heart to know our maternal mental health isn’t being actively prioritized, much less thought of.  While I fully understand that postpartum mood disorders don’t discriminate in terms of who they impact, and that the need to help pregnant and new moms is great all across the board, I also know that efforts are seriously lagging behind when it comes to the maternal mental health of women of color. We MUST do better. Later this week, I will talk about how we can but for now, I’m interested to hear your thoughts. Mothers of color, what has your experience been, and what kinds of supports and programs do you think would serve us better? What kind of improvements would YOU like to see?

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Should New ICD-10 Code Reference Puerperal Psychosis?

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Doctors At The General AssemblyA recent blog post at Supercoder exclaims there will be a new code for Postpartum Depression in the ICD-10. What’s the ICD? The ICD ” is the standard diagnostic tool for epidemiology, health management and clinical purposes, according to WHO. This includes the analysis of the general health situation of population groups.” In simple terms, the ICD is where codes for diagnoses and treatment are found and then used by doctors for your charts and for insurance purposes. Of course, it is also used for research and tracking purposes as well (epidemiology).

One would think this is good news as it changes the convolutions from the ICD-9 and simplifies it into one code. But in my personal opinion, this is not a good step for anyone. Why not?

Because, according to the blog post at Supercoder, this new code will reflect a diagnosis of Postpartum Depression as Puerperal Psychosis. What’s the ONE thing we always, always, always cry from the rooftops?

Yup.

POSTPARTUM DEPRESSION IS NOT PSYCHOSIS.

And yet, in the new version of the diagnostic bible for medical professionals, postpartum depression will indeed, become psychosis.

Why the change?

According to Medicaid’s page regarding the switch from ICD-9 to ICD-10, “The ICD-10 code set is much better at describing the current practice of medicine, and has the flexibility to adapt as medicine changes.”

In my humble, non-professional, survivor opinion, this is not a move forward. Instead, this is a step back. We have fought so very hard to differentiate postpartum depression from psychosis. For women, it is an important distinction to make when seeking help. With media sensationalism, the cases the public hears about are rooted in psychosis but often referred to as postpartum depression. This is makes the need to differentiate between psychosis and depression urgent. Women and their loved ones need to be reassured that not all cases of Perinatal Mood Disorders are psychosis. In fact, Psychosis is extremely rare and doesn’t always end in death despite carrying the highest risk for both infanticide and suicide.

In reading the code information page at the ICD-10 website, postpartum depression is mentioned and explained in detail. It’s done quite well, actually. However, the fact remains that the leading words are “puerperal psychosis.”

According to Wikipedia, the definition of “Puerperal Psychosis” is “a term that covers a group of mental illnesses with the sudden onset of psychotic symptoms following childbirth. A typical example is for a woman to become irritable, have extreme mood swings and hallucinations, and possibly need psychiatric hospitalization.” While this does indeed describe Perinatal Mood & Anxiety Disorders, emphasis must be placed upon the fact that psychotic symptoms are not part of all of those diagnoses found under the Perinatal Mood & Anxiety Disorder umbrella. Only one – Psychosis, involves psychotic symptoms.

I did not struggle with Psychosis but rather with Obsessive Compulsive Disorder. I experienced a near-psychotic break as a result of a negative reaction to medication but it resolved once my medication changed. (This is why it is so important to communicate with your physician about any changes in behavior while on any psychiatric medicine).

While I appreciate the effort to simplify the coding for Perinatal Mood & Anxiety Disorders, the road this starts us down does not seem to clarify much of anything for women, for doctors, or for the media. The results of this change may prove to be a further hindrance to treatment and increase sensationalism with rare cases ending in infanticide and suicide. Imagine a young mother in a room with an untrained physician being informed that she’s just scored positive on the Edinburgh Postnatal Depression Scale and with this diagnosis of Puerperal Psychosis, she’ll need medication, etc. One would hope physicians would be better but there’s always the what if…the what if that I hear all too much from mothers who have experienced the untrained doctors. Perhaps this is what frightens me most.

I would love to hear the opinion of others regarding this change to the coding for Perinatal Mood & Anxiety Disorders. Do you think it’s a step in the right direction? Or do you see it as a hindrance to treatment and outreach? Codes are so rarely discussed publicly so perhaps it won’t matter in the grand scheme and I’m over-reacting. But in a world where labels matter (and they do, in the Perinatal Mood & Anxiety Disorder world), this, in my personal opinion, only ends in a huge leap backward.

Chime in below with thoughts and questions.

(photo credit: “Doctors At General Assembly”, Waldo Jaquith @flickr)

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