Language Matters: Perinatal vs Postpartum

Continue with the topic of language from a previous post, I’ve been thinking about how the terminology we use impacts our awareness of and education about people’s lived experiences with mental health challenges. This post will focus on those experiences surrounding childbirth. There has been an increasing awareness about the term postpartum, meaning the period after birth. Postpartum depression and anxiety has entered the mainstream conversation, even postpartum psychosis is getting more acknowledgement. However, there are so many other points along the way to postpartum that need our attention and care.

I encourage the use of the term perinatal because it covers the spectrum of experiences with mental health along one’s journey to parenthood. By perinatal, I mean:

1. the time preconception when the birthing person is trying to get pregnant
2. the pregnancy
3. the birth: labor and delivery
4. postpartum: the post-delivery or what some refer to as the fourth trimester

There are a few key reasons why I find the perinatal framework valuable. When we look at mental health in terms of the perinatal period, we include people with pre-existing mental health concerns. If you’ve heard of Postpartum Mood and Anxiety Disorders (PMADs), I would like us to reframe it to Perinatal Mood and Anxiety Disorders. This acknowledges that depression, anxiety, panic disorder, obsessive compulsive disorder, post-traumatic stress disorder, psychosis and bipolar can also pose challenges for people in pregnancy and pre-conception in addition to the postpartum period. This framework also acknowledges that people can enter pregnancy while already dealing with these issues and therefore are at a greater risk of becoming unwell.

In my opinion, emphasizing the postpartum period prioritizes the mental health of birthing people with no psychiatric diagnosis or lived experience with mental illness. I find this practice to be sanist, as education and resources  are disseminated in support of otherwise neurotypical birthing people, without concern for those of us who identify as Mad, Mentally Ill, or Neurodivergent. This practice looks to the birth as the primary activation point for crisis, but ignores other periods along the perinatal spectrum that folks with pre-existing mental concerns may be sensitive to in term of risks of having an episode.   

What is at stake when we ignore perinatal mental wellbeing? As a person who has lived with bipolar for 7 years before becoming pregnant, I never knew that I could be at risk of experiencing psychosis during my pregnancy. This is after having worked with mental health professionals for years and having done multiple doula trainings. No one addressed this issue.

Perinatal vs Postpartum Psychosis

There are many risk factors for perinatal psychosis. The ones applicable to me were:

• I entered pregnancy with a bipolar diagnosis and previous episodes and hospitalizations
• I was having my first baby
• I stopped taking my mood stabilizers
• I experienced pregnancy loss
• Madness runs in my family
• I am a sexual assault survivor
• I was undergoing financial stress and housing insecurity
• I was navigating family conflict at the time
• I suffered from severe insomnia

I experienced all these challenges, not to mention the racial health disparities, medical racism, and barriers to care. For the majority of my pregnancy I actually didn’t know what was going on with me. It’s always best to prepare for triggers before a crisis. Without the education about the challenges a pregnancy could present, I had to navigate a very racist and classist broken mental health care system while deeply immersed in perinatal psychosis. After that very scary experience, I felt like the birth world and the mental health care system really did me a disservice. They did not help me prepare myself for what was almost an inevitable outcome for someone with my diagnosis and no access to safe and affordable care.

Activation Points along the Perinatal Spectrum

Fertility Treatments

Not only does perinatal encompass pregnancy and postpartum, but even preconception if we include folks going through fertility treatments. This is noteworthy because if someone is already living with certain mental health concerns, the hormonal changes from the fertility treatments are also potential triggers for mental health episodes.

Pregnancy Loss

Pregnancy loss can also be a perinatal mental health issue for any birthing person, especially for folks going through fertility treatments.  According to Mayo Clinic, “10-20% percent of known pregnancies end in miscarriage, but it’s likely that the actual number is higher because many miscarriages occur so early in the pregnancy that the birthing person doesn’t realize they are pregnant.” Despite how common pregnancy loss is, it’s still a taboo subject with a lot of shame and unresolved grief surrounding it. I had a miscarriage in my journey towards parenthood and it did trigger a psychiatric crisis where I experienced altered states while miscarrying. As a result, my excruciating pain and my concerns were not taken seriously by the doctors.

Psychic pain is physical pain, especially if the sufferer perceives it that way. As a survivor of sexual assault, my pain was compounded by the extremely invasive transvaginal ultrasound the radiologist performed to find “evidence” of my miscarriage. I was in a powerless position while the radiologist was maneuvering inside me. She had no regard for my tears and pleas for her to stop. It was obstetric violence. It was medical rape. The tormenting images and voices in my dissociated state were not acknowledged or attended to. My miscarriage was a very traumatic experience. Mad, Mentally Ill and Neurodivergent folk need extra care and consideration during this potential activation point.

Abortion

Another activation point is abortion. There are various reasons why people may choose to terminate a pregnancy that are also related to their mental health. For instance, not being able to carry a pregnancy because of needing to take psychiatric medication to maintain their mental wellbeing. In this case, a person may not want to take on the risk of adverse effects on the fetus. Other people may choose to have an abortion because they are still figuring out how to take care of themselves and their mental health and do not feel equipped to parent a child. There can be a lot of difficult decisions related to mental health that come with abortion, not to mention the emotional toll of getting access and navigating the physical, relational, emotional, or spiritual issues when in recovery from the procedure.

Pregnancy

Another activation point is pregnancy. I came into my pregnancy already burdened with a very high risk of experiencing a psychiatric crisis. This was compounded by the fact that I had a bipolar diagnosis and I did not have a care team that I felt safe working with. And the choice not to be on my mood stabilizer amplified the fluctuations in my mood. I experienced acute mania and psychosis for the majority of my pregnancy. After I was forced to rest when recovering from eye surgery, I came out of my manic episode and my mood swung into suicidal depression. Thankfully during my brief period of balance in between episodes, I found a psychiatrist who was willing to put me back on meds in my second trimester and I regained stability in time for the birth.

Surgeries

Surgeries are also an important activating event to consider. This is not just in reference to cesarian birth. I did have a C-section which was significant, but I also experienced retinal detachment in my second trimester. When my retina detached I was in a really heightened agitated state of mania. I remember feeling a wildfire of rage overcome me and it was already a really hot summer day. Then all of a sudden my right eye lost peripheral vision. My retina detached and I had to have emergency eye surgery. I was at greater risk for this type of thing because I was born with a cataract in my right eye and had to have surgery to remove it as a kid. Hence, there may be other things that are going on with a person that require medical intervention that could also be severe triggers for mental health issues. Or these physical symptoms could be a result of mental health issues, like in my case. This experience taught me to really honor the mind-body connection with mental health.

Birth

A traumatic birth can be a significant activation point. Birth trauma can include a person’s birth not going according to their plan or preferences. For instance, wanting a unmedicated vaginal birth and ending up with medical interventions that result in a c-section.  A traumatic birth could mean experiencing discrimination or racism from the medical team. Suffering from obstetric violence or medical rape is also deeply traumatic. It can include pre-term births, emergency procedures, or the baby being sent to the NICU. In the early days of the pandemic, hospitals forced birthing people to birth alone without support having a devastating impact on parents and families. There are many types of birth trauma which can then impact a person’s postpartum experience.

Postpartum

To expand further on my postpartum experience, luckily enough I was able to reach stability and avoid postpartum psychosis but I had a lot of other challenges as a result of the ongoing crisis I experienced during pregnancy. There is some cognitive impairment that comes after long manic episodes that thankfully is temporary. For instance, I could not read. Every time I tried it was as if I was looking at words in another language. I couldn’t orient myself in my environment. I was often lost and confused. I had difficulty with memory. I also had post-mania PSTD which involves intrusive thoughts and flashbacks of things I did and said when I was in altered states. I did not want to be alone with my baby and be stuck with my thoughts. There was a lot of guilt and shame that I went through and isolation since I was three months postpartum when the pandemic hit here in New York. So all this to say that, the labor and birth can be a trigger for postpartum mood and anxiety issues, but the trauma from pregnancy or pre-pregnancy also can impact someone’s postpartum experience.

Finally, there are changes that are happening in the body during the postpartum period that can also trigger mental health episodes.

Hormonal Birth Control

One of these changes includes going on hormonal birth control. I know this is a huge issue for people with mood disorders because hormones can have a significant effect on moods.  For this reason the type of birth control people choose is a crucial decision. It’s important to make an informed decision and take the mental health impact into account.

Menstruation

Beginning menstruating again can be jarring, especially after not having a menstrual cycle for almost a year or longer. Even though someone may be lactating their menstrual cycle may start sooner than anticipated.

Breastfeeding and Lactation

Issues with breastfeeding (chestfeeding or bodyfeeding) and lactation can also really be difficult for people. A lot of care needs to be taken when weaning. Stopping abruptly can trigger depression or other mood related symptoms due to the fast drop in hormones.

Conclusion

The perinatal framework is critical because language has the power to increase our awareness. Awareness of the potential mental health challenges throughout the perinatal period provides an empowering opportunity for the birthing person to take charge of their own wellbeing. This is what would be called giving people the dignity of risk – having all the information so they can help themselves from a place of knowledge to better navigate the potential risks without others deciding for them through force or coercion.

Coda: Postpartum Support International

There is an organization ironically called Postpartum Support International, but they are truly a perinatal mental health organization serving folks of all identities, points along the reproductive journey, and walks of life. With the increasing awareness of the need to be more inclusive in their language, they debated changing the name to Perinatal Support International. However, they chose not to do this because of the lack of education around the word perinatal and they feared that no one would find them if they changed the name.

They have a lot of amazing peer-led support groups. Attending the Postpartum Psychosis Support Group has really helped me work through some of my pregnancy psychosis trauma. Unfortunately, I am the only person I have met who has had “perinatal” psychosis i .e. in pregnancy. I wonder how many other pregnancy, miscarriage, or fertility treatment psychosis survivors would attend if they knew there was support for their particular perinatal experience. What if they knew there was a healing space where they could go and meet peers? I guess as I continue to embark on this journey to reduce the disparities in perinatal mental health care we’ll just have to see.

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Image Description: A mother embracing her baby.