Life
There’s A Reason Your Postpartum Anxiety Went Undiagnosed
It’s very hard to ask for help when you don’t know what to call the thing you need help with.
Officially, it is estimated that 1 in 5 people who give birth will experience a perinatal mood and anxiety disorder (PMAD), an umbrella term for anxiety, depression, and other related mental health challenges that arise for many of us during pregnancy and the first year postpartum. However, everyone I’ve ever spoken to who works in the field of perinatal mental health suspects the real number is much higher.
Anecdotally, it is easier for me to think of the names of friends who had perinatal struggles than to think of someone who floated blithely into parenthood untouched by a hybrid of anxiety and depression. Most of us didn’t know what to call how we felt. It seemed like most of us were self-diagnosing, even if they were in therapy for it or on meds for it. “It.” It nagged at me.
We all knew the exact emotional place we’d visited. A uniquely perinatal place — often scary — and, without a doubt, specifically rooted in our matrescence. This haunted place sent the lucky ones among us to therapy or earned us an SSRI prescription. For some others — maybe even most others — it sat simmering under the surface of our lives, undiagnosed, unexamined, untreated.
From within the relative comfort and safety of hindsight, we made assumptive self-diagnoses. Maybe postpartum depression, maybe postpartum anxiety; maybe it was postpartum OCD. Swapping stories of intrusive thoughts, obsessive behaviors, extreme worries at bars and coffee shops. “I kept seeing visions of her head smash on the stairs like a watermelon!” “I know, right?” We laugh and soothe each other with the catharsis of shared experience. “Thank God we’re done having kids,” someone says. And the conversation pivots.
I had no name for what I’d been through, and she didn’t either, because there isn’t one.
Six months into therapy and nearly a year postpartum, I finally asked my therapist what my official diagnosis had been. This was when I learned that postpartum anxiety is not a stand-alone diagnosis. Despite their known prevalence, PMADs have not earned a stand-alone place in the “bible” of psychiatric diagnoses, the Diagnostic and Statistical Manual of Mental Disorders (DSM).
“We’d probably call what you experienced an ‘adjustment disorder,’” my therapist explained with a shrug. “PMADs are not in the DSM.” I had no name for what I’d been through, and she didn’t either, because there isn’t one.
An “adjustment disorder.” I don’t know if that bugs you, but it really bugs me.
It also really bugs Paige Bellenbaum, LCSW, founding director at The Motherhood Center, who has been advocating for perinatal mental health for many years. Not having a diagnosis for the perinatal mental health conditions that practitioners know to be unique to that time period is, she tells me, “such a disservice, because it contributes to an absolute dearth of providers in all disciplines that have awareness of this issue. For example, OB-GYNs or general psychiatrists. Because it’s not there [in the DSM], it’s not taught. So people don’t understand what to look for, how to respond, what best practices are. All because, according to the DSM, they don’t exist.”
“Currently, the only mention of perinatal mood and anxiety disorders in the DSM is a specifier (‘with peripartum onset’), which is added to the diagnosis of major depression, indicating the onset was during pregnancy or the four weeks immediately following birth,” says Felicity Colangelo, LCSW, a perinatal therapist practicing in Maine. Jammed under “major depression,” with a duration window for “postpartum” that is ridiculously short — that’s what we get. Because so many cases of PMADs — up to 80%, according to The Motherhood Center — are understood to go undiagnosed and, therefore, untreated, data is hard to come by. Still, what we do know is staggering: We know that PMADs are the single most common complication associated with childbirth and a top reason for maternal mortality in the United States. We know that untreated PMADs are estimated to cost more than $14 billion a year.
“We’ve come a long way and we still have more to go,” Dr. Jacquelyn Knapp, assistant professor of psychiatry and obstetrics and gynecology, at the Oregon Health & Science University School of Medicine, tells me. What Knapp is referring to when she says “we’ve come a long way,” in the DSM-5 (the current edition of the DSM), is as follows:
“The postpartum period is unique with respect to the degree of neuroendocrine alterations and psychosocial adjustments, the potential impact of breast-feeding on treatment planning, and the long-term implications of a history of postpartum mood disorders on subsequent family planning.”
A tiny specifier, tucked under major depressive disorder, that actually speaks volumes. “They’re basically saying the brain changes. That everything in your life is changed — mood, hormones, your ability to be a person in the world. Your whole life is impacted,” Colangelo tells me, noting that the language is so strong, so powerful, that it’s almost (emphasis on almost!) funny that they could acknowledge all of this and still not feel compelled to give PMADs their own diagnosis.
If this feels like nothing but a little question of semantics, not relevant to lived experience, stay with me. First, and maybe most obviously, a clear and accurate PMAD-specific diagnosis would be validating to people who experience PMADs. The charity Every Mother Counts, which is focused on reducing the global maternal mortality rate, has a simple tagline on its website that sums it up nicely: “Name it to tame it.” That’s what I was asking for, I think, when I asked my psychologist to tell me what my actual official diagnosis was. And why it was painful not to get one.
Beyond the importance of validating the experience of the countless women who experience PMADs, singling them out as unique and specific in the DSM would mean that they would be taught in fields where they urgently need to be taught.
Colangelo considers the DSM absence to be a huge piece of why we’re not diagnosing folks. “When birthing people go into their provider and say ‘I feel really sad and I’m crying a lot,’ they often hear: ‘Oh, that’s baby blues. Just ride it out.’ I hear that a lot still, unfortunately.” If a more inclusive spectrum of PMADs — one that included things postpartum anxiety and postpartum OCD — were defined in the DSM, people would almost certainly be more likely to get their needs met because therapists, primary care physicians, and OBs would know to be on the lookout for them. As it stands, many women have no idea what they’re suffering from is treatable because it looks and feels nothing like what is typically thought of as “major depression.”
Across the board, doctors would take PMADs more seriously because they would know them from “the bible,” from school, from the official, statistical manual of diagnoses. Naming them would legitimize and — one hopes — destigmatize.
Positive outcomes are entirely within reach, but people who are suffering must reach out, and it’s very hard to ask for help if you don’t even know what to call the thing you need help with.
Here, now, we do not have the appropriate language, or official diagnosis — and the awareness and training that would follow — for PMADs. Because of that, we have huge numbers of pregnant and postpartum people suffering silently, untreated, underreported. Underreporting also perpetuates and enables the stigma around postpartum mood disorders of all types. From this vantage, it’s easy to see why we still are where we are.
What data we do have, though, show clearly that the effects of undiagnosed PMADs take a huge toll on families and society as a whole. “Scientific research suggests that there’s a whole litany of adverse impacts for women who experience untreated perinatal mood and anxiety disorders during pregnancy,” Bellenbaum tells me. “Women who are depressed are more likely to have early term deliveries; have higher preeclampsia rates, lower birth rates, higher [chance of] NICU stays. When we look at the immediate postpartum in infancy, we know there can be higher SIDS rates. When we look at Mom over time, perpetual and continual untreated PMADs can lead to bonding and attachment issues, to long-term health complications and mental health issues. It can also be generational and passed down in the sense that, for that child as they get older, there can be cognitive, developmental, neurological issues; lower education attainment; higher substance use rate. We have all this data that shows us the probability of adverse outcomes if PMADs are undiagnosed and untreated.”
Every reproductive psychologist and perinatal mental health care provider I spoke to reiterated the power of timely diagnosis and treatment. Positive outcomes are entirely within reach, but people who are suffering must reach out, and it’s very hard to ask for help if you don’t even know what to call the thing you need help with. “We know how to treat this; we [perinatal psychologists] do know what to call it. We know what to do. If we — as a society, as a culture — were able to recognize and destigmatize PMADs, imagine the impact that it would have on women, babies, children, and generations to come,” says Bellenbaum. Naming PMADs in the DSM would validate the work that she and her peers have been doing for years, as well as standardize care.
If you or someone you love felt bad after having a baby — or during pregnancy — and never got a satisfying diagnosis (or a diagnosis at all) you may find it gratifying to know that the reason is because there isn’t one.
However it makes you feel, know that PMADs are real. Perinatal psychologists know it, and we who have been there know it deeply. Our perinatal feelings were distinctly perinatal, and were all tied up in the very real biological, neurological, and circumstantial realities that enveloped our matrescence. They are visceral, distinct, and pervasive — certainly worthy of their own name.
Experts:
Dr. Jacquelyn Knapp, M.D., assistant professor of psychiatry and obstetrics and gynecology, at the Oregon Health & Science University School of Medicine
Felicity Colangelo, LCSW, perinatal therapist at The Nurtured You
Paige Bellenbaum, LCSW, founding director and chief external relations officer at The Motherhood Center
Studies referenced:
Byatt, N., Levin, L., Ziedonis, D., (2015) Enhancing Participation in Depression Care in Outpatient Perinatal Care Settings: A Systematic Review, Obstetrics and Gynecology.
