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ANDREA SMARDON: Hello, I’m Andrea Smardon and this is More Than Half, a podcast that uncovers some serious challenges facing Utah women and why it takes all of us, regardless of gender, to overcome them. From wage gaps to unequal political representation to mental health struggles, we’re going to look at what is going on in women’s day to day lives, and we’re going to talk to people who are working on solutions. We’re here to break down stigmas and start conversations. Our first step in this podcast... is to listen.

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AMY-ROSE WHITE: It's dangerous to admit what women perceive as weakness around mental health issues that surround pregnancy and childbirth.

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ANDREA: Today we’re looking at the mental health of Utah mothers. Maybe you’re picturing a mom who gets depressed after she has her baby. That’s how I thought about it before working on this episode. But what we found out is that there is so much more happening under the surface that people don’t talk about - symptoms that many mothers endure in silence. Why don’t women talk about it or get help? Even the experts often miss the suffering that women are experiencing. In this episode, we’ll hear from one of those experts - whose own experience after childbirth helped her realize there was a gap in awareness for mothers and healthcare providers.  And we’ll hear from  a woman who’s sister’s death helped spark a movement in Utah.

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AMY-ROSE: I was pregnant in my second year of grad school, working on a labor and delivery and NICU floor.

ANDREA: 20 years ago, Amy-Rose White was studying to be a perinatal psychologist.

AMY-ROSE: And I worked with women who were survivors of postpartum depression, thinking I was helping them. And then I had a traumatic delivery with my first son who had a brain injury during that delivery. And it was very long and painful and, and not what I planned, not what I read in all the books.

ANDREA: After struggling with depression in her youth, Amy-Rose felt confident she would be able to recognize any issues.

AMY-ROSE: And so I thought I knew the signs of postpartum depression to look for. And I was so relieved that none of those symptoms came back, but something else was there. And for me, that was the form of feeling like I was walking through a dream, not being able to talk about the birth without crying, not being able to sleep, nightmares, um, feeling over attached to him, anxious about whether he's breathing-- symptoms that I had not read about or nor did I understand and, you know, I don't think anyone knew what they were looking at. And it took me a really long time until I got pregnant with my second child, to even recognize that something had been really wrong.

ANDREA:  What Amy-Rose didn’t know at the time was that she was suffering from postpartum PTSD.  While most people are familiar with the term postpartum, which means after birth, women are at risk of developing a mood disorder even during pregnancy. This group of conditions is called perinatal mood disorders. Perinatal means both during pregnancy and after birth. Other disorders include perinatal depression, anxiety, panic disorder, OCD, bipolar disorder, and postpartum psychosis.

AMY-ROSE: These are the same mental illnesses that exist outside of child bearing, but they look different in the perinatal period. Harm can and has been done by well-intentioned therapists who simply don’t understand the unique symptoms associated with the perinatal period or how they need to be treated.  

ANDREA: Over the two decades since Amy-Rose had her first child, understanding of maternal mental health has advanced, but many people still don’t know about the different ways perinatal mood disorders can affect women.

Some of these disorders such as Perinatal OCD, can be particularly scary for mothers, and difficult for health care providers to recognize. Amy-Rose remembers when a client she had previously treated for postpartum depression called her out of the blue years later. She had just had a second baby and was concerned by the intrusive and repetitive thoughts she was having. She was on her way to the ER.

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AMY-ROSE: I had her husband on the line  and I had him ask her a few diagnostic questions, pull over and turn around and go home. That night could have ended really differently for her.

ANDREA: Amy-Rose knew that perinatal OCD affects up to 11% of mothers, but an untrained provider unaware of the disorder might have mistreated this client’s fears around hurting her baby.

AMY-ROSE: Perinatal OCD is often mistaken for psychosis when women do have the courage to report it to providers, whether that’s a therapist or, worst case scenario, an emergency room social worker, who often have absolutely no idea what that is.  They hear the words you’re going to hurt your baby, they think you need to be in a locked down psychiatric unit. Nothing could be further from the truth.  

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ANDREA: Incorrect treatment isn't the only issue women face when trying to get support for their disorder.  Women can have a variety of symptoms, making it easy for health care providers to miss when they’re struggling. A disorder can be hiding in plain sight.

AMY-ROSE: For providers, it's like their patients are a mirror and that mirror wasn't reflecting, you know, what was actually happening for the patient, so women aren’t being asked.

ANDREA: And diagnosis guidelines require women display what they call “functional impairment,” which isn’t always easy to spot.

AMY-ROSE: And what we find when we dig deeper in conversations with women who are suffering is that their functioning is significantly impaired, but most often at an internal level, rather than an external level. So most often kids are being fed. Diapers are getting changed. Multiple children are being cared for. Kids are being driven to school. You know, meals are being made. The house is even being cleaned.

ANDREA: But just because women aren’t showing outward symptoms doesn’t mean they’re not suffering.

AMY-ROSE: Those women are just as likely to be suicidal as not if you don’t ask them.

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ANDREA: Something Amy-Rose has learned speaking with hundreds of women and families over the years.

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AMY-ROSE: I just learned how not unique that situation was, how isolated so many women feel in these little boxes next to little boxes,  reinventing the wheel of motherhood, all feeling like we're failing at it, not knowing where to reach out for support, feeling alone, feeling ashamed, feeling like it's our fault. I really wanted to change that. And so I've dedicated really my life to doing that.

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ANDREA: Amy-Rose helped found the Utah chapter of Postpartum Support International, which works to ensure every woman in the state receives information on risk, prevention, and treatment of perinatal mood disorders. One big piece of their work focuses on educating health care providers.  But another large piece centers on helping women to understand their symptoms and normalize conversation around them.  

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AMY-ROSE: So many women for so many different reasons across populations across the United States, probably the world, um, have such intense shame and fear of recrimination for being honest about their mental health symptoms during and after pregnancy.

ANDREA: She attributes this in part to what she calls the myth of motherhood.

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AMY-ROSE: The myth of motherhood is that it's blissful, it's fulfilling, it's rewarding. It ought to come naturally. We should be so grateful. Um, and anything outside that expectation could lead to at minimum disappointment, maximum removal of children.

ANDREA: These disorders affect 1 in 5 women nationally, but due to a higher number of births and larger families, that number jumps to 1 in 3 women in Utah. Amy-Rose has practiced perinatal psychology in the state for 9 years now, and notes that the myth of motherhood can be especially strong here, due in part to a culture that idealizes the role of mothers.

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AMY-ROSE: There is this sort of elevated status of women needing to be perfect, needing to be the perfect mom.

ANDREA: In fact, she points out that many well known mommy bloggers are from Utah.

AMY-ROSE: They have some pretty amazing, um, accounts in terms of showcasing the myth of motherhood in articulate detail. You know, like the, the perfect family comes across in a lot of these accounts.

ANDREA: Amy-Rose believes this fear of disappointment can make women uncomfortable talking about any mental health situations - leaving them to suffer in silence.

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AMY-ROSE:  I have just heard countless stories from women that just feel like in their communities, they will be letting down, you know, their partner, their Bishop, their ward, their family.

ANDREA: But, over the last 5 years in Utah, a shift has begun, thanks in part to one woman’s story that shattered the myth of motherhood and opened people’s eyes to the mental health struggles going on all around them.

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MEGAN JOHNSON: Um, Emily was an amazing mother.

ANDREA: Megan Johnson is talking about her oldest sister, Emily.

MEGAN: She was my role model growing up. Um, she's the type of person that everybody loved to be around and, um, made you feel special and made you feel connected when you were around her.

ANDREA: Emily appeared to be living the Utah dream of motherhood with a large, healthy family. In March of 2015, Emily and her husband Eric had their 5th child.  With her previous four births, Megan says Emily didn’t seem to have issues, but something felt different this time.

MEGAN: She had this heightened anxiety, it was very tangible and very noticeable.

ANDREA: Over the course of the next few months, Emily would find a treatment that seemed to work, but then her anxiety would return. And the cycle continued.

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MEGAN: It was a really bumpy roller coaster for a few months.

ANDREA: In the fall, Emily needed hospitalization.

MEGAN: She spent 10 days, 10 long days, you know, but she came out with resolve and actually with a desire to, to share her story, but even just a couple of weeks later, that anxiety, it returned again. On the day of her passing, she was with my dad. She went to him for help and for comfort.

ANDREA: As they were driving on the freeway, Emily experienced a severe panic attack.

MEGAN: The point where she felt like she needed to get out of the car. And she did while they were driving around the freeway as a result, um, she was in a pedestrian accident that, that took her life.

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ANDREA: Around the time of Emily’s death, the situation in Utah was what Amy-Rose called dire.  Women weren’t getting screened and providers weren’t able to recognize when women had mood disorders. Megan says moms tended to keep their mental health struggles to themselves.

MEGAN: I know that before Emily's experience and her passing, that was something that in Utah wasn't, you know, talked about as openly.

ANDREA: As a therapist herself, Megan knows the pressure and stigma that can hold women back from getting treatment.

MEGAN: You know, we just kind of have this picture in our mind of what mental illness looks like. And so I think because of that, when someone experiences this, especially a mom, they think that it's their fault, or we hear things like, well, if you'll just do A, B, C, and D, that you should be okay.  And the whole mindset of, you know, pick yourself up by the bootstraps and those types of things. And so, because of that, they're not often willing to talk about it and share it.

ANDREA: Megan and her family saw Emily’s passing as a chance to change the narrative around motherhood and mental health. They created a foundation called The Emily Effect.

MEGAN: Within the first couple of days after her passing, um,  we received messages from moms, reaching out to us, sharing that because I saw your sister story, uh, I've decided to reach out and get help.

ANDREA: The Emily effect website has a space for what they call letters of light; Hundreds of women have shared their stories.

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WOMAN 1: Shortly after taking my baby home I felt depressed

WOMAN 2: I felt like a terrible mother who would never get it right

WOMAN 3: For weeks I had been struggling to understand what I was dealing with

WOMAN 4: I didn’t expect the crying, the hopelessness

WOMAN 5: I was afraid to do anything with my children

WOMAN 1: I thought I should be incredibly happy, but I was not

WOMAN 6: But I felt so guilty that I didn’t face it

WOMAN 7: I felt helpless

WOMAN 2: I felt abandoned

MEGAN: They have shared, you know, their trials and their triumphs and through that, that's helped to create this connection to realize, well, here's Emily’s story, but here's these other stories as well. And really they’re, they’re letters of hope.

WOMAN 4: I didn’t expect to feel better.  I also didn’t expect to find light.

WOMAN 1: Do not suffer silently, you are not damaged.

WOMAN 5: There is power in numbers.

WOMAN 2: You’re truly surrounded by people ready to help you.

WOMAN 7: We all have our struggles, and the most important thing you can do for a person is be there for them.

WOMAN 8: There is always light, whether we see it or not.

MEGAN: So I just kind of look at it as we're, we're intertwining and interweaving these stories together to create this tapestry of this reality of what women can experience and I think because of Emily and who she was, so many women connected to her and it helped them to not feel shame in their own stories and they find connection in that.

WOMAN 3: Although Emily will never know it, she came into my life at a time when I needed her.

WOMAN 2: You can be happy again.

WOMAN 1: There is help and hope ahead.

WOMAN 4: This time will pass.

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ANDREA: Due in part to the work of people like Amy-Rose, Megan and countless others, Utah has made strides in recent years. In 2018, the Utah legislature passed a resolution, declaring the importance of maternal mental health. Since then, there has been a strong push to educate both healthcare providers and the community about these topics, as well as the creation of a statewide referral network. But there are voices missing. Amy-Rose says much of this work has been geared towards white women with resources.

AMY-ROSE: Institutional racism Absolutely contributes to the horrible infant and maternal mortality rate we have in the US for black women and women of color in general. I don't believe that's different here in Utah.   It's just not being addressed yet.

ANDREA: After discussions with community organizations, Postpartum Support international Utah is still figuring out the next best steps. For now, Amy-Rose says one place to start is in education for health care providers.

AMY-ROSE: The only thing really relevant I have to say besides check your bias when you're working with people and utilize the resources you have at hand is by the way, everything I'm telling you is through a white woman's lens. All of Western psychology, essentially that actually white male lens. So that's something that we can immediately do, which is better analyzing the information that we're sharing and encourage dialogue about it.

ANDREA: One place she wants to open this dialogue is around creating culturally relevant treatment options.

AMY-ROSE: Anyone who's not white is going to then have that system layered upon them when they're thinking about asking for help, which is why having providers of color in communities of color, people speaking, the native language of those communities, talking about maternal mental health in culturally relevant ways is so important.

ANDREA: Amy-Rose hopes that health care providers can begin suggesting treatment options that work for a diverse group of women. For example, antidepressant medications can be lifesaving for some women, but they don’t work for all.  And for other women, the stigma in their community can make them a barrier. One treatment option that may be more accessible is self care, which involves focusing on sleep, nutrition, hydration, and exercise.  

AMY-ROSE: Things of this nature are actually evidence-based treatment and preventative measures. And frankly, that's going to be much more culturally relevant to a lot of the communities that we're trying to reach because medication is highly stigmatized in white resource communities, it's much more so in some communities of color.

ANDREA: While self-care is proven effective, it works best if used as a preventative measure and in conjunction with other treatments.  Amy-Rose hopes that the changes made in Utah will help mothers and providers to identify treatment plans that work best for each individual.

AMY-ROSE: We just want to send the message, get treated. We don't care how you do it, but treat it, treat it early, treat it often, keep seeking help. If you’re offered a tool that doesn't appeal to you, it doesn't fit in your value system, it doesn't make sense to you, keep reaching out to find what does. I hope that there is a day where it doesn't matter the kind of provider you talk to, they're going to give you several different options and they're going to follow up with you to see what's working.

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ANDREA: In addition to therapy, self-care, and medication, Amy-Rose points to community and conversation as critical tools in the treatment process.

AMY-ROSE: It's almost a universal experience for anyone with any kind of mental health issue that we feel alone in the experience.

ANDREA: This feeling of isolation can lead to increased stress, which can affect women, both physically and emotionally.

AMY-ROSE: So when we create these communities of support that say, you're not alone, you're not to blame, but people that look like you and think like you and speak like you, your body can feel safe.

ANDREA: In this safe space, Amy-Rose says we can begin to destigmatize mental health.

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AMY-ROSE: And I was talking about this with a client today. And she was saying, well, you know, is postpartum depression, anxiety, Is it a real mental illness? And I said, I think of the human experience is really being on a continuum, a constant continuum of emotional health or emotional wellness. And I don't think there's a human alive that is going to escape time on earth without being somewhere on that continuum. And I think that's a much more rational, healthy, less stigmatizing way to think about emotional health.

ANDREA: She points out that mental health fluctuates… for everyone. This is especially true for new moms as they try to balance stress, environmental changes, hormones, and lack of sleep.

AMY-ROSE: So, let's have a dialogue about how common it is for us all to have symptoms of depression and anxiety. And it does not mean that you're a bad mom or that you don't love your children. These symptoms, by the way, um, affect even at higher rates, adoptive parents, same sex parents as well. No one is immune.

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ANDREA: After the death of her sister, Megan has seen how common these struggles are and what can happen when we listen.

AMY-ROSE: You know, anytime we can share our story and someone can connect with that, that gives them permission to do the same.  If there’s anything I've learned from all of these stories that we've heard from all of these women, um, that they are stories of hope. That in the midst of them, there is, there's the hard and there's the, the challenge and the darkness of it. But anytime we can bring something out of the darkness and into the light, it just indicates that it’s something that doesn’t deserve to be hidden.

ANDREA: It’s hard to let go of the myths that have guided us, but Megan wants women to know that true stories of motherhood with all their ups and downs - are inspiring in their own way.

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ANDREA: To learn more about perinatal mood disorders, PSI Utah, or The Emily Effect go to pbsutah.org/morethanhalf

This is a PBS Utah Production. Subscribe to More Than Half wherever you get your podcasts. We’d love to hear your thoughts, so please rate and review, and don’t forget to like and follow PBS Utah on Facebook and Instagram.  

Research, interviews and production for this podcast by Alicia Rice and Ashley Swansong. I’m Andrea Smardon, and I hope you’ll join us for the next episode of More Than Half.

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