We Need To Talk About Black Women’s Struggle With PMDD

“I feel everything everywhere all at once during that time [of my menstrual cycle],” Fiona tells Unbothered over Zoom, looking towards the sky. “The emotions are so big and so huge, and there are many running thoughts of suicide. It can be debilitating,” she confesses, sighing. Based in the US, Fiona Williams is in her 30s and suffers from premenstrual dysphoric disorder (PMDD), an under-researched and undertreated mood disorder that can cause extreme emotional and psychological distress up to a week before a person’s period. Online it has been dubbed “premenstrual syndrome (PMS) on steroids,” but for sufferers, this explains little of the hormone condition’s life-altering impact: nearly one in five people suffering from PMDD can experience feelings of suicidal ideation and more than half battle with self-harm. Other symptoms include rage, anxiety and sweeping bouts of depression which typically go away two to three days after their period starts. “You start going down this spiral of everyone hates me and everyone is out to get me,” Fiona continues. “And as a Black woman, you're just expected to be strong and see through it all.”

As a Black woman also living with the effects of PMDD, I relate to the challenges of navigating a mental health issue where the unique experiences of Black sufferers are underrepresented. PMDD is said to impact one in 20 women and people with periods in the UK. In the US, 3-8% of women have it. Despite having these numbers on record, it is unclear how these statistics break down intersectionally. Earlier this year, a UK-first research study into PMDD  launched with plans to explore five main areas concerning the disorder, including suicide and self-harm prevention, treatment, diagnosis, and “PMDD’s impact on life.” The researchers are aiming to understand how to prevent depressive episodes that lead to suicidal ideation, as well as identify the different barriers to receiving support. They stress that more research is needed to explore insight from people of different cultures, ethnicity, gender identity, disability and socioeconomic status. 

The intersection of race and mental health presents a heavy burden for Black women living with PMDD or seeking a diagnosis. “Unfortunately, PMDD is often dismissed or minimised, perpetuating harmful stereotypes that undermine the experiences of those living with this condition,” says London-based Black mental health advocate and life coach Nikki Wilkinson. “As Black women, we face additional layers of stigmatisation due to racial and gender biases. The intersection of race and gender can create an environment where our struggles with PMDD are invalidated, overlooked, or attributed to stereotypes that depict Black women as "angry," "irrational," or "difficult." 

For Black women like me, PMDD feels particularly precarious in professional situations where code-switching (adjusting behaviours, expressions and speech to fit in white-majority spaces) is a means of survival in competitive and racially biased arenas. I can’t afford to be seen as angry or irrational, despite my hormones’ plans. Yet, one week a month, my carefully perfected image crumbles; it’s harder to bite my tongue, criticism can lead to uncontrollable tears, anxiety peaks, my self-esteem plummets, my outlook becomes bleak, and I am uncharacteristically prickly with a mean streak that can lead to hurt feelings and fractured relationships. I work hard to keep my battle with PMDD away from view because I am hyper-aware of the risk to my livelihood.

Fiona understands all too well. “As a Black woman, there are all these expectations of you. You still have to pick yourself up and put yourself together, no matter what's going on,” she says.  “I always knew that my rage wouldn't be acceptable. When I was younger and I didn't know about PMDD, it was always the arguments with my mum when the rage would come out. I would want to do things I wouldn’t normally do like throw things or punch the wall, but it was always in secret, and people did not see those meltdowns. I have spent a long time bottling those emotions up.”

During our conversation, Fiona and I dared to say the quiet parts of our PMDD diagnosis out loud: how the “strong Black woman” trope is still pervasive within society and our communities, making living with the most vulnerable and mentally debilitating aspects of PMDD a particularly isolating experience.“PMDD is such an internal struggle, especially for Black women because we have to show up a certain way,” she explains. “I've always been called ‘overly sensitive’ and so for a long time, I just thought that's what it was,” she adds. “Growing up around Black families, depression wasn’t just something you said, and if you did have it, you just got over it.”

Fiona has taken to TikTok to speak about her PMDD diagnosis in hopes that more Black women suffering could feel seen and seek help if necessary. She’s not alone, and the “Black Women PMDD” hashtag is full of stories about Black women who have found a PMDD diagnosis later in life, including British mixed-raced influencer Jayde Pierce, who described her experiences with PMDD—including depression and suicidal ideation—as “my body being taken over by something that’s not me.” Fiona hopes sharing her experiences could lead to more resources for Black women with PMDD: “Where are our statistics? How many of us are struggling with it? Why is it so quiet?” 

There is a concerning lack of PMDD research overall. As psychologist Eleanor Morgan explained in an article for Refinery29, there are “massive sinkholes” in research addressing what causes PMDD in the first place. R29 reported in 2019 that PMDD is listed in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition as a "depressive disorder not otherwise specified", yet some health professionals have been known to deny its existence. While it can occur alongside other mental health problems, PMDD is often falsely diagnosed as bipolar disorder or major depressive disorder. Considering Black women are more likely to be diagnosed with bipolar disorder than any other demographic in Britain, there is a reasonable argument for more race-specific research about PMDD. 

“I thought that [my PMDD] was bipolar disorder,” Fiona shares. “But when I started tracking my mood, there was such a strict pattern. It was actually Reddit that told me it was PMDD, and then I told the doctor.” Fiona also has ADHD (an executive function disorder that is known to exacerbate the symptoms of PMDD), and it took multiple attempts to find a doctor to help diagnose her PMDD. “I went through so many doctors before somebody sat down and listened to me,” she reveals. “I had to learn to be my own healthcare advocate, especially when it comes to mental health. And navigating the mental healthcare system in the United States is an absolute nightmare. I'm just lucky that I can work from home and I make enough money to find a good Black woman psychiatrist who understands and listens to me.”

Much like Fiona, I was in my early 30s before I received my PMDD diagnosis after years of being told it was just PMS. I began tracking my mood to get ahead of my symptoms by using the Apple-supported tracking app Her Care each month and noticed the cyclical pattern of my moods. My doctor also told me to reconsider the hormonal coil,  SSRI antidepressants and cognitive behavioural therapy (CBT). Yet, as Eleanor wrote for Refinery29, “treating premenstrual distress is often a case of trial and error because no two women are the same.”

It is hard to ignore that many Black women dealing with PMDD often find their symptoms are overlooked due to enduring racial and gender biases within the mental healthcare systems in both the UK and the US. Just last year, a study led by researchers at NYU Rory Meyers College of Nursing and Columbia University School of Nursing, found depression may show up differently in Black women resulting in “underdiagnosis and undertreatment." In 2020, a study by mental health organisation Mind determined that Black British women are more likely to experience a common mental health problem (29%) compared to white British women (21%), yet the racial health gap meant Black British women were least likely to seek treatment. The same study also found that one in three British minorities reported stigma and discrimination from health professionals when seeking mental health support. Similar US research shows Black women’s pain is not always taken seriously, which can lead to a lack of necessary diagnoses and an overrepresentation of Black patients in mental institutions. 

Increasingly, understanding the links between race and mental health issues has become more critical. In 2021, Time magazine reported that “suicide among Black girls is a mental health crisis hiding in plain sight,” referencing the startling rise in suicide death rates among Black American girls aged 13 to 19 over the past decade. It’s a subject close to Fiona’s heart and why she speaks candidly about her previous experiences with intrusive thoughts as a result of PMDD. “I thought that everybody had fleeting thoughts about driving off the road when they were driving. I thought everybody had suicidal ideation sometimes but they don’t. I thought that was just PMS but it’s not.”

Access to Black therapists and adequate medical intervention is just one part of learning to deal with the scariest parts of PMDD. For Fiona, alongside seeking professional treatment, finding space to be cared for during the darkest periods of her PMDD struggle has been instrumental in managing her symptoms. “My fiance and I started making a list of low, medium and high demands for the days when I struggle to get out of bed. For example, low-demand dinners are just frozen pizza.”

There is still much to learn about PMDD. But, for sufferers in the meantime, there is much to learn about ourselves. Every month when the monsters of low mood take their grip, I make a point of reminding myself that it is not me, it’s the PMDD.  “I experience PMDD symptoms ten days a month — that is a third of my life. And I understand that I am going to struggle with this the rest of my life,” Fiona agrees. “Regardless, I should still be able to live my life and I will.”