Content warning: This article contains mentions of suicidal ideation.

Everyone knows about Premenstrual Syndrome (PMS), the typical scapegoat for any woman’s unexpected behaviour (this is sarcasm, delete that angry paragraph). While PMS is commonly discussed or at least known about, a more severe disorder remains unknown to most adults, including women. 

Premenstrual dysphoric disorder (PMDD) is a cyclical mood disorder that an estimated 475,000 Canadians suffer from. In the week before menstruation, PMDD presents as extreme mood shifts that can affect one’s relationships, work, family, social responsibilities, and overall quality of life. Other symptoms, which include low self-worth, suicidality, and self-harm typically alleviate during menstruation. The impact of PMDD is likened to that of major depressive disorder.

Feminist disability theory 

Could you imagine dealing with a crippling condition every month but not being able to get help from a professional? PMDD is such an under-recognized illness that patients take an average of 20 years to get diagnosed. I can only describe this lack of diagnosis as disappointing but not surprising since I have faced the same dismissal from the doctors I went to about the same issues.

Normative theories or definitions of disability do not account for our physically and mentally diverse bodies, and they are often inflexible in comparison to how varied an individual’s experience of a disability can be. Feminist disability theory — a branch of philosophy and sociology which aims to address the power dynamics in disabilities — challenges the idea that disability looks the same for everyone, regardless of what ‘category’ they fall under. 

On paper, normative views label a person as either abled or disabled. In reality, ability and disability are not distinct categories. They are intertwined and fluctuate depending on the individual’s body, mind, and prior experiences. It is unreasonable to expect one definition of disability to fit every single person, so feminist disability theory offers a more fluid approach.

Similarly, time can also be defined according to one’s personal schedule. Crip time is an alternative to the normative definition of time and is an extension of feminist disability theory. In PMDD, one’s crip time describes one’s personal schedule and life experience as a result of the disorder.

PMDD is an episodic disability, which means that its symptoms surface in cycles, ebbing and flowing in time with one’s menstrual schedule. The Canadian government — which recognizes temporary, permanent, and episodic disabilities — uses ‘disability’ as an umbrella term with no harmonized definition, outlining the complexity of disabilities in line with feminist disability theory. It’s hard to assess what a regular month looks like when one lives with PMDD.

Lived experiences with PMDD: From the temporal cloud to invisible suffering

Awareness and support for those with PMDD is low, and it can be a devastating disorder for both affected individuals and those around them. Though there is still much research to be done on causes and treatments, one 2024 study published in Women’s Reproductive Health attempts to convey the lived experiences of people with PMDD.

The study results from a then-McMaster student’s undergraduate thesis and is built on concepts of feminist disability theory. Serena Habib — who is now pursuing a dual-degree Master’s in Public Health and Social Work at Columbia University — spoke in an interview with The Varsity about her motivations. 

“There were just so many gaps in awareness and knowledge and access to support, I really struggled to find a clinician that would work with me, and I just felt really desperate in my own experience,” she said. 

Through qualitative interviews with 10 Canadians living with PMDD, Habib uncovered three main themes: the temporal cloud, the ‘mis-sings’ — misdiagnosis, mistreatment, misunderstanding — and invisible suffering. The temporal cloud involves the imagery participants used to describe the phases of PMDD. Habib splits the rhythm of PMDD into two phases, one in which “the dark cloud descends” and the other, “the calm before the storm.” 

When the dark cloud descends, participants describe a sudden intense self-hatred, brain fog, lack of self-control, low self-worth, dissociation, overwhelming fatigue, and an intense feeling of being ‘trapped’ by the anxious pressure associated with the overall experience of the PMDD cloud. All 10 participants experienced suicidal thoughts during this period and described the calm before the storm as a return to their normative selves.

The length of a PMDD episode varies by the individual, but severe symptoms typically occur during the luteal phase, leading up to menstruation — two weeks out of every month. With nearly half of one’s life being impacted so regularly, it may seem shocking that PMDD is misdiagnosed and mistreated. 

Habib found that “oftentimes there is a lot of medical dismissal [around PMDD].” These ‘mis-sings’ led participants to feel invalidated and often prompted them to hide their symptoms for the two weeks they occurred. 

All of these together create a very unwelcoming space for those with PMDD to exist, leading to Habib’s last finding: the invisible suffering. Two participants reported that they internalized their symptoms so well that their partners were unaware of their clouds for years. Maintaining normalcy while battling this level of emotional and mental strain can only add to the intense fatigue that people with PMDD face. When combined with the perpetual dismissal of women’s voices in healthcare, it seems near impossible to find support from professionals.

When you’re perfectly capable of fulfilling your roles half of the month, how do you explain what’s really happening? How do you get help?

“Advocate for yourself and talk about it”

Habib has been an advocate for PMDD for years since she started an Instagram account to find others with the same experiences. The page spreads awareness of the disorder, as well as resources and support for those with PMDD. Habib also recommends the International Association for Premenstrual Disorders website to anyone wanting to further educate themselves.

Habib offered this advice: “you might find that other people have similar experiences, and you’ll find support and people that can help you.” 

For anyone who identifies with this disorder, you are not alone. Experiencing suicidal thoughts right before your period may be regular to you, but learning more about your body is always worth it. You do not have to suffer alone. 

If you or someone you know is in distress, you can call: 

  • Canada Suicide Prevention Service phone available 24/7: 1-833-456-4566
  • Good 2 Talk Student Helpline: 1-866-925-5454 
  • Ontario Mental Health Helpline: 1-866-531-2600 
  • Gerstein Centre Crisis Line: 416-929-5200 
  • U of T Health & Wellness Centre: 416-978-8030
  • Toronto Suicide Crisis Helpline: 988

If you or someone you know has PMDD, you may contact:

  • Toronto Women’s City Alliance: 416-483-1873