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  • Writer's pictureAutumn Gordon-Chow

Tell me what it's like: Living with Premenstrual Dysphoric Disorder

Updated: Apr 26, 2023

Premenstrual mood disorders are not unlike other “invisible” illnesses; there are no externally obvious signs. Despite the invisibility of Premenstrual Dysphoric Disorder (PMDD), it disrupts many aspects of a sufferer's life. Things like, binge eating, rage, anxiety, depression, suicidal ideation, brain fog, and physical symptoms like insomnia, fatigue and weight gain, make it hard to maintain relationships, function socially and professionally and uphold roles in parenting, caregiving and partnership. Premenstrual mood disorders are often misdiagnosed or dismissed altogether. Minimized by professionals, peers and family as a normal part of the female reproductive cycle, there is a critical need to raise awareness and initiate change. For starters, premenstrual disorders aren’t the comic relief lines offered up by pop culture over the years. On an episode of Friends, Chandler once says, "I'm just looking for a woman who doesn't scream like a banshee four days out of the month." What the audience sees (and lovingly laughs at) is the trivialized emotional impact menstrual cycles have on women. What people don’t realize is that for 1 in 20 women, the disruptive impact of their cycle is profound. For some, it is dire.



PMDD is characterized by severe mood and cognitive symptoms occurring only during the luteal phase of the menstrual cycle. It was recently added to the International Classification of Diseases 11th Revision (ICD-11) under gynecological diseases.(1)

The International Association of Premenstrual Disorders (IAPMD) describes it as “a severe negative reaction in the brain to the natural rise and fall of estrogen and progesterone.”(2) It is also classified as a mental illness in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition (DSM-5). As previously mentioned, it affects roughly 1 in 20 women or AFAB (assigned female at birth) individuals and is often misdiagnosed as bipolar disorder.


When I was a kid, there was a time at the neighborhood pool where a boy, 13 or so, was being disrespectful to his mother. One thing he said stood out to me at the time and has continued to all these years later. In the midst of the mother/teen spat, he patronizingly yelled, “What is your problem? Do you have your period or something?” It felt icky at the time, but now, so much more so. Have I always lived in a society where women get told off by boys/men for having periods? I suppose I have. In some ways, even long before I knew what PMDD was, I knew that, socially, periods made us vulnerable. What I know now, is that the vulnerability is far more complex than many people are willing to admit.


I was diagnosed approximately 6 years ago (after being misdiagnosed with bipolar disorder), when my symptoms became significantly worse after the birth of my triplet boys. I’d been experiencing symptoms for many years prior to this point, but once I began tracking symptoms it became obvious they were timed precisely to my menstrual cycle. Since diagnosis, I have become acutely aware of my body’s response to the natural shift of hormones and manage my symptoms better (to some degree) simply based on this awareness.


This blog is the most honest account of my PMDD that I have made publicly. I have not felt a sense of shame or embarrassment by it, necessarily. But as a child of the 80’s, navigating adolescence in a home with a single dad and brother, conversations about menstruation weren’t had. Even into adulthood, talking about the connection between my cycle and my moods felt awkward and confusing. It hasn’t been until more recently that I have had the opportunity to learn and acknowledge the real clinical manifestation of PMDD. Though some of my behaviors during PMDD are nothing to be proud of, I have reached a place where I can recognize my shortcomings, having enough self-awareness to be gentle and forgiving with myself.


So, what is it like?


Living with PMDD


Day 19 (of my menstrual cycle):

The morning sunlight pushes past the bedroom curtains brightening the space around me. Before I even lift my eyelids, I feel my body urging me out of an unrestful sleep. My teeth are held tightly together by a tense jaw. The involuntary clenching is so strong I feel like my teeth might crumble. The beat of my heart feels irregular, quick. I have tossed and turned most of the night. Waking often with feelings of nervous unsettledness. The bodily sensations manifested by anxiety are familiar, the catalyst however is unclear. Is it a fluke? Bad dream? Am I getting sick? Or is this the start of the recurring 12-14 days of hell I experience every month? Any minute, when my kids jump in the bed, will the stimulation of noise, movement and touch stir the brewing irritability? Will I be able to reign it in? Or will it bubble over uncontrollably, becoming anger, or worse yet, rage?



Day 20-26ish - Ovulation Day

The fatigue is debilitating. I manage to get through a few hours of work before the overwhelming urge to close my eyes becomes impossible to ignore. On the day it is most extreme, I know that ovulation has occurred and the worst of my symptoms are right around the corner. Managing my symptoms comes from the learned familiarity I have with my menstrual cycle. I know what’s coming. For me, knowledge has been a really important factor in coping with PMDD (along with prescription medication).


*A note about the timing of PMDD symptoms and cycle length. The average length of a menstrual cycle for most women is 28 days. The luteal phase (which is when PMDD symptoms are present) begins at ovulation, which for the average cycle, is on day 14. My cycles are much longer than most and change from month to month (with an average of 40 days). Therefore, my luteal phase doesn’t begin on day 14, but starts somewhere between day 20 and 26. My account of living with PMDD follows my own cycle’s timeline, using estimates.



Days 21-40ish - The Two Weeks of Hell

Here we go. I know what’s happening. I know my thoughts are contaminated. They are murky and littered with negativity, anger, and desperation. I know the mood isn’t reflective of who I am or what I want, yet I cannot turn it off. I believe the lies, even knowing they are not true. The mind is a powerful thing. Knowing something doesn’t make it real. Not when PMDD has taken control.


My kids are finishing dinner, what little they ate, with more of it on the floor than in their swollen toddler bellies. I made chicken and rice, a staple. Grains of sticky white rice strewn across the kitchen floor. It is impossible to sweep. Have you tried? Infuriating.


I’m moving across the kitchen floor constantly. Picking up sippy cups, placing them back on highchair trays. Refilling the milk, turning off the oven, then taking my one bite of dinner from the plate on the counter. Back to picking up the sippy cups again. Eagerly encouraging my littles to eat, eat, eat. My sensory input is teetering on overload as I listen to the banging sound of the sippy cups as they crash to the floor again and again. The warm muggy air of summer causing sticky sweat to settle above my brow. The smell of today’s diapers wafting from the trash can by the door. I tend to remain barefoot at home, for better or worse. Today, for worse. Much, much worse. Shuffling across the floor with my bare feet, I step in a landmine of wet, maggot-like rice. It sticks to the sole of my foot. Grabbing ahold like Velcro, feeling like a vice grip. I lose control. I can’t take the noise, the heat, the smell. But most of all, I can’t take the feeling of the maggots eating their way into the flesh of my foot. I am so fucking angry. The maggots are making me want to set my foot on fire, to kill them and to stop my foot from feeling anything, especially them. But. It’s only rice. I know this to be true. Nonetheless, the overwhelming sensations, the need for relief, the disgust, all of it brings me to my knees and I sob.


I pull myself together, help the kids down from their highchairs and into the living room so that I can clean the mess. Abolish the war zone that tried to eat me alive, starting at the soles of my feet. I clean in an anxious frenzy. Heart pumping fast, hands unsteady with that anxiety tremor.

The remainder of this 14 days has its ups and downs. I have moments of anxiety and panic over my ability to protect my children from harm. I have moments of overwhelming guilt for being so unstable. I have nights of exhaustion so deep in my bones, I sleep for 12 hours. The days following, my productivity is bare minimum at best. An undertone of self-loathing remains present for the duration. Sometimes being so nasty, I wonder how I could have ever been given the incredible fortune of motherhood. Other times it just sits there, occasionally poking me with its little finger.


“You’re useless. Fat. Ugly. You have NO friends. Your kids hate you.”


These two weeks of hell are a constant battle between knowing and feeling. The grounded me knows that it will come to an end, that the internal struggle won’t last forever. While it does, I count the days. I anxiously anticipate and desperately want this cycle to end. For the start of a new one is when relief comes.




Day 1 - Period starts

Praise Aphrodite! For the beautiful crimson flow of relief that I welcome with enthusiasm and delight!


Order has been restored. While my insides squeeze so tightly I feel as though my uterus will explode, the pain is nothing. It is welcomed. It is followed by self-love, peace, fulfillment and calm. It is followed by normal. It is followed by the agreement of my thoughts and feelings. My knowing and being.


And it begins all over again. I function in the first two weeks of my cycle like I believe is true to who I am. I feel and think with a fair amount of clarity. I handle the ups and downs of motherhood with humanness, sometimes even grace. I am productive (mostly), generally happy, and feel a sense of self-worth and accomplishment. I find joy where it lives, and handle sadness with hope. During my good weeks I celebrate the good and cherish the positive. I live for this time. I bask in the light. Because, not far down the road, the darkness awaits.


Coping with PMDD


Thank you for taking the time to look into my experience living and coping with PMDD. If you are experiencing similar symptoms during the 2 weeks before your period begins, please speak with your health care provider. If you don't already, track your symptoms. It'll be helpful in getting a proper diagnosis. Treatment for PMDD is available and in many cases can be life saving. See below for some helpful resources.



If you just need someone to chat with, or ask questions, my inbox is always open. xo

 





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