Editor’s note: Premenstrual Dysphoric Disorder (PMDD) shows up 1-2 weeks before your period and usually ends after bleeding. Researchers still don’t know the cause of PMDD, though some research indicates hormonal changes play a role. Bleeding humans are also often misdiagnosed. Andrea Chisholm, OB/GYN at Harvard Medical School, shares: “Sometimes they go undiagnosed, being told they are just hormonal and need to get over it. And sometimes they are over-diagnosed. Unfortunately, it is all too common for women with PMDD to be incorrectly diagnosed with bipolar disorder.” PMDD is a mood disorder and one that affects 5-8% of bleeding humans. We reached out to Lenea Sims to share her story with PMDD. It’s raw and impactful, and I hope her story helps highlight real menstrual empowerment, which is to share the spectrum of our menstrual experiences.
My luteal phase basically feels like taking a vacation with people you don’t really know that well, or that you don’t really like all that much. At first it’s like, “Oh lovely! A nice two week period of down time. This should be relaxing!” But then it rolls around and it’s actually just anxiety ridden and exhausting, and you feel so ashamed that you ever agreed to it in the first place. By week two, you really just want to go home. And then towards the end of it, you kind of forget home even exists. Instead, it just feels like this is life now and you’re just going to be on this trip from hell until the end of time. Then, as quickly as it came, it’s gone. You’re home and all you want to do is catch up on everything you missed so you can forget about that awful trip as soon as humanly possible.
Welcome to PMDD.
At about day 14 of my cycle each month, I can physically feel a subtle drop off in my mood. I get groggy, it takes me forever to get out of bed. As days wear on, I also get increasingly anxious. Some days, I overthink everything to the point that I am both physically exhausted but mentally unable to go to sleep. Other days, I take on all of the classic symptoms of depression: I can hardly get out of bed at all, I have no interest in all of the things that usually thrill me, I’m just sad for no real reason, I don’t want to see or talk to anyone but I also feel incredibly alone. And God forbid anyone try to talk to me about what’s wrong, or even look at me with a slightly worried gaze. The hypersensitivity I feel during these weeks is off the charts so I’ll likely tailspin even further when “provoked.”
The hardest symptom for me, though, is the loss of control I feel. I am acutely aware that what I’m experiencing is chemical, but I also fall into dysphoria and become convinced that something has forever altered my reality. I feel like I’ll just be that way forever, and that I must just be a totally hopeless, totally confused, totally bad person. At its worst (usually the day before my period starts), these feelings cause enormous anxiety attacks that can last anywhere from a few minutes of panicked crying, to a full day of incessant monkey mind.
More than just the physical symptoms, the shame I feel around them has had an incredible impact on my work and relationships. I read in a forum once that having PMDD is like living half a life and I couldn’t agree more. For half the month, I – an obsessive overachiever since birth – am reduced to a quarter of the output I can usually handle. This makes it nearly impossible for me to gain traction on projects or consistently create in the ways I dream about. I watch other people have their perfect Instagram feeds, growing their audiences, expanding their businesses, and I feel so ashamed that I physically cannot do the same.
Dysphoria (and my own penchant for dramatic storytelling) also makes it really easy to convince others of problems that don’t exist. Anxiety is contagious after all.
The dysphoria I experience creates – by definition – problems where there are none to be found. An intimate relationship, as you may imagine, is a real hurdle. Though we have language and a game plan for it now, my partner and I suffered for months with spats caused by my hypersensitive reactions to things that, during other times of the month, would have absolutely no effect on me. It’s hard not to fear, even my more sane parts of the month, that those issues haven’t caused some permanent damage to our relationship, and getting over that anxiety is difficult still. Dysphoria (and my own penchant for dramatic storytelling) also makes it really easy to convince others of problems that don’t exist. Anxiety is contagious after all. I remember once, in the heat of the moment, explaining one of those hypersensitive moments to a friend and her telling me that my relationship was so up and down that it seemed to mimic the patterns of abuse.
She was being protective of me, but I was so stunned at the time I totally ignored her. Now I realize that she was right, but it was me that was, in a way, my own emotional abuser. For years, I created issues out of thin air, effectively gaslighting myself, and then tried to pin the blame on an outside force, literally incapable of recognizing the cycle I was both beholden to and unconsciously creating. It was this moment, though, that made me finally wake up to the patterns happening in my life. It wasn’t until I finally put two and two together, and saw that these fights were all happening during my luteal phase, that I finally had the courage to research more about PMDD. And that’s really the thing, isn’t it? Sometimes, it takes confronting the things you have the most shame about to see clearly that it’s just a shadow. Dark and scary, yes, but also no more a part of you than your thoughts or your energy. In other words, your shame and your shadow can be changed once you just acknowledge that they’re there.
Having a diagnosis reminds me that there is a reason for the way I feel, but being willing to face my diagnosis has allowed me to entirely change the way I feel about it.
I’m grateful to say I’ve come a very long way since my rock bottom moments of dysphoric self-abuse. With the power of diagnosis, and the language that comes with it, I feel stronger and more hopeful than I have in years. I’ve found incredible support in the form of supplements, holistic healers, as well as my partner and friends who all agree to hold space for me each month as I need them.
But more importantly, I’ve learned to address my shame. Having a diagnosis reminds me that there is a reason for the way I feel, but being willing to face my diagnosis has allowed me to entirely change the way I feel about it. For the first time, instead of judging myself through each luteal phase, I choose to embrace it as an opportunity for research. It’s exciting to track my progress and share what I’ve learned. Instead of fighting my low productivity or my hypersensitivity, I choose to be a little gentler, a touch kinder, an ounce more forgiving of myself than I was the month before. These steps have all lead me to here: becoming intimate with my PMDD. In owning this part of me that I wanted so badly to ignore and to hide, I’ve begun dismantling the shame I’ve held for years, and begun building acceptance for myself in its place.
photography by Nicolette Daskalakis