Have I mentioned PMDD?

If you are a human with a uterus, you may understand this post very intimately. If you are related to, care for, or have ever encountered a human with a uterus, you will likely also understand this post, but from an entirely different, outside perspective.

Either way, everything I’m about to share here is very, very real.

This post is also very, very long. Just wanted to give you a head’s up before you dive in.

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Fun fact:

Did you know that the terms hysterical and hysteria were used in early Latin to describe anything “of the womb?” As language evolved, “hysteria” became a condition applied only to women. Women were given hysterectomies—literal removal of their reproductive organs—to free them from their monthly craziness, or any other expression of heightened emotion that seemed irrational or threatening to the men around them. There’s more linguistic gender-shaming where that came from, too. This Guardian article is a good starting point if you want to learn more.

I think it’s fair to say that women get the short end of the stick in almost every aspect of modern life, not just vocabulary. We still earn less than our male counterparts, are being subject to inhumane and unconstitutional restrictions on what we do with our own bodies, and experience depression at nearly twice the rate of men.

This last one—depression—is inextricably linked to every other inequity and bias we face.

According to Mental Health America:

Many factors in women may contribute to depression, such as developmental, reproductive, hormonal, genetic and other biological differences (e.g. premenstrual syndrome, childbirth, infertility and menopause).[4]

Social factors may also lead to higher rates of clinical depression among women, including stress from work, family responsibilities, the roles and expectations of women and increased rates of sexual abuse and poverty.[4]

I could build an entire website about the social factors, but I’m sure there are a bajillion of them already out there. So I want to focus on something else here. Because it’s something I have struggled with for…well, I’m actually not sure how long. It’s not often talked about. Shit, I even forgot to mention it in my long list of things I’ve been working through in my bio. And it’s so incredibly scary for that exact reason. Because it’s not talked about, it’s often not even considered or diagnosed by medical professionals.

What is this unspoken beast?

PMDD. Premenstrual Dysphoric Disorder.

I would imagine, regardless of your gender identity, you’re familiar with PMS. It’s different for everyone, of course. But however it manifests for you, imagine amplifying it by 100 times. And then no one believing that what you’re feeling is real. Including YOU.

I did not know PMDD was a thing until sometime in 2013. It was the year I had the most epic emotional breakdown in my ECD’s (Executive Creative Director’s) office, but not with him—it was me and my CD (Creative Director) at the time. I felt completely broken. Useless. Like I was failing at everything. Unloved and unlovable. Why did I even have that job? No one needed me. And shit, I’m a terrible wife and mom, too. It was like being stuck in a very tight, small glass tube where I could see the world around me, but everything was dark on all sides. And I couldn’t move or breathe. It was paralyzing.

I had a hell of a cry that day. Like full on, falling apart, mess. My CD was (and is) incredibly empathetic, and also has three daughters—although at the time I don’t think any of them were of menstruating age yet. Regardless, he didn’t think I was crazy. He acknowledged my feelings. And he encouraged me to get professional help.

So I did.

I started seeing a therapist, and also started taking antidepressants. They did make a difference…but even when we upped the dosage, I was still experiencing these incredible, debilitating, periodic waves of uncontrollable emotions. Everything would be relatively fine, and then wham: sadness and despair and darkness. It wasn’t consistent, which really confused me. It would be deep and scary and intense, and then the clouds would part and things would feel slightly more manageable again. (It’s probably also worth mentioning that I’ve suffered from hormonal migraines for as long as I can remember, too, so those were also added to the mix.) I could not, for the life of me, figure out what was going on. My therapist didn’t raise any flags. I didn’t even think to look for a pattern. It was just my depression ebbing and flowing. Maybe I was making it up? It wasn’t really that bad? No. I had a gnawing feeling that there was something else at play. So I did what any human in 2013 would do does when their doctor wasn’t giving them the answers they need: I Googled it.

And wouldn’t you know…

There’s a condition, called PMDD, that “is a much more severe form of premenstrual syndrome (PMS). It may affect women of childbearing age. It’s a severe and chronic medical condition that needs attention and treatment.”

There’s a checklist of symptoms that helps distinguish PMS from PMDD. And as I scanned the checklist, I felt like I finally had an answer.

I made an appointment with my OBGYN to talk about it. He listened, agreed that PMDD sounded likely, and recommended that I get back on birth control to see if we could help regulate the hormones that way. But I told him that we were trying to get pregnant again, so that wasn’t an option. His next suggestion was to talk to my therapist. To which I replied something like “I have been, and she didn’t even catch this.” I actually love my OBGYN, so this is not a direct knock on him, but rather the lack of understanding of PMDD in medicine in general. But all he could offer was to try a different dose of my antidepressant, or a different drug altogether, and see if it would help. He did mention that because I had been off birth control since my daughter was born two years earlier, my hormonal patterns may have changed, making the symptoms more noticeable and intense now than they had been in the past. That actually made sense. But it didn’t solve the problem.

I ended up getting pregnant a few months later, and decided to taper off the antidepressants altogether because I didn’t know if they’d cause any harm to the baby. When you’re pregnant, hormones are all over the place anyway. So for the next 9 months, plus a year or so after that while I was breastfeeding, any roller-coaster-y-ness felt pretty normal and expected. (I was incredibly thankful that I didn’t experience postpartum depression with my son as I had with my daughter. Thank goodness for small miracles.)

Flash forward to early 2020, mostly because I don’t remember much of what happened between 2014 and 2020, at least in terms of my PMDD. I had started seeing a new psychiatrist, and gotten back on antidepressants after my dad died in late 2019. They’d been helping, mostly. But for 10 days every month, it felt like I was in a tight, yet never-ending black hole. Not moodiness or irritability, but the feeling that my life was broken. I was broken. I was breaking everyone else’s life around me. I couldn’t focus. I was physically and emotionally fatigued. I shut myself off. I shut everyone else out. My world collapsed inward like a supernova imploding.

This time, I skipped mentioning things to my therapist or OBGYN, and went straight to my psychiatrist. For whatever reason, even though I’d experienced this before, I didn’t notice the pattern. But she did. She asked me how long these feelings had been happening. I told her about 2013. And that this time around, it had been happening for maybe a few months…maybe a year…maybe longer…I wasn’t really sure. I had chalked it up to regular ol’ depression and anxiety in the wake of everything with my dad. She kept probing me though, and thought it was pretty likely PMDD again. (I say “again,” although I don’t know that it ever went away.) Her recommendation was to increase the dosage of my antidepressants for the 10 days before my period to help balance out the hormone fluctuations that were sending me into the spiral. She also suggested trying some naturopathic supplements, like DIM and Vitex Berry, which are often helpful with reproductive issues. (One of the reasons I love her is because she doesn’t just push pharmaceuticals.) So that’s what I did. And the next month, lo and behold, I saw and felt a difference.

It wasn’t a complete 180. I was not a bouncing bubble of sunshine and rainbows. But I didn’t feel like my walls were caving in, either. My emotions were more manageable, and for me, that was a win.

It went on like this, pretty steadily, for about a year. Somewhere in late spring/early summer 2021, I decided that I was feeling better overall, and I wanted to try getting off my antidepressants. In retrospect, this decision was likely a byproduct of mental illness itself, because this was also when my eating disorder and orthorexia were at their peak—and part of why I wanted to get off the meds was because I wanted to see if they were the cause of my weight gain. But it’s often like that. When you’re in the middle of the depression tornado, you can’t see any of the small bits and pieces flying around you. It’s just one big blur, and it feels like the only way out is to bust through the walls like the Kool-Aid man, because addressing those smaller bits and pieces, one by one, would take too long, and be too hard. And because I didn’t even tell my psychiatrist about a lot of what was going on underneath the surface, she couldn’t see it either. I wanted to be a good patient, and that meant doing better—not telling my doctor that I was restricting myself to 1100 calories a day, or almost fainting while working out. That’s a whole other set of people-pleasing, perfectionist issues, though.

Without that context, my psychiatrist OK’d me to start tapering down the dosage. And honestly, I felt like I was doing pretty well without it (eating and exercise stuff aside). And I stopped gaining weight.

Then, last fall, maybe around October 2021, things started getting worse again. By this point I was well on my way to food and body image recovery. I was following Intuitive Eating principles, only engaging in movement that felt healthy, rather than exercising with a calorie burn in mind, and my weight had stabilized, or hit its “set point”— and I was even learning to be OK with that. But the 10 days of Premenstrual Deeply Doomed Darkness (it should really be called PMDDD) had come back. I wasn’t sure if I wanted to get back on antidepressants again, though…because when you’re depressed, needing antidepressants feels like a personal failure. Like you’re not strong enough, brave enough, or “enough” enough to just get through it. This is the internal gaslighting of mental illness.

I ultimately took my doctor’s advice and got back on meds, but this time, we tried a different class, since I was still afraid of the weight gain. We started out at a low dosage again, increasing it in the 10 days before my period. And again, it worked. I now was able to not only recognize the patterns and the symptoms (or so I thought), but also manage them. We decided after a few months to try upping the dosage across the board, not just during those 10 days, to see if it would provide more support with some of the non-PMDD things I was still experiencing. It did.

So here we are now, in March of 2022. I am doing pretty well on my meds. I feel like, most of the time, I’m as close to whatever “normal” is as I’ll ever be able to get. My average days are pretty calm, thoughtful, and productive. I’ve learned that I need to rest. I’ve established boundaries. I’m on the right track. As I am writing this, I should be on the last day of my period, and woke up feeling pretty good today. Which is in stark contrast to how I’ve felt for the last week.

The past 7 or 8 days have been some of the most emotionally intense and exhausting I’ve had in while. While I was in them, I chalked everything I was feeling up to dealing with an unusual amount of heavy stuff going on at work and at home. It was, by anyone’s measure, a LOT. I actually wrote two very depressive and painful blog posts last week that I didn’t share. Not because I am dismissing any of how I felt, but because…well, I guess I was even scared/ashamed to admit those feelings here. They felt like too much.

But despite everything I’ve been through in the past—my history of depression, the meds, seemingly being able to recognize the patterns—I didn’t connect the dots until this morning, when I woke up with a sense of clarity and groundedness. For me, that feels like being anchored in my body rather than my thoughts. Being able to see things that have been hiding in the darkness with a little more light.

That’s when I realized that some what I was experiencing this past week wasn’t just a shitty dose of reality (although I’m not negating the validity of any of it, either—I still have a good bit to work through). But I did recognize that the intensity of what I was feeling, and ruminating on, and falling apart because of, and getting headaches and nausea from, was likely amplified by my PMDD.

I was so in it again that I couldn’t see I was in it again.

FUUUUUUUCK.

If life in general makes you sometimes feel like you’re not enough, then PMDD makes you feel like you’re crazy for feeling like you’re not enough, and that there’s no escape, and that everything is falling apart, and that there’s no way out, and that you are fighting this completely alone, because no one else understands. Oh, and it also provides you with delightful physical symptoms, like migraines and crying and heart palpitations. At least, that’s what the avalanche of what PMDD feels like to me.

This morning, the avalanche stopped. The snow might still be falling, but now it’s not burying me underneath it.

I don’t know if I have a point to all of this, except to say—if any of this is making you think about your own female reproductive/hormonal experiences, don’t immediately chalk up whatever you’re feeling to normal PMS or the everyday stressors of life. It might be. But it also might not.

The stats currently report that less than 5% of women, or people who are assigned female at birth, experience PMDD. But of this population, only 3% are diagnosed or treated. Why?

Not many people who menstruate have heard of PMDD, according to Dr. Jennifer Lincoln, an OB-GYN and author of Let's Talk About Down There.

“People with periods are told from a very young age that periods can suck. PMS is a part of life — just suck it up and deal with it. Those who suffer from PMDD may not realize that their more severe symptoms are something else entirely and that life doesn't have to be like this every month."

- source

But it’s not only people who suffer from PMDD who don’t realize it’s a real thing, and that we don’t have to live like this. It’s doctors and social systems, too. It all goes back to those etymological roots of “hysteria” I mentioned way back up at the beginning of this post. So much of women’s experiences are still dismissed or stigmatized.

It may not be right, but while we still have to take so much of our own well-being into our own hands, it’s at least reassuring to know we don’t have to navigate it alone—and that what we’re feeling is not our fault.

It’s not your fault.
It’s not my fault.
Hormones are real.
Emotions are real.
Stress is real.
Burnout is real.
Overwhelm is real.
Depression is real.
PMDD is real.

Do not let the world, or the world’s influence on your mind, convince you of anything otherwise.