Closer to Fine

If I’d been born into a red tent, maybe none of this would have happened…

I recently got diagnosed with something called PMDD or Premenstrual Dysphoric Disorder. By that, I mean I diagnosed myself, and I suppose I’m allowed to do that now that I’m a clinical counsellor. All it took was 27 years, a $60,000 degree, and one final dark night of the soul during the luteal phase of my menstrual cycle this past July.

To those of you for whom the word ‘luteal’ is new, like it was for me this past summer, it loosely translates as the time when the wheels fall off for folks with PMDD. Scientifically speaking, it’s the second half of a menstruating person’s monthly cycle, when between ovulation and menstruation, an egg travels down the fallopian tubes. This is marked by a rise and subsequent fall in progesterone. Whereas progesterone has a calming effect on most people, new research shows this may not be the case for those with PMDD. In my case, and for at least one in twenty menstruating others, as I’m now learning, it wreaks total havoc on the emotional centre of the brain. A peer recently commented, “in a couple short weeks a month, I can destroy my whole life.” This way of reacting to progesterone is similar to how some people feel happy when drinking alcohol, while others become depressed and angry.

I didn’t know any of this, and hadn’t heard the word ‘luteal’ until a couple months ago, because I’ve grown up in a patriarchy. The sacred cycles of fertility and creative life force in women and people assigned female at birth have not simply been ignored, but deliberately suppressed.

Because this is systemic, I’m not the only one who missed my PMDD diagnosis. Four psychiatrists, three psychics (regrettably), two naturopaths, six counsellors, five MDs and one traditional shamanic healer from the Amazon all missed it too. To her credit, the Amazonian healer came the closest when she said that I had to come to terms with being a woman by embracing my sacred, divine life force. Though I didn’t love her suggested method — finger painting with my own period blood — I gave it a try, because I was just that desperate. My mom is really the one who caught it first (not that it’s contagious, though they do think it’s genetic), but neither she nor I found the words for it until now.

The first time I saw the acronym ‘P-M-D-D,’ I was in grad school flipping through my copy of the Diagnostic & Statistical Manual of Mental Disorders (known colloquially as the ‘DSM,’ or the bible of listed mental health conditions). It resonated somewhat for me then, but because I paid as little attention to my periods as possible (I saw them as a shameful inconvenience that I’d spent much of my life trying to ignore and plow through), I didn’t dive any deeper.

Another reason I didn’t associate my wildly volatile ups and downs with my periods was because the waves of despair and overwhelm hit me so early in my menstrual cycle (sometimes two weeks before my period) that I couldn’t connect the dots. If my life fell apart every time I started to bleed, the hormonal link may have been a little more obvious. Also, I was on ‘the pill’ at the time and felt a lot more stable than I do now, which is one of the pieces that finally clued me in to my condition. Notably, the two times in my life I have gone off the pill required me to move back in with my parents, unable to hold a job because I couldn’t stop weeping. I am lucky they were there to catch me.

It’s hard to have perspective on yourself sometimes.

After so many years, I started to think it was just me, or that maybe this was my personality. And worse, I wondered if maybe spending one week happy, creative, energized and full of ideas, then weeping and unable to leave my bedroom the next was my unique weakness and character flaw...

What the DSM describes though, are not character traits at all, but significant physical and emotional symptoms caused by a physiologically increased sensitivity to particular hormones. I took my copy of the DSM off the shelf the other day and lo and behold, I meet all the diagnostic criteria for PMDD. Like, if this were a multiple-choice exam, I’ve aced it with 100%.

A REALLY SHITTY ROOMMATE

Living with PMDD is like having an awful roommate (that you didn’t even know was there and who never pays the rent).

I’ve lived a lot of places, both alone and with others, and over the years, I’ve had some pretty shitty roommates. There was the one in Boulder who started having homicidal thoughts and the other one who snuck up on me in the kitchen and always smelled sour. There was also the bully who kicked me out of my room and blended her smoothies outside my bedroom at 5am. (Not to mention the one who walked in on me while I was masturbating and just stayed there.)

None of them though, had anything on the PMDD roommate that I’ve lived with since I was 14, because with the others, I was always free to just move out. PMDD has a habit of emptying my home of Kleenex, eating all my chocolate, trashing my kitchen, and even on occasion breaking up a friendship or leaving a Dear John letter for my boyfriend. For a couple weeks she’ll chill out and my house will be in order. I’ll start to make plans with friends, feeling strong and resilient, and I may even apply for a new job. In these brief lulls while PMDD is sleeping, dating a new guy or on holiday, I’ve felt great joy. But then she strides back in without knocking, blowing the door off its hinges. I dread her return and tense when her tires crunch the gravel of the driveway.

Over the years, I’ve become so afraid about my roommate’s return that my life has begun to feel like a house of cards. It makes it scary to start school, a job, a new relationship, or even a project because I don’t trust that she won’t show up and ruin everything. She has a way of pulling the rug out from under me, leaving me sobbing in bed, or so anxious I can hardly breathe.

COLLECT YOURSELF

“I’ll just give you a moment to collect yourself,” says the latest kind doctor as I lie sobbing on the crunchy cold paper of the examining table, having received yet another mental health diagnosis. I feel shattered. My alphabet of diagnoses is growing longer. I had the ABCs with Anorexia, Bipolar II and Cyclothymia, and now she’s pronounced Depression.

I’d gone in to ask her for a prescription for birth control.

“I really think the issue is my hormones,” I’d said, with an entire year of symptoms scratched in red ink on my calendar.

Did she hear me?

I WENT TO THE MOUNTAIN

At 19 years old, I quit university and headed west to the mountains. I’d missed so many morning classes lying weeping in my dorm room that it only made sense. My Dad is the one who suggested it. While home for Christmas, he offered gently, “You don’t have to go back there, you know.” And so I didn’t.

It didn’t take much persuasion for me to grab my skis and head for the hills and I stayed out there for two decades. With my bare feet on the earth, I simply felt better. Outdoors and out of the box, I could simply be me, freed of rules, expectations and all the shouted shoulds of “civilized society” (except for the ones I’d accidentally swallowed).

I skied and paddled, and in seeking out snow, rivers, views and beauty, I also regained my sense of perspective. In nature, there is only beauty and survival. Nothing else matters. This is life stripped to its essence, which is the only life for me. Outdoors is where I feel most alive, most well and most me. Gender, time, and the patriarchy are abstract and ridiculous concepts out there, not crushing us into tiny boxes the way they do indoors.

And I started to feel better. I got a degree in outdoor pursuits, and later went on to specialize in wilderness therapy, because all I want to do is to walk with people in the woods, helping them remember who they are. On the land I don’t need language, I don’t need a label, I just step outside and feel a little bit, “closer to fine” (with great thanks to the Indigo Girls).

14:41

When I got my first period at 14 years old, wishing I hadn’t, my mom said it was as though a switch had flipped. “You were like a different person.”

That’s when I started counting to five before walking through a door (if I didn’t do it, something bad might happen, like one of my parents could die). I ate less and less and swam and ran more and more. My brain caught fire and I couldn’t put it out. I survived one of the most fatal diagnoses in the DSM: Anorexia, which I now know often presents as comorbid with PMDD.

Now 41 years old, I grieve not getting to the root of this sooner. It wasn’t for want of digging, nor for lack of support from loving family and kind, skillful practitioners. It’s that we were all operating under the same flawed and false assumptions.

When I first felt the physiological pinch of haywire hormones, PMDD had not yet been considered, much less featured in the DSM. That didn’t happen until 2013, by which time I’d been dealing with its effects for two decades. The World Health Organization, not to be left behind, “In a landmark decision in May 2019…added Premenstrual Dysphoric Disorder (PMDD) to the International Statistical Classification of Diseases and Related Health Problems, Eleventh Revision (ICD-11).”

They say it was complicated because the condition straddles different disciplines: does it belong in the field of endocrinology? Gynaecology? Is it a mental health issue? The truth is that it requires a multi-disciplinary approach. But first you have to care. (Dig for one minute into this and you’ll see that it stems from the same reason that more women than men die of heart attacks. Hint: #fuckthepatriarchy)

No argument, though, can ease the pain I feel over having suffered at the whim of my hormones and brain chemicals for nearly three decades. It’s a strange and hard thing to try to grieve all those things that didn’t or haven’t yet happened: falling in love, choosing a home, becoming a mother…

THAT’S ME IN THE CORNER

In the middle of July, at 2am, I lay crying in our family cottage. I’d holed up there to weather the first few months of the pandemic with my parents, my sister and her family. They slept just down the hall from me, as I soaked the pillow and stifled my sobs.

“I can’t believe this is my life,” I thought. 41 and jobless, single without prospects. Up to that moment, I’d always thought I’d be ok, that I’d meet someone in the end, that I wouldn’t spend my life alone, and that things would get easier one day. But that night, I realized they might not.

Hope dies hard, I think they say. It sure does.

I’ve always prided myself on being hopeful and used to operate as though I’d die trying. Whether it’s the Buddhist school I attended, or more likely, that I just got too exhausted to try any longer, something shifted that night.

I surrendered.

I leaned in to ask PMDD what she’d been trying to tell me all along, and in the morning, I walked over to my mom and asked her for help.

ME & PMDD

Me: Wow, 27 years, eh?

PMDD: Yeah, well, you’re the one who wrote that piece, “Ripe” about how things can only happen once it’s time. It had to be now.

Me: But you hurt me! I’ve suffered for so long.

(a tear falls.)

PMDD: I know honey. But I didn’t come here to hurt you. I’m only here to wake you up.

Me: Wake me up? What’s that supposed to mean?

PMDD whispers softly: It’s time for you to reclaim your power.

(I start to sob softly.)

Me (quieter now): I’m getting older. There’s so much in life I may have missed. Why did it have to take so long?

PMDD: Now is the only time sweet one. A chick emerges from its egg once it is time. You can’t peel a cocoon off a caterpillar. And when it’s time, the shards of the shell must hurt the chick, don’t you think? But you don’t hear the chick complaining. It just busts its little way out of there pecking like all get out until the shell cracks open, its new beak hammering out from the inside. That little chick emerges bedraggled, bewildered, wet and blinking at the brightness of the sky all the while still sticky and covered in bits of shell. You’re still stuck in splinters of shell sweetheart, but you’ll fly in time. Rest now, and remember that no one could peel that shell off for you. You had to peck your way out your own damn self.

Rest.

Me: And so I do. I sleep. And each morning dawns a little brighter than the morning before.

PITCHING A RED TENT

With a first degree in outdoor pursuits and a second in wilderness therapy, I’ve spent a lot of years pitching tents. Here’s my final pitch: it’s time to put up a lot more red tents. We need spaces where we can step into caring community and feel held and heard and heal. We need to start to speak about the sacred that power has made taboo: dreams and blood and babies, and we need to celebrate and grieve together. PMDD is just another word, even a label if used poorly, but the great thing about it is that it is leading me to community, and I believe that it’s in wild community that we heal.

As I blaze my trail forward and step closer and closer to fine, you can bet your bottom dollar that I’ll be leaving trail markers as I go. Because honeys, it shouldn’t have to be so hard. I think it all starts with story. And I’m telling you, now that I’ve got language for this, I’m not shutting up.

(the end. the beginning)