Friday 15 December 2023
Tuesday 11 April 2023
Wednesday, October 27, 1993 6:20am
Content Warning: discussion of sexual assault, sexual harassment/exhibitionism, psychosis, suicidal ideation.
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Disclaimer: This is an account of how I entered my First Episode Psychosis (FEP). I don't know how common it is or isn't that FEP has a trigger. If you'd like to know more about this, I'd recommend reading this. I don't particularly like linking to Web MD, but it's a good overview for those who are interested. As for me, my FEP needed a trigger. Herein is a disclosure of what that trigger was and what happened after.
I've never spoken (publicly or privately) about what cased my first episode psychotic break. Schizophrenia typically has a prodromal phase, which is the pre-"full blown schizophrenia" time period that typically happens in the teen years. I'd been in this phase since beginning high school at age 14. My anxiety on leaving middle school and transitioning was so high due to friend groups dissipating, being the very first 9th grade (freshman) class in that school - and all the rumors were that freshmen were hazed by older students for merely existing. I hate change, and this change in particular was one I couldn't handle. By the time I turned 15 (in December, a few months after the school year began) I was already suicidal. My behavior changed. I dressed in black a lot. I had a few nascent delusions and possible hallucinations (either that, or just alterations in perception that made disparaging remarks from other students louder to me). I hated it there.
Graphic from Healthline.com. I had every single one of these throughout the 4 years of high school, except for the problems with hygiene. I was so paranoid and such a perfectionist that it took hours to groom myself the night before and day of school, every day.
By 11th grade I was beginning to have some paranoid delusions, although nothing life-altering. I thought one girl in my psychology class was a Satanic witch who would read my mind so that I had to focus my thoughts strictly to what was being taught for that hour or she'd use them against me. What also didn't help was that I was in a toxic friendship with one girl that was quickly deteriorating, and interference with a second friend who would eventually take my place. Unfortunately, that wasn't a delusion. The impact it had on my psyche was probably worse than it would have been had I been "normal". I had the feeling that I was hated. I had no self-esteem. I was in a constant state of negative thought for four years. Suicidal impulses never left me. There were other times I planned on running away, even though I had nowhere to go. There was a lot going on in my head and I had no idea I was ill. There was a lot of misanthropic anger for just about everyone in my life, friend or stranger. And I told no one - not even family - about any of it. I still don't know why. I just couldn't make myself do it.
Things temporarily got better by my last semester in high school. There were still serious ongoing issues, but the bright spot was March 20th, 1993. It was a Saturday if I'm correct, and I was just getting over a month-long flu. It was a slow day and on TV was a broadcast of Star Trek: The Motion Picture. I'd grown up with Star Trek reruns, my parents (especially my dad) were huge fans. I'd gone to see every film from the the second (at age 7) to the fifth (age 14) in theaters. I watched TNG every evening as it was still broadcasting at the time. Wouldn't call myself a Trekkie/Trekker, but I was still a huge fan. But I'd never seen the first Star Trek film until that day. Due to my altered mental state it held a different significance for me.
What I loved about it was that the NASA Voyager program was a main part of the story. I'd always loved astronomy and astrophysics. My dad had a 6" telescope that we used to look at the moon and the Andromeda galaxy when I was a child. I got a pair of binoculars for my 9th birthday, seeing the moon in near-3D was awesome. We used to watch Cosmos on TV (the Carl Sagan version) when I was small and I adored it. But I had no clear career path by 12th grade until that day. Originally I was expecting to go into music (I played guitar and was in my 3rd year of lessons), but that had ceased to be viable due to my own limitations. But that old spark of passionate love for outer space was reawakened that evening. I went outside once the movie was over. It was twilight. The spring constellations were beautiful. Orion was setting in the west with the sun. I hastily decided to become an astronomer.
Stargazing in earnest began right away. I had a book of constellations and moon phases that belonged to my dad, though I could only see the ones in the northern hemisphere. I dove back into school. I didn't have any friends left but immediately decided I didn't need friends anymore. My grades went back up in all classes after a sharp fall from the previous year. I read "Cosmos" by Carl Sagan to get re-acquainted and it blew my mind. I was outside every night for hours after dark. After graduation, in the summer, I was out even longer, learning every constellation. To me it was a religious experience. Even though I lived in a light-polluted suburban area of Southern California I was able to find the Milky Way with the naked eye. I couldn't believe I was staring at our galaxy all the way across the entire sky! I loved every second of it. All I read about were books on astronomy, then astrophysics, then books on quantum physics (I could understand the concepts, but not the math), and even got into Chaos Theory since Jurassic Park had been out at the beginning of the summer and was one of my favorite films by then. I dragged the old 6" telescope to the backyard often and just stared through at anything I could look at. By the time I entered college in the fall I'd found the Andromeda Galaxy by naked eye as well.
This was my path. I was happier than I'd ever been.
"Eleven Moons Played Across The Rainbows" ©2007. Acrylic on canvasboard.
In retrospect, this wasn't normal. It was too rash. Too much, too soon - too suddenly happy while still feeling suicidal at other times. Still full of anger. I wasn't well. I was setting up for a tragic sudden descent that came very quickly. The time had come, all I needed was a trigger. And it came in the form of new neighbors next door.
I have always been afraid of neighbors, or bad neighbors to be more precise. I've been this way since childhood. At age 12 I'd had a horrible experience with a neighbor and his two friends. Walking home from school one day I was sexually assaulted by one of the three boys, in front of my little sister. The other two (my neighbor and another boy) had dared him to do what he did. While they were called out for it (I told my mom who had called the school), I only got an apology through an intermediary, a counselor at the school. There was no punishment. Never any resolution with the next door neighbor. No meetings, nothing. In a few months we moved to another house. Nothing more came of it.
When a new family moved in next door to us six years later, in mid-July 1993, I was 18. I was suspicious of them because of my neighbor-phobic tendencies, but I forced myself to be logical. It took a lot of work. Yet we didn't know them, maybe they were actually nice people, I told myself. It was a family. Parents in their thirties with a teenage boy and a girl I'd guess about three to four years old. They were probably fine, I told myself. Still, we never actually met and I was very okay with that.
I started college in the fall. I had a habit of getting up around 4:30 every morning and dragging the telescope out with me to see constellations I wouldn't be able to see for a few more months at night. By October this was a regular occurrence, as well as the usual nighttime stargazing. Hours of it. I was quiet about it. Didn't want to wake anyone up. I also wanted to be alone with it. The sky was there for me and me alone. Until October 27th.
Halloween was coming up, the fall was beautiful and cool, and I liked college, even if I was intimidated by it. Then in the newspaper one day it said that there would be a space-shuttle flyover (it was in orbit at the time) and it would be visible in the early morning twilight right before sunrise. It was the space shuttle Columbia. I was ecstatic! My dad was excited about it, too. It would fly diagonally across the sky at about 6:20-6:40 am and look like a bright meteor. We both decided to get up and look for it together.
We got up early that day, a Wednesday. I had a class later on mid-afternoon. We both went into the backyard, talking quietly about where to expect it to come from and how long it would be before it disappeared below the horizon again. After a while, before it happened, Dad decided to go back in the house while I stayed outside. It was lighter now and my eyes had adjusted. I was standing out in the grass facing southwest when from behind me, from a window on the second floor in the house next door, someone let out a large, long belch. It was directed at me, I knew it. I debated whether to acknowledge it at all but eventually turned around.
Upstairs in the wide open window of the master bedroom next door was a blond man with glasses and a moustache. He had no clothes on except for thin, tight white underwear. He was staring down at me, hands on the windowsill, slightly bent forward toward me. I was frozen. I expected him to speak but he didn't. He just kept staring. After what seemed like forever he stood up very slowly, his eyes still fixed on me. Everything was visible but I refused to look anywhere near his crotch, even though it was hard to avoid. I watched his face. After what seemed like forever he finally turned around and stepped away, walking backward, strangely. Still staring at me.
He appeared to be in his mid-thirties. I was eighteen.
"What the Hell?!" ©2008, acrylic on canvasboard
I have no idea, no concept of what a person without mental illness would make of this incident. I understand to an extent that at the very least it's exhibitionism. Either that or is it a bad joke by a bad person and not worth reacting to? I don't honestly know. You - reading this - you're probably a better judge of it than me, even today. At the time, though, to me it was apocalyptic. It all fell apart very, very fast.
I was shaking hard, I was scared to death thinking "WHAT THE FUCK WAS THAT?!" I could no longer see him, but he started turning on the lights in his room. I turned back around toward the southwest and pretended nothing had happened.
My dad walked out a minute later, asking "Did you see anything yet?" The man next door, hearing this, started clearing his throat and making similar disgusting sounds as if he were hocking loogies all over the room while I answered, "No, nothing". I was so sure the man wanted me to say something to my dad. I was too scared. I thought if I acknowledged him everything would get worse.
Dad and I kept speaking and the man kept making noises until the shuttle flew over, tragically beautiful now, crossing the entire sky and disappearing below the opposite horizon. This memory is painfully tainted given the circumstances. It was all ruined.
This incident, whatever it was, frightened me because of its ambiguity and its perceived sexual inference. I felt as though an atrocity had been committed but rationally I couldn't define how. What was to my neighbor a forgettable, disgusting joke was - to me - distinctly and malignantly sexual and threatening. It was a warning of what was to come. And what was to come? I hadn't the faintest idea but I knew it was bad.
Instantly things were different and strange. I remember going to the living room to the couch. Lying there, slowing down, time dropping to a crawl while I tried to outwardly react as though nothing were wrong. Simultaneously everything outside of me sped up - it literally looked like my parents and sister, getting ready for the day, were moving at lightning speed while I was frozen in a glacier. Immobile but feverish. My thoughts were rapid. I was going through any and all possible reason, no matter how bizarre, that the neighbor would do that to me. I was dimly aware of everyone else in our house leaving for school and work. Nothing else changed. Time was still crawling while my thoughts were racing at a pace I could barely keep up with, and I was now alone.
I've heard it said that delusional persecutory beliefs during psychosis (for those of us with schizophrenia, at least) are the mind's futile attempts at desperately trying to make logical sense out of frightening unrelated incidents and/or hallucinations presenting themselves as connected and conspiratorial. I believe it to be accurate as far as my experience is concerned.
Within the first few hours after sitting on the couch I came to the conclusion that the family were Satanists, and this was my punishment from the Devil himself for something or other. I believed the man had probably gone downstairs to the rest of his family over breakfast and they all laughed about it. This was my belief for a few days. By the weekend they were merely witches, and shortly after that the delusion became "it was an act done by that man and his family condoned it, and whatever he is, he's evil and will continue to intimidate or hurt me." To say I was terrified doesn't do the intense fear any justice as a descriptor. I was afraid even to walk on the inside of my house on the side that faced their house, because through a window there we had a view up to the window that man had stood in. I never approached it until after everyone else was in bed, so I was in darkness. I'd go to our window, without opening the blinds, and stare up through a small slit in between them to see if anyone was there, or if the window was still open.
"Paranoid" ©1999, acrylic on canvas. It's a literal depiction of this window in the daytime. The main difference is that I'd never open the blinds as depicted here - he'd know I was there.
HIS WINDOW WAS ALWAYS FUCKING OPEN. Every night. All day. It never closed.
Then the weekend was over, Halloween had passed, and on Monday things got much, much worse.
It had only been five days but I was a mess. I don't remember much. I refused to talk about it with anyone. I was afraid if I told my dad, he'd kill him. Then on Monday evening my parents came home from work (they worked at the same place) while my sister and I were in the living room watching TV. I was lying on the floor so as not to be seen by the neighbors, because our family room had a large sliding glass door that gave anyone in their backyard a clear view inside. My sister was on the couch. My dad came in after my mom as he was getting the mail from our box. My parents sat down with my sister on the couch, I stayed on the floor.
There was some commotion behind me. I turned over and saw that all three had taken turns reading an anonymous letter that came in with the mail. Nothing written on the envelope, no names anywhere. It was from someone who lived in the neighborhood, no question. My parents were offended, and my sister was angry. I still remember what the letter said:
"To Whom it may concern,
"We would appreciate it if you kept your yard neat and clean. There are weeds that need to be removed. We all take pride in our yards and homes."
No signature, obviously. For extra anonymity they even typed it out. We didn't know who it could be. My family took turns guessing.
Not me. I was certain who it was. Not only who, but what the real, secret meaning was. The letter was in code, you had to read between the lines. It was a message from the man next door to me specifically, disguised as a yardwork complaint so my family would be oblivious. Clearly I was the weed in the yard that needed to be removed. I'd been there all summer and halfway through fall, stargazing at odd times of the night, noisily dragging out my dad's behemoth telescope across the concrete of the patio. I was in the yard just last Wednesday morning when that man had seen me. It was clear to me that this letter was a threat directed solely at me.
I went very cold very fast. I was shaking but I was trying to hide it. I don't think my family noticed. At some point I got up and finally went to bed a few hours later. I remember a hallucination, I was aware of voices discussing the situation with each other in my bedroom, concerned for my well being. My head was full of static and a rapid, racing multitude of paranoid thoughts. I can't believe I actually fell asleep that night but I did.
After the letter, things began spiralling out of control in my head immediately. There was a new, fixed persecutory delusion. The man next door was no longer a satanist or a witch or anything supernatural. He was just evil. He had issued a threat to me. I needed to stay out of that backyard. I believed that at any moment that if my dad found out about that October morning, he'd go next door wanting to kill the man, but the man would instead kill my dad. Then, he'd come over to our house and rape not just me, but my mom and sister as well. Furthermore, I came to believe that he didn't want to be found out for what he was or what he'd done to me. If I ever did warn anyone in my family about him, the neighbor would somehow "know" telepathically, and this would be our unavoidable punishment. If I said nothing, maybe we'd be okay. This meant I'd have to cover up for anything suspicious he or his kids might do if my family noticed it. It was a double-bind I couldn't get out of. I couldn't stop the threat and I couldn't warn anyone about it for their safety. Because of that, I didn't even know if any of us would make it out alive.
I noticed he drove a white pickup truck. Every day I had at least two classes about a half-hour drive away. Anytime I saw a white pickup truck I was sure it was him. If I saw one, I'd find different routes, make a turn if I was originally going straight and vice versa. Do you have any idea how many white pickup trucks there are in Southern California? If you've ever driven literally anywhere, you know there are tons of them all over the place, generally. It was horrific anytime I was out. He could literally be anywhere, in any one of those white trucks.
I altered my drive home after class and took the long way, just so that I could find a way to avoid driving past his house and alerting him to my presence - in case he was home. Instead I went far out of my way to come up on a parallel street and turn left past our other neighbor's house and straight into our garage. I was so terrified he might hear me that I always rushed to turn off the car and get out fast just so I could synchronize the slamming of the car door shut with the big garage door hitting the ground. Maybe he would think no one was home if there was no car in the driveway. Honestly, I felt safer at school than at home.
The psychosis only increased in intensity. I had nightmares every single night, all were about the man next door. Sometimes he did horrible gruesome things to my family while making me watch. Some other times we actually talked everything out and came to a mutual understanding that I wouldn't bother him and he wouldn't hurt me. I'd feel hope for the first time in months only to wake up and remember that literally nothing had changed.
It wasn't only him. It was his entire family that scared me. I never saw his wife, but his two kids were outside all the time, especially his teenaged son. They were in our yard a lot, the son and his friends ruined a lot of the plants in our front yard with their bikes. I thought of his son as another pair of eyes keeping tabs on me, and also an enforcer of the threat in the letter from November first. He was calculated intimidation. Some of this was supported by real life. My sister was at the same school as the kid and heard about his many detentions and suspensions. He was apparently not a great person, even outside of my delusions.
Because of the belief that if I alerted anyone to anything bad the neighbor's family did that he'd rape and then kill us all, I couldn't say anything about the ruined plants in the front yard. I had to keep quiet or play it down as if it was no big deal while simultaneously being terrified about it. Even when the plants were noticed by my dad. The problem was that my sister noticed a lot of things too - and worse, she noticed that I was strangely quiet about them when she pointed things out to me. It appeared to her that I was suddenly okay with things where, normally, I'd be visibly angry. I was not myself, and she could see it. Nothing came of that insight, however.
For a year and a half this continued. Many things happened that I can't put down here or this post would be even longer than it is now. I lived in terror. At any moment I was liable to be raped or killed. For a year and a half I never set one toe out the door that led to the backyard, even though previously I'd been out stargazing every night, every morning before dawn. I don't know if my family noticed the sudden change or not. I hoped they didn't. I prayed they wouldn't ask.
Things suddenly reached a fever pitch in early 1995 when the man's wife came in to where my parents worked (at a medical equipment store) for a wheelchair. She spoke to my mom and they both realized that they lived next door to each other. It was February, and the woman complained to my mom that she'd been disappointed that she hadn't gotten anything from her husband for Valentine's Day. "I knew he was a scumbag," I thought. But I was terrified that my mom was talking to this woman. What could she do to me? Would she hurt my mom? Would she be jealous and furious that her husband had been leering at me that morning long ago instead of her? Would she hurt my mom to get to me and then hurt me?
A short time later I had my answer. It changed everything. Some correspondence between the wife and my mom revealed that she was divorcing him immediately. They were separating and moving away pretty fast. I learned his last name - Gilmore. The monster had a name. It was only after they moved out that this particular delusion (there were still many others, unrelated) completely disappeared. When it did, the nightmares stopped. I never had another one. I was by this point extremely unwell, but at least this one particular horror finally ended. I could live without fear for my life and my family's lives again.
As for the letter that came in on Monday the first of November 1993 - in 1996 we'd figured out who'd put it in our mailbox. It will probably surprise no one but me that it wasn't from the man next door. It was from a neat freak who lived across the street with astroturf-like grass in his yard.
This isn't at all everything that happened to me during the worst psychosis of my life, it's only how it got started. So many other things were happening at school and in church, and I'd had to drop out of college completely due to my illness. I was depressed and suicidal for so many reasons that had nothing to do with the neighbors. This was merely how my psychosis bloomed, this was the trigger that moved me from potentially schizophrenic to actively schizophrenic. One tiny incident, a tasteless joke. A belch. I still have no idea what to make of that morning or what the fuck was going on in that guy's head, but that tiny needle popped the balloon that was the last barrier between me and insanity. Wherever you are now, Gilmore, dead or alive... fuck you.
Friday 7 April 2023
Thursday 5 January 2023
Friday 11 November 2022
Sunday 10 November 2019
Hypervigilance/Paranoia
Hypervigilance ©2019. Acrylic on canvasboard, 12"x 16"
Hypervigilance is kind of a mixed-bag of a term - medically it's treated as distinct from paranoia, but for me hypervigilance is more a symptom or even the outcome of paranoia. It's prominent in schizophrenia and schizoaffective disorder (I've been diagnosed with both at different times) - probably the most prominent symptom in general public knowledge. But for the most part, when not in a psychotic state but sometimes even within one, I've suffered it and been aware of it. I'm lucky the people closest to me - my husband and parents - are good at alerting me when I sound paranoid to them. If my mom says "Can you hear yourself?" after I've said something really odd, or my husband says "That sounds kind of paranoid, Jen" in a non-confrontational tone (as always) I trust them and it's usually a huge relief. Then I know there's no true threat and I can relax.
It also quells the hypervigilance. For me, it's something I can't always turn off. It makes me overly watchful, it's one of the most unpleasant experiences. While I'm in remission from psychosis (which is most of the time, it's been almost 10 years since my last episode) it really only hits me hard during the second half of my menstrual cycle, during the time I suffer from PMDD (Pre-Menstrual Dysphoric Disorder, or "PMS on steroids") I get really uptight, anxious, paranoid, and extremely hypervigilant. I'm always watching myself (hoping not to anger or upset anyone) or I'm watching others ("Are they mad at me? Do they hate me? Did I fuck up again? Am I being ignored on purpose? What did I do wrong? I know I did something wrong!"). It doesn't stop. It doesn't rest. It feels no pity. It's the goddamn Terminator. The only difference is it dies off after about two weeks, a few days into the actual period. Before that I'm a mess to be around.
I'm actually writing this in a state of PMDD-instigated hypervigilance. It's been a rough day or two. My apologies for any talk that's too dark in this post.
Like the painting above, finished last week, the voices (internal criticism from my own mind) are hissing at me about how horrible a person I am. So many reasons, so many different thoughts. An onslaught of disgust. It's hard to understand in this frame of mind why people like me. Or why they tolerate me. Then the depressive voices chime in - "You're cruel! You've hurt everyone around you. They'll all leave you!" Hence the mouths screaming at the subject in the painting. She is unprotected by hair, clothes, any covering whatsoever. Presented in humiliation, perpetually on the verge of tears, trying not to listen while the voices only crowd around closer, louder.
The crown of eyes is the hypervigilance itself. Eyes watching in all directions to spot the smallest clues to validate a reason to be so overly observant. What did I tweet that was so offensive/cringy/embarrassing/wrong? What did I "like" on Facebook or Instagram that makes me look so horrible to everyone? What did I say to anger my family? Have I been too mean to anyone? Should I apologize again? What have I said or done that makes me a burden to everyone I know? I don't know. Keep looking!
or
Did they just say that because they know I'm horrible? Is that comment actually a passive-aggressive dig at me?
It keeps on going like that. It's worse at night. Sometimes it becomes rumination that speeds up and keeps me from being able to sleep. Too many thoughts, or only one thought circling in my head until I get so exhausted by it that I fantasize about trepanation. At least momentarily. Instead though, I usually just get up and start drawing. Just for an hour, then I go back to bed. My eyes are always scanning, for my own mistakes or external threats. A crown of unblinking eyes, ever watchful. Yet I never find anything conclusive, only speculation. Not knowing is the worst.
If you've made it down to this point in the post - well, even to those who haven't - thanks for listening. Thanks for not rejecting me. I'm not the only one that's like this. I made this painting to try and tell in an image (that's probably hard to understand) what it feels like. It's very weird, I know. It feels as bizarre as it looks. The thing is that there are other people with schizophrenia out there (1% of the general population - you know, one in 100 people) or schizoaffective disorder. There are others (3% to 8% of those who menstruate) who suffer from PMDD. There's another subset of people with both. I know quite a few of these people. I'm one of them. Please treat us kindly, please forgive us if we get uncharacteristically angry. It really isn't your fault. It's an illness, or more than one illness. As of yet there's no cure - only management for the symptoms. All you need to know is in the face of the woman looking out at you from the center of the painting. It hurts.
As always, thank you for your patience with me and the things I say or do. I hope you can appreciate the painting for what it is. I hope those like me who suffer similarly (or those who identify with the painting) will be comforted that they are not alone.
Wednesday 17 April 2019
Two Weeks In Hell
Everyone (or at least most women) know what PMS is. Stereotypes abound, not all of them are wrong. Hormone fluctuations - primarily between the switch from estrogen to progesterone in the latter 2 weeks of the monthly cycle tend to render us vulnerable to issues we're familiar with: moodiness, pain, weepiness. Some physical symptoms like bloating. But out of all of those who understand it, does anyone know its even more intense and furious sister, PMDD?
As PMS stand for Premenstrual Syndrome, PMDD stands for Premenstrual Dysphoric Disorder. I've heard it described as PMS on steroids, and I agree. I have this condition, I think it developed within the past 5 to 10 years. I go through it every month. Two weeks I'm myself, I'm fine. The other two weeks I get increasingly irritable, angry, overwhelmed with guilt... maybe I should define it here.
Premenstrual Dysphoric Disorder is a more severe version of PMS, although some of the mood issues of the disorder are so overwhelming and uncontrollable that they tend to disrupt relationships between family, partners, spouses, co-workers. The mechanism of action (how it works) is not known, although it is a relatively new field of study. Many doctors in person though - psychiatrists and gynecologists specifically - don't know how to help. It was entered in the DSM-V (Diagnostic and Statistical Manual of Mental Disorders, or the"Psychiatric Bible") when it was revised in 2013. That's not very long ago. It's suspected that it affects 3% to 8% of menstruating women, a subset of all women. It may be infrequently found, but as it is a profound problem (for those of us who have it and our loved ones too), I don't know why there isn't more information out there? It is a women's issue, which makes it a human issue. However, it is a taboo topic because of what I'd suspect is the disgust most people have (even among women) of menstrual-related issues. As a psychological/psychiatric issue, it has that stigma as well. It can easily cause a lack of empathy in the people who love the affected woman, as the outbursts at times can be interpersonally traumatic. The rage of the patient and the guilt afterward, shouting and then so much crying, for up to two weeks. Every month. Anyone on the receiving end (or merely in the same room) would be understandably upset, and honestly, I feel a lot of pain for my loved ones because of mine (which is part of the guilt over it all).
"Fuck You All!" ©2009, acrylic on canvasboard.
"Nobody Hears" ©1999-2000, acrylic on canvasboard.
Two extremes of the same illness.
Fatigue, mood changes, abdominal bloating, breast tenderness, which sounds pretty familiar to many women. The difference is the magnitude. From then on it goes into irritability that could start an outburst of rage (or if at all controllable, a highly pressured "peace" that could be revoked if the irritations continue - whether from another person or even an inanimate object, or even the self). If not rage, then a general argumentative mood where nothing is good and anything nice you could say to the woman suffering might get turned against you. For me I tend toward both, but then afterward is the guilt. Extremely intense guilt. It doesn't matter how good you are at hiding your emotion, or if you're out in public, the tears just start seemingly out of nowhere. No one can console you. Either you feel extreme guilt for something (or nothing), or the depression hits with the intensity of a 2' by 4'. You just start crying, because what else can you do? Afterwards, it's a matter of time until you start crying again, usually for reasons you don't know.
"Uninvited Wallflower", ©2007, detail.
For me it's guilt. I don't know why. Perceived guilt, usually, not for anything I may have actually done. This past January I was visiting my parents in America with my husband. For several days straight I sat at the kitchen table and cried over a perceived (or not?) offense I thought I'd committed against my parents. They told me no, I hadn't done anything. They were fine. I get the feeling they wanted to help but had no idea how. But they couldn't. Several days straight my eyelids were so puffy from it that I looked strange to myself. Like I'd been hit a couple times in the face. Only to myself, as far as I know.
As for the rage, I've been able to crank it down to something manageable but I'm wondering if it's hurting me internally, and that scares me. I do hold it in. I try to work it out through my art, sometimes though I just get mad at the paint or the canvas or myself (or all three). I don't talk about it but it's there. I speak softly, but it's there. Always under the surface. Even at night in bed, if I haven't fallen asleep after an hour, I get mad at any tiny sounds I hear (even just a clock ticking or a fly buzzing), and I become so infuriated that I have to get out of the fucking room as fast as I can without waking my husband. I end up going to the living room of the apartment and drawing something like the sketch below. With headphones on...although it does sometimes happen that my own choice of music angers me too. The vocalist is too nasal, the drums are annoying, the guitarist thinks he's just SO great at soloing, at some point I can remember thinking all of these to the point it's unbearable to continue listening. NEVER at any other time in my life, only when I'm getting sicker. I'm using dark humor in a sense right now, but I tend to be nowhere as minutely musically critical as even these things unless I'm already compromised emotionally at the worst possible time.
No one is safe from me.
The crying, it just comes out of nowhere and it's not just tears, it's full on "ugly" crying. Especially if I have time alone. Horribly broken sobbing. It's absolute hell. When neither the rage or the sadness is happening, it feels like a depressive episode. My body feels heavy, I care about nothing. Terminally bored, unable to move, unable to sleep, unable to feel. Because I have schizophrenia/schizoaffective disorder, it aggravates the symptoms. Especially the depression.
Then there are some lesser-known symptoms. Light is too bright, sound is too noisy (and you get angry at whatever is causing it), and for some reason touch is absolutely unbearable. I feel sorry for my husband because how do you say (nicely) "Could you please not do that?" when inside you're thinking "If you fucking touch me again you lose both hands"? I tend to be passive-aggressive at best, but I can only be so calm for so long. It's a weird thing, the touch is worse the softer it is. Like electricity. In trying to be civil and stuffing the rage down, it stokes the fires for the next outburst. It's somehow unbearable.
What is more irritating (to me and my loved ones as well) is the brain fog. The forgetfulness. I can't remember what someone has said to me 5 minutes ago, and if I have plans set for the day I usually have forgotten all of it. (Disclaimer: I've had memory issues for a while, since around 2010, mostly due to bad psychiatric and Parkinson's medication, I haven't been the same since and neither has my memory. It's still much worse during the last two weeks of my cycle, however.)
I had a therapist describe all of this to me by explaining that the MRI scans of normal female brains vs. the same women's brains during the span of PMDD show a "ring of fire" around the cortex. Even when compared to women having PMS. In other words, the brain is working overtime in areas that should not be busy, are not usually busy. Sensory information, perception (you have no idea while you're in the midst of an episode that you're in the midst of an episode. A lot like any psychosis, although this isn't a psychosis, per se.) If you already have another underlying mental illness, that will be exacerbated by the hormone switch beginning two weeks before your next period.
This same therapist also had me write on a card for myself when I knew a period was coming up that my parents are not trying to hurt me, they love me. Also that my husband is not trying to hurt me in any way, he loves me. Whether it seems like it or not, they love me and are trying to help. Believe it or not, you do forget this going into an episode of PMDD. You really do think even our loved ones are picking on you just to get a rise out of you, or maybe they even secretly hate you. My therapist's answer to this was to get me to put the card somewhere I could see it prominently every month during the end of my cycle so I would remember.
Premenstrual Dysphoric Disorder is a more severe version of PMS, although some of the mood issues of the disorder are so overwhelming and uncontrollable that they tend to disrupt relationships between family, partners, spouses, co-workers. The mechanism of action (how it works) is not known, although it is a relatively new field of study. Many doctors in person though - psychiatrists and gynecologists specifically - don't know how to help. It was entered in the DSM-V (Diagnostic and Statistical Manual of Mental Disorders, or the"Psychiatric Bible") when it was revised in 2013. That's not very long ago. It's suspected that it affects 3% to 8% of menstruating women, a subset of all women. It may be infrequently found, but as it is a profound problem (for those of us who have it and our loved ones too), I don't know why there isn't more information out there? It is a women's issue, which makes it a human issue. However, it is a taboo topic because of what I'd suspect is the disgust most people have (even among women) of menstrual-related issues. As a psychological/psychiatric issue, it has that stigma as well. It can easily cause a lack of empathy in the people who love the affected woman, as the outbursts at times can be interpersonally traumatic. The rage of the patient and the guilt afterward, shouting and then so much crying, for up to two weeks. Every month. Anyone on the receiving end (or merely in the same room) would be understandably upset, and honestly, I feel a lot of pain for my loved ones because of mine (which is part of the guilt over it all).
Two extremes of the same illness.
Symptoms
They begin around the same time, two to three weeks after the past cycle. You never see it coming, but you know it's on its way. These are similar to PMS symptoms, but they're even more exaggerated.
screenshot credit: www.medicinenet.com
For me it's guilt. I don't know why. Perceived guilt, usually, not for anything I may have actually done. This past January I was visiting my parents in America with my husband. For several days straight I sat at the kitchen table and cried over a perceived (or not?) offense I thought I'd committed against my parents. They told me no, I hadn't done anything. They were fine. I get the feeling they wanted to help but had no idea how. But they couldn't. Several days straight my eyelids were so puffy from it that I looked strange to myself. Like I'd been hit a couple times in the face. Only to myself, as far as I know.
Untitled sketch, 2019.
It's even worse if anyone in the building has guests over, because no walls are ever thick enough. I want to throw things around, shout obscenities at the offenders, stamp on the floors or the walls of the offending neighbor. It stops just short of me actually doing it. And only right before my period starts.No one is safe from me.
The crying, it just comes out of nowhere and it's not just tears, it's full on "ugly" crying. Especially if I have time alone. Horribly broken sobbing. It's absolute hell. When neither the rage or the sadness is happening, it feels like a depressive episode. My body feels heavy, I care about nothing. Terminally bored, unable to move, unable to sleep, unable to feel. Because I have schizophrenia/schizoaffective disorder, it aggravates the symptoms. Especially the depression.
Then there are some lesser-known symptoms. Light is too bright, sound is too noisy (and you get angry at whatever is causing it), and for some reason touch is absolutely unbearable. I feel sorry for my husband because how do you say (nicely) "Could you please not do that?" when inside you're thinking "If you fucking touch me again you lose both hands"? I tend to be passive-aggressive at best, but I can only be so calm for so long. It's a weird thing, the touch is worse the softer it is. Like electricity. In trying to be civil and stuffing the rage down, it stokes the fires for the next outburst. It's somehow unbearable.
What is more irritating (to me and my loved ones as well) is the brain fog. The forgetfulness. I can't remember what someone has said to me 5 minutes ago, and if I have plans set for the day I usually have forgotten all of it. (Disclaimer: I've had memory issues for a while, since around 2010, mostly due to bad psychiatric and Parkinson's medication, I haven't been the same since and neither has my memory. It's still much worse during the last two weeks of my cycle, however.)
I had a therapist describe all of this to me by explaining that the MRI scans of normal female brains vs. the same women's brains during the span of PMDD show a "ring of fire" around the cortex. Even when compared to women having PMS. In other words, the brain is working overtime in areas that should not be busy, are not usually busy. Sensory information, perception (you have no idea while you're in the midst of an episode that you're in the midst of an episode. A lot like any psychosis, although this isn't a psychosis, per se.) If you already have another underlying mental illness, that will be exacerbated by the hormone switch beginning two weeks before your next period.
This same therapist also had me write on a card for myself when I knew a period was coming up that my parents are not trying to hurt me, they love me. Also that my husband is not trying to hurt me in any way, he loves me. Whether it seems like it or not, they love me and are trying to help. Believe it or not, you do forget this going into an episode of PMDD. You really do think even our loved ones are picking on you just to get a rise out of you, or maybe they even secretly hate you. My therapist's answer to this was to get me to put the card somewhere I could see it prominently every month during the end of my cycle so I would remember.
I wrote this tweet almost two weeks ago. I'd had (if I remember correctly) something of an argument with my husband before he left for work, I was crying heavily writing it, and the following thread. I was desperate. I somehow realized it was a PMDD issue (I think my husband reminded me) and because I've never had help to calm it and there's no treatment for it really. My psychiatrist told me I may just have to "live with it". I can't, I can't do that! So what's the easiest thing I can do to alleviate some pain? Tweet about it, I guess. At the very least you know someone may see it, that you're not lone in all of this (because it sure as hell feels like it). That you're trapped in a body that is betraying you and with a brain that wants to orchestrate a total mutiny.
One of the worst parts of all of this is you're one person for two weeks out of a month, then like a werewolf during a full moon you are someone else entirely, someone murderous and paranoid, and suffering. Not being able to be your normal self like nearly every other woman during the latter two weeks, or seeing those two weeks coming up on a calendar... your heart drops.
Please don't just take it from me, listen to other women and what they have experienced as well.
Screenshots courtesy of medicinenet.com.
I wish I had some optimistic ideas to end this with, but unfortunately, I don't. I can ask a psychiatrist for help, but they will probably send me to a gynecologist. When I see my gynecologist, they'll tell me I need a psychiatrist. I've had this happen to me in the US (the country I grew up in) and also here in Canada (where I live now). Truly, no one knows what to do. ("Live with it" - as the one Dr told me - is not an answer.)
Sometimes SSRI antidepressants are reccommended first, and then a birth control to stop ovulation next. If nothing else works, get a hysterectomy. So truly, sometimes the cure is as bad as or worse than the disease. We need something other than just this. And the ignorance of doctors who should know better (or at least keep up with the research) is astounding to me.
On a brighter note, a word to my sisters who are dealing with PMDD - it's not your fault. It's an illness with biological beginnings. It's not the real you. The real you is who you are the first two weeks. You aren't evil, you aren't histrionic, you aren't hysterical, you are merely ill. This isn't a flaw of yours. And we deserve a better treatment than the ones that are currently out there.
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