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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