Shine a Light on PMDD - April is PMDD Awareness Month

BOSTON, MA, March 29, 2019 -- A global awareness campaign will kick off this April to help “Shine a Light on PMDD” on a little known, debilitating and life-threatening condition that takes an average of 12 years to be correctly diagnosed. 

Premenstrual Dysphoric Disorder (PMDD) is a cyclical, hormone-based mood disorder which impacts approximately 1 in 20 women and individuals assigned female at birth (AFAB) of reproductive age - a staggering 60 million worldwide. With symptoms including severe depression, overwhelm, and anxiety appearing in the two weeks before menses, PMDD takes a toll on sufferers’ ability to work and maintain relationships with partners and family. In the 2018 Global Survey of Premenstrual Disorders, out of 1,425 patients with prospectively-confirmed PMDD: 

● 16.8% reported having lost a job due to PMDD 

● 56.7% reported having lost an intimate partner relationship due to PMDD 

● 98% and 97% feel PMDD puts a significant strain on their intimate partner relationship and family relationships, respectively 

● 42.7% reported problems with parenting due to PMDD, with 10.5% feeling completely unable to parent during PMDD 

The relentless emotional and (for some) physical pain also drastically increases the risk of suicidal behaviors. In the same survey, 30% of patients with PMDD reported that they had attempted suicide to escape their symptoms. Sadly, this number does not include those with PMDD who have died by suicide, which suggests that 30% is a low estimate for the rate of suicidal behaviors in PMDD. Appropriate identification and treatment of PMDD are therefore important not only for reducing suffering but also for saving lives. 

The same survey also showed it takes an average of twelve years and six healthcare providers to receive an accurate diagnosis of PMDD. After years of suffering, individuals with PMDD describe learning about the disorder as a ‘lightbulb moment’. 

“PMDD has been invisible for far too long,” according to Amanda LaFleur, Co-Founder & Executive Director, International Association for Premenstrual Disorders (IAPMD), the global leader of PMDD awareness and education. “It’s underdiagnosed, misdiagnosed and, at worst, the lack of understanding leads to harmful ridicule and shaming of suffers. During PMDD Awareness Month we need to create millions of life-changing lightbulb moments across the globe so people can get the support and treatment they need!” 

This year, IAPMD is again collaborating with a coalition of organizations, including U.S.-based Me v PMDD and U.K.-based Vicious Cycle: Making PMDD Visible, to ‘Shine a Light on PMDD.’ Resources to support awareness-building are available on pmddawarenessmonth.org. Website visitors can access the PMDD Awareness Month Toolkit, find facts and figures about PMDD, create a fundraiser, and share their story.

Individuals with PMDD are encouraged to add their voice to the women's reproductive and mental health movement and receive timely updates on work underway to inspire hope and end suffering in those with premenstrual disorders. 

“This is a galvanizing movement in women’s health,” according to Sandi MacDonald, IAPMD Board President. “PMDD is a perfect storm where #MeToo and #TimesUp, meets mental health awareness, meets suicide prevention. This campaign will be that ‘eureka!’ or ‘light bulb’ moment of insight, and then sufferers and activists around the world are empowered to raise awareness of PMDD and increase access to effective treatment options.” 

While PMDD is directly connected to the menstrual cycle, it is not a hormone imbalance but rather a severe neurobiological reaction to the natural rise and fall of estrogen and progesterone. Symptoms occur the week or two before menstruation and go away a few days after bleeding begins. There is no blood or saliva test to diagnose PMDD, but these tests can rule out other underlying disorders. Diagnosis is done by tracking symptoms for at least two menstrual cycles. As noted above, women and AFAB individuals with PMDD are at an increased risk for suicidal behavior. Although PMDD has been included in the Diagnostic and Statistical Manual of Mental Disorders (DSM) and International Classification of Diseases (ICD) for years, it continues to be disregarded or misunderstood by doctors and the general public.

# # # 

Organizational Contacts: 

Amanda LaFleur

Co-Founder & Executive Director, IAPMD 

amanda@iapmd.org 

www.iapmd.org 

1-800-609-PMDD (7633) 

Laura Murphy

Project Co-Founder/Director, Vicious Cycle

hello@viciouscyclepmdd.com 

www.facebook.com/viciouscyclepmdd 

Twitter: @viciouscyclepmd 

+44 7739 342590 

Sheila H. Buchert Co-Founder & COO, Me v PMDD, Inc. 

sheila.mevpmdd@gmail.com 

www.mevpmdd.com 

727-421-1489   

The Voices of PMDD: Sharing our Struggles

Today we have a guest post from a woman who has taken what I think is the very healthy step of naming her PMDD.  Naming your PMDD helps to separate you from your disorder.  You are not your PMDD and that is what we all need to remember when PMDD strikes.  We are more than our PMDD, and better than our PMDD.

I call her Agatha. 

Some of you may have met her unknowingly. Her presence is noticed only by my few nearest and dearest...and even most of them don’t understand her. I’ve decided to talk about Agatha because I spend so much time as/with her, I am tired of trying to explain myself, or feel guilty, or desperately sad that things annoy me when they shouldn’t even make a shadow. 

Agatha is my PMDD...or who I am for up to two weeks out of the month. Yes...EVERY month. I have PMDD...Pre-Menstrual Dysphoric Disorder. Have you heard of PMT (or PMS if you’re American)?  Well, PMDD also has to do with the menstrual cycle, but is a million time worse. Maybe a billion...at least. After I have ovulated and the hormone levels change, so do I. I become someone that has taken me years to recognise, and more to understand. I describe it as having the ‘Dementor’s Kiss’; Harry Potter fans will of course understand the reference. For the rest of you, that is when all of the happiness you have ever felt, experienced, or hoped for, is sucked out of your soul, leaving you with no choice except to dwell on every bad thing that has ever happened to you...in the deepest pit of despair. 

I now understand it has got worse the older I get, because I have more experiences. So there’s more happy to be sucked away, and more pain to be left with. PMDD doesn’t just mess with your mind and soul, it likes to play with your body too. Any pre-existing conditions are highlighted and heightened...luckily for me, I have a back condition, so usually I am in considerable extra pain in the lead up to the bleed. I also get a barely-controllable eczema outbreak, and permanent, draining headaches. Then there’s being so tired, that I’m not sure if I’ve been to sleep. And I’m pretty positive that the world tricks me by deciding to speak a different language to me...because I haven’t got a clue how to distinguish between words, let alone decipher what they are saying. It’s all very confusing, and delays cause you to feel very silly; therefore, it’s better not to talk to anyone.

Ah...but wait! Why would anyone want to talk to you anyway? You are nothing, and nobody. Your past experiences have shown you that, right? There’s no hope for you, so stay put and don’t move, because nobody wants you. Your children can’t stand you, you’re so irritable, and their noise hurts your oversensitive ears. They also want you to come out of your dark, safe hole - they want food, they want to talk to you, but they are far too loud for you, and they would be better off without you...right? You’re lucky your back is screwed, and your muscles are aching in every area, because then you can’t drag your unwanted, pathetic self into the road for some juggernaut to put the world out of its misery, fed up of having to have your unworthy ass live in it....no one could possibly want you around, and you should probably top yourself to do them a favour. Everyone you know would have a greater life without you in it. 

The disillusionment of the world eats you up, the unfairness of “the system” has you physically aching for the world to end. You dislike your family, you don’t want to talk to your friends...and there is nothing but pain and despair.

And then one day, I wake up and something feels different. I have a harsh stomach cramp, but that’s nothing compared to the aches and pains of the previous week. I smile at my text messages, and I kiss my husband - it feels nice. Everything feels nice, and everything looks nice. I go to wake my children up with the biggest hugs and talk about upcoming plans for fun things. Oh wow, I also need sex. Like NOW. I want sex ALL the time (see, there is an up side to imbalanced hormones!) my mind and body are depraved instead of in pain. It feels good. And I wake up the next day feeling the same...and so on. I have a wonderful two weeks of coping with everything and having big smiles, and then something happens that will either irritate the crap out of me, or a loud noise hurts my ears, or I wake up and can’t move because of back pain...so I check the calendar - shit, it’s Agatha time. 

I gave the person I become a name, so I can fight myself, tell myself ‘it’s just Agatha, she’ll go soon, just hold on’. This is my most recent tool for the battle - after exhausting diets, exercise, herbal treatments, vitamins, finally giving in to my Doctor and attempting anti-depressants. Nothing works. So it’s me against her.

She’s getting stronger, and I can feel her on her way. I’m not ready, I’m still not over last month’s visit. I want to keep smiling...but no, time to batten down the hatches, because she will be here by the weekend; I will be forced to face every demon I have ever encountered, and I’m scared.

Can’t give up though, I have to keep fighting. I can now differentiate between who I am, and what is caused by her. It’s me against her....

.....c’mon then bitch.

May is Mental Health Month - A Primer on PMDD

The following guest post was written by the blogger Cheekyminx. With her permission, several of her posts about PMDD are being featured on this blog. To find out more about her work as a PMDD Advocate, please visit her Facebook page, PMDD Life Support.

Many women the world over experience the usual discomforts associated with the premenstrual cycle. PMS is a well-known condition that often includes irritability, bloating, and physical pain. But if you feel like PMS takes you out of commission every month, there may be more to it for you. Could you be one of the growing numbers of women who realize they are suffering from Premenstrual Dysphoric Disorder, or PMDD? What many women, and indeed many doctors, do not know is that in 2013, PMDD was officially recognized as a mood disorder (this classification will have to do for now) experienced by about 10% of all women who menstruate.

Now word is getting out. So how do women who have PMDD discover they have it? PMDD is caused by a sensitivity to normal hormone fluctuations rather than a hormonal imbalance, and getting tested for hormone levels usually reveals nothing. Many women discover it when they are at their wit’s end, having tried birth control, antidepressants, and other treatments to target symptoms they often think are the result of something else…like bipolar disorder or depression. In fact, many women with PMDD report not only PMS-like symptoms that are extreme and debilitating, but also much more dramatic and difficult-to-manage changes in mood and thought patterns, often leading to misdiagnosis. But intuitively, they know there’s something about their monthly cycle that seems to be playing a role, so they begin to chart their symptoms.

These symptoms are numerous and vary from person to person but generally involve anxiety, increasing irritability, hypersensitivity of the senses, depression, rage and other uncontrollable emotions. Thoughts can become insistent and feel “uncharacteristic” to the person having them. It is as though the mind becomes polluted, distorting everything. PMDD also seems to exacerbate underlying medical conditions, making it unique to every woman and can include dizziness, sluggishness, bloating, heavy bleeding, and sore muscles. But by and large, it is the increasing loss of patience and intensifying irrationality that makes PMDD such a nightmare, not only for the women, but for the people they love.

In fact, many find that during the 10-15 days of their hormonal sensitivity, they lose interest in their partners…not just sexually, but often to the extent of detesting them altogether. Some report regularly breaking up with their partners on a monthly basis. This Jekyll and Hyde transformation wrecks havoc on relationships of all kinds, not just romantic ones. It’s difficult for mothers to parent and for employees to continue with duties as usual. Overwhelmed by fatigue, cravings, paranoia, or even suicidal thoughts, normal life remains out of reach until the sensitivity ends, usually with the onset of menses–though there is debate the sensitivity fluctuates for some women at other times in their cycle. What’s important to realize is that the symptoms do disappear, sometimes instantaneously, whether it is the day the menstrual cycle starts or several days later. And suddenly, things are back to normal…but often leaving a great deal of destruction behind. In fact, women with PMDD often feel as though they spend two or more weeks a month in hell and the other two or less making up for it.

Think you might have PMDD? Here’s what you’ll want to do:

1. Start by paying attention to your cycle and taking notes. Get yourself a pocket calendar or use and app like iPeriod or PMS Tracker. Then start keeping track. When do symptoms hit? When do they stop? What are the main symptoms and to what degree are they experienced? Do they progressively get worse? Think not just of physical symptoms. Consider your emotional and mental states as well. Are you more prone to tears or anxiety? Is it more difficult to think positively? Have others commented about a change in your mood?

2. Take several months of your notes with you to your doctor if you decide to take a Western approach. Explain that you think you may have PMDD. If he or she dismisses you, find another doctor–one who will help you determine whether or not you have it, explain your options (they aren’t all that great at the moment and there is no known cure), and work with you to help you cope.

3. Educate yourself and find additional support. As a relatively new disorder, there is still much to be discussed and researched about PMDD. Read up on it online and talk to others who have it. Women who realize they have a condition with a name to it are usually very relieved when they realize they are not alone…and not crazy! Facebook has several groups, both open and closed, including a support group for family members of PMDD sufferers that offer insight, coping strategies, the latest science, and a safe place to vent.

If you do indeed have PMDD, now that you know, you can give yourself the support you need to get through it. It may call for changes in your diet, supplements, exercise and meditation, or even medication. And if you don’t have it? Chances are you know someone who does, and she might not realize what it is. So share what you’ve learned with others and help spread the word about PMDD.

PMDD Awareness Month Ends, But the Struggle Continues

Today wraps up the end of PMDD Awareness Month.  I've spent the month sharing on Facebook and Twitter several posts from my Voices of PMDD series, where women with PMDD and their partners have shared their stories.  The quotes that follow come from Hormone Hell, the personal journey blog of a fellow PMDD Advocate, Jarrah, who asked her readers to describe what PMDD feels like to them.  I've chosen several responses that I fear we can all relate to in some way.  Please read on, and, if nothing else, know that you are far from alone in your struggles with the demon that is PMDD.  Perhaps one or more of these descriptions will help you to put into words for a loved one what it's like for you, each and every month, and raise awareness in your own way.

On my bad days it feels like my nerves are on the outside, that everything hurts, and there’s a heavy blanket on me that I can’t get out from.

It feels like nails in my brain that prevent me from thinking correctly. The nails stay in my skull for about 2 weeks and then they finally go away and I can think again.

Your brain feels like mush, your memory is poor. You're actually scared that one day you’re going to wake up and forget who you are. Your digestive system is going crazy, you’re constipated one minute, rushing to the toilet the next. Your bladder needs to empty itself 6 times in a single hour. You're hot, no you’re cold, umm, you’re hot again. You love your husband one minute and consider filing for divorce the next. If one more person chews, breathes or coughs, there will be bloodshed.

I’m angry, I’m sad, I’m laughing…now I’m crying. My joints ache. I am only 29 but I feel 99. My hair is thinning; it’s so dry it feels like straw. I have permanent dark circles under my eyes. My skin is so dry it’s flaking.

You’re so tired but no matter how much sleep you get, you still wake feeling tired. You’re hungry one minute, you’re nauseous the next. You can’t breathe; your heart races and you can’t stop sweating. You don’t want to be touched, you feel suffocated if someone sits close to you.

Overthinking is an everyday occurrence and often your head is swimming with thoughts that leave you feeling terribly anxious. You no longer look forward to anything, as each day is just a matter of survival. You have no passion and no longer think about the future. You hate this empty person you have become.

You start daydreaming about dying. Deep down, you know there’s a part of you that definitely does not want to die. You know that, logically, things are fine and you will be okay. But you can’t FEEL that. All you feel is despair, hopelessness, and a suddenly strong urge to leave this world.

Worthless. Empty. Angry. Bloated. Exhausted. Sometimes I just wish I could disappear…just lay down in the grass and get absorbed in to the earth somehow. Oh yeah, and Crazy. I know what I feel isn’t normal, but I can’t change it…at least until my period comes and then I’m right as rain.

Anticipation for hell week becomes a hell week in itself. I can’t control the choking wave of anxiety or the rage of this demon but I have changed my outlook. It will not own me.  I will not let it drown me.  I will swim and swim until I come up for air. Until the next storm. There have been a few hell weeks where no matter how hard I swam I could not escape the urge to let it pull me under and take me in its entirety. Those days and those times I don’t know how anyone makes it out alive.  

Rage, anxiety, mind going crazy, all of those things attacking you all at once. You wish it was over and the sad thing is you have no control over it. You see yourself doing all these dumb things and you try and stop it but it’s so hard to control. But you keep fighting because you love your family and you love yourself too much to give up!

Like a tightness of the skull above the eyes, like my skin and hearing is super sensitive, so I have a headache and am easily overwhelmed. This coupled with lowered patience and attention span means I’m really short-tempered. Sometimes that results in a snappy comment and then unreasonable crying (e.g. about burnt pine nuts), but other times it’s disproportionate rage. Sometimes it’s just a brain fog, where I sit and stare at the work computer, trying to figure what I’m supposed to be doing, and how someone is paying me to sit and feel like my powers of logic and reason have been pulled out through my eye sockets.

It’s like a switch that is flicked inside me as soon as ovulation begins. From that point on I become the opposite of what I consider to be my “normal” self. I’m suddenly extremely anxious, paranoid, worried, irritable and I can snap at the smallest things. The rages are life-destroying. They hurt everyone I care for, and scare off anyone else. My period finally begins and within a day or two, my mood lifts. The anxiety goes away, the paranoia is no longer there. I can think rationally and logically. I have energy to do anything I want, and sadly most of that time is spent picking up the pieces of the storm that lives inside of me, and has--for now--disappeared.  

At the start depression starts to set in, aching body, foggy head, headaches, high anxiety, pains in the stomach, sweating, panic attacks when I go in public, hysterical crying, at my worst, thoughts of suicide. Then my period arrives...all those feelings and thoughts are gone just like that…I’m back, me again, I’m back to normal. I can go to work with ease (if I still have a job). I can go out anywhere with no panic attacks, anxiety (what anxiety?) I am fun, I enjoy being around people and they enjoy being around me. I wish I could be this person all the time, I hate knowing it is short lived and the devil lady will be back again soon.

Sensitivity to light and sound…my son talks and talks and I just want to curl in a ball to escape. That’s horrible to say…but I just can’t handle it.

I always wonder if this mental illness will kill me one day—I’m sure it will. The brightest days are good. I enjoy them. The darkest days however, seem like I won’t ever escape them. Each time it feels like maybe this could be it, the one that I don’t come back from. But somehow I make it through. PMDD is cruel. It’s like every month, sanity is dangled in front of me and I have to hold onto it. There’s a glimmer of hope that this month I’ll be cured, then suddenly it’s ripped away.

I was sitting in my seat watching a movie, my whole body was tense, I was clenching my teeth, my heart was racing, and I was swallowing back the nausea I felt…I tried to push all those feelings out of my head so I could try to enjoy the movie. As I sat there I couldn’t help but think…So this is what my life has come to? It’s a movie for goodness' sake and my body is acting like I need to be on alert just in case at any second someone might try and kill me.

I ended up going for a walk to try to clear my head. My legs would only carry me half way around the block, my whole body was so fatigued and I was so nauseous the symptoms reminded me of how I felt when I was in the first trimester of pregnancy.

PMDD….a war you’re constantly fighting that no one else can see.

PMDD: Into Me See

The following is a guest post by the blgger Cheekyminx. With her permission, several of her posts about PMDD are being featured on this blog. To find out more about her work as a PMDD Advocate, please visit her Facebook page, PMDD Life Support.

I've said I wanted to write about some of the things that help me to cope with PMDD. Maybe another day. Right now, NOTHING is helping. In fact, everything is just making it worse! I suspect, hell, I know from reading the forums, that this is pretty common. Nothing helps, at least it seems that way, and everything is an irritation. A speck of dust in the wrong place can make me want to jump out the window. Yes, it’s irrational. That’s kind of the point, and I don’t need to be reminded of it…  At least I have some control over a speck of dust.

The reason nothing helps is because nothing makes this chemical shit-storm of body and mind go away. It is still there, demanding attention, making me behave in ways I cannot stand. But there are things that do bring modicums of comfort. I can take a bath. Sitting in the sunshine smelling the grass helps, too. There are also my standbys of yoga and meditation. I would be lost without them, but sometimes, they aren’t enough. Really, they’re never enough…not during PMDD. They just offer a bit of relief and keep me as stable as possible.

The saddest thing may just be that so many of us have to get through this pretty much unsupported and alone. Very few people get it enough to be of help. The fact is, if you don’t have it, you just don’t get it. This includes friends, roommates and partners who, needless to say, have a very hard time of it, and often wind up making everything worse, even if they don’t intend to. Even if it was me on the receiving end of this phenomenon, I don’t know how I would respond. I guess it would depend on my own mental state that day. Sadly, PMDD ruins plenty of relationships.

But one can dream that suddenly, it wasn’t such a horrible thing for others to cope with…

Dream Sequence

I wake up and I can feel the stirring of hormonal reaction inside my body. The good days have passed. Shit! Here we go again. Two weeks until my period when I can think and act straight again and not detest myself for having no control.

In walks my husband with a bouquet of flowers. “Good morning, sunshine!” he says.

“Drop dead.” Shit, I think to myself. Did that just come out? Oh, crap, oh crap, oh crap. I want to enjoy the flowers. They are so beautiful. Please, please, please let me just enjoy the flowers. How did he know how much they would mean to me? And yet, I can’t express it. The only words out of my mouth are “drop dead?” What is wrong with me?

“Honey, I won’t take what you said to mean anything,” he says. “I know what day this is…um…I know any day now I’ll be losing you for a week or two to that whatever it is…but I just want you to know, I’m going to do everything I can to make it easier for you this time.”

Really? I think, heart melting inside while I roll my eyes on the outside thinking of what a damned irritating [insert cuss word] he usually is at this time. How does he intend to do that? Go on vacation for two weeks without me? He would abandon me like that!

I go down to the kitchen expecting crumbs on the cutting board, knowing I’m about to get all wound up, and what’s this? The kitchen has been cleaned! I mean, really cleaned! The floor actually sparkles. It’s a miracle!

“Do you want breakfast?”

“Just leave me alone,” comes out of my mouth while "Yes, please make me your lovely eggs" never leaves my lips.

“I’ll make some eggs. If you don’t want them, you don’t have to eat them. If you do, I’ll leave them here for you.”

Hmm…what’s gotten into him? I start to think paranoid and judgmental thoughts. I just manage to hold back the bitter words that want to exert my independence, “I can make my own eggs!”

“Oh, by the way, I know how much it’s been bothering you that I hadn’t fixed that sink since we moved in two months ago, so guess what?”

What? Another empty promise to fix it…someday…next year? I’m biting my tongue because I KNOW I’m thinking with way too much exaggeration. Words start leaking out…words I KNOW will only do more harm than good…

“I called the plumber. He’ll be here next week when you feel better.”

He… I can’t help but smile. The tension in my body that usually just gets tighter and tighter is starting to untwine. This is all getting to be too much.

“I also tidied my room just so you won’t have to be repeatedly irritated by the disorder in there. I know it affects you and makes things worse. In fact, I’ve decided to take care of everything on this here list that I normally force you to tolerate and remind me of month after month like I’m deaf. I may let things slide at other times, but I realize it just makes things worse once your cycle again. Besides, it really is my responsibility…”

Oh, my God! I just want to cry now. I have to cry. So out it comes. I am sobbing uncontrollably. Great. Now he’ll take it personally and the world falls to shit.

He doesn’t say anything. He gets a pained look on his face…and then, it happens. Another miracle. He takes me by the hand, leads me upstairs, and holds me on the bed while I finish crying. At first, I push him away. I can’t bear to be touched. It actually hurts. But he holds me even tighter. He isn’t trying to get me to stop crying, or offering me Kleenex, or asking me what’s wrong. He’s just there. Strong. Reassuring. And I feel safe for what feels like the first time in my life.

When I stop, I feel stupid. I feel embarrassed. And I push him away. He doesn’t say, “I can never do anything right.” He doesn’t throw up his hands. He doesn’t call me crazy or make me feel worse than I already do. He just says, “Honey, I love you. I’ll give you some time and space. I’ll go get some groceries because I know we are out of bananas and chocolate…and frankly, that scares me right now.”

I want to say, “and we need lettuce” but I can’t get it out my mouth. Why the fuck can’t he remember the fucking lettuce? And then I cry some more, ashamed of my ridiculous thoughts but also, feeling a strange sweetness inside. I think I’ll bake him some cookies.

I know. It’s just a dream. Maybe it is too much to ask. Is it catering and kowtowing? Is it just too utopian? To expect another person to be able to behave this way when faced with judgment, contempt, rage, and the other unpleasantries that consume a woman in PMDD? Is it too much to expect someone not to take such seemingly personal attacks personally? To be able to be in our heads knowing what it is we need or want when it is suddenly impossible for us to just speak it? To be able to set aside their own discomforts with whatever has taken us over to wonder, my God, what is it like for her?

I suppose so. People are people after all. There no such thing as a Stepford Husband.

Then again, maybe this is all it would take to change the patterns and break the cycles. Maybe, PMDD is a dis-ease in consciousness designed to make us learn things we never would have otherwise about ourselves and each other, given the compassion and support to get through it. What are the lessons? If we knew that, we wouldn’t be going through it. Maybe learning them would be the difference between escalation and management.

Or is it just spiritual bullshit to think there are lessons. And even if there are, what if they aren’t being learned?

If nothing else, maybe this little dream illuminates the secret machinations of the very complicated and unsettling PMDD mind.

I hope so.

Postscript: I shared this with my husband who said it helped him understand me better. I told him I wasn’t going to post it because it just felt too exposing. But then, on one of the Facebook forums, I read a post from a young woman who had just had a blowout with her boyfriend. She was so upset, and I could feel the shaking in my own body…  I thought about what my husband said, that this helped him understand. I thought about what he did for me after reading this: fixed the sink, took me grocery shopping, didn’t walk away when I was emotionally over-stimulated but held me instead. He just wants me to be happy. Given a little information, he actually wants to put it into practice. So, I’m getting over my damned self and sharing this now because it just may help someone else.

PMDD Quote of the Week

~Everything, and I mean Everything, is going good in my life right now.  It doesn't make any sense at all but I'm so very sad anyway.~

PMDD Quote of the Week

~I wasn't always easy to get along with and I used to be less under control, but now I will warn the people in my life that I have PMDD and take responsibility for it but I still get harassed about it, like they think I'm making things up, like when it makes me irritable, or cold, or cry for no reason.  I make sure that they know it's that time and nothing is personal, yet they still act surprised when I show symptoms.  They try to debate me about my emotions, which after years I have come to accept I have less control over, but they don't trust me about my own experiences.~

PMDD Quote of the Week

~During an episode of PMDD everything is magnified 100 times and everything in life sucks...but to those around us life stays the same.  That's the insane part of PMDD.  Everything in your life is the exact same as it was the day before, or even an hour before, but suddenly, in your mind, it's all gone to shit.~

PMDD Quote of the Week

~Today I felt so good...happy, until I realized I felt too happy and I scared the good feeling away.~

The Voices of PMDD, The Other Side of PMDD

This week I'm going to redirect you to two of my favorite posts....after a while, posts get shuffled out of sight, and unless you know they exist, it's hard to find them.  But based on letters I've received and comments I've read over the past few weeks, these two are well worth posting again... 

The Other Side of PMDD

and

The Other Side of PMDD, Continued

Each is about what it is like to experience an episode of PMDD from inside a PMDD woman's mind.

May these posts bring you some answers and relief.  They can also be helpful for partners to read.

Be blessed,

Liana

Liana Laverentz is the award-winning author of two books on PMDD, PMDD and Relationships, and PMDD: A Handbook for Partners.  Both books are based on the most asked questions by her readers, and therefore the most popular posts on her blog, Living on a Prayer, Living with PMDD.  Both books are also an excellent resource for understanding your PMDD and starting a meaningful conversation with loved ones who want to know more about this debilitating disorder we live with daily. 

The Voices of PMDD, She's Just a Devil Woman

I posted Juliet's story once before, but then moved it to another page, and am now moving it back again, as I am rearranging my blog.  So, if you think you have read this before, you may well have, but it is well worth reading again.  If you are new to my blog, then welcome.  Once you read a few pages, you will learn you are not as alone as you might think you are, but in very good company!  Thank you so much, Juliet, for sharing your story with us, not once, but twice! 

She's Just a Devil Woman

Today, if you’ll forgive me, I’m allowing myself a small indulgence, little bit of self-therapy if you will. I’m having one of my PMDD days. Have you ever had that feeling that some other power or entity was taking control of your mind, orchestrating your feelings and directing your actions? Well, I get that once a month, and it’s never a positive experience. Thanks to a complicated cocktail of brain chemistry and raging hormones, on a four-weekly basis I find myself mutating into a fearsome, irritable, totally unreasonable monster.

Now, the vast majority of friends and not-so-close family will probably find this quite unpalatable. Most of them know that I pride myself on trying to keep an air of affability and co-operation, in fact my job demands that I maintain this, and 90% of the time, this comes as the result of a heartfelt personal passion that people are nice, deserve a fair break and should be treated with kindness. 

I’m so glad that these people don’t live with me.

When the time comes and the internal switch within me trips, you really wouldn’t want to be around me. Ask my family, I border on the psychotic, with episodes ranging from a disgruntled huffiness and tactical withdrawal to an all-out psychotic rage-monster screaming abuse for the smallest infraction.  It’s not something I’m proud of. It’s also something I’m not in control of. It’s called Pre-Menstrual Dysphoric Disorder, what I would only describe as PMT’s Evil Twin. It’s a condition that the medical world has only really started to recognise in the last couple of decades, but, you betcha, it’s been around a long time before then. History is peppered with tales of Mad Women, those possessed by demons and hurled into flaming pits, burned at the stake, drowned on ducking stools or thrown into archaic asylums. I can’t help wondering if a fair majority of these women were fellow sufferers of PMDD, especially as the whole ‘possessed’ moniker rings such a familiar bell. I know that, when I am in the throes of a particular bad rage episode, it feels like the ‘Red Mist’ has come down; I want a fight, but I don’t even know what I necessarily want to fight about. No amount of calm negotiation, reasoning or fair discussion can drag me down from my self-created pedestal of indignation. What makes it all the worse, is that, once the dust has finally settled down and I’ve returned to my ‘normal’ self, the whole episode is nothing but some misty half-memory. That wouldn’t be such a problem had I been the only victim of my angst-ridden screeching, however, it is my nearest and dearest that suffer too. As I slump in my chair, cup of coffee and much-needed chocolate bar in hand, I am forced to face the wreckage  of my emotional explosion- frightened children, an affronted husband and maybe even a terrified cat. It is then that the guilt floods in at the horror and turbulence caused by my ‘other self’ kicks in, and I find myself desperate to make amends. It is this desperation that usually sparks off stage 2 of my condition, the deep, hopeless depair.

A great amount of credit must go to my family for suffering this too long. My children are still too young to understand why Mummy flies into unprecedented rages over behaviours that, sometimes just hours before, elicited nothing more than a wry smile and an exasperated sigh. It must be a very confusing time, especially exacerbated by my repulsion at that time for any unsolicited physical contact. Poor kids, one minute they’re the butt of their mother’s rage, but then the usual offer of a cuddle just doesn’t make it better. As for my husband, well, the poor man has endured twenty years of the monthly Screaming Harpy episodes, and has done me the favour of never threatening to leave (even though he’s been shown the door or many an occasion). Together we have worked through many coping strategies and he has finally seemed to have settled on a vague acceptance and the eternal knowledge that it is only a passing phase. He is, indeed, my rock in the tumultuous seas of my hormone-addled mind, and I am forever grateful for the times he has held me as I weep on his shoulder in waves of remorse asking, yet again, “am I really like this every month?”
My PMDD has ruined more holidays, trashed more days out and screwed up more anniversaries then I care to remember. 

Of course, in this storm, there is a rainbow. Today, the medical world is coming to terms with the fact that such a condition of mine does exist, and we have progressed a long way from being diagnosed with “women’s troubles” and sent away from the doctors with a prescription of “deal with it, it’s part of the wonders of being a fertile female”. Medical experts the world over are still pondering over the actual causes of PMDD, some argue it is purely hormonal, others think it is cerebral. Some again cite environmental and dietary factors. For me, what seems to work best is a daily minimum dose of Prozac. It seems to help a lot, not so much in altogether preventing the attacks of irritability and rage that strike me, but more in allowing me a ‘buffer zone’ between my Jekyll and Hyde, the balanced me and the monster. With this buffer I have the opportunity to examine the causes of my anger for what they really are, and not to pick a monstrous fight over a pointless issue.

The best medical breakthrough for me, however, is not the treatment of the condition, but the recognition. To a degree, I feel vindicated, I’m not entirely mad. There have been many times, believe me, that I truly wondered if I was a mental-case, and therefore better off removed from normal society. That’s what PMDD does to you, it divorces you from your normal, rational self and throws you into a pit of rage and despair. The only positive thing for me, is that it’s a transient thing, relieved later in the month by the realignment of my hormones.  So many women dread the arrival of their period, I warmly welcome it. I cannot begin to understand those who suffer from other mental health problems from which there is no respite,  that must be another level of Hell altogether.

I only wish that this disabling condition had been recognised sooner in my life, and then, maybe, some relationships may have been different. My own mother, with whom I have good relationship today, openly admits that she “hated” me during my adolescent years, a feeling, no doubt derived from my sporadic and undeserved outbursts. Add to the mix an alcoholic father, whose own moods were driven by an entirely different but no less unpredictable ‘chemical’, and no wonder my teenage  home-life was sometimes a difficult and dysfunctional one.

Still, I live to tell the tale and I hope that my own daughter does not suffer in the same way that I did. Although, even if she does, at least I have the advantage of understanding her in the way my own family did not have the capacity for.

Thank you for reading my tale. If any of you are fellow sufferers, I hope you gleaned a small amount of understanding and knowledge that you are not alone. And for those of you who are fortunate enough not to suffer, at least you know when best to avoid me. Or better still, leave large gifts of chocolate at my doorstep before ringing the bell and running for your life!

The Other Side of PMDD, continued

Since I wrote that last post, and since I was PMDD-ing this week, I really paid attention to what was going on inside my head.   Thursday I was overwhelmed and angry.  Normally I love to feed people, take care of them, give them a hot meal and some home comforts.  But my partner, my son, and I had agreed it would be "fend for yourself" night on Thursday, due to different commitments.  I was therefore "supposed" to worry only about myself. 

But then they both showed up at dinnertime, hungry and neither one of them cooks.  So instead of just worrying about myself, I was suddenly in charge of a meal, and in no mood to graciously pull one together.  Instead I became like a drill sergeant...you, go set the table, you...chop those vegetables....you're in charge of the microwave....you, get us something to drink. 

Not my usual self at all, but I rose to the occasion and kept a lid on my resentments.

Even so, later on in the evening, after we'd come and gone to the Christmas show we were all trying to get to on time, I apologized to my partner for being so...well...bossy. 

He didn't mind.  He said, "You hardly ever get like that.  It's nice to see you're human."

Which got me to really thinking about PMDD and what's going on inside our heads when it happens.  Are we really screwing up, or is it our brain telling us we're screwing up when we are not, and that's what kicks off all the fights and relationship issues? 

Because you know when you're screwing up.  Everyone does.  We don't need people to tell us when we mess up.  Because we know it, inside, when we make a genuine mistake.  Pointing it out to us only makes things worse.  (And I am talking about humans here, not just PMDD women.)  We all get hurt and defensive and either go into withdrawal or denial--or come out fighting.

So here's my thought:  What if we're not really screwing up--we just think we are, and so we act accordingly...by coming out fighting?  The best defense is a good offense...that sort of thinking.

It's something to consider.  Because while I thought I was being overly bossy...he just thought I was trying to get everyone fed and out the door in time.

Fast forward to Saturday afternoon.  I am in a rage.  I know I am in a rage.  Thank goodness I am alone.  I think that is part of why I am in a rage.  I don't want to be alone.  I'm tired of working, and I want to take a break, do something fun.

But at the same time I know that if someone shows up...my partner or my son...that's not going to make me happy, either.  I know this, because in that moment, nothing can make me happy. 

So it was best that they each had something else to do for most of the day.

But meanwhile I stewed.  And anything and everything that didn't normally bother me, suddenly bothered me, big time.

By the time my partner arrived to go to church, I was angry and I. Just. Didn't. Care.

But I had spent the day "watching" myself, or practicing awareness, so I knew I was angry, and I knew there was no reason (aside from my hormones) for me to be angry, and I knew I was being irrational, and I knew I didn't want a fight.

So I asked him...Do you ever feel like you Just. Don't. Care?  You don't care whose feelings you hurt, or who you piss off, or what people think?  You've just had it, and you're just going to say and do what you want to say and do?

He said yes, he had felt like that.

I said, "Well, that's the way I feel right now."  Like I am going to say and do what I want to, and nobody better get in my way.

"I see," he said.

"I'm just warning you," I said.  "So that if I do or say something totally irrational, you don't sit there wondering 'What just happened?'"  I'm in that kind of mood."

Oh.  Okay.

And that was the extent of it.  There was no incident.  We had no argument.  We went to church, and then we rented a movie.  We had a perfectly pleasant evening. 

But I felt better letting him know what was going on inside of me, so that should I snap, he wasn't taken by surprise.

He appreciated knowing I was on the edge.  We settled into a quiet evening together.

"So you can control it?" he asked at one point.

Well...yes, and no.

I can control it up to a point.  But when the dam bursts, it bursts.  And at that point, I can't control it. 

My goal is to keep that dam from bursting.  To keep from snapping out on those closest to me. 

Because it is my goal, I am getting more and more successful at accomplishing it.

But I can tell you of a thousand times where I failed.

Try to imagine walking around with a totally irrational "Don't fuck with me" attitude going on inside your head.  Try to imagine this happening several days a month, like clockwork.  It switches on, it shuts off.  You have no control over when it does either.  All you can do is hang on and hope you (and your relationships) survive the ride.

For instance...take a totally normal exchange at the deli counter when you're in one of these moods. 

The clerk asks what I would like.  The clerk asks "sliced or shaved?".  This question totally pisses me off inside...I'm there every frigging week (not true) ordering the same damn thing (close, but also not true) so why can't they effing remember what I like?  (unreasonable expectation).    

Are you seeing how a PMDD mind works?

Meanwhile, I am smiling and politely answering, "sliced" like I do every time, and feeling like I want to punch the next person who crosses my path.

It's really not about you.  (Although it can be, so don't think you're completely off the hook).  It's about doing battle with thoughts that come out of nowhere and are sometimes voiced before you can stop them.  It's about hearing or seeing or doing something and placing the most negative context on it that you can possibly imagine.  It's about not knowing what you want or how to make it better. 

As I told my partner..."Don't even try to make me feel better right now because you literally can't.  You will not be able to win, no matter what you do."

But there are things we can do to keep it from getting worse.  Sit quietly together, watching a movie or maybe listening to music or napping or reading books.  Hug without talking.  Go for a walk.  Just be together in silence, or at least a peaceful atmosphere. 

For me, silence is best, so that I can concentrate on doing battle with the misperceptions going on inside my head.  So that I don't say something I will regret.

In short, when I am PMDD-ing, don't confuse me by asking questions, or by wanting something from me.  This is a time you either need to give to me (your love and understanding) or get the hell out of my way.

There's really no in-between.

The Other Side of PMDD

"My wife has PMDD 2 weeks each month. I can now track it on a calendar. The meanness, sharp tongue, irritability, over-sensitivity to the slightest comment...it's all there each month, like clockwork. I used to make the mistake of reacting to her negativity, which results in a showdown at the OK Corral with talks of divorce, etc., etc. Now, I just keep my mouth shut, offer my help, not reacting to the negativity. It's not easy at all. My only escape is to go to the gym when it seems everything I do is wrong in her eyes. But I bear it each month because I love my wife and I know it's not her. I say she becomes Mr. Hyde once a month for 2 weeks, and I just learn to keep my mouth shut. A big exercise in tolerance and patience. If you love your wife or special someone, tolerance and patience are vital. If you don't have them, you will suffer."

This is my most recent comment.  I thank God for Anonymous, because it allows me to print this comment in full--and use it as the subject of this post. 

This man is suffering.  My heart goes out to him.  My admiration and respect go out to him as well, because he loves his wife and refuses to let her PMDD ruin, end, or dissolve their marriage. 

What he says is true.  "If you love your wife or special someone, tolerance and patience are vital.  If you don't have them, you will suffer." 

I suspect he is talking about himself, here, but he could just as easily be talking about the both of them.  Much is made over the suffering of the non-PMDD partner in a relationship.  But let me say this -  as much as you are suffering by being the brunt of her emotions, she is suffering at least twice as much inside.  She doesn't want to be doing what she is doing.  She is often as horrified as you are by what comes out of her mouth.  Perhaps in that moment a part of her malfunctioning brain wants you to suffer as she is suffering, but overall, none of us wants to have PMDD, much less every month.

To partners like the man above, I am grateful beyond measure.  One, because you treat your PMDD woman with love and respect, and two, because writing that comment allows me to see where you are coming from, and to respond to what you see from the outside with what is happening to me on the inside.

Notice I didn't say what is happening to your PMDD woman.  That, I can not know for sure...but by explaining what happens to me, I might be able to open the door to a conversation between the two of you about what happens to her.

I'm going through an episode right now.  It started about two days ago.  I'd like to say I can pinpoint when the slide began, but I can not.  It seems like a gradual shift, a slow sinking into the darkness, as opposed to coming out of an episode, which I have literally felt in my head when my "brain" snapped back into place.  The return to sanity can be instantaneous.  The gradual slide into anger, despair, and hopelessness can take what feels like forever. 

So...while this is what you are seeing on the outside--a moody, irrational, unreasonable, emotional, maybe even rude or strangely acting woman--I'm going to tell you what's happening on the inside.  My head hurts, my body hurts, I didn't want to wake up this morning.  I feel like I have been drugged.  My mouth is dry and there is a tightness behind my eyes reminiscent of a hangover, but I have not had any alcohol.  I feel fat and smelly and ugly.  Yesterday, in the hopes of cheering myself up, I decided to organize the photos from my Trip of a Lifetime six months ago.  In every single photo I was in, I hated how I looked. 

Normally, my looks do not bother me.  At all, as I know I am loved just the way I am.  Yesterday, I was obsessed with my body image.  Couldn't find enough flaws to point out to myself. 

Okay, so that project didn't turn out.  Yesterday, I also went to a funeral.  It might not have been the best of ideas, but really, you have no choice when these things happen.  You either go or you don't go.  I felt that paying my respects was more important than hiding in my cave.  I waited until the last half hour of the viewing, so that if anything went awry, I had a natural exit.  As it turned out, there were several people there I would have loved to have stayed and talked with.  Sad circumstances, but I enjoyed seeing them all again just the same. 

The funeral itself was lovely and poignant...one of the most beautiful services I have ever attended...

But it sparked thoughts of death and dying for the rest of the day.  Who's going to go next?  How long do I have?  How many of us will be here next year?  What do I want to do with the time I have left?

This very question nearly devolved into an argument between myself and my partner last night.  Normally I am happy to let life unfold as it will.  Last night there was an urgency, an almost desperation behind my thoughts and words.  We need to do this, and we need to do that, and we need to do it NOW. 

I will feel very foolish when that feeling goes away next week.  I know this already. 

If he had argued with me instead of  patiently "listened" to me, I would have (at least mentally) declared the relationship hopeless and over.  There would have been harsh words and an explosion of tears. 

I suppose I should be happy that I'm only going to feel foolish.  Especially if he takes my dark words to heart....while I've blissfully gone back to my "It's all good" mode.

If you were my partner, wouldn't you be confused?

Another example:  Our church music minister plays guitar, has a beautiful voice, and chooses upbeat songs.  Normally I love to sing along with her.  Last night her music irritated the hell out of me.  She didn't do anything different.  I was the one who was different.

Inside.  Inside I was different.  But I never let on, not on the outside.  If I had, I'd only come off as crazy.

When we got back to the car, after a very uplifting service, I told my partner, "Right now, I could tell you what is wrong with anything.  You just name it, and I will tell you what is wrong with it."

This is where the "I can't do anything right" sentiment comes from in partners of PMDD women.

I spent most of yesterday alone, as my partner was busy elsewhere.  Even while my PMDD self was irritated beyond words at that, I was glad that he was not here, having to bear the brunt of my irrationality.  I knew, as he would have known had he been here, that there was absolutely nothing he could do right yesterday.

So it was best that he was elsewhere.  The same went for my son.  He walked in the door, aiming for a quick change of clothes, and within two minutes I was not speaking to him.  It was best for him, and for myself.  He left after giving me a big hug and telling me he loves me.  As I shut the door behind him my thoughts were, "Yeah, right."

I adore my son, and we get along great.  Anybody who knows us knows he loves me, too.  He can get manipulative, like kids do, and I let him, like Moms do, but the love is always there. 

Not yesterday.  Even though it was being freely offered, I wasn't feeling it.

Yesterday I was feeling my most unloveable.  Old, dumb, lazy, overwhelmed, uncertain, weepy, morbid, incompetent, uncaring and unkind.  In real life, I am none of those things.  If anyone had been around me yesterday...if I had not spent the day alone (except for the funeral)...I would have snapped and snarled all day.  Why? 

Because I was feeling extremely vulnerable.  I was feeling worthless, useless, and like every decision I'd ever made in my life had been wrong.

Hello?

For one, that's not even possible.  But there you go.  PMDD doesn't make sense. 

So you're walking around, feeling gross physically, mentally, and emotionally, and you just...well, you're miserable inside.  Nothing can make you happy, and nobody better try...because if they try they will fail, you'll see to that...and if they don't try....well, you'll have something to say about that, too.

It's no wonder I get letters from PMDD women who fear they will spend the rest of their lives alone.  Who can deal with someone like that?  Where nothing you do is right for days, sometimes weeks, on end.

Yesterday I could have gone on a rant like you wouldn't believe about what was wrong in my life.

Funny, I was perfectly happy with my life three days ago.  Feeling rather blessed, actually.

Okay, so this personality change is bewildering enough to watch from the outside.  Try to imagine what it feels like from the inside.  Try to imagine what it feels like when your brain feeds you lies all day long.  Nobody likes you, everybody hates you, you're nothing but a big screw-up, a slob, a loser, a bad (mom, sister, daughter, friend, wife, girlfriend - fill in the blank), you're fat, you're ugly, you're disorganized and uncoordinated and talentless, your life is a mess, even your own (fill in the blank here) doesn't like you....

You spend all your energy fighting off these lies in your head.  Another blogger, Laura, put it really well.  PMDD is a bully.  So here you are, being bullied by your PMDD.  You're feeling your worst, and at your weakest.  Someone says something to you.  Something that in your PMDD state, your brain twists around to the most negative implication possible.

What are you going to do...fight or flight?

The primitive brain has us fighting.  That's where I think my brain goes during an episode of PMDD.  Into primitive, reptilian, survival mode.  It's fight or flight, survival of the fittest, baby, and I'm going to see to it that you go down in flames.

The opposite of fighting is withdrawal.  Withdrawal into ourselves--where we let the PMDD bully run rampant inside us--and withdrawal into depression--where we accept what the PMDD bully says, and beat ourselves up even after he or she is long gone.

Try living with a bully inside your head for two weeks a month and see how long you last before you lose it one way or another.  Either through anger or tears, or both.

So yes, while it is undoubtedly hard on our partners and the friends and family who love us, keep in mind that PMDD is no picnic for the woman herself, either. 

She's doing the best she can with a temporarily malfunctioning brain.  She doesn't want to ruin your party, your weekend, your vacation, relationship, or marriage.

She just wants to feel safe, from demons neither of you can see.