Things Your Partner With PMDD Wants You to Know

Have you ever seen one of the tv episodes where the evil doppelgänger traps the protagonist in a closet and walks around doing and saying horrible things to everyone in the town? PMDD feels like that. No one can understand why the person is acting so weird. They probably have a reputation for instability,  not finishing what they start or periodically saying somewhat outlandish things.  If you love someone who suffers from PMDD, here are a few things that you need to know:

1. We Have Just as Hard of a Time Figuring This Out As You Do: 

The idea of a chronic illness is foreign for most. What is it to never be able to slam a door shut on something that brings you pain? If you’re a control freak like me, this part of the diagnosis seems to be the most difficult to swallow. It’s the idea of the perpetual cycle of instability-> pain-> guilt I afflict on my family and friends that often leads me into my spiral of suicidal ideations.

I’ve spent the majority of my life trying to explain my dysphoria. I blamed my religion, my family ,myself, and even my choice to have kids. I was blaming everyone around me and when it came down to it, nothing ever really seemed to fit. When the PMDD diagnosis fell into place like the final number on a life long Sudoku puzzle, it was like I could breathe again. If you’ve chosen to be a part of our lives, we ask a little patience.

2. We Don’t Hate You. We Need Love.

You know all of those things your partner or friend said when they were in the middle of their dysphoria? That’s their insecurities talking. What is your partner’s love language? Learn it. I know it sounds impossible, but something you’ll need to do to make this work is to show them love when they’re dysphoric. Even if that means giving them some personal space or taking some for yourself.

They’re more than likely terrified that this disease is making you hate them. An actual symptom of this disease is broken relationships. You wouldn’t get angry at someone with arthritis in their knees for walking slowly. PMDD is a chronic disorder with no known cure. Learning to separate your friend or partner’s dysphoria from their personality by using a period tracker or keeping a watch on their symptoms can help you understand their words and actions as what they are. Symptoms of a disorder they’re trying to figure out. When I asked a group of PMDD sufferers what they want most from their friends and family,  many wanted to be remembered as they truly are during their dysphoria. Help your friend or partner by remembering the person you love, and looking past their dysphoria

3. Anxiety and Depression Exist Outside of Ovulation

PMDD is a cyclical prison that sufferers are subjected to without their consent.

Orange is the New Black protagonist, Piper Kernan said,

“You spend a lot of time thinking about how awful the prison is rather than envisioning your future.”

During ovulation, those who suffer with it do and say things that aren’t natural to their personalities. They know that these actions are hurtful or frustrating and they see the effects on the people around them. Because of this, there is typically a significant amount of guilt. This causes insecurities and anxiety between their period and ovulation. It gives sufferers a feeling like we can never quite meet societal expectations. We worry about committing to outside engagements like parties for fear that we’ll end up in the bathroom trying to calm down. I’ve put off going back to school for years in fear that I’d make it through a semester or two and then have yet another really bad month and stop everything.

Like many others with chronic diseases, PMDD can be debilitating. Encouraging your friend or partner that you’ll be there during the bathroom crying at parties or will help them stay on target in school will help them live a more fulfilling life. This confidence will help them maintain stability when suicidal ideations are strongest.

4. A PMDD Sufferers Biggest Fear Is that You’ll Get Tired and Leave

No want wants to hear about how getting out of bed every single day is a purposeful maneuver. No one wants to know how hard it is for you to hold down a job because of your panic attacks in the bathroom at work. Pain makes people cringe. People with chronic disorders do too.

Divorce is incredibly common for people with PMDD. Often we struggle with vulnerability and trust. I’m so aware of my mood swings that most of my humor is self-deprecating. I would rather put myself down before you have the chance to. I’ve had a few friends get so fed up with it that they stopped me mid-sentence and told me to say something nice about myself.

If you’re in a relationship with someone who suffers from PMDD, they will most likely need more consistent and purposeful affirmation than other people you’ve dated. Your partner or friend knows that this is hard for you. They may not demand diamonds or spend hours on their makeup but most are high maintenance in the emotion department and that can be a lot of work for partners. If you choose to maintain a relationship with a person with PMDD, let your partner or friend know that you’re in this for the long haul by actively making an effort to understand this about them. I hold most friends at arms length for fear that they will hit their capacity for crazy and disconnect. Feeling like there is something consistent and stable to anchor to during the storms will help lessen the monthly damage. I promise.

Dietrich Bonhoeffer said, “We must learn to regard people less in the light of what they do or omit to do, and more in the light of what they suffer.”

A personal dealing with PMDD must decide every single month if their life is worth living. A stable support system can help them make the right choice one month at a time.

PMDD and Suicidality – You Are Not Alone

As open as I am about my experiences with PMDD, the one topic I find most difficult to talk about is my tendency to not want to exist anymore. I worry that my transparency will be misconstrued as attention seeking. This is the furthest from the truth.

Judy Collins, a musician, writer and mother of a suicide victim said, “For many centuries, suicides were treated like criminals by the society. That is part of the terrible legacy that has come down into society’s method of handling suicide recovery. Now we have to fight off the demons that have been hanging around suicide for centuries.” It is National Suicide Prevention Month and although this is a year-round issue, I think it is timely to touch on something that kills 15% of women with PMDD.

This percentage does not include the women who make unsuccessful attempts.  I was hospitalized for active suicidal ideations four years ago. After that, the natural hesitancy or self-preservation instinct that comes with a suicidal thought was negated by an anxiety medication that the hospital had put me on. My husband found me in the bathroom. Shortly after, I was diagnosed with PMDD, and taken off of all medications. My daughter could have these symptoms one day and that is what fuels me to keep this balanced. I have not tried to hurt myself again but I still experience low points that psychologists call passive suicidality.

Passive Suicidality, a symptom commonly associated with Borderline Personality Disorder (people with PMDD are often misdiagnosed), is the relatively persistent wish to no longer exist. Active Suicidality is planning how you are going to make it happen. When I refer to myself as having suicidal ideations in these posts, I am referring to the fact that I often (3-4 times a month) wish to no longer be alive. When I have these thoughts I am not actively planning to make that happen. The opposite in fact.  I have to come up with ways to work through my lackluster enthusiasm for existence on a monthly basis by acknowledging the source(s). My unhealthy thoughts are often triggered by three things:

  1. Excessive alcohol consumption during ovulation in combination with interacting with large groups or just new people. – I have relatively intense post-interaction social anxiety. The entire way home from any social gathering I reel in all of the “complete nonsense” that came out of my mouth and convince myself that everyone hates me. If I consume excessive amounts of alcohol in tandem I will typically wake up the next morning in an emotional hurricane.
  2. The breaking down of a relationship that I care about. – Knowing that this disease causes intense and sometimes crude reactions to stressful circumstances has me beating myself up for weeks after a relationship goes through turmoil. What am I subjecting the people in my life to? What kind of awful person says these things? I tell myself that I am doomed to destroy all relationships in an emotional ball of flames and that I should just stop.
  3. The idea that I am only 29 and that for the rest of my ovulating days, THIS is my fate. – The cyclical nature of this disorder perpetuates an idea of hopelessness. Prayers for menopause circulate the Facebook groups I am a part of. Many people with uteruses dread the physical implications of being in their late 40’s and early 50’s. Individuals with PMDD see it as the light at the end of the 30+ year tunnel.

 

I have found that if I have chosen to eat poorly (i.e.: Lots of carbs, red meat and sugar) for consecutive days or consume too much caffeine or alcohol that I can count on having an overall poor demeanor the between ovulation and starting my period. This makes the aforementioned triggers more significant and causes the spiral that if not circumvented can end in more “active” thoughts. I make occasional statements about being “tired,” but not tired physically. An emotional exhaustion permeates my every waking moment. This is my clue to make some life changes.

Like what you ask? I know you asked. Let me tell you. Wait for it…… aaaaand a cure has not been found. Consistent treatment is spotty. Not everyone has access to a hysterectomy. I know what you are thinking. “This is not helping, Sarah.” Reality bites my friend… but we have to keep moving forward.  A few things seem to offer relief for most sufferers:

    • Cognitive Behavioral Therapy– This is simply defined as looking at your symptoms objectively and finding triggers. Therapists are a wonderful resource for you, your partner and your kids as you explore PMDD and what it means for your day to day life. When you are choosing a therapist, consider how you communicate, and how you prefer to receive information. Try different people until you find someone who you connect with. I have spoken to so many people who have gone to a therapist once, have a bad experience and never try again.

        • THIS INCLUDES SYSTEM TRACKING- I cannot emphasize how important system tracking is to your ability to be aware of what is happening in your own body. There are so many apps you can use. Click here for GAF’s suggested trackers.
    • Medications– Everyone has a different chemical makeup. It is important that you talk to your doctor about your options. The link takes you to the Gia Allemand Foundation’s Clinical Care Help sheet. This can help someone educate themselves prior to finding a physician and prepare for talking to them about a disease that is not widely known.

 

    • Self-Care:  The guilt that is triggered by our actions needs to be quieted occasionally. I have a difficult time just doing something for myself when I know I have been a lackluster parent, friend or partner. I am constantly working to compensate for my bad days though exhausting myself on my good ones. If you are like me and have a hard time coming up with things to do for yourself, the link will take you to a page where someone else has put a lot of thought into it for you.

For some, doing all of these things will not work. Do not give up. You are not a burden. People WILL miss you. Your life is not too messed up to have value. The more you talk about it, the less likely you are to act on it. Having a rough time finding someone to talk to? Gia Allemand has peer counselors available for you! Click here and schedule an appointment today!

You can also call the National Suicide Prevention Lifeline 24 hours a Day: 1-800-273-8255.

Reproducing With A Genetic Disorder- A Letter To My Daughter

Originally Posted on the Gia Allemand Foundation Blog

Hey Bug,

You are 8 years old and without a doubt the most gorgeous little girl I have ever seen. Your sensitivity, vibrancy, and compassion are enviable and they are going to make you a more compassionate person when you get older. I am terrified that something I do or that I have already done is going to tarnish that.

You do not live with me full-time anymore. You live with your father. The cyclical nature of my moods is not easy to live with and it seems to affect you more than your brother. The guilt from not being able to be the mother that you deserve eats me alive every time I think about you. What will you remember about me?

I often wonder what you will be like when you are 25. There are three distinct possibilities. I will get lucky, be successful, stabilize my life and maybe you will think that I am awesome and want to be like me. More than likely though, you will come to terms with this disease and have a tenuous yet strained relationship with me that exists on “your terms.” It is also quite possible that I will be the reason that you see a therapist monthly.

When I chose to have children, I was unaware of the implications of that decision. I had not been diagnosed with PMDD. I did not know that the choices I was making could take a young, innocent life and change it forever. PMDD is genetic. This means that the monster that crawls into my brain every single month could come after you as well. What kind of mother am I, who allows such a thing? I am supposed to be your protector.

You are here now, and this is your reality too. I want to be a good example for you and so I want to make a few things clear. I may not be able to undo this disease or the poor choices that I sometimes make, but I can make you a few promises:

  • I promise to be here. I promise not to take the easy way out or to cower under the weight of my symptoms. I promise to get up every morning and actively work to create a better world for you to exist in.
  •  I promise to get you tested when the time is right and if you test positive, I promise to help you find a good doctor who trusts your experiences. Nothing you say will sound foreign or intimidating to me. We will get up together. We will conquer this together.
  •  I promise to pursue my dreams so that you have confidence that this disease hasn’t put a cap on your possibilities. In turn, I will do everything in my power to help support the vision you have for your future and encourage you to keep moving forward even when the clouds look dark ahead. You will hear, “The only way out is through,” more times than you can count.
  • Finally, I promise to do my best to spread awareness of this disease, so by the time you are ready to consider having your own kids, doctors will have an effective treatment.

I love you baby and I cannot promise you that any of this is going to be easy. Thankfully more than just PMDD runs in our blood. We are from a line of strong people who have worked hard for what they want and what they have. I am confident that you will not let this conquer you. You are going to change the world.

Mommy

Handle It. Five Tips to Managing PMDD and a Career.

I want to preface this blog by saying that people who genuinely cannot function due to their mental health are not bad people. Nor do I think that they are lazy or have poor character. Mental illness is a disease like any other and exists on a spectrum.

I have often considered printing something like this and putting it on my office door. Maybe it some of the three hundred and seventy- two people who walk through my door each day would think twice and give me five minutes respite. As the full-time Wholesale Director and acting upper level management for a start up apparel company I wear a lot of hats. Not literally though. I look terrible in hats.

I love the challenge and complexity of the job but its stressful. Unfortunately, choosing to not go in because of my PMDD is simply not an option. So … what does one do? Quitting will not pay the bills and PMDD has not been declared a disability. I want to be more than just a blip on humanity’s radar. I need the money. I also need the challege keeping my overactive imagination busy with productive problems. I have to manage this disease, the depression, the anxiety and the suicidal ideations. I do not take medications and so I came up with a list in regards to my current PMDD management plan:

  1. Tracking Symptoms. – Get a period tracker. This gives you insight into your cycle. Knowing your body and how you react is going to enable you to control your environment, helping you to fight back a little.  Pay attention to your moods each day during your cycle. Maybe even keep a cycle journal. The Gia Allemand Foundation is working on an app for this right now! So excited.
  2. Self-Care: I’m a mother of two and “me-time” is hard to come by. I deliberately instituted hard 8pm bed-time rules so that Mommy could have a glass of wine (or Sweet Tea during PMDD) on the front porch in silence. I need it. We have a system that we follow every night. Dinner-bath- cuddles- teeth- potty- bed. Sure, things happen but knowing that my scheduled quiet time is coming helps me deal with things that may come up.
  3. Caffeine/Alcohol consumption – My PMDD presents primarily as anger or anxiety in the work place. On those mornings that I wake up feeling dysphoric, I know not to consume coffee. It will only turn up the volume on all of those feelings that I’m fighting to control.  Drinking during that time typically results in my depressive spirals.
  4. Dietary changes- As much as I HATE dieting, it really helps when I take a multi-vitamin and make more vegetable oriented choices during more symptomatic times. Drinking LOTS of water helps a lot too. It gives me more energy to fight back.
  5. Leaving Work At Work- I am a natural over-achiever and so I struggle with this but I have been deliberately not checking my email, responding to work texts or mulling over work problems at home. As a salaried employee the temptation is always there but I have to give my brain some space to process day to day life.  A proper work- life balance will not help you not WANT to give your notice every month but you will have the strength to remind yourself to focus on the positive.

Sometimes having a chronic disorder can feel like you are at war with your body. You only get one. Remind yourself of the reasons that you do this. You are smart. You are worthy of good things and you deserve a life that you own. Live your life on your terms. Do not allow PMDD to give you an excuse to not live the life you deserve.