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.

I Love You Honeybear

“I brought my mother’s depression. You’ve got your father’s scorn and a wayward aunt’s schizophrenia. But everything is fine. Don’t give into despair, cause I love you honeybear.” – Father John Misty

There seem to be a a few basic expectations for relationships depending on who you ask.

  1. Need each other just enough… but don’t need each other too much (this constitutes as codependency and is frowned upon by most folks it seems).
  2. Respect aka be nice.
  3. Like a reasonable amount of the same stuff. Religion falls here too.
  4. – In one form or another. (For asexuals this is negotiable) General physical attraction falls under sex.

I suck at number one. When it’s PMDD time… it is like my brain is a ship and everything that had me tied to my port was cut in one fell swoop. All of the sudden I need to know that you’re here. Not just tolerating me. Not just saying something to make me shut up, but here. On my side.

PMDD or Paranoid. Malicious. Depressed. Dependent. I just made that up.

Often, it’s so intense that most people don’t know what to do with me. I lash out in insecurity because I’m convinced everyone thinks I’m ridiculous. My anxiety is so high that I’m sensitive to immense amounts of noise. The thing my boss said to me last week, the way that woman looked at me in the grocery store and my fears about my effect on my kids begin to swirl in front of my eyes. “It’s all hopeless,” I think. I convince myself that this misery is the rest of my life and I am a burden to my friends and my family.

Where does a partner fall in this? When difficulty maintaining relationships is a symptom of your disorder, how do you even keep one around long enough for them to learn?  In my ideal world, a partner helps me navigate life. I’m not a full time job. I just need some help getting back on course every once in a while. Once a month to be exact.

When your grandparent with Alzheimer’s begins reacting to over stimulation, do you dismiss them? Do you just sit there while they spiral into destructive behavior? Do you tell them that they’re crazy? No. Of course you don’t. You help them to calm down while you take them into a quiet room or ask people to leave. You hold their hand and remind them you are on their side. When they scream at you that they don’t know who you are and to leave them alone, you walk away for a while… but you come back.

Is that really a relationship though? Can someone ever really love someone like me? Or will I forever be seen as the energy leech they dated one time? It is my hope that there is someone out there who doesn’t feel like I suck out their soul. Someone who knows that my disease isn’t all that I am. I want to write a blog with a happy ending about how I’ve figured out how to relationship with this disease but I haven’t. Thankfully, someone else has!

The Gia Allemand Foundation has a video about relationships and PMDD that I came across about an hour into writing this blog so I am going to link it here. It was so encouraging to hear from Amanda’s husband who talks about having to learn that PMDD wasn’t just this PMS where she could take a Midol and power through. In this video, they share different books and resources for helping people with PMDD build meaningful relationships. They talk about getting counseling as a couple but also as individuals to learn how to cope with what PMDD does to you.  I encourage you to check it out!

This disease deserves to be treated with respect. I wish you a partner who not only respects you but respects how this effects you. You deserve love. You deserve good things. Don’t forget it.

Once again, you’re not alone and if you’re reading this and you are spiraling, please call the National Suicide Prevention Lifeline: 1-800-273-8255

One More Time… With Feelings.

Is This a Fancy or a Feeling?

Before my PMDD diagnosis, my self-esteem was in tiny pieces all over everyone else’s floor. Who am I? Love me! I couldn’t figure out why I was being so irrational and if that was because of who I was spending my time with, or if I was just as screwed up as people seemed to think. After my diagnosis, I spent a lot of time trying to figure out what was just my opinionated personality and which attributes were caused by the PMDD. When you’re dysphoric, it all seems rational.

PMDD comes in a variety of flavors; as many as exist on the personality spectrum. To better understand what aspects of your sometimes less “enjoyable” actions are part of your personality and what is genuinely PMDD, exploring your personality a bit can help. The New York Times wrote an article on the better personality tests out there. There are books upon books about these personality types. Educate yourself. Facts will build your confidence and lessen the post-ovulation tsunami of guilt we all know and love. Isabel Briggs Myers said, “Whatever the circumstances of your life, the understanding of type can make your perceptions clearer, your judgements sounder, and your life closer to your heart’s desire.” 

Seeing a therapist that can help you define which ideas are less logical and which are more significant is ALWAYS worthwhile. You can ask them to help develop coping mechanisms that are beneficial as opposed to the choices that can harm you or others.

Coping Mechanisms

Having a more technical or analytical approach to PMDD is a coping mechanism for me. I know that I’m erratic at times and so I tell myself, if I can wrap these ideas neatly in a box to share with potential friends, I will sound more sane. The goal, motivating those around me to be more tolerant. It works until I insult them in a panic of dysphoria, accusing them of being a womanizing jerk. Then the potential friend wonders what happened to the rational girl they’ve been friends with for 6 months. I’m working on a balance.

I know it seems helpless but there are ways to manage without a hysterectomy. Self care is mandatory. Making sure your body is running on all cylinders will help to alleviate some of the more manageable symptoms. For example: While you’re ovulating, exercise or cutting back on caffeine can help lessen anxiety and avoiding alcohol can help with managing some of the inevitable depression. You’re already stuck with it. Why make it worse with substances?

What fills your emotional gas tank? Reading a book? Taking a bath? Yoga or taking the dog on a long, quiet walk? Put the kids in front of their favorite movie with a snack and take care of yourself. They’ll live with a little bit of tv time but will you live without it? Justifying self care is especially difficult for parents, but you MUST take that time.

Talking about your symptoms will always alleviate some of your suffering. There are multiple support groups on the internet, including Facebook groups like PMDD Mom’s. Finding other people who know that your intention is not to hurt those around you gives you hope in the really dark moments. These people are also all willing to talk you through your monthly spiral when some of your non-suffering friends start to get a little tired of hearing about it.

If diet and exercise don’t help, try talking to your therapist or primary care physician about your SSRI options. They can refer you to a psychiatrist if you need to explore more complex options like more controlled anti-anxiety medications, and Adderall or Vyvance to help with some of the short term inability to concentrate.

Your health and happiness is valuable. Nothing you have said or done during your dysphoria deprives you of that right. Your life is valuable. If you’re reading this, you’re probably fixating and overwhelmed. Breathe in through your nose.. now out through your mouth.

Say this out loud, “It is all going to be ok. It isn’t hopeless. I just have to keep going.” If you can’t do this, and are genuinely considering suicide,  please call the National Suicide Hotline at 1-800-273-8255.

You’re not alone my friend. Remember that.

Love and Light,

Sarah