The Stigma of PMDD

I love being a woman.

I love my body and everything it can do. I love feeling maternal and being in touch with my emotions and utilizing my intuition as much as my logic and any other skills I have. I love my jeans and boots and sneakers, but I love my dresses and makeup and long braids or messy buns just as much. I consider myself to be both body positive and sex positive and I love people in all of the different ways that they come. I also support the choices other people make about their bodies and how to care for them. I’m inquisitive and thoughtful and spend time reading up on any subject I want to learn more about. While biology has never been a focus of mine, I am fascinated by science articles and documentaries. Growing up, my parents didn’t do anything to make me feel uncomfortable about the changes my body went through, and I was able to speak openly when I had any problems. I’m not bothered by period blood or menstruation or the means that people choose to cope with menstrual hygiene. I’m not afraid of pregnancy in myself or others. In fact, I think all of the things a woman’s body can do are pretty damn rad.

Why am I telling you all of this about myself?

I am someone who lives with PMDD, otherwise known as Premenstrual Dysphoric Disorder. You may have heard about PMDD in tv ads for prescription meds or in articles in women’s magazines and you may even know someone who has it. For those of you who are not familiar, PMDD shares many symptoms in common with typical PMS (pre-menstrual syndrome.) Unfortunately, the symptoms are much more severe, may last for longer periods of time, and are often disruptive of everyday life. Like PMS, PMDD can change your sleep habits, how you eat, and can cause symptoms like bloating, cramps, and breast tenderness -and, yes- it can make you moody.

But, wait! There’s more!

PMDD is different from PMS in that it is also accompanied by changes in emotions and moods, often in extremes. It can make some people anxious, some people deeply depressed, and makes many people who experience it irritable and cranky. Some people who experience PMDD have some combination of all of these fluctuations in moods and emotions. People with PMDD are able to differentiate it from other mood disorders because the symptoms occur regularly and almost exclusively after ovulation and just before menstruation. I know that myself and others experience other physical and cognitive symptoms in conjunction with these. My coordination is not as good in the days before my period. I’m more inclined to experience “brain fog” and lose my train of thought. I get extra joint pain and muscle aches and some months I have full body aches for a day or two. For anywhere from 2-8 days, I often feel nothing like myself. It can be frustrating and heartbreaking.

It took me a long time to understand for sure that I had PMDD. When I was a young adult, I had heavy, painful, irregular periods and what I considered to be just nasty PMS. I went on birth control pills at 19. It took some trial and error of finding the right pill that made me feel better, but ultimately, I found one that worked and stayed on it for many years. (Thank you, Planned Parenthood!) I still had some mood swings during my “week off” pills, but for the most part, most months I could function well. After several years on the pill, I began to develop migraines. I tried different pills that gave me fewer migraines, but they were still happening. I was approaching age 30 and I have a family history of blood clots. It was finally decided that it was time I got off of the pill, just to be on the safe side. Blood clots are nothing to play around with.

In the years since then, my cycle has been more regular – typically predictable and easy to track. And while I can have severe cramps the first day of my cycle, my periods aren’t heavy and don’t last unusually long. The extreme changes in my moods, however, returned, and the other symptoms I mentioned above began occurring on a regular basis. At first, they were so bad, I wondered if I might be bipolar, and maybe it had nothing to do with my cycle. Sometimes, I didn’t understand my own behavior. I would be easily angered by minor annoyances. I temporarily dipped into soul-crushing depression if I didn’t hear from a loved one or I did something to disappoint someone. I feared the worst when minor things went wrong. My sudden distrust, sadness, and anger hurt the people closest to me. I missed work. I lost jobs. I pissed people off.

For many years, I’ve journaled on a regular basis. Not the kind of journal you keep, but a journal to purge my thoughts and feelings and clear my head. Initially, I did this to help my creative process. But I also started going back and looking at bad days that I had and started to see a pattern that I suspected, but was soon able to confirm – the mood swings and fights and bad days were always happening the week before my cycle started, and they were always worse when I also had more aches and pains.

Eventually, I took an online quiz designed to help determine if you have PMDD vs PMS. The results showed that I experienced all but one of the PMDD symptoms. I discussed it with my nurse practitioner. This was real. Armed with a diagnosis, I felt empowered to start helping myself. I started using a period tracker app to monitor my cycle. I got acupuncture once a month and started a round of Chinese herbs. I began giving myself extra time to rest and made it a point to drink less alcohol certain times of the month. I also started exercising.

While my symptoms are more manageable than they used to be, I still have bad months. My next course of action is to talk to my doctor about a low-dose SSRI to help keep me stable.

There is a popular notion that women’s health issues such as PMS and PMDD are imagined, or are part of some social phenomenon. You see “theories” (often written by male scientists and psychologists) that women who experience these symptoms are uncomfortable with their bodies, or hate getting their periods, or are afraid of pregnancy (or stressed about not getting pregnant.) As a self-aware, intelligent, and open-minded adult, I can tell you I feel none of those things about my body. We still have a lot to learn about how these kinds of issues affect our bodies and minds, but at least we are armed with the knowledge and tools to help manage our symptoms so that we can be our best selves possible.

But the most important tool of all is Listening – to our own bodies, and to our friends, loved ones, and patients when they say they are suffering.

Aura is an actor, writer, and podcast enthusiast living in Brooklyn, NY.