What a Google Search Won't Tell You About Premenstrual Dysphoric Disorder

I used to never talk about premenstrual dysphoric disorder (PMDD). I guess when you “win the lotto” you don’t really want to talk about it because there’s always a stigma around these kinds of things, around any kind of mental illness at all.

PMDD isn’t talked about a lot anyway though, which also makes it harder for those of us who do have it, to be open about it. No one I know, except for one person, even knew what it was when I mentioned it. It’s awful. It’s a terrible thing to go through. And here are all of the reasons why that WebMD and Google won’t tell you:

1. It’s like PMS on overdrive before your period.

For four days (if you’re lucky, for some people it’s longer) before your period comes, it’s like experiencing PMS in overdrive. Irritable times 10, uncontrollably crying for no reason at all, hating life, and so many other symptoms. Just think of all of your PMS symptoms and then imagine amplifying them. It’s scary. Terrifying, actually.

2. You aren’t yourself with PMDD.

I mean this literally. You don’t feel like yourself. You don’t act like yourself. You look in the mirror and you don’t see yourself. It’s like you’re on the outside looking in and screaming, “What is wrong with me?” Four days (or more) later, you’re like, “Oh, there I am. What happened? Why me?”

3. The lows are really low.

There were times where I felt so low I didn’t think I’d make it to my 37th birthday. It was even worse being in a state where, at the time, I had no friends, and I didn’t have any support. My husband wasn’t supportive. My family wasn’t supportive. I was alone. I pulled myself out of those really dark places alone and the only reason I’m alive today is because of my two kids, and honestly, that’s it. (Side note: if you’ve ever pulled yourself out of something so dark like this, I’m proud of you. Because doing that is hard, especially alone.)

4. It’s “supposed” to only last a year and a half, sometimes only a year.

You have to track it for months to even get the diagnosis at all while you’re feeling like you’re losing yourself and who you are as a person. You have to figure out your triggers, what helps expend that negative energy, and what you can do to minimize the symptoms. It’s exhausting. Imagine doing this as a parent or a stay-at-home mom. Running to and from all the time. I was tired. Even if you’re not busy 24/7, it is still a mentally exhausting thing to go through. It’s still physically draining.

5. You can lose a lot.

And by a lot, I really mean a lot. You can lose family and friends who don’t understand or who don’t want to understand. You lose a piece of yourself every time you try to explain this to a medical provider who isn’t trained or doesn’t have the knowledge of PMDD, because again, it’s not talked about enough. I felt “crazy” every time I’d try to explain it wasn’t just PMS. PMS is child’s play compared to this. You think I’d be sitting in office #292 seeking out answers if I thought it was just PMS? No. I’d have taken a pain reliever and called it a day. But you also lose so much more when the family you’ve built a life with can’t or won’t support you because they don’t get it, don’t want to get it, or don’t understand. You can realize PMDD has really cost you just about everything in your life.

But now I’m over a year and a half past when my husband and I first suspected PMDD came to take up residence in my life and I’m still experiencing all of the above. The worst part is now I don’t know if I still have it or not because in September I was diagnosed with post-traumatic stress disorder (PTSD), and depression and anxiety as a result of that. My monthly is off schedule because my body is in constant stress and survival mode making it impossible to track my symptoms anymore.

I have flashbacks, nightmares, and I get anxious all the time. I seek out safe havens when I feel threatened. I can’t open up to anyone, ever, about how I feel because rejection is a trigger for me and I’ve already lost enough people trying to explain I have PMDD. I had to start over with coping mechanisms because some of what worked with PMDD doesn’t work with PTSD. Large crowds bother me, but loud music and dancing doesn’t. I now hate the snow and the winter when I used to play in it like a kid.

Then there’s the weight. I lost a significant amount of weight in four months. Way to go, right? I did it because, first, I needed to expend all of that energy I had so when PMDD came around it wouldn’t be as bad. And second, my house became my prison because no one understood me no matter how hard I’d try to explain. Either I couldn’t fully describe what I was going through in correct detail or they just didn’t understand. Either way, I didn’t have any support so I’d leave any chance I got and went walking, running, hiking, or rowing. It didn’t matter. Any physical activity I would seek out. Then when I lost the first significant bit of weight, which I was super proud of, the weight kept coming off. I’ve currently lost even more because of the stress of my household and not feeling like I have control over my own body. Going through PMDD and then PTSD alone and without a support system is hard. It’s stressful and causes me daily anxiety.

Here’s why I started being so open about PMDD in the first place: When you don’t know what’s causing this massive shift in your body, when you feel like a totally different person and you are literally alone to go through it yourself, things start to feel like you don’t have a way out.

Every day, multiple times a day, I would question whether or not my kids would be better off without me, or what purpose I was actually serving. It was hard to get out of bed every day, it is hard to get out of bed every day, and it’s hard crying off and on throughout the day knowing sometimes my kids see me in pain. It’s hard being there for other people when you feel like you don’t have the capacity to help your own self. It’s hard when everything inside of you is screaming for something to change, something better, something different, but you haven’t found it yet.

I’m in therapy. I have been for over two years. I switched therapists five months ago because I finally felt like my first one wasn’t able to provide me with the tools and resources I needed to find my way back to myself. There hadn’t been any improvement in the areas that would have made the most difference, especially my marriage. My therapist I have now has trauma-informed training and has already made a huge impact on how I view myself, my situation, and the world. If anything, I’m grateful that I didn’t just give up and I sought out a new provider.

And you know how I know this therapy is working? Healing is uncomfortable. In my opinion, if you’re not uncomfortable, you’re not making progress. I’m uncomfortable every time I have a session and I’m uncomfortable every time I take her advice or I remember her words in everyday conversations. But the most important thing she’s told me to date is that I don’t have to believe that it gets better. I just have to believe that it gets better eventually. And for once, I do.

For more information on PMDD vs. PMS, visit Dr. Lisa Watson’s site.