PMDD: What the right diagnosis did for me

By Brett Buchert

In these politically correct yet politically volatile times, there have been arguments on both sides on whether or not we should prescribe labels to an individual’s mental health complaints.

On one side of the argument, some clinicians say yes, in order to effectively treat a mental disorder, we must first accurately understand what it is and give it a name. I’ve been used as a patient under this school and have been ‘definitively diagnosed’ in the past with both major depressive disorder and generalized anxiety disorder (as well as a slew of various personality disorder tendencies) by a computer and a monotone psychometrist that reads off about ten of these diagnoses a day. I cried for hours after that appointment. On the other side, some practitioners believe that we have over-pathologized all the idiosyncrasies of the mind, and caused more harm than good to the recipients of these cold diagnoses, as evidenced by my own psychometric experience. Everybody has bad days. Everybody gets a little nervous. We don’t need to go off calling that depression and anxiety in order to help a person feel better. It’s a complex issue and I don’t mean to address all or much of that here (even if I am itching to debate it with anyone who will listen). Here, I just want to speak a little bit about me, and my most recent diagnosis of PMDD.

But first I have to take you back…

Since around the sixth grade (also the time I had my first period), I’ve come to know, a bit too well, the anxious and sad side of me. She just arrived one day, with not much situational cause, and decided she wanted to stay. We’re often together, but rarely friends. I hide her behind fake smiles and success at school. High-functioning they call it, all the more dangerous they say. I smother her under the mantra that ‘Life begins at the edge of my comfort zone,’ and have not let her hold me back much from doing good, normal life things that made me vastly uncomfortable. But if that is true, boy have I lived!

I must say that my sadness and anxiety was not constant throughout my teens. It was definitely made worse by adjustments to new schools and new people (adjustment anxiety disorder, oh yeah! I forgot about that one). Also, sometimes I’d actually feel pretty good. I’d be happy to be on the planet with my friends, and my cat, and the family that I loved. Those times were bliss, but confusing. They’d also make it hard for me to work through things with my counselor. One session I’d be happy, positive, and confident, the next, two weeks later, wringing a tissue in my hand and trying not to sob.

It got so much worse in college. I was perpetually out of my comfort zone, beyond the shelter of my parents’ support, and everything was new. I also had a serious boyfriend, sweet, but complicated. We’d cry together most phone calls. It got better as I adjusted to college and made friends with the other rowers on the school crew team I’d joined, but that summer home, away from the environment I’d finally adjusted to and freshly parted ways from the boy I couldn’t healthily or logistically be with, the floodgates opened again. In the midst of break up blues, I received those crushing diagnoses (well duh!). Luckily, time healed me mostly and I was ready to return to school that fall.

Sophomore year was sadly more of the same. Some days I’d laugh nonstop with friends, then a few days later I’d cry inconsolably with my mom on the phone. I’d begun to get the feeling that this was hormonal (okay, you’re in the right direction!) or related to sleep, or not enough exercise (uh, you’re on the crew team!), or maybe from drinking black tea. Every time I cried became a “What did I do wrong?” plea. I was convinced that this was my fault, because if it was my fault, I could fix it! But which fault was it?! I’d continue crying.

That next summer I stayed at school and took a couple of classes. All my friends were staying too, and so was my new cool boyfriend who knew I got sad sometimes and was ready to provide support. But, it wasn’t enough. After a couple good weeks with friends and fun dates with him, I’d crumble again. I’d break down in his arms, telling him things most young men aren’t ready for. I’d tell him that I’d look at myself in the mirror and say ‘You are ‘f***ing ugly’ when I’d see acne. I’d tell him that I thought none of my friends liked me and only hung out with me because of pity. I’d tell him that he, and them, and my parents would be better off without me, that I burdened them all. I apologized that he had to be with me. I told him that sometimes I felt so sad and so much anxiety that I didn’t know if I could bear it. Sometimes I’d lay on the floor and feel what I can only call pain, and hope that maybe I would die soon so that it would stop. Maybe I’d get lucky.

A couple of days later in the back row of my friend’s Rav4 after a day trip with the whole friends gang I completely broke down in front of all of them. They knew I had mental health trouble, but they never knew the extent. I remember grabbing onto one friend’s hand as I began to sob, holding onto her as if begging that she, or they, or something could heal me before I would completely break…

That afternoon, I decided with my parents to take the fall semester away from college. I couldn’t do this on my own anymore.

That fall my mom got me an appointment with a functional medicine doctor. I was wary. Within the past two years, doctors had prescribed me four different types of antidepressants, and an anti-anxiety medication, all of which didn’t help me feel better and just furthered my hopelessness. However, this doctor was different. He listened to my history carefully and did not jump in with a new way to medicate me. Instead, he said, “I think it could be PMDD.”

PMDD? What’s that?

PMDD stands for Premenstrual Dysphoric Disorder, a genetic condition that affects about 2–10% of women in their reproductive years, although 80% of those women never receive a diagnosis, according to the International Association for Premenstrual Disorders (IAPMD). The symptoms of PMDD are debilitating and include severe depression, anxiety, anger, irritability, mood swings, hopelessness, and thoughts of suicide, in addition to many of the physical symptoms of PMS. The kicker with PMDD is that these symptoms arise during the premenstrual phase of a woman’s cycle (sometimes 1–2 weeks before her period) and subside each month around the time her period comes. PMDD’s cyclical nature differentiates it from other mood disorders, but can also make it very hard to diagnose.

It sounded like…me.

Well, we tracked my symptoms for two months, two menstrual cycles and brought the excel spreadsheets and graphs back to my doctor. He said then with confidence, words that changed my life: “Yes, you have PMDD.”

Another diagnosis to add to my list? Yes, I guess. But to me, it was much more. It was the right diagnosis, and the start I needed to change the way I looked at my life.

It’s been so much more difficult to do than these words can convey, but since my diagnosis, I choose to see a few things differently:

1. My mental health struggle was not and is not my fault. I have been sick and although that sucks, it is okay, and I am on the road to getting better.

2. I am not my symptoms. My depression and anxiety do not define who I am because I am so much more beyond them. I can finally see that now. I am separate from my sickness.

3. I’m actually a pretty good person. My PMDD had made me feel worthless, ugly, and unlovable. But PMDD likes to lie. Now I am able to see the truth. Sometimes I will still feel these things, but they are just feelings, they are not true.

4. I am not ashamed. For years shame added even more pain into my life. I thought I had to hide that I struggled to feel happy and calm in a situationally happy and calm life. I felt guilty for my struggle when so many people are struggling far worse with REAL problems. But now that I understand what my struggle is and that it’s not my fault and that it is also very REAL, I choose not to be ashamed. It’s very hard to be vulnerable and unashamed, but it’s worth it.

5. I am a PMDD WARRIOR! My mom would often tell me how strong I was to feel so anxious and sad inside and still be living a normal life. I only saw myself as weak, a girl somehow incapable of being happy with all the privilege and gifts I’d been given in my life. Now, I see my mom was right. Life has been hard. It’s hard for so many of us in this world. But when we choose to continue on even through our struggle, that is strength. Struggling doesn’t mean you’re weak, but continuing on means you’re strong.

Also since my diagnosis, I have been working with my doctor to find an effective treatment for my PMDD, and I’m so happy to say that we are onto something and my symptoms have decreased by about 70%. My PMDD went from nearly unbearable to more of just a nuisance. I owe so much of that to finally figuring out what was wrong, to finally getting a correct diagnosis.

I am still fighting. I am fighting my PMDD and I am fighting to fully believe what I can now see a little differently. But I am hopeful because I am finally on the right path to understanding and recovery.

— –If you or a woman you love has struggled with mental health, received diagnoses of depression, anxiety, or bipolar disorder, but have found little relief from treatments, it’s worth considering ‘Could it be PMDD?’ To find out more visit iapmd.org/about-PMDD/

About the Warrior…

Brett is the mind and heart behind Me v PMDD. Passionate about mental health, she received her degree in Psychology from the University of Florida and plans to pursue graduate school in Clinical Psychology to continue to advocate for the importance of mental health and fight for better treatments for PMDD Warriors. Brett is also Peer Support Team Lead at the International Association for Premenstrual Disorders (IAPMD), a former college rower, active rock climber, and cat and dog lover.

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Comments (2)

  • Elaine Barber 1 year ago Reply

    This speaks to me so much it could be my own story. However I don’t know if things are different in the UK or what but I went to see my GP this week and brought with me all my tracking for the last 4 months plus a list of my many symptoms but she didn’t even ask to see it- when I said I feel really emotional and anxious for two weeks she went straight into my options, but what I really wanted to hear is ‘you’ve got pmdd’ as It would be a relief to have an answer to the question I’ve been feeling for months. I mentioned that I heard about pmdd on the radio and thought ‘yep that’s me!’ And she then agreed casually ‘yeah that’s you’. Is that a diagnosis? I just thought I’d have to go into my symptoms more? I was sent on my way with a list of vitamins and a number to call for CBT. I just really wished she’d listened more, I felt like it wasn’t a serious issue to her?

    Me v PMDD 1 year ago Reply

    Hi Elaine, I’m so glad my story connected with you, but so feel for you that your GP wasn’t able to really affirm the diagnosis in the way you wanted to hear it. I think that was her way of making the diagnosis, but I would be confused about it just like you since she was so casual. I think it would be good to chat about this more with your GP at your next appointment and see what kind of treatment plan she can help you with, to see if maybe a specialist is needed beyond what she can provider. There are some great PMDD specialists in the UK which you can check out here: https://iapmd.org/provider-directory/. I so hope you find the support and care you absolutely deserve!
    Best,
    Brett

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