What is it like living with PMDD?
You might (or might not) know what PMDD stands for and what it is… I’ll report below the definition used by IAPMD, the organisation leader on PMDD and one of my main resource ever.
Premenstrual Dysphoric Disorder (PMDD) is a cyclical, hormone-based mood disorder with symptoms arising during the premenstrual, or luteal phase of the menstrual cycle and subsiding within a few days of menstruation. It affects an estimated 5.5% of women and AFAB (Assigned Female At Birth) individuals of reproductive age. While PMDD is directly connected to the menstrual cycle, it is not a hormone imbalance. PMDD is a severe negative reaction to the natural rise and fall of estrogen and progesterone. It is a suspected cellular disorder in the brain. Symptoms can worsen over time and or around reproductive events such as menarche (the first menstrual cycle), pregnancy, birth, miscarriage, and perimenopause.
Those with PMDD are at increased risk for suicide and suicidal behavior. Many people with PMDD, though not all, have a history of sexual trauma or depression. There is no blood or saliva test to diagnose PMDD although these tests can rule out other underlying disorders. The only way to diagnose PMDD is by tracking symptoms daily for at least two menstrual cycles.
Symptoms of PMDD
- Mood/emotional changes (e.g. mood swings, feeling suddenly sad or tearful, or increased sensitivity to rejection)
- Irritability, anger, or increased interpersonal conflict
- Depressed mood, feelings of hopelessness, feeling worthless or guilty
- Anxiety, tension, or feelings of being keyed up or on edge
- Decreased interest in usual activities (e.g., work, school, friends, hobbies)
- Difficulty concentrating, focusing, or thinking; brain fog
- Tiredness or low-energy
- Changes in appetite, food cravings, overeating, or binge eating
- Hypersomnia (excessive sleepiness) or insomnia (trouble falling or staying asleep)
- Feeling overwhelmed or out of control
- Physical symptoms such as breast tenderness or swelling, joint or muscle pain, bloating or weight gain
A diagnosis of PMDD requires the presence of at least five of these symptoms, one of which must be a “core emotional symptom” (one of the first four symptoms listed).
Source: IAPMD (HTTPS://IAPMD.ORG/ABOUT-PMDD)
And you can find lots and lots of helpful information and resources on their website so I don’t want to duplicate that… What I’d like to describe here is instead what PMDD is for me, how it makes me feel and how it affects my life.
What’s PMDD… for me
PMDD is waking up with a terrible migraine which feels like someone was constantly hammering a huge nail into one side of my head for three days and night in a row without any pause. It is feeling my head exploding because my heart is beating so much that can’t bear it.
PMDD is having a dense layer of fog covering my brain. From one day to the next thinking straight becomes impossible; I can’t organise or plan anything at all; I can’t make any decisions… and I am not talking here about life-changing decisions. I am talking about simply daily things like deciding if having chicken or fish for dinner, wearing jeans or leggings, going to the supermarket before or after lunch. I simply can’t face any of them, they cause me anxiety.
PMDD is not remembering things that I (or someone I am speaking to) had said two minutes earlier and get completely lost. It’s the frustration of not being able to carry on a conversation and find a plausible excuse to end it without being rude or not wanting to come across as disinterested. It’s anger for losing one of my best skill (memory) that I have always counted on and find a new way of coping with it.
PMDD is finding myself in a shop into space without actually thinking or looking at anything and not remembering what I was searching for.
MDD is feeling pain in every single tissue and bone in my body. Any movement requires a giant effort and the only thing I would like to do is lie down and rest. Hardly ever compatible with my life as a mother…
PMDD is not looking at my phone for days because any sound or notification causes me anxiety. It is ignoring messages and emails because my brain is unable to put two words together to formulate a meaningful sentence. Then, reply a few days later, explaining that I had a very intense and busy week (which sometimes is true anyway!)
PMDD is being ok one moment and totally furious the moment after for no apparent reason. It’s dealing with this new and unknown part of me which leaves me confused because I’ve always been quiet by nature. It’s being out of control with my anxiety raising up until the edge, feeling hopelessness and alone. Dreadfully alone.
PMDD is experiencing an unexpected lack of interest and energy for the things I normally love: journaling, yoga, blogging, walking, meeting friends, etc. I lose any interest. Completely. Totally. I feel like a fraud, a failure and my brain does nothing but sabotage anything I was working on or building up.
PMDD is feeling so tired and exhausted that I could easily fall asleep wherever I am. It’s feeling my eyes closing down and not being able to keep them open. No way.
PMDD is seeing the world moving: everything and everyone runs and moves. Quickly. And I am still, powerless, confused, slow … extremely slow. Slow in moving, thinking, acting, speaking, laughing and crying. Slow in every single cell of my being.
PMDD is taking time off work because I have reached my limit. Because, on certain days, the fogginess, the tiredness, the migraines, the confusion were so intense and unmanageable that I could barely speak. Forget dealing with calls and emails, attending and leading meetings and contribute by saying anything intelligent.
PMDD is watching my relationships falling apart and not being able to fix them until the crisis has gone because I have no ability to think at all. It’s wanting to divorce every single damn cycle (my cycle is irregular so can’t talk in months) with no rationale behind it. And then the crisis is gone but the damages I have made are NOT, and it will take me a huge effort to repair what has been broken and reconnect with my loved ones.
PMDD is not being able to parent my little girl because I am not in a good condition sometimes. It’s anger and strength together to make up for the time and the opportunities lost. It’s watching her coming to me with my essential oil bottles so ‘Mummy can feel better and the bad migraine will go away‘ and feel my eyes filling up with tears. It’s watching her growing into a beautiful girl and praying every single day, with all my being, that she will never have that.
PMDD is looking at myself in the mirror and recognise my PMDD face (my eyes are different, lifeless) and strongly hate myself. PMDD is believing that I am a failure and not worthy of love.
PMDD is looking up after the storm and watching the ruins. It’s picking up all the pieces and figuring out how to put them back together… AGAIN! Every single damn cycle! It’s restarting the project left halfway three weeks earlier; it’s replying to all the unread messages and emails; it’s writing all the beautiful moments and the things I do every day down in my journal so as to remember them when the negative thoughts will take over; it’s looking at myself in the mirror and repeating that I am strong and worthy of love and I am not a failure at all. It’s kissing my husband and daughter and telling them how much I love them and how grateful I am for our family. It’s writing this blog to tell you that you not alone and to give you hope and motivation when you need it the most.
And you, what’s PMDD for you? Please feel free to leave your comments below or get in touch at fr*******@th**************.com. I’ll be pleased to hear your story.
You explain PMDD for you so well! I needed to read that today. I was diagnosed a couple of years ago but in retrospect have had PMDD since I was about 40. The frustration of being told that what I needed was more rest and less stress and knowing myself that it was something I simply had no control over. I will enjoy reading about your journey.
Thanks for your kind words and for taking the time to leave me your message!
It’s hard to explain what we go through and I totally understand your frustration, it’s something I know well, unfortunately.
I am glad my words made you feel better, that’s why I have decided to share my journey… I hope you will enjoy sharing it with me 🙂