The "Half Life" of PMDD

For most of my adult life, I’ve lived half in survival, half in repair. I have Premenstrual Dysphoric Disorder (PMDD), catamenial epilepsy, and have experienced chemical menopause and surgical menopause after an oophorectomy aged 36, culminating in Complex Post-Traumatic Stress Disorder from spending almost three decades in a permanent state of fight, flight or fawn.

PMDD is not "just bad PMS." It is a debilitating condition that hijacks your body and mind every month in the days leading up to your period. You lose yourself constantly, cyclically and predictably. Physically arduous and emotionally draining, it feels like you're becoming someone else against your will.

I spent much of my time battling against my own brain and body, with the rest of my time spent cleaning up the aftermath, apologising for words I didn’t remember saying and trying to rebuild relationships I’d destroyed in a fog I couldn’t see through when I was in it. My body and mind never fully belonged to me.

 

The older I got, the more important relationships became, which made the fallout harder to recover from. I started keeping my distance from everyone and I surrounded myself with people I could afford to lose. The cycle of damage and repair, damage and repair... eventually, it wears you down, and worse, you wear down the people around you. Saying "I can't help it" is a hard sell when there's no visible proof. The shifts in my mood came quickly, and without warning. I didn't just get sad - I was devastated. I didn't just get angry - I was furious. I didn't just love - I was intoxicated. 

 

I lost entire days and I didn't recognise the faces of people who were once important to me. I would lose sentences halfway through. I couldn't remember important conversations, only the consequences. The world didn’t look blurry as such - it just looked wrong. Everything I thought, saw and said all slurred together.

 

We sleep to heal - for physical and mental restoration - but for me, sleep wasn't a time to recover. Every dream was a graphic, often violent nightmare. They were so realistic that, even now, although I can vividly remember people and places, I'm not completely sure they exist. 

 

You’d think knowing when it’s coming would help. It doesn’t. I was constantly on the clock trying to put in the legwork to earn enough grace to see me through the bad weeks. You know exactly when it's going to happen again, and there's nothing you can do to stop it. Just as you start to feel okay, it starts all over again. The immense sense of relief when it eventually breaks and you start to recognise yourself again, is very quickly replaced by the intense nervous energy that fuels your reparation mission. 

 

I had a limited number of SSRIs to try as so many reduce the efficacy of epilepsy medication. The ones I tried made me feel significantly worse. Every medical professional I begged for help put me on and off various contraceptives which changed me in different ways. I tried every diet, every exercise routine, holistic alternatives and natural supplements. Nothing worked. 

 

It's fashionable now to say "it's good to talk", and "it's OK to not be OK". In my experience, sharing your condition with the wrong people gives them cause to write you off, to dismiss you, to tell you how you feel and what you need, because you can't possibly make decisions about your life in the state you're in. It lets them excuse the worst of their behaviour because their mistreatment of you is your fault. And most of the time you agree that you probably did deserve it.

 

PMDD doesn't create feelings; it lowers the barrier that lets them through unprocessed and unregulated. I lived all my emotions out loud, and with my inability to express myself eloquently, came a complete invalidation of anything I had to say.

 

I knew I shouldn't have children, which is not the same as not wanting them. I could picture very clearly my tiny five year old heading off to school, terrified by the thought of what mood Mum would be in when they got home, and that wasn't damage I was willing to inflict. 

 

I was told that women under the age of 35 are unlikely to be given surgery, because if they don't have children, and think they don't want children, they're probably wrong and they will inevitably change their mind. The whole purpose of a woman is to have children, after all...

 

The time between being referred for and receiving surgery is, thankfully, quite blurry to me now. I was receiving GnRH injections, the effects of which were catastrophic, and the damage to my mind, body and relationships will never be undone. I am glad I had the surgery, and it has brought me a lot of relief, but it is not a cure by any means. The road to get there was traumatic in its own way and I have new challenges to navigate now. 

 

I drive myself mad thinking about how different life could have been if I didn't have this condition; if the sliding doors moments had happened just one week later - the breakups I didn't really want, the parties I didn't attend or the friends I cancelled plans on one too many times. I think about all the travelling I haven't done, all the people I haven't met and all the risks I haven't taken.

 

Everyone tells me there's still time, but time is not the issue. I have performed my learned personality for so long, I don't know how to stop. I laugh at things I don't find funny. I do hobbies I don't enjoy. I don't know who I like or what I like or why I like it. I have a lot to unlearn before I can start again. I'm quiet and shy, observant and thoughtful. I like being still. I like the peacefulness of being alone. I like to go unnoticed by anyone I don't choose to be noticed by. I only hope to be content. I prefer the ordinary moments to the ones people tell their grandchildren about. I don't think there's a person in the world who would describe me like that. 

 

I hope Hollow will create some good out of it all. Hollow is for the people irrationally crying because they have no mayonnaise for their tuna and the people who can never be too far away from home in case they panic and shut down. It's for anyone who always cancels the plans they want to keep, who isolate themselves because it doesn't feel fair to ask people to stick around.

 

Someone else out there needs to know they’re not crazy. Someone else is dragging themselves through this, thinking no one else has ever felt this way. This is something you endure, not something you are.