It's PMD Awareness Month but I'm Tired!

Premenstrual Disorder Awareness month aims to highlight the impact of Premenstrual Dysphoric Disorder (PMDD) and Premenstrual Exacerbation of existing disorders (PME) but awareness fatigue is a thing!

Here's the thing, PMDD, or Premenstrual Dysphoric Disorder, as you know it–often coined PMS on steroids–is not new to me. I have lived with this disorder for more than two and a half decades. I have been diagnosed with PMDD for more than one of those decades, and it's hard not to be a little bitter that it's only now that we're realising and finally talking about it in mainstream society.

I remember the first time I went to the doctor's and said my extreme mood swings, suicidal thoughts and generally trying to blow up my life every fortnight was aligning with my menstrual cycle, I thought I had a hormone imbalance. The doctor–a woman–told me: everyone gets moody around their periods, there's nothing to be done.

Ordinarily I'm a huge supporter of awareness campaigns and have, for the last several years been part of pioneering PMD Awareness Month alongside IAPMD - The International Association for Premenstrual Disorders. Despite my mention of personally feeling flat and a little bitter that the illness which has dominated my life for so many years has finally been given a platform, I am of course also thrilled this is the case!

Contradictory? A little. Let me explain: We each have a personal relationship with our health, just as two people who have cancer will not have the same symptoms, severity, impact, or overall experience of the illness, neither will two people suffering from PMDD.

PMD Awareness month (stands for Premenstrual Disorder awareness month) provides valuable information and shared resources for those who may be experiencing symptoms of a premenstrual disorder. This includes Premenstrual Dysphoric Disorder (PMDD) and Premenstrual Exacerbation (PME). PME pertains to premenstrually exacerbated symptoms of an underlying disorder, commonly seen in those who are neurodivergent and those who have existing mental illness.

Along with resources and information, awareness months such as this one often also involves the sharing of real, and extremely personal, stories. —This latest bout of awareness fatigue is part of my story.

I'm almost three years into a medically induced menopause to treat PMDD. The menopause itself has impacted my life in so many ways, some positive, though overall it has mostly felt like putting a band-aid on a problem nobody knows how to fix.

“As a person nearing the end of the medical treatment pathway for PMDD, I've felt alone.”

When I first started seeing influencers and celebrities share their stories of PMDD, I was grateful and hopeful that the way in which we view and treat women's health on a societal level, would change.

However, I've been on the front line, as both a campaigner and a journalist. I've reached out to these people and the news outlets sharing their stories, many who refused to speak to me, some even to acknowledge me at all. And yet I've listened to the stories about how we must support each other, how more women need to stand up and share, yet when we try, unless we already have an established platform or ‘fanbase’ we often remain unseen. I've seen stories of hope and heard the triumphs in those whom have experienced great relief from first line treatments, yet as a person nearing the end of the medical treatment pathway for PMDD, I've felt alone.

What I'm trying to say, I think, is that just because you share a diagnosis, doesn't mean you'll share a treatment plan, or even be in agreement about what treatment looks like. I've read of women swearing themselves off having kids because they don't want to pass on PMDD, yet I'm a mum who had PMDD long before I had children.

I've been part of online groups where people apply their own honorary doctorates and give medical advice that is personal only to them with the potential to be harmful to other PMDD sufferers. I've watched people claim to have cured their own PMDD despite having tried and failed so many times myself. I've lived through all of it.

I don't dispute that with knowledge comes power and solidarity, I stand by that, but we also have to accept that not everything we see and read is factual or helpful.

PMDD is a complex disorder that fluctuates. In the follicular phase I might feel deep admiration and gratitude to be united with so many women experiencing the same symptoms I do. I might feel aligned with those women who take sledgehammers to their own lives, and in those moments, I'm thankful, and empowered to know I am not alone. To know that this illness is not my fault.

Then, during the luteal phase I might vehemently dislike hearing the tales of others. The stories of solutions that I've already tried and found little to no relief from. The lesser extent of someone else's symptoms might make mine feel even more troublesome, or the opposite being, other people's symptoms make me fearful because I know how bad this illness can get, how long it can last, and how even after ‘life changing surgery’ life can remain a precarious balancing act of walking a hormonal tightrope.

I'm aware that this isn't what I'm supposed to say. And believe me I do have empathy for every sufferer, but I'm human too and I have human responses. I would never comment on someone's social media or point out flaws in their logic because I don't believe in shaming people's beliefs, even when I might think something is wrong, I accept that we are not all the same. Nonetheless, sometimes it's hard to find empathy when your own life feels melancholy and perpetually doomed.

This is why I've decided to take a step back from PMD Awareness month content this year. The irony of announcing such retraction in a Substack post is not lost on me, but I must be clear, it's not because I don't care, on the contrary in fact. It's because I care so much. I feel too overwhelmed by the stream of awareness posts sharing insights into a disorder that I know inside out. It feels personal, even when it's about so much more than just me.

Awareness fatigue is real. And while I deeply appreciate the need for this drive to raise the profile of Premenstrual Disorders, I also feel triggered by some of what I read. Annoyed when I see something that isn't factually correct, alongside offers of unrealistic hope. I feel anger when I come across companies that market and sell ‘solutions’ for an illness that has no cure. And I feel let down when I hear yet another person has been dismissed by their doctor, gotten themselves into debt to seek specialist care and are still having to sacrifice huge parts of themselves in order to simply survive.

This isn't a woe is me post. This isn't a ‘my PMDD is worse than yours’ post, and I sincerely hope you haven't read it as either.

Instead, I hope that if you have PMDD and your drive for activism also waxes and wanes with your cycle, that you read this and know it's okay.

It's okay to be upset, angry, despondent, and fed up. It's just as okay to be hyped up and driven to make noise and spark change. However you feel this year, during this month, is okay.

Sharing our stories is a powerful way to help people understand our experiences as women with PMDD or PME, but it is not an obligation. You don't owe anybody your truth and you don't have to force yourself into fighting for visibility. Especially if you are already fighting to survive. Do what feels right for you, and be okay with the fact what feels right, right now, might feel different in a week.