“It’s called Premenstrual Dysphoric Disorder” – these were the words, heavy with the pregnant pause of uncertainty that will mark my day of diagnosis. Sitting in my car, outside of my GP surgery, I tentatively tapped the phrase into Google and hit search. In less than a second, I was faced with a catalogue of symptoms, medical articles and a digital maze enticing me into over half a million possible avenues, thick with the brambles of fake news, snake oil and unfathomable statistics.
I knew my brain was different to other women, and the overbearing feeling of failure was infiltrating every part of my life. Now, finally, I had a name to put to it, a label I could explore. Little did I know of the journey that lay ahead of me, and the challenges that I would face along the way.
In my naivety, I thought that this would be it – now I had been diagnosed, everything would be fine – I could take the medication and my symptoms would disappear. But PMDD is not like a toothache – you can’t simply fill the cavity and be done with it. My journey towards recovery has taken six years, and although I am now in the best mental health of my life, it is a state of mind that I work hard at every single day.
I could sit here and tell you about the endless days and nights of uncontrollable symptoms, and about how the bitter, stale taste of treatment resistant PMDD hangs in your mouth, but that’s not what this blog is about. Today I tell you about how I stopped fighting against PMDD, and accepted it as a part of what made me the woman I am today.
A year ago, I stood on a stage in front of hundreds of people, in front of whole lifetimes of PMDD, spanning across generations, over oceans, and time zones. The crazy idea I had whilst sitting on a bus one day, was now staring at me with hushed anticipation as the first PMDD & Me Conference began. My Sarah gave me the thumbs up, the cameras lit up, and my microphone went live.
This was it, the day that my journey had been leading to. It wasn’t fate, it was a choice. A choice I had made to empower myself, and in doing so, others in becoming their own reproductive health advocates. The atmosphere that day will stay with me forever. I was so proud of what we had achieved. PMDD had tried to kill me, but I used that strength to survive and to do what I do best.
That night as I lay in bed, unable to sleep, still buzzing from this unforgettable day, it struck me – if Sarah and I could do this, from our sofa with just 8 months of planning, imagine what we could achieve in a year, two years, five, ten! I knew that this couldn’t be it, we couldn’t stop here.
Poet and feminist Adrienne Rich once said “The moment of change is the only poem”. My moment of change was when I stopped fighting against my diagnosis, and stopped listening to the poison parrot on my shoulder telling my that it was a failing, a character flaw I should be ashamed of.
As soon as I stopped fighting my PMDD, it lost its power over me. I ultimately chose to have a total hysterectomy, a deeply personal choice that I had to come to by myself, and for myself. It is by no means the solution for everyone affected by this debilitating and cruel disorder, and I would never presume otherwise. Nor is it a quick fix.
The journey to recovery doesn’t end as you walk through the hospital doors for this radical, last resort therapy. It is in fact a crossroads, and you have chosen your next turn. The process of healing goes beyond the physical, and very little has been written about the long-term impact of PMDD on your mental health post-surgery.
I found solace in the unbreakable and unconditional love of Sarah, and I never take this for granted. What we have built and created through PMDD & Me CIC is beautiful and precious. Even now, when we face financial uncertainty in these unprecedented times, we will pick ourselves up and start again.
Because this is what PMDD taught us; it will pass, the sun will rise again, and the fog will disperse. Our plans for our 2020 conference may be fading into memory, but the drive to enact change and make a different is not. We may not be able to bring you the same experience as last year, but that doesn’t mean we have forgotten our responsibility.
In creating PMDD & Me as a Community Interest Company, we took a pledge to honour the needs of those which we serve through sustainable and socially responsible initiatives. We seek to educate, empower and enrich your understanding of your own reproductive health, so that you can find your inner strength and your moment of change.