A personal history of pre-menstrual dysphoric disorder
If the weather was bad at weekends I might make a camp in the downstairs loo and spend hours in there nesting and talking to imaginary friends. It kept me entertained for days on end. In my land of Dickensian make believe, I was always the strong big sister who was tasked with saving many vulnerable younger siblings from starvation or disaster.
I loved make believe land because I could take it with me anywhere and consequently was never bored or lonely. All I needed was a quiet corner (preferably with a dressing up box, lots of blankets or towels and a few dollies) and I was never far away from little girl heaven.
I don’t remember exactly when I stopped playing make believe. But I do remember waking up one day and thinking with a pang of sadness “I haven’t been there lately”. I remember trying to transport myself into my other world but just not being able. It was as though a door had softly and surreptitiously shut in my imagination. Somewhere the secret channel I’d always passed through into that special world had become so much weaker. I could see it theoretically in my minds’ eye but like a fuzzy analogue radio station, the wavelength seemed ever harder to tune into until one day I was so far away it just faded altogether. I had crossed over into teenager-hood. I was no longer a little girl. I was, all of a sudden, a very self conscious little lady.
Shortly after this loss of childhood, I had my first period. Though not before there were a few awkward months when I’d known it would come but it hadn’t yet. The waiting was uncomfortable. My great friend Rachel had hers first. I’d been so keen not to be the ‘left-behind-one’ that I fibbed and said my period had already arrived too. Not long after, Rachel’s mother conferred with mine and the awful truth came out. I had to own up to the double shame known only to those pre-pubescent teenage girls who a) haven’t got their periods yet and b) lie about it and then get found out.
Little did I know in those innocent months (when I thought of not much other than Donnie Walberg from New Kids On The Block and wanting to dress like Kylie) what havoc the longed-for period would wreak on my life. Indeed I had no idea I was in for decades of long, tumultuous journeying that would only end along with my fertility. I had no idea at that point that along with my period would come a bucket load of excruciatingly horrible hormones which would not work well in my body and that with them they would bring a viscerally nasty eating disorder. Little did I know that within a short time I would become one of the founding members of the eponymous Prozac Nation generation; it being around about age fourteen that I had the first, of now countless prescriptions, for antidepressants.
Despite being practically dyscalculic (and thus rubbish at numbers), in any subject that required application of the written word I showed great promise and I thrived (almost) at my beloved girls’ school. I was accompanied by a fabulous group of characterful girlfriends, many of whom I’m still knitted to today. Together we learned to love learning and laughing.
But this laughter and love of life and learning was marred and scarred (and my academic-self greatly stunted) by monthly bouts of deep depression. Every few weeks I would transcend from wise, confident, leading lady into the shadowlands of self doubt, panic attacks and morbid sadness. Little did I know then it was because negative reactions to hormones triggered by my Pre-menstrual Dysphoric Disorder were consuming my mind and body. I was literally losing control of my mind as my body reacted severely and adversely to being infiltrated by surges of oestrogen and dips in progesterone. Meaning my otherwise positive personality would be episodically obliterated and subsumed by self-doubt and despair. In a matter of hours the visceral pain of being human would simply overwhelm me and I would turn from a sensible, happy go-lucky girl into an ineffectual imitation of myself.
In retrospect I understand why I became bulimic. It was a coping mechanism. But in unconsciously trying to cope with so many foreign feelings that I didn’t understand, I developed an addiction and illness that would come to dominate and practically destroy my life for over a decade. I am now sure I was bulimic because food was the only ‘drug’ easily available. As a young teenager who had never been exposed to drugs and whose parents rarely drank, it was the only thing within arms’ reach that could be used as self-medication. Food became my drug of choice and I became addicted to using it to numb the cyclical, suddenly unbearable pain of being me with PMDD.
From the age of 13 onwards and as my teenage years progressed the monthly madness of PMDD combined with an extremely unsettled, disturbed and challenging home life (because my parents fought so much and were so miserable) made life often feel unbearable. I wrote a lot in my diary which I now see was a great release but from time to time things were just too much and I often found I didn’t want to live. I fluctuated between starving myself and extreme weight loss and losing control to weight gain. After a while I settled into a decade long, daily, self-harm routine which involved bingeing and vomiting at least six or so times a day. I never kept a meal down. It was as though I was psychologically allergic to eating and felt I didn’t deserve to keep food in my body. Alongside this compulsive relationship with food was the odd, pathetic cry for help in the form of an unsuccessful overdose.
When I reached the age of 18 I discovered alcohol in a big way. It proved to be a release even greater than writing or overeating. But it brought with it unprecedented emotional dangers in the form of inappropriate men and endless rabbit warrens of depression and self loathing. It was only at the age of 24 when I finally decided enough was enough, that I couldn’t live with the rollercoaster of emotional and physical monthly upheaval any more. I either had to end my life or find another, different way to live.
To my endless gratitude and joy, despite having absolutely no sensible guidance or support from my parents or (well-meaning but ill-equipped) traditional NHS doctors (other than endless prescriptions for anti-depressants which never worked because they weren’t the correct treatment for the problem and most of the time I was inadvertently vomiting them up anyway!) I found my way into Twelve Step recovery. Slowly and surely over the course of my twenties as I embraced sobriety and recovery and got help from some brilliant female mentors, I was able to step back far enough from the active addictions to understand the danger my hormonal cycle routinely put me in and see it for the underlying cause that it is.
I am 42 now and have a little girl who is six (and two older boys) of my own. My great worry is that my own little girl will inherit this miserable, life afflicting condition and, as I did, fall victim to her hormones wrecking her young years and stymying her academic potential. I sincerely hope she doesn’t but (just in case) I will do everything in my power to try and make her menstruating life easier than mine. My hope is that by writing about my own experiences with PMDD and campaigning to shine a light on this condition, I will help to ease her potential path and the life paths of others who, like me, have to learn to live with PMDD. It angers me that women like me are so often mistakenly labelled as bi-polar, depressive or borderline and thus pigeon-holed incorrectly and treated inappropriately. I strongly believe there needs to be way more investment in research, better availability of correct information on the subject and tireless encouragement of the NHS to ensure GPs are properly educated on the issue and able to recommend age appropriate treatments. I am so shocked at the lack of detailed awareness of PMDD and other endocrine disorders amongst doctors in the NHS despite PMDD alone affecting up to 10% of menstruating women. (Unconscious bias in action perhaps?) I live in hope that researchers will alight upon a successful treatment that is safe for menstruating girls and women alike (ie. that doesn’t involve early, chemical or surgical menopause).
Me, now? I still suffer hugely in the week before my period arrives. When I turned 40 I felt my hormonal reactions shift up a gear and the PMDD intensify in new ways. I find I turn from being a consistently strong, empowered, confident leader and CEO of my thriving digital agency into a jittery, self-doubting person whose body is prone to hot flushes and episodic acne. Also my heart beats very fast and chronic pains flare up. I am fatigued and I sometimes find it physically difficult to move so I just have to stay in bed or take to the sofa. My body becomes riddled with pain and my conscience is deeply affected by external occurrences. It’s as though I am suddenly walking through the world with no skin on. Every feeling is intense. Social injustices fuel a burning rage. Human carelessness makes me despair.
The hormonal shift hits me like a tsunami every time. It lasts a few desperate days until it vanishes as quickly as it came.
The difference now though is that at this stage of life, compared with my teenage years and my twenties I am far better informed. I can go some way to prepare for the monthly onslaught. I can also expertly mask my inner turmoil and hide it from others when necessary and appropriate. Now I am abreast of my condition, understand it to some extent and have embraced it as part of my make up, I can stop feeling like a bewildered ‘deer in the headlights’ every time it rears its ugly head. I can recognise it for what it is; an endocrine disorder or hormone-related disorder but not (and I stress NOT) a mental illness. It is true that people with PMDD will often experience (as well as physical symptoms) a range of different mental health symptoms — such as depression and suicidal ideation, but this is not because they have a mental illness, it is because they have a hormone disorder. In my opinion there is a big difference.
To deal with it now, I am always looking for new solutions. I seek out appropriate support from groups like www.iapmd.org and give support to others in equal measure. I carefully organise myself so that important work meetings do not coincide with my difficult monthly time. I consciously and regularly exercise. I eat very carefully, avoiding sugar. And I never drink alcohol.
Notes: PMDD affects an estimated 2–10% of women 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 oestrogen and progesterone. It is a suspected genetic disorder with symptoms often worsening over time and around reproductive events including menarche, ovulation, pregnancy, birth, miscarriage, and menopause. Those with PMDD are at increased risk of suicidal behaviour and subsequent death by suicide. Some struggle to maintain relationships. Many, but not all, women with PMDD have a history of sexual trauma or depression.
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