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.