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My journey with premenstrual dysphoric disorder

Sachini Imbuldeniya struggled for years with debilitating symptoms around her period. One day, she discovered they had a name...

Illustration by Justyna Green

When asked to write a personal story about taboo subjects in the South Asian community, so many different examples came to mind. From having to teach numerous 30-something year old peers how (and more interestingly where) to put a tampon in, to strange religious traditions that meant I couldn’t enter the kitchen of my teenage best friends house if I was on my period - and if I did by accident her mum would spend the rest of the day chanting prayers and waving sticks to cleanse away the evil spirits I’d supposedly left behind.

But the story I decided to focus on is even more personal, and one that I’d never discussed publicly up until a few weeks ago But I decided that it was time to shine a light on how the lack of ‘life education’ in South Asian communities has negatively impacted the last 38 years of mine.

From a young age I’ve suffered from what I thought was an unexplainable depression. From cutting myself as a child to ongoing suicidal thoughts and attempts to end my life that left me hospitalised and quite frankly lucky to be alive today.

I grew up in quite a traditional Sri Lankan, Buddhist family where 'mental health' amongst many other things were deemed as subjects never to be acknowledged or spoken about. My dad passed away when I was 10 and my mum instantly stepped into the role of being a strict disciplinarian. She projected this incredible, unwavering strength, and rarely showed emotion.

Sharing my depression felt like a sign of weakness and I didn’t want to let her down or bring ‘shame to the family’ – a phrase I heard constantly growing up.

So instead I bottled everything up, became extremely guarded and learnt pretty quickly how to ‘act’ like everything was fine externally whilst crumbling internally. Over the years I lost valuable relationships due to my condition and the lack of understanding I had over it. I was a closed book to even my closest of friends and basic tasks like getting out of bed and getting dressed were a constant challenge.

Photo by Bella Okuya

What I didn’t know then was that I have Premenstrual Dysphoric Disorder otherwise known as PMDD. It’s basically a severe form of PMS - and that in itself probably doesn’t sound like a serious thing - but after living with it for most of my life, believe me when I say it is.

Having researched it, the best description I could find was a quote from another sufferer on the website which said:

"Once a month – I decided to press my own 'self-destruct' button and literally let my life (my normally very happy and satisfying life...) implode around me. Then when the dark thoughts lifted and completely cleared, I spent the next two weeks trying to pick up the pieces."

And this has been happening on repeat since the day I got my first period. I never even considered the two things were linked, but that’s because both mental health and periods are ‘taboo’ subjects often greeted by a wall of silence amongst South Asian communities.

The symptoms I experience are wide-ranging: from extreme mood swings to feelings of anxiety, feeling worthless, having difficulty concentrating, feeling overwhelmed, forgetfulness, a lack of energy, being on edge, headaches, sleep problems, weight gain, fear of rejection, severe depression and this crushing desire to take my own life.

These last for two weeks EVERY month and it’s exhausting to know that once it finally passes you have to brace yourself for it to happen all over again in a couple of weeks' time.

It’s an incredibly disabling condition that prevents you from doing the simplest of tasks, destroys relationships and stops you from being able to live a ‘normal’ life. To be honest, I’m surprised I’ve made it this far.
Photo by Kofi Paintsil

PMDD has been classed as a disability under the Equality Act 2010 and affects 1 in 20 women. My diagnosis was confirmed by a private gynaecologist 2 years ago – but only after I'd wasted countless years with NHS psychiatrists and psychotherapists.

Discovering my illness had a name and knowing that there were others going through the same thing, felt like a huge weight had been lifted from my shoulders. All these years I thought I was alone and that I was broken without reason but knowing it was something I had no actual control over gave me a weird sense of relief that it wasn’t my fault.

Unfortunately there is no real cure apart from a surgically induced menopause (hysterectomy with ovary removal), but for now I’m trialling more anti-depressants in the hope that I won’t have to go under the knife.

My mum is an incredible woman and I'm proud of the way she raised three children on her own in a completely new country. What she did for us took incredible strength. But what I think the next generation of South Asian parents need is a different kind of strength.

They need to break down this wall of silence and be as open and honest with their children as they can be.

Let's remove the cultural stigmas around sex, periods, puberty and mental health and ensure that they feel fully supported and equipped to deal with anything that comes their way.

For PMDD sufferers like me, it could mean the difference between life and death.

A note from the writer Sachini Imbuldeniya...

The reason I wrote the article in the first place was because a friend of mine, Imali Hettiarachchi, just launched a platform called 'Rule Your Body' and it's mission is to create a much-needed safe space for black and minority ethnic women to talk openly about women's health.

I'm so thankful that she asked me to share my story because, prior to that I hadn't even told my family or closest friends. But after understanding the importance of the request, I knew it was time to speak up, and it now feels like a HUGE weight has been lifted after so many years of silence.


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