PMDD and Me by Katie Love

Please be aware that this blog mentions suicide ideation.

I am writing this blog to highlight my Premenstrual Dysphoric Disorder (PMDD) journey – how I discovered it and got help, as it takes up a lot of my life, and it has certainly affected my employment and PhD.

The build-up to a diagnosis

I don’t know when it all started exactly, but I realised it when I was 26, living alone, working full-time in industry. Taking the leap to speak to my boyfriend at the time about how I was feeling is the reason I am writing this from a happy place. What sticks with me the most are the words he said to me: “It’s kinda monthly.

I sat with him on a bench in a town centre, crying for no reason, when he told me this. His words melted away the confusion, angst, self-hatred and doubt I had been feeling for a few days now, and it slowly clicked into place.

Each month when I would get my period, I would exclaim to myself “Oh! That’s why I reacted the way I did – okay” and carry on like nothing happened – until next time.

I feel like my particular experience with PMDD had two different stages: the first being on the contraceptive implant, and the second being hormone free. The former was way worse! It felt like an ever-present darkness within me, only subsiding monthly, but never truly gone, and steadily getting worse each month. It took me until I nearly did something I never thought I would be capable of before I got help.

I was driving on the motorway – fast, in torrential rain, crying my eyes out. I don’t remember why. But I do remember feeling the pull of desire to veer into the metal central reservation, knowing it would probably kill me. I managed to fight it and calm down. I called the doctor the next day. As I knew my moods were monthly and correlated with my cycle, I assumed it was a hormonal imbalance. After negative tests, I still thought hormones were a contributing factor. What makes me even more certain now is the stark change that occurred after I had my implant taken out (which I had to literally beg for).

Within two weeks of being implant free, I was not only happier, I was happy (what even is that?!). Yes, I had good days, bad days, in-between days… but I never felt like I had been truly happy. Whenever I was alone, even on a good day, my thoughts would always descend the dark spiralling steps. While not always at the bottom, I was forever looking down. I remember sitting alone in my flat, and it occurred to me: I felt truly content with life. I had good relationships, a good job, good health, and I felt honestly grateful. It brought tears to my eyes (good ones!).

This blissful unencumbered feeling lasted roughly 6 months. After this time, I started to notice that I was getting worked-up easily again. Small things, building each time. For example, I would get irrationally angry when someone would be in my way, borrow my pen, or grab my attention.

I would have days when I had no energy to leave my bed. I would be crying for hours with no logical, or emotional reason, and no tangible thoughts in my head. This all put a huge strain on my relationship, friendships, and my work. I couldn’t carry on like this. Each month when my mood would crash though the floor, I would promise myself I would ask for help.

I finally got the courage to book another appointment with a doctor – a different one this time!

“My mood deteriorates each month and it’s affecting my work and relationships.

I remember thinking, “Am I too clinical? Will she believe me?

Luckily she did. With a sympathetic look, she explained my options. No judgement. No pity. I was nearly crying.

The relief of not only finally saying it out loud, but the instant understanding and help was amazing. She not only discussed my mental health but researched my symptoms and their cyclical nature.

She rang me the week after with her findings and treatment plan and I found out I have PMDD. Since then I have felt stable month-to-month and have a much better quality of life. I schedule my work around when I know I will feel less productive and motivated. So far so good!

How PMDD has affected my work­

When I was diagnosed with PMDD, I was working in a medical device manufacturer. My workplace was fairly toxic due to a colleague I was house-sharing with. Every day was a struggle, but when my period would come around, I would find that I couldn’t focus and wasn’t paying attention to my work. My mind was racing with negative spiralling thoughts so I would make small mistakes. I would often end up in the toilets crying when it got too much.

I changed jobs not long after, mainly to get out of the toxic environment, but I also wanted a more challenging job role. I was then employed as a research assistant in a large not-for-profit research institute. My PMDD would often get in the way of my work by making me highly sensitive to small setbacks and people’s tone of voice. I tried to set up my work so that for a couple of days a month I would have enough computer-based work to work from home.

I hadn’t told anyone at work about my issues, ringing in ‘sick’, complaining of period cramps or some other physical illness. This prompted questions from my employers as to why I felt the need to work from home so much. I didn’t feel comfortable sharing any of my mental health issues with my colleagues or employers. I didn’t feel like I would have their support or understanding if I had told them why, and I didn’t know any colleagues with any kind of mental health issues. They all seemed to ‘have it together’. Unaware of my problems, my employers warned me that I could face formal action unless I stopped working from home.

While my colleagues were friendly, I never felt part of the team, just their lackey to do all the grunt work, leading me to be quite insular at work. I just kept quiet, keeping to myself and getting my work done. Imposter syndrome also played a large part – I felt I wasn’t qualified for the job and didn’t have enough knowledge or experience, despite completing all my tasks and going above and beyond my role. I was always waiting for the day my boss would tell me that it wasn’t working out any more.

The work culture, and my eagerness to show my worth, led me to be given more and more work and responsibilities, without any recognition or pay rise, which I kept asking for over the years. This led me to feel unappreciated and certainly stressed and overworked. During my attempts to get promoted, I was belittled and unsupported. Soon after, I left to start a PhD, which I was told I needed in order to progress in industry research.

The importance of support

As I started my PhD, I formed a postgraduate student group, as there wasn’t one at the university, and I knew no one in the town. Here I met lots of students and made some close friends, many of whom have experienced mental illness to varying degrees. We all bonded over our apathy and dark humour and I finally felt comfortable sharing what I was going through, along with my diagnosis and medication.

It took a fair few months for me to overcome the stigma I felt regarding taking anti-depressants. Although I don’t believe people should feel any stigma in taking medication, I couldn’t help but feel it about myself. Also, knowing that other students have ‘proper’ depression, I always felt like a fraud, and that I had it easy due to the predictable nature of my condition. I felt like I was ‘one of those people’ who moaned about nothing, when others are going through much worse. Who say ‘I know how you feel’, when you’re almost positive they don’t. This kept me from talking about it until other people’s openness about their mental health made me realise that, “No, I have it bad too, I’m entitled to feel how I feel.”

The culture around mental health feels very different here. While the official support networks provided by the University are lacking (or so I hear), I’ve been lucky as peer support at my institution is high. While it feels good to have a support network, it is also illuminating that so many people in academia suffer poor mental health with limited resources for help.

I also told my supervisor about my PMDD, as I wanted to design a study around myself, as a side-project to my PhD. I was nervous about telling him, and opening up so much. I sat down in his office to talk about my PhD and general progress, then paused. Asking “… how would you feel about an unrelated side project?”, I approached it from a very objective point of view. “I want to study the chemical changes in a disorder called Premenstrual Dysphoric Disorder… It’s a mood-related disorder that’s like PMS but worse… using me as a patient, as I have it.

Phew. Done! It was out there! I had told him! He said he hadn’t heard of PMDD, but the project sounded interesting. We went on to talk about the disorder, in a clinical manner, which I felt helped me open up. I’m also very lucky, and glad, that he isn’t one of those men who is embarrassed or grossed out about women’s health and biology. He spoke about other women’s health research he is interested in, such as the microbiome of babies born vaginally versus by c-section. I feel he spoke about this to show that he isn’t averse to having such conversations, while also supporting my research idea, and being considerate of my mental health. I’m excited and happy he is so supportive.

Since then, the pandemic happened. I was due to finish the second phase of my biggest experiment yet for my PhD, but all that has been put on pause and could affect the results. I’ve had to come to terms with the news, and adapt to working from home, as much as I can. While I am privileged to not have family commitments, have a safe home and steady pay cheque, I am finding it increasingly difficult to concentrate and find the motivation to work. I have been battling with intense feelings of loneliness and a new feeling of continual depression, which I am not used to. I have also been on a journey of self-discovery and growth recently, leading me to seek the advice of a therapist. I always thought I ‘wasn’t bad enough’ to warrant going to therapy, however being part of ‘#Academic Twitter’ has put me in touch with advocates of mental health in academia. Hearing so many varied stories inspired me to dedicate myself to improving my mental health, and that I know I am worthy of help.

Katie Love

Katie is currently a 3rd year PhD student at Aberystwyth University, Wales, UK. Her research is focused on using flow-infusion mass spectrometry to discover biomarkers in respiratory disease, with a focus on pleural effusions. Prior to her PhD, Katie earned her BSc Hons in Genetics and Human Health, going on to gain experience in researching host/pathogen interactions in malaria, along with working in the medical device industry and diagnostics services in autoimmune disorders.

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