Guest post by Laura Teare-Jones, for PMDD Awareness Month
IAPMD (The International Association for Premenstrual Disorders) describes Premenstrual Dysphoric Disorder (PMDD) as a cyclical, hormone-based mood disorder with symptoms arising during the premenstrual, or luteal, phase of the menstrual cycle and subsiding within a few days of menstruation.
But what does it mean to those affected by it? Well, if we break it down, premenstrual means before the start of a period; dysphoric is quite easily summed up as the opposite of euphoric, and meaning a state of difficulty; and disorder is defined by Google as “a confused or messy state.” So PMDD: before a period, a difficult, confused and messy state!
Let me start by telling you what PMDD isn’t. You’ve probably heard of PMS, or premenstrual syndrome – that time of the month where a woman may feel more emotional than usual, suffer with stomach cramps and maybe feel out of sorts in the run up to her period. Like PMS, PMDD is linked to the menstrual cycle but that’s really where the similarities stop. As valid as it is, PMS is not thought to be debilitating.
I never connected how low I was feeling, or even my physical symptoms, with my menstrual cycle. What I saw it as was phases of depression. But, just as I would start thinking maybe it was time to speak to my doctor, the depression would lift – as would happen with PMDD. Me not knowing about it at the time, I would consider myself ‘cured’ each time this happened. I would put my lifted mood down to the fact I had eaten healthier and been active. Don’t get me wrong, I know there’s a connection between these things, but I realise now how dangerous this line of thinking is.
Here’s why: You feel good, seemingly because you’ve taken care of yourself, and you give yourself a pat on the back. You also give yourself some pressure to maintain this new healthy, happy lifestyle. And when your mood dips (which, PMDD or not, it always will!) the onus is of course on your own actions. ‘Did I not do enough? Is this my fault?’ PMDD can tear down the happiest of people. The fog arrives so quickly that you barely see it coming before it consumes you. Then, when it lifts, you question just how bad it really was. The thing about PMDD is, it perpetuates self-loathing. So if you’re already feeling responsible for your mood, add in that self-loathing and you end up in a really dark place, of shame and embarrassment about being ‘so dramatic and emotional.’
Over the years I have been back and forward to the doctors, and treated for my mood and my migraines, but no connection was ever made – by them or by me – with my menstrual cycle. I was always told to exercise more. On one occasion, when I spoke to them about my concerns about disordered eating, they weighed me and told me that, while I was at the lower end of being a healthy weight, it wasn’t low enough to be problematic. They gave me a list of foods I should eat and sent me on my way. For years, this pattern continued. Sometimes my symptoms would worsen and sometimes they wouldn’t be so bad, and I know now that that would have been because of the various contraceptives I have used over the years.
At the start of 2019, after a particularly bad Christmas, I decided I needed to work out what was causing my ‘dramatic mood swings’, and I started to keep a journal. Honestly, with my self-loathing hat on, I presumed it would be something that I was doing, or even eating, that was causing me to ‘behave so erratically.’
By April time, I had been journaling for a few months and, while I hadn’t felt an improvement in my symptoms, the act of self-care felt like a positive step. One evening I was sat scrolling through Instagram and I saw a friend’s post, which described the symptoms of PMDD. As I read through the list, I had this huge lightbulb moment. All of the symptoms resonated with me and I was met with huge feelings of relief and validation. This was short-lived, of course, as I then responded to this new information by telling myself I was probably just being dramatic again; that I don’t actually have a condition, I’m just spoilt.
However, my journal proved me wrong. I was able to see from the last few months of documenting my mood, that it was 100% in sync with my menstrual cycle. Realising that, actually, I’d probably suffered from PMDD since I hit puberty was life-changing for me.
It didn’t take me long to realise why I’d never heard of PMDD before. It’s a cocktail of mental health stigma and period shame, so it’s definitely not something that is talked about much or even acknowledged. I’d also heard that, because of this, getting a diagnosis could be difficult. A few days later I went to my GP, with my journal in hand, ready to fight my case.
My doctor sat listening to me with a somewhat vacant expression on her face while I explained that I had been tracking my symptoms, had done my research, and was quite certain I had PMDD. I expected her to dismiss me. I had prepared myself for a battle, and I was ready to think about getting second opinions and looking into private healthcare. But her reply was: “I’m not sure, but I think you might be right.” I had recently had blood tests which ruled out other conditions, and I had the evidence there to back me up, but I just couldn’t believe it. It felt like my fight was finally over!
Unfortunately, the fight was far from over. Despite telling my doctor that my husband and I were considering starting a family soon, she prescribed the mini pill, which actually made my symptoms worse. It was disheartening because I’d half expected her to wave a magic wand and cure me, but that’s not been the case. Despite feeling so lucky to have seen her that day, and feeling so grateful for my diagnosis, it’s clear that her knowledge of PMDD is limited.
But, just by her considering my viewpoint and sitting back to listen to me talk, she validated my feelings. Although she might not fully understand my condition, the learning for me is that she will play a part in helping me to manage my symptoms, as will I.
It’s not just down to my doctor to fix me, and equally its not down to me to fix myself either. That means I have to learn not to beat myself up when I don’t have a great day. She’s an important ally for me in my battle against PMDD, but ultimately it’s me who needs to be speaking the loudest about my body.