The harsh reality of living with Premenstrual Dysphoric Disorder

Phoebe, sitting in her room between work calls, explains through the computer screen how her menstrual cycle has plagued her for over five years.

Phoebe, who is 24 and now lives and works in Manchester, was diagnosed with Premenstrual Dysphoric Disorder (PMDD) over two years ago but has battled with her mental health, in relation to her menstrual cycle, since she was at university.

She is now using her own battles to help others with similar struggles - utilising the time provided by the various coronavirus lockdowns to set up The PMDD Project.

She explained that "when you discuss it (PMDD) with other people who have got it, there’s always a relief."

It is this understanding and sense of community that is reflected in the supportive and encouraging space she has created on Instagram, raising awareness, and providing support for those with the disorder.

In simple terms, PMDD is a very severe form of Premenstrual Syndrome (PMS) with a variety of physical and emotional symptoms. But in the words of Phoebe, it’s "sort of like two personalities."

She recalls how she spent years believing herself to be a drama queen. "We all get periods – well, most people do get periods – so maybe I’m just dramatising it.

"When I’m coming on my period, I can’t really associate myself with that person. It’s like this new person is going to arrive, sort of like an unwelcome visitor, and they’ll act differently to normal Phoebe. They’ll say things they really don’t mean, or they will just feel really depressed. Kind of similar to bipolar I think, but it’s not bipolar because it is influenced by the menstrual cycle."

The list of symptoms for PMDD is extensive and includes - among others - irritability, brain fog, difficulty concentrating, anxiety, depression, and suicidal ideation. There are also more physical symptoms such as fatigue, insomnia, headaches, bloating as well as changes in diet such as binge-eating.

A sufferer can combat a cocktail of any number of these symptoms during their luteal phase, the time between ovulation and menstruation, as is the case for Phoebe.

"I get terrible brain fog, I can’t remember anything or string a sentence together, it’s awful. It affects work massively and my social life because I put everything on hold. I get horrible insomnia, and I’m just exhausted. And bloating as well, I get really bad bloating."

Her most disruptive symptoms are however anxiety and depression, for which Phoebe is now taking medication – beta blockers to combat her anxiety and the antidepressant Fluoxetine.

Prior to her prescriptions, Phoebe describes having thoughts of suicide, month after month, like clockwork. She explains the fact that these thoughts about suicide were "sort of like a split personality because I knew that wasn’t me on a normal day, but I would have these serious thoughts."

The reality of living with PMDD over the past few years has therefore been a lonely and challenging one for Phoebe. "I think I’ve always found PMDD difficult, but it’s sort of heightened since lockdown, and I don’t know why that is. I know that I find socialising more difficult when I’m hormonal, but I think because I’ve been isolated from everyone it’s even more difficult now.

“And I guess I’ve just been trapped with my thoughts and knowing what I’ve got and giving myself time to research it.”

The motivation behind The PMDD project was this research as well as the lack of support Phoebe herself has received in the face of her symptoms, which put her life on hold for two weeks every month.

Like other issues linked to female reproductive health, such as PCOS and Endometriosis, the process of getting diagnosed with PMDD is not easy.

"I’d been to the doctors when I was at university a few times and I explained my situation. I had no idea what PMDD was, but I just explained my symptoms, and they were dismissive.

“It’s not humiliating, but it is sort of like you are putting all your feelings out there, it’s a lot to share with someone and for them to just dismiss it is horrible. So, it was difficult, but then I found out what it was, found out about PMDD and essentially had to go to the doctor and tell them that I’ve got this."

It was then that Phoebe discovered that her doctor was unaware of PMDD, its symptoms and its impact.

She explains how her experience with the GP was therefore disheartening. “It was a lot of me telling him what I need to do. I said I’ve tried this, I’ve tried that, I think the next step is this for me.”

It is for this reason that the work that Phoebe is doing with The PMDD Project is so vital.

Unsurprisingly, PMDD makes navigating life difficult for Phoebe, and the other 5% of menstruators worldwide with the disorder, both on a personal and professional level. Raising awareness is therefore imperative to sufferers getting the correct support.

"Work is my main issue. I’m not where I want to be in my career as I don’t have the confidence because half of the month I can’t articulate, or I can’t perform as well as I could."

In this sense, Phoebe, as a young woman embarking on her career, considers PMDD to have impaired her ability to live life to the fullest. Restricting her confidence in her own capabilities and her ability to make and maintain relationships, both romantic and platonic.

Despite all her struggles, there is one positive to come out of Phoebe’s disorder - The PMDD Project. The project is enabling Phoebe to help other menstruators in similar positions recognise why they are feeling the way they are feeling and get the help they deserve.