PMDD and me

I've been hiding literally and figuratively my whole adult life...

Trigger warning, discussion of mental health and suicidal thoughts

I’ve struggled with mental health issues my entire adult life. Diagnosed with depression at 19 I spent my twenties having good and bad patches. It was only in my mid-thirties that I discovered a condition called PMDD and realised my good and bad patches were actually caused by my cycle and hormones.

I hadn’t been ‘depressed’ in the traditional sense, I’d been having periods of depressed thinking and extreme mood swings that coincided with days 19-29 of my cycle. Yup 10 days of low thoughts, the inability to leave the house and some days not even being able to get out of bed, every month.

No wonder I was misdiagnosed with depression when, I technically am a third of the month.

Here’s a definition from Mind which explains it in a medical sense…

Premenstrual dysphoric disorder (PMDD) is a very severe form of premenstrual syndrome (PMS). It causes a range of emotional and physical symptoms every month during the week or two before your period. It is sometimes referred to as 'severe PMS'.

Many of us may experience symptoms of PMS. But if you have PMDD, these symptoms are much worse and can have a serious impact on your life. Experiencing PMDD can make it difficult to work, socialise and have healthy relationships. In some cases, it can also lead to suicidal thoughts.

The full article can be found here

For me, it’s extreme fatigue, fear of the outside world, and the inability to get dressed/shower/do the everyday things that others find easier. It’s anxiety, doubt and palpitations. It’s rage, the desire to not be alive and the need to escape, sometimes my own skin. It’s bloating, weight gain, and the desire to eat so much I feel sick. It’s avoiding calls, walking the other way when I see people in the street and hiding from my phone. It’s a lot at times.

I’ve tried everything to help relieve, numb and improve the symptoms - more of that in another post. And have found ways to live with it, to prepare for it each month and make adjustments to my schedule so I can take the time out I need. In fact, one of the main reasons I became self-employed was so I could design my own schedule.

As I write this I’m on day 22 of my cycle, a few days into ‘hell week’ as it’s called in the PMDD world and notice that today doesn’t feel as bad as previous months.

There are a number of reasons for this. External factors like I’m in the midst of planning a best friend’s hen do, so there’s no time to think about myself, I have to power through, I will probably need to sleep a lot on Monday to pay it back, but that’s ok, I’ve made the time in my schedule to do so.

As I’ve been on the run-up to the hen I’ve been super conscious to look after myself better and all of these things have helped. A positive state of mind is helpful, but it would be toxic to suggest that it’s the cure.

I’ve read the research and am up on how various lifestyle factors help with all kinds of health, especially mental health and it seems easy, right? Except when my hormones kick in around day 19 I can’t do anything positive for myself, I in fact go out of my way to sabotage myself instead!

I stay up late, I drink too much, I avoid exercise, and I become a completely different version of myself. I’m still there inside, but my hormones turn the dial down by half.

I’m lucky to have found a way to live with this condition, to run a successful business and keep going. It’s taken 8 years to find ways to do this and a lot of research, reading and cruising forums, but it is possible to have good months. Not to make light of the condition, I do still have dreadful days but I can find a path through 95% of the time.

So why do I share this? In part to raise awareness, more people suffer from this chronic illness than we know. There is now information out there, but when I first realised I had PMDD there was little to be found and getting diagnosed was difficult. It’s still not easy but small steps make all the difference.

Also, in part to be honest about it. As when it's out there it can’t go back in the box!

It wasn’t easy to share, I grew up in Yorkshire, where you have grit and never complain, so I learnt to hide my feelings pretty well. Meaning I’ve never really talked about it off or online, even though I’ve wanted to, I was concerned people would worry or feel sorry for me. But it felt time to share, in the hope of spreading awareness.

I’d love to hear from you in the comments, is there parts of you that you don’t share on or offline? Do you live with a chronic illness?