Invisible Blood: Pre-menstrual Dysphoric Disorder, the Mirena Coil and Covid-19

Photo by Ian Espinosa on Unsplash

I was standing in the kitchen when a wave of dread washed over me. It was rapid, overwhelming and frightening, soaking my hair and every cell in my body in seconds.

Still from The Shining (1980), dir. Stanley Kubrick.

Writing now, I’m reminded of that bit in The Shining when a torrent of blood bursts through the doors into the hotel corridor. That blood is crimson; mine was black, a colossal clot filling the room. Swept up in rip currents, I felt the floor fall from my feet and I was submerged, simultaneously falling and floating. There was a change in mood; my shoulders rolled forward and my head dropped. “It’s here,” I said to my husband.

I didn’t have to tell him what ‘it’ was; he’s almost as well-acquainted with this uninvited visitor as I am. Pre-menstrual dysphoric disorder (PMDD) involves the brain's abnormal response to hormonal changes. It causes devastating depressive episodes lasting up to two weeks at a time, during which I experience a drastic transformation in my personality, thinking and behaviour. Along with the freefall comes, paradoxically, a feeling of a great weight pushing down on me, which makes me think that the word ‘depressed’ is apt. It’s as if I’m being pressed down into the ground like a corkscrew.

I have been enduring the constant ebb and flow of PMDD breakdowns for most of my life, ever since I started my periods at the age of nine. Tied to my menstrual cycle, until recently these episodes were so regular I could tell the time by them. Gradually worsening over the years, they are occasionally helped along by a trigger: something happens or someone says something, a perceived slight so small that my usual self doesn’t even notice. Or a distant memory jumps into my head, rewinding and replaying, my emotions reacting disproportionately. During these times I’m angry — often for no reason — hypersensitive, petulant and bitter. I’ve been known to shout, scream, run out of the house and disappear for hours, throw things, deliberately break things — including friendships. I’m sad to say that some of the people I’ve rejected, alienated, blanked and blocked were for no reason at all (although to be fair on myself for once, other individuals gave me perfectly good reasons).

It’s partly because of this, long before it became a necessity during the Covid-19 pandemic, that I started to stay away from people — self-isolate — during depressive episodes. Over the years my condition gradually forced me to work from home, which at least helps me manage my time in order to prevent busy periods and depressive episodes colliding. This also means that people don’t have to see me in person, since my attitude to washing and getting dressed is the same as Sylvia Plath’s narrator of The Bell Jar. "It seemed silly to wash one day when I would only have to wash again the next,” says Esther Greenwood. “It made me tired just to think of it. I wanted to do everything for once and for all and be done with it.”

Rather than undergo the daily epic endurance test of making myself presentable, it’s easier to go underground and allow my usually-repressed shadow self to surface. On these dark days I don’t bother doing anything about the way I look; I’ll shuffle around in the same pyjama bottoms or leggings and t-shirt, wear glasses instead of contacts, and let the witches’ bristles on my chin show through. I won’t shower or shave under my arms, or wash my hair. I’ll smell and feel grotty and yet I won’t have the energy or inclination to do anything about it. My husband, God bless him, doesn’t seem to mind my appearance, although I still don’t like anyone to see me like this. The reprieve from the repetitive performativity of femininity is a relief, but I can’t even bear to open the door to the postman.

He’s not run away screaming yet, although if he were to say anything I like to think that I’d tell him I’ve been put under a magic spell — a sexist curse — that turns me into a repulsive gargoyle who has to hide away a few days each month. The fairy tale tropes are there: a drastic transformation, prolonged periods of solitude (thank goodness I enjoy my own company) and epic sleep binges. The trickster that causes all this is depression, an invisible illness that causes me to become invisible too, like in a game of hide-and-seek where I disappear at the wave of a magic wand. I even have a black cat by my side and a handsome prince who says he loves me regardless.

Tarot images from the Rider-Waite-Smith tarot deck. 

But this is no fairy tale. PMDD is not referred to as PMS’ Lethal Evil Stepsister for nothing. My pillow becomes a precipice on the side of a mountain, which looks into a howling abyss. I’ll sit and stare forward blankly for hours, frozen and numbed, unable to move or speak. And no wonder: my brain is short-circuited and all I can do is wait for the blue screen of death to clear. Death comes close and there are times when I don’t care if I die. Saying that is not meant to alarm: the images that flash up in front of me like tarot cards — the Devil (which has to represent PMDD), the Ten of Swords (the sun is rising, far in the distance), The Hermit — remind me of the metaphorical significance of these feelings, the idea of one phase of life ending and another about to begin. Those of us who have PMDD are locked in an accelerated cycle of near-death and regeneration. Only when it decides does the trickster turn me back to my old self and I can go back out into the world. But the change is only temporary and it won’t be long before the trickster is back. “Dying is an art, I do it exceedingly well,” says Sylvia Plath in Lady Lazarus. Cats have nine lives, but they have nothing on me.

Vincenzo: my friend, teacher, healer, carer, wise man. Always by my side.

Despite staring me in the face and obvious to others — “You have a very strong cycle,” a friend once memorably said — until very recently my illness was invisible to me all my life. I always had an excuse for my hypersomnia: sleeping lots was what teenagers and students did (although not as much as I). When I started working, my excessive need for sleep was because of the stress of the job, or that I was lazy, or there was something I wasn’t doing right: I wasn’t managing my time properly, or my emotions. I was too anxious, not resilient enough. Or I wasn’t eating properly, not getting enough magnesium, iron or Vitamin D, or I was ingesting toxins. I sometimes wonder how I managed a career through it all, but a large part was precisely because I didn’t realise I was ill. I just thought I was an unpleasant person and I blamed myself for everything. I was a bad egg, a misanthrope, mean-spirited and miserable by nature, touched by the devil, daemon-ridden, or locked in bad karma.  “I’m telling you I’m trouble; you’ll regret getting involved with me,” I used to say to my husband when I first met him. “No really, I AM horrible.”

My symptoms were compounded by my tendency to pile on myself and slag myself off. Yet for many the flipside to PMDD is an abundance of energy, and there were enough good days in my cycle to fool me into thinking that things were OK. There were — still are — days when I felt unstoppable, yet I didn’t realise these days were unusual either: as far as I was concerned I just had good days and bad days. I knew I couldn’t use my periods as a reason not to show up at work; they’re not an illness, they’re just a part of life, and dwelling on my menstrual cycle seemed self-indulgent and unfeminist. And because I never made the connection between my menstrual cycle and my behaviour (in fact, getting my period is when my PMDD symptoms start to improve) all kinds of chaos resulted. In my late teens and early twenties in particular, I lurched from one personal disaster to another. Depression thrives on lies and deceit and I look back and see how it has lied to me, gaslit me, made a fool of me, given me a distorted view of reality, a distorted view of myself. I have lived lies without knowing it.

The vocabulary of mental illness was never something I identified with, even when I tried. Knowing something was up, in the early 2000s I applied to take part in a medical trial, only to be told that I wasn't depressed enough. Even experts were telling me that depression was what other people had. ‘Bipolar’, too, was a term I’d never heard of until around the same time, and I would never have dreamed of applying it to myself. It was only a couple of years ago, when the symptoms had become so bad, that I began to seek help again. When I was diagnosed with PMDD, a condition that affects approximately 1 in 20 women, it was a huge relief finally to understand what was happening, and to start to understand myself. PMDD is not the same as bipolar disorder because their origins are different, and PMDD cycles much more rapidly. However, the lived experience is similar and medical understanding of bipolar disorder is evolving. It’s possible that I’m on the bipolar spectrum and experience some sort of hypomania (a feature of bipolar II or cyclothymia).

Now that I know, I’m on a quest for a solution — my holy grail, that which will help me feel better. To that end, last December, almost 40 years since I had my first period, I was fitted with a Mirena coil. Not a recommended treatment for PMDD, the Mirena coil is, however, reversible and preferable to me right now than a hyster/ oopherectomy. A form of contraception, the Mirena coil delivers a steady stream of progesterone and suppresses periods (in addition to saving me the money I used to spend on progesterone pills). At 46, after 444 periods amounting to just over 7 years of heavy bleeding (heavy periods are not caused by PMDD), I’ve enjoyed 6 blessed period-free months. And I won’t lie, it has been a relief for my first thought before I do anything not to be about my period: a night out — will I have my period? A holiday — will I have my period? A weekend away, how lovely! But will I have my period? That corkscrew feeling I got in the two-week run-up to my period still comes but now there is no wine in the bottle. The bottle is empty.

At the same time, though, I miss the relief with which my period always came. It was a sign that things were going to get better, a visible marker of positive change. It helped me tell the time. Now, of course, my cycle has been scrambled and while I still get the PMDD symptoms, they are now irregular and unpredictable. I don’t know when to expect them, and cannot plan and prepare like I used to. In addition, having the Mirena coil now feels like a simulation of the climacteric; if I hadn’t started it before, I may as well have done now. “Is this the perimenopause?” is a question I’m asking myself more. I’m at an age at which ‘the change’ may have started, after all. Extreme fatigue, headaches with nausea, irritability, forgetfulness — any of these could be either one or the other and as I get older, the Venn diagram is one large circle. Where does PMDD end and the perimenopause begin? Are they separate, or do they influence each other? If so, to what extent? The truth, the only certainty, is that nobody knows, and no one is ever likely to know. One only knows when one has had the menopause — one’s last period — in retrospect.

And then there’s Covd-19. I spend half my life in lockdown anyway, so the current situation (in which I write this piece) hasn’t made much of a difference to me. PMDD trained me for it, although the anxiety and stress associated with the uncertainty of coronavirus may also have exaggerated my symptoms. My worries — my own health, that of my husband and other loved ones — are also the worries of millions and it’s a toxic combination that has effects on mental as well as physical health.

Since the lockdown the quest that I had started beforehand has accelerated. Having filled my house with plastics, synthetic fibres and toxins, and covered my body with synthetic cosmetics, hair dye and clothing, it’s perhaps no surprise that I’ve been feeling the way I do. The stillness and calm you get from being in a forest: how do I get that at home? And when I do get it, how do I maintain it? Lots of plants, perhaps. And in recent weeks I’ve been sorting through as much junk and clutter in the house as I can. I’ve realised that reducing toxins and deplasticising my life is probably going to be a constant process and in many ways impossible. Toxins are built in to in the fabric of our houses, and our mattresses and upholstery. How I’d love a new sofa, for example, but now I wonder if the toxic fire safety chemicals contained within it are worth the purchase. And I’ve undermined my vegan efforts by bringing out my husband’s old feather quilt, which he bought in Germany years before he met me almost 30 years ago. It’s still in good nick, and I’m glad we kept it.

The most toxic of all toxins are, perhaps, one’s own thoughts. I know I have to be careful with mine and regular meditation does help. Reading Wintering by Katherine May, however, I was struck by the conversation she has with Danish champion ice swimmer Dorte Lyager, who describes how swimming in the sea all year round helps her manage her bipolar disorder. After encountering the work of neuroscientist Edward Bullmore, whose book The Inflamed Mind explores how depression is caused by inflammation in the brain, Lyager says she now treats her brain “like an inflamed joint”, and cold water helps her to calm it. As someone who is drawn more to cooler climates than hot, I can certainly imagine how being plunged into cold water is a way of accessing a crystalline purity of mind where it’s impossible to focus on anything but the present moment. It sounds beautiful and, given that I live by the sea, is something I may have to pursue.

“Depression is withheld knowledge,” said John Layard. It is a favourite expression of mine. “What do I need to know?” I ask myself almost every day. I may never find a solution to my condition (or my melancholia, as I call it when I want to be pretentious); everyone is different; there is no single remedy to suit all and conventional medication isn’t necessarily the answer. For what it’s worth, I’ve created my own intuitive programme of treatment. In addition to the Mirena coil I’m using oestrogen gel and taking 5-HTP. ‘Depressed’ may well also mean to be in need of ‘deep rest’, which I make sure to get plenty of, and when it comes to general health, eating for the gut is must. If you think you may have depression, seek a diagnosis; it may be trying to tell you something that could really help you. In the end, though, it's likely that only time — the menopause itself — will phase my depression out. Only time will be the most effective treatment, the ultimate healer.