PMDD has stolen my life
Essay raising awareness about my little-understood endocrine disorder
(Note: PMDD is not PMS. Premenstrual Syndrome (PMS) is a few days of physical discomfort and moodiness before one’s period. PMDD is a disruptive, debilitating disability caused by the body having an adverse reaction to its own hormones, and causes severe paranoia, anxiety, and suicidal ideation. Anytime I use the term “PMS” in this essay I am using quotations around it, to demonstrate what I, and others, thought I was suffering with before I realized I had an actual endocrine disorder.)
I’m writing this because every month I have to tiptoe around explaining to someone that I’m sick with this shit that’s humiliating to explain, that I’m unable to attend this function or do that thing because I’m “under the weather”. When I say “under the weather” this is what I mean.
I’m also trying to raise awareness because not even medical professionals know or care about this illness.
First, I’ll describe how it started. Despite my terrifying home life with two emotionally unstable people who shouldn’t have had children (hi family members who are watching my socials), I was a happy — albeit peculiar and off-putting — child with an active imagination. But as soon as I hit puberty, something changed. I instantly became insanely depressed and sometimes catatonic around my friends. They began distancing themselves from me - I don’t blame them, I was a huge bummer - and I became a loner and a recluse. In high school I began having regular suicidal ideations and journaling about how much I loathed myself and all the ways I wanted to harm myself.
Not yet understanding my plight, as soon as I moved out on my own at 18 I started self-medicating with anything I could get my hands on. I tried everything offered to me. I enjoyed causing myself harm with a secondary benefit of forgetting my troubles and feeling AWESOME for once. [I had written some examples here but redacted because it’s too dark]
Only when I was midway through my 20s did I start tracking my menstrual cycle and realizing that the week before my period was when I always became frantically suicidal like clockwork, and also when I became blackout drunk the most frequently. (See “Angloid” for graphic demonstrations of all of the above.)
Working in hospitality all through my 20s and early 30s, in attempts to confide in my female coworkers about my insane “PMS,” I noticed they would respond by giving me odd looks and comment on how affected I seemed to be by my cycle. I began to realize that I was the only woman constantly complaining about my period and that people were noticing.
Until I was 33, I was still…somewhat functional during my “PMS” week. I still showed up to work 30-40 hours a week at whatever restaurant I was employed, but I would end up breaking a lot of glassware and making a noticeable amount of mistakes with orders. I can remember a handful of times that I was pulled aside by managers about my performance, and through tears of humiliation, having to explain to my male managers that it was because of my hormones.
Countless times during my “PMS” there were customer complaints about my “attitude,” but little did they know I was clocking in and doing my job to the best of my ability while actively fantasizing about suicide and self harm, and periodically hiding in the bathroom to cry. My unwavering work ethic was my saving grace and I never wanted to let my coworkers down, especially at my last job before COVID, when they were so understanding and reasonably accommodating of my condition (after getting to know me for a year or two).
Midway through my 20s, I did also begin to notice that my artistic abilities suffered considerably in the 7 days before my period. When I was working in restaurants, though, I could take a month or two off from creativity without worry. Now I’m a full time artist so that presents a new challenge, but I’ll address that in a bit.
Throughout all of this, I was frequently seeking medical treatment. The immediate “solution” that every doctor throws at someone with PMDD is birth control and SSRIs. I tried progesterone-dominant birth control: it took my one week of PMDD and stretched it into an entire month of being unable to get out of bed with urgent suicidal ideation, where I was actually researching and assembling plans to end my life. After I stopped taking birth control my cycle went back to normal: one week of PMDD dysfunction per month.
From this experience I learned that my PMDD is caused by my body’s adverse reaction to progesterone (which is released shortly after ovulation, to prepare the body to menstruate). I am angry that after countless visits to medical professionals, I am the one who had to reverse-engineer my own illness and pinpoint what’s going on with my own body.
Another “solution” offered by medical professional is SSRI treatment. Over the years I’ve tried Lexapro, Prozac, Wellbutrin and Celexa. In taking each of these, a fraction of my suicidiality is shaved away. At first it’s a relief … and then you build a tolerance and it starts creeping back in.
But even so, with an SSRI, I am still so physically unwell that I can barely function. An SSRI is NOT a solution to PMDD. At best, it is a bandage on top of a rancid, festering wound whose source is deep inside the body, untreated.
(Also side note about doctors: the only time a doctor has ever treated me with respect and dignity was while I was briefly subscribed to $240 a month insurance through kaiser permanente, but I could only afford that for a couple of months to have a cancerous gash removed from my face.)
Up until 2020, my PMDD week was just that: one week per month of suffering. I managed to draw a 400 page graphic novel while pushing through my PMDD week during the beginning of the pandemic. Granted, I usually had to redraw the pages that were completed during my PMDD week, but I was super motivated to finish this book so I just pushed through the misery.
I now look back in envy at the person I was in 2020. I thought shit sucked back then, but then COVID came along and absolutely wrecked my beautiful dream come true of becoming a full-time artist.
As soon as the first COVID vaccine was available my spouse and I sought it out. I was expecting one day of discomfort in my arm and maybe some flu-like symptoms. I only got a sore arm, and for a couple of days continued on with my life.
About 5 days after the first vaccine I was thrust into the worst PMDD I’d ever yet experienced. Frantic, constant, intrusive suicidal thoughts. Debilitating fatigue and bodily discomfort. And then my period was 10 days late. So I was stuck in bed for 3 entire weeks with PMDD.
Then I got the second vaccine, and it happened again. I was so angry that nobody warned me that this would happen. I had deadlines looming and I was losing time to work. At this point I started seeing other people talking about how the vaccines were affecting their periods. Some people were weeks early, others, like me, were weeks late with severe PMS or PMDD like the kind I experienced. Some people immediately began accusing anyone of complaining about their affected cycles of being anti-vax conspiracy theorists.
Please note, I am not anti-vaccine nor do I subscribe to any conspiracy theories about the vaccine. I think this is a shitty situation that we probably could’ve at least had a heads up about if they hadn’t tested the vaccine only on men. I also don’t think any human being is necessarily to blame, because the exact same thing happened for a 3rd time when I actually caught COVID in April of 2022. So it isn’t necessarily due to any vaccine, it has something to do with COVID itself.
Here is a study that confirms that the vaccines increased period length
Here is a study about the virus itself affecting menstrual cycles
The only thing I would question about these articles is that they all use the word “temporary” to describe the affects of the COVID virus. In my case, my cycle has seemingly permanently changed since the first vaccine. Whereas before 2021, I was ill for a week. I am now ill for 2 entire weeks and maybe a few extra days as well.
Because of the pandemic and the release of my graphic novel Dog Biscuits, I was able to realize my lifelong dream of becoming a full-time artist. But after Covid I am completely useless and ill for two ENTIRE WEEKS out of EVERY MONTH. I spend the entire time in bed, fraught with headaches, body aches, insatiable hunger, skin issues, extreme fatigue, paranoia, anxiety, and the complete annihilation of my self esteem and imagination. I cannot even enjoy music during this time, and anyone who knows me, knows that is one of my greatest joys in life. I should note, these things are not a problem at all during the other half of the month, where I am happy to be alive, completely functional, and insanely motivated to work (I live to work. It is my purpose in this life. When I am not working I want to die.)
If you visit the subreddit for PMDD you will find many other people who are going through the same things that I am. You will see many people flailing helplessly, attempting to workshop their own solutions and self-medicating with vitamins and tea because doctors do not know, or care, about PMDD.
I personally have some luck microdosing psilocybin, which seems to immediately, though temporarily, take the edge off of my self loathing and anxiety. I also use a few other drugs to self medicate that I won’t get into here.
One of the only promising “solutions” very infrequently offered and difficult to obtain is the removal of ovaries (oophorectomy), which will cause the body to go into menopause, potentially lifting you out of this vicious cycle. I say “solutions” in quotes because for some, it IS an absolute solution and a cure for PMDD, at the risk of a shorter lifespan (fuck it, I’ll take it. I’m not living now anyway.). For others, their lives have been further destroyed by an oophorectomy, and their PMDD somehow persists, and their health is ruined and they must administer their own hormones and constantly adjust the dosage for the rest of their lives.
PMDD has arranged my life so that for the 1.5-2 weeks that I am functional, I am working twice as hard and cramming every ounce of energy into catching up on all the shit I fell behind on during my two weeks of PMDD. If I break my cycle up into 28 days, I only have days 3-16 to be a functional and creative person, fighting the clock before I’m back in bed. That leaves me no time for a social life and no time to go out and live an actual life as a citizen of the world.
I turned 35 one week ago today and I spent the entire day in bed, battling my own mind. My spouse and I had to cancel our tickets to see Alex Cameron at the Crocodile that night because I was so physically and mentally ill, and unable to get out of bed. One of the only thoughts that comforts me during PMDD is that someday I’ll be dead, I’ll no longer be suffering and none of this will have mattered. I’m not going to harm myself because I love my spouse and I love my two cats, and I want to finish the book I’m working on and after that I’ll probably want to write another one. I’m not going anywhere. But this is no fucking way to live, man.
Please refrain from offering solutions, I’ve explored them all ad nauseum. I only seek understanding and awareness. If you want to support me in some small way, you can subscribe to this Substack for $5 a month. If I can receive enough monetary support from this, I will not have to worry as much when I’m unable to work. Thanks for reading.