#PMDD is one of those illnesses that I wish was more discussed

[cookinguptales]

Today, SCOTUS is hearing arguments about whether businesses should have to cover birth control for their employees in their health insurance plans and I just. It’s hard to read.

I was going to make up this big informational persuasive post about the situation. But I’m just. I’m just so sad and angry and tired. So I figured I’d make an emotional one instead.

Let me tell you about my hormonal birth control journey. 

(Rest under a cut for length and content. cw: mental illness, graphic discussion of medical issues, injuries, & menstruation, discussions of suicide & self-harm, discussion of opioids, alcohol, & recreational drug use.)

 I started taking hormonal birth control late in high school to help regulate “painful periods”. It wasn’t for actual birth control at that point and I hadn’t been diagnosed with any disease, not even POTS yet. I just had “painful periods”.

Things were okay for a little while, but when I got to college, things started to fall apart. The double whammy of undiagnosed mental illness and a barely-diagnosed chronic illness (POTS was relatively unknown at the time and my doctors gave me information which I now know is incorrect) really caused me to spiral during my first year of college. I didn’t know it yet, but I react very poorly to some forms of hormonal birth control. Put succinctly, they drive me batshit insane. On one pill, I literally did not leave my apartment for over a month. I became very literally agoraphobic. Bouncing off the walls, irritable, angry, high suicidal ideation. As bad as side effects can be.

But I didn’t know that yet. I just stopped taking BC as part of the whirlwind of medicines and doctors that my life became for about two years while I was on my (first) medical leave from college.

My ribs were coming out back then. I didn’t know that yet, either. I knew that when I was around 16, I started getting severe back pains. The first time it happened, I had to go to the ER because I couldn’t breathe and my teachers thought I was having a heart attack. I got a narcotic shot in my butt. It did nothing to dull the pain. That’s how much it hurt. But it went away on its own eventually and I over the years I started medicating reoccurrences with a lot of different things. Physical therapy. Muscle relaxers. (Medically prescribed) opiates that made me puke. Prescription strength Advil. Wine.

I didn’t see that it was all connected yet. Not yet. I didn’t realize, with my periods as irregular as they were, that the back pains were coming around the same time in my cycle each time.

My “painful periods” got worse. I talked to an OBGYN, with my mother in the room. I told her that I was scared of something like childbirth. I knew that my blood flow was dangerously bad. What if the fetus didn’t get enough blood? Oh, my doctor laughed, that wasn’t a problem. The fetus would always get enough blood. The risk was that I wouldn’t. That it, like the tiny vampire it was, would take it all until I simply died. If I got pregnant, I would likely die. I asked about permanent sterilization. My mother cried. My doctor said no. I didn’t ask again.

I went back on birth control.

It was odd. I didn’t want children before that visit, not really. I was so tired all the time. I knew I’d never be able to manage to raise a child — and honestly, I didn’t care to try. I was so depressed. I was so sick. It sounded like so much work. I still don’t want to have kids. But it still feels… weird, knowing that I can’t. And knowing that I could die if I get knocked up.

I’m bisexual, but I have zero sexual contact with men (because I don’t love them, despite being somewhat sexually attracted to them) and zero sexual contact with people with penises (because they could literally kill me and it would be no one’s fault). But I’ve been followed home by men before. I’ve had cabbies lock me in and ask me for a date. I’ve had men who won’t take no for an answer. And my god, it terrifies me that I might have to deal with both sexual assault and a slowly creeping murder all at once.

(It’s laughable to think he’d be tried for both.)

I ended up getting sick off birth control a few times. I went on and off it periodically during my college career. I now in retrospect see that a lot of my “meltdowns” were a combination of discrimination-based stress, physical breakdowns, and hormonal whirlwinds. At my worst times, I was on birth control. The wrong ones.

My periods, over time, got worse. My back would hurt. The cramps were unbelievable. I couldn’t feel my legs. I could feel them too much. I couldn’t keep food down. I’d be so angry, so sad, so everything.

I went to the doctor again. I was diagnosed with both endometriosis and PMDD. PMDD, or premenstrual dysphoria disorder, is like PMS on steroids. I remember telling my doctor, in halting tones, that I wasn’t well before my periods. That I always had depression, always had anxiety, but I wasn’t well before periods. At her prodding, I confessed that sometimes I would just lie there for hours, for days, in the fetal position. That I’d clutch at my own arms, mooring myself, because I knew that those white knuckles were the only thing between me and killing myself. That my brain, always somewhat malevolent, became an inescapable mantra of death. That I’d just lie there and sob because it took everything I had not to hurt myself. That I’d find claw marks, bruises, on my arms later, and all I could do was get some ice.

It was better than the alternative.

I told my doctor about how painful my periods had always been. How I’d heard a story once about, y’know, that Spartan boy? The one who hid a fox kit under his shirt during an examination and stayed perfectly silent even as it clawed at him so he wouldn’t be caught with it? How it tore at his stomach until he fell down dead, still silent? I told her how I felt like I was holding a fox kit every damn month and sometimes I couldn’t stand the pain of it. Sometimes I considered ending that pain, one way or another.

She put me back on birth control.

A little less than a year later, or in layman’s terms, about a year ago, my mental health was so bad again that I was almost committed. Literally committed. I had to go stay with my parents for a few months while I transitioned to new medications because it wasn’t safe for me to be alone. I learned that the birth control I was on could create those symptoms — but they didn’t start until months after you’d started taking it. So you didn’t realize it was the medicine. You just assumed you were crazy and unlikable and so, so angry. At the world, at your loved ones, but mostly at yourself.

I learned, around that time, that I also had Ehlers-Danlos syndrome. That the pain I felt every month right before my period wasn’t just cramps. It was my bones coming undone from their sockets. It was my hips dislocating. It was my ribs popping out of my spine. I realized that that lump my parents could feel in my back wasn’t a hard knot of tense muscles. It was my fucking rib poking out of my back. I learned that there is a period right before menstruation that mimics a period during pregnancy where your joints loosen — your body thinks it is preparing you for birth, for loosening your pelvic cavity so an entire head can pass through. For someone with Ehlers-Danlos syndrome, that period of joint looseness was enough to wreak absolute havoc on a system of already-weakened joints.

I learned how to put my own ribs back in with a foam roller. I started drinking marijuana tea for the pain. I went on a different birth control. I stopped taking the placebo pills. I had to fully eradicate that entire portion of my cycle. Goodbye PMDD and ribs constantly popping out. I don’t miss you!

I am still on that pill, y’know. Every day I take it and wonder if I’m one step closer to the day when it inevitably destroys me. The last one took about a year. Tick tock.

Or maybe I finally found the one that works… I really just don’t know.

The fact of the matter is that I have a full handful of maladies that require birth control so I can function. PMDD, endometriosis, dangerous pregnancy, EDS. I need hormonal birth control. I would probably be dead by now without it. The PMDD especially was that bad. My internal organs are likely a scarred-up mess. But the birth control itself almost killed me, too. God, it was close.

Simply put, birth control is heaven and hell all wrapped up in a pill. It treats illnesses and it prevents pregnancy. In other words, it provides you with both freedom and peace of mind. It is absolutely essential. But it’s also monstrous. The sheer number of sometimes-deadly side effects that come with hormonal treatments is staggering. Which is why you need to be under a doctor’s careful eye when you’re on it. You need to be free to choose whichever brand you need. You need to be free to switch kinds at a moment’s notice. None of these things are possible in a system where these pills are not fully covered by insurance.

(And yes, I know, this is a stupidly American problem in so many ways. Obviously the ideal thing here would be single-payer for all medical procedures. But that’s not up for debate here and insurance for BC is. Because for some reason we let some people’s religious convictions determine others’ health care. But I digress.)

Please don’t worry too much for me. I have a good employer who has told me in no uncertain terms that I don’t need to worry about my healthcare coverage. But there are so many people just like me. Who may not have diagnoses yet. Who may have “problem bodies”. Who only know that they need to do something and that they might have to go through several pills to find it. Whose employers either have the strong religious belief that hormonal birth control is a sin or the strong religious belief that they want to pay as little as possible for their workers’ health care. (Call me cynical.)

Those are the people I worry about. Those are the people I feel absolutely sick over as I watch the SCOTUS argue whether we should be allowed to have life-saving medicine. The people who I know will fall through the cracks the second that the cracks are widened enough for them to do so. The people who will die.

It’s a tense time right now. It’s a tense time for very obvious reasons. But this morning I find myself to be even tenser, and my stomach hurts thinking about it. It feels like all I can do is stare at a pill packet and remember every horrible reason I need it and every horrible thing it’s done to me and I just.

It’s a lot.

[palpablenotion]

I was just blocked by someone, I assume because I referenced my non gender related dysphoria. And on one hand, I’m completely astounded. On the other, it figures.

I get a bad response every time I talk about my dysphoria. I get told it’s a gender related issue. It’s something only trans people experience. (While I’m not cis, I don’t identify as trans and I don’t experience dysphoria surrounding being an agender demigirl, just to stop anyone from saying anything about cis people and co-opting terms).

But it isn’t. It’s a psychological term referencing a symptom/side effect. It means someone experiencing unease or dissatisfaction in life, extreme enough to impact one’s life. It isn’t necessarily continuous, but it can be. It can also come and go.

I get told that what I’m talking about is body dismorphic disorder. I get told that I have it. This is with no more information than me saying, “I experience body dysphoria unrelated to gender.”

I feel like most people don’t understand that body dysmorphic disorder is something with specific criteria from the DSM:

Diagnostic criteria for 300.7 Body Dysmorphic Disorder A. Preoccupation with an imagined defect in appearance. If a slight physical anomaly is present, the person's concern is markedly excessive. B. The preoccupation causes clinically significant distress or impairment in social, occupational, or other important areas of functioning. C. The preoccupation is not better accounted for by another mental disorder (e.g., dissatisfaction with body shape and size in Anorexia Nervosa).

I don’t fit this criteria. You know why? Because I don’t have BDD.

It is transphobic to talk over trans people and tell them what they experience. And, like that, it is ableist to talk over neurodivergent and mentally ill people and tell them what they experience. Dysphoria is a term shared between these two communities, and neither has a right to dictate or limit the use of this term within the other community.

ADHD individuals experience a specific form of dysphoria called rejection sensitive dysphoria (RSD, not to be confused with reflex sympathetic dystrophy, which is something else). “RSD is an extreme reaction to real or perceived rejection which often leads to reacting badly to being corrected” (@autism-asks). Basically, perceived rejection can result in dysphoria, often volatile at that, in those with ADHD.

I used that as an example because, ironically, being told I didn’t experience dysphoria caused RSD. I got so angry (not entirely irrationally, I feel) and am still so angry and confused nearly a week later.

Many psychological disorders and neurodivergences have dysphoria as a symptom. Some of those include: major depressive disorder, dysthymia, bipolar disorder, cyclothymia, borderline personality disorder, premenstrual syndrome, prementrual dysphoric disorder (characterized by dysphoria), generalized stress, adjustment disorder, all of the anxiety disorders (post-traumatic stress disorder, panic disorder, generalized anxiety disorder, etc), dysphoric rumination (again, characterized by said dysphoria), dissociative disorders (dissociative identity disorder, depersonalization disorder, etc), ADHD, mixed anxiety-depressive disorder, personality disorders, substance withdrawal, body dysmorphic disorder (dysphoria is a symptom of this, NOT interchangable with it), akathisia, hypoglycemia, schizophrenia, sexual dysfunction, body integrity identity disorder, insomnia, and chronic pain.

Considering there are literally a dozen of those disorders I currently have, I think it’s safe to say I probably experience dysphoria.

It’s actually really difficult to find anything about physical dysphoria because all links I find are about gender dysphoria. When I speak up about it, I get silenced. I get blocked. I get told I’m not experiencing that. I can only assume that’s why it’s so difficult to find. Other voices also get silenced, because I cannot be the only one that experiences this. I don’t fool myself into thinking I’m so unique.

(Note: this doesn’t mean people shouldn’t talk about gender dysphoria. Of course they should. Gender dysphoria is a serious issue as well. But it being the only form of dysphoria that it is safe to discuss means that those who experience dysphoria unrelated to gender don’t have support or resources. It can be easier to find resources if your form of dysphoria has a specific name, like rsd, pmdd, etc.)

So what is it that I experience? It’s very difficult to describe. Typically I only experience dysphoria during anxiety attacks, sensory overload, or just times of very increased anxiety. During these times, I might experience a sort of ill-fittingness. My body doesn’t fit anymore. Not necessarily that it’s too large or too big, but like it was tailored for someone else. Often enough, it’s centered around my arm only. It feels like when you put on the wrong cut of jeans. They’re on, they fit, but you just want to put your own jeans back on. 

I don’t know why I experience this. I know it’s incredibly distressing when it happens. I know that sometimes it makes me have extreme thoughts such as wishing I could remove the arm I have and replace it with my arm (which I obviously can’t do because it is my arm). I have, in the past, scratched and hit myself trying to feel anything besides this wrongness in my limbs.

I said that I experience this during panic attacks? It is incredibly likely this causes the panic attack. I remember the first time I clearly experienced this. It was during the Criminal Minds season finale, To Hell... I had spilled fruit punch on the arm of the couch and got a washcloth to clean it before it set. I remember scrubbing the fabric and it felt like the bones in my arm were vibrating, like the two textures interacting was sending a shock wave up my arm. I freak out. I began hyperventilating, slapping and scratching my arm (my right arm). I was babbling as my mother and sister tried to figure what is wrong. “It doesn’t fit! It isn’t- I can’t- It doesn’t fit!” I was crying. I wanted it off, I wanted my arm back, I wanted everything to stop.

I don’t remember what happened after very well. I think my mother gave me a xanax. They were almost as freaked out as I was.

It wasn’t just bad sensory input. Bad sensory input might have caused it, but what I was experiencing was dysphoria. I’ve spoken with several people that have degrees in psychology, including my own therapist. I just recently spoke with a mutual who admitted they had never heard of this, it wasn’t any form of dysphoria they knew of. They also said, “but damn if that isn’t exactly the word to describe it.” They attempted to ask around the issue to see if I was experiencing something else - not correcting me, just trying to figure this out - and admitted that I didn’t fit what they had considered (depersonalization disorder) which I had already looked into years ago. I don’t have it.

The only two topics I’ve ever found not about gender dysphoria but still about physical dysphoria were about addiction and the vagus nerve. In fact, when discussing the physical dysphoria associated with the vagus nerve, delirients were still mentioned. If anyone from the medical side of tumblr cares to discuss this, I would like to further look into this. I know I’m not the only that experiences this. I just want to understand this thing.

TL;DR: Dysphoria is something that is experienced by people with literally dozens of mental illnesses, disorders, syndromes, or neurodivergencies. This can include physical dysphoria. This is an experience the neurodivergent and mentally ill community shares with the trans community. It does not inherently have anything to do with gender, but it can. Don’t be transphobic and tell trans people what they experience or what they don’t experience. Don’t be ableist and tell neurodivergent/mentally ill people what they experience or don’t experience. Basically? Trust that someone knows more about what they experience than you do, especially if you don’t know them.