It's been about a year that I've known there's a name for it. It's been over fifteen years that I've know something is wrong.
People snicker when they hear the the word "orgasm" or "genital." They laugh when they hear that someone could experience 200 orgasms a day, and say things like, "sounds like a pretty good time to me!" They think it's like being on a roller coaster, day in, day out. Such fun!
Now, imagine you're at your mothers house. Imagine, if you will, that you're talking to your mother about food allergies. Imagine, while discussing the intricacies of gluten intolerance, that you have an orgasm. Just sitting there. Thinking about the most boring thing you could possibly imagine, your body responds as as inappropriately is imaginable.
Or, imagine, you're a tattoo artist. Imagine, you've been given the highest honor of being entrusted to permanently engrave someone's vision of themselves into their skin. Imagine, you're in the middle of said tattoo, and you have an orgasm. Stigma aside, that's pretty distracting. And what do you say? What do you do? How do you make what just happened "normal?"
It's not normal. And it's embarrassing. And it's not something you can explain away as a medical condition, even though that's exactly what it is.
If I said I was having a flair up of arthritis, I would be met with sympathy. If I said my cancer treatments have left me scatterbrained, you would treat me empathetically. But if I tell you I suffer from Persistent Genital Arousal Disorder, you'd either giggle like a seventh grader, or you'd change the subject and act like I'd never brought up such a thing. Well, I wish such a thing didn't exist. But it does, and I have it.
There's a weird place between being honest and being private. There's this divide, where you're not sure what you can and can't/should or shouldn't say. When is it appropriate? Who will I offend? There's such a stupid fucking stigma attached to our private bits. A stigma that has ruled me for most of my life, and affects us all in the stupidest ways. You can talk all day about how a sneeze almost happened, but the minute you talk about sexual release, you've gone too far.
So. Let me explain how PGAD works, as simple as possible.
There are two things that happen when you're aroused. Mentally, emotionally, you are entertaining the possibility of getting it on. Your brain is all about it. Someone's got your motor running, and it's exciting!
Meanwhile, your body does stuff. If you're a boy, blood flows down under, and your pants don't fit the way they used to. If you've got lady bits, blood flow leads to engorgement (EW!!! YOU SAID ENGORGEMENT!) and you have moisture in the places that would like to become the paths most traveled.
When you have PGAD, the second bit happens without any signal from the first bit. Literally, your body doesn't require signals from your brain or your emotions to get the party started down there. Sometimes, you're making a sandwich. Sometimes, you're contemplating your next move in Words With Friends. Sometimes, you're at a fucking funeral. And your body decides, because it's a fucking asshole, that it's time to get it on. And the worst part? Anxiety makes it worse. And guess what having PGAD causes? Anxiety. So guess what's always happening? Hooray.
Leaving my house can be terrifying. For real. Being at home alone, when it gets bad, is hard enough. But having to be at work, and appear that nothing is the matter, is incredibly exhausting. Leaving the house when I don't have a "have to" is even harder. Why put myself through the shame, the embarrassment,the awkwardness? Socializing is so difficult. And it's not like I can just shrug it off, and explain it away. "Sorry if I'm acting weird tonight, guys! My genitals are screaming and it's impossible to focus on your story! ha ha ha, you know how it is."
I won't pretend I wasn't sensationalizing to a degree. It's not always orgasms. Sometimes, it's a searing pain. It's an indescribable electric, burning, throbbing, or sharp pain. Sometimes, it feels like a tickle, the kind you can't ignore. Sometimes, it's crippling. But honestly, nothing is worse than having an orgasm when you don't want one. It's like being raped by your own body. You have no control. It happens because it does, because sometimes the sun rises and sometimes it sets.
There was this woman a few years back, Gretchen Molannen, who agreed to an interview about her PGAD on a local news program in Tampa, Florida. Because of a strong religious background, her self loathing was inflated for her body's constant begging for release. Her's was so bad, that she couldn't work at all. She was denied disability, even though She barely could leave her room. She was too embarrassed to tell her family, and for 16 years, she suffered in silence. After the interview, and before the interview aired, she took her own life. But not before saying the following: "I am flattered that you cared so much to want to help. I just hope this will educate people that this is serious and really exists, and that other women who are suffering in silence will now have the courage to talk to a doctor about it."
The thought of sharing this, and not doing so "privately," is terrifying. I've been debating sharing this at all. I've debated if I'm ready to deal with the bullshit that's bound to bounce back for sharing my story. But what Gretchen said is true. If she never shared her story, it may have never reached me. I would more than likely still be suffering, embarrassed, and unable to talk to anyone about it at all; wondering if I'm the only one. If it weren't for brave and honest stories like hers, I wouldn't know that there was a name for what I have, I wouldn't know that there were countless other women (and a few men) that know what I'm going through.
I decided I should share this for two reasons. First, that maybe my story could reach one person who doesn't know they're not alone. Because when you have a disorder related to your fucking genitals, you can't talk about it, ask about it, or even know how to google about it without feeling awful, which is bullshit. But it's true. The second reason is kind of selfish. I'm so fucking tired. I am so tired of pretending it's not happening. My anxiety is off the charts, I function on a sub-par level, I can't tell anyone why, and everyone thinks I'm a flake or irresponsible or not trying hard enough, but I'M FUCKING TRYING. And I'm tired. And I'm still trying. And believe me, I'm fucking trying.
I'm hardly a celebrity. But I think I can reach a handful of people. Frankly, I'm just done. Stick a fork in me. I'd rather have the world know, than have to pretend everything's hunky dory when I'd rather be dead. No, I'm not offing myself. I'd rather see what else this world has to offer. I'm not done tattooing or learning my awesome banjo, I'm not done traveling, I'm not done seeing if there will someday be a cure for this stupid, stupid ailment. And as unfortunate as this stupid, stupid ailment has been, and as much as it has affected relationships with people I've truly loved, and as much as I'm terrified to try to ever go on another date ever again and have to seriously look this monster in the face and introduce it to another person, I'm not really done. I'm just done with feeling like I need to pretend that this monster isn't here.
The Ministry of Fools, and the Pity With Which Mr. T Regards Them
- Living with a monster