Two or three times a year, I experience something called Persistent Genital Arousal Disorder. It’s a holdover from a bad reaction to the antibiotic Ciprofloxacin, which I took over five years ago and still react to.*
PGAD (yes, it has a name, and yes, there are support groups, though I’ve never joined one) is exactly what it sounds like: a constant tingling ache in your genitals. It also hits the nerves in my skin, nose, ears, and eyes. This episode was triggered by one morning dose of Sudafed last week.
It isn’t sexy. It isn’t fun.
But it makes a great joke in my musical. I rush through it, because I don’t even like the word “panties,” so you can imagine how mortifying this is. It still gets a pretty big laugh. Here’s a tiny clip of that moment.
This time it came with a restless ache of panic in the middle of my sternum. Then I didn’t sleep. Five hours of sleep, total, over four nights. A hallmark of bipolar disorder.
Still wide awake, I went to an audition for a role twenty years younger than me. I sang my ass off. I looked adorable. I’m not sure I got the part, because I was a little unfocused from the lack of sleep and, um, my vagina tingling. 🤦♀️
Each time I realize I’ve had a hypomanic episode, I have a hard time trusting myself. There’s an overwhelming feeling that I’m making it all up. I couldn’t really be bipolar, could I? Never mind the familial evidence: two great uncles who were hospitalized, an aunt who basically died of schizophrenia, a family member who was never formally diagnosed but is worse off than me and, by his own admission, treats it with alcohol and drugs, and an uncle who was bipolar, took Depakote, and got cancer, which some in my family blame on the Depakote.
As I’m writing this at a coffee shop, the man across from me is having a long, very intellectual conversation with himself. He looks perfectly normal, but he has no computer in front of him and no airpods of any sort. I don’t know his story, and I’m not going to pretend I do. But nobody in this room is asking if he’s making it up.
Then there’s me, in the same room, looking great but quietly falling apart.
We believe mental illness when it looks like him. We stop believing it when it looks like me.
Or like Christina Applegate.
Christina was diagnosed with MS, it’s upended her career. I also know something about this because alongside my bipolar disorder I have an immune disease called CVID. This makes me sick constantly. It is also sometimes not believed by others or frowned upon when I mention it.
This week, Megyn Kelly went after Christina. She announced she’d been misdiagnosed with MS five years ago. She doesn’t have it. She still has the symptoms. Kelly’s take: she’d made a cottage industry out of it. Nice, Megyn. Really nice. Helping women across America, aren’t you?
Think about that. Five years of being sick, and the news that the name was wrong gets answered with so you were performing?
I can’t speak for her. I can tell you what it’s like to be sure you’re sick and still half believe you’re making it up.
She’s not believed. I’m not believed. And half the time I don’t even BELIEVE MYSELF!
For a few years after I started performing my show, I got letters telling me I was faking it. Actual letters.
That last one is the problem, because if I think I’m making it up, why would I protect my sleep or take it seriously? Doubting myself isn’t harmless. It’s how I skip the part where I get better.
My therapist Ilana (yes, I play her in my musical, Molly Bell’s Hysterical) once told me we only make a diagnosis so professionals know what kind of person they’re dealing with. Take a listen 👇
It’s not a verdict. It’s a map. It can be murky, and it’s still a map.
I have a map. What I do with it is on me.
Part of why I doubt myself is that I’m very high-functioning, both as a bipolar patient and as a chronically ill person.
When I’m in a long project, like this last run of Jagged Little Pill, the Alanis Morissette musical where I played a mom addicted to opioids, I’m so focused on staying healthy enough to get on stage that the panic stays away. I’m grounded, with an acute sense that I can’t f*ck this up because people are counting on me.
But when I step off that stage and my body and brain realize the focus is over, it all falls apart. Usually I find my equilibrium before the next big project.
This time I had no time to recalibrate. We moved the day after I closed.
The last two years have been one big midlife milestone after another: a graduation, a college drop-off, a year of job loss, and my father-in-law's pancreatic cancer. Three weeks, and I did the bulk of helping him die. Then a memorial, a new school for our 8th grader, and my husband lost his job... again.
Then there was the house. My father-in-law was a hoarder. Not the TV kind, but he never threw away a magazine, a strawberry basket, or a receipt. We had to remodel the inside before we could live there.
He was a lovely man, and I'm not bitter. But it took a toll on my body and nervous system.
This hypervigilant state I’ve been in for almost two years has crashed into a bipolar cycle, and my body has revolted.
Did I mention menopause? At 50 and a half, a little before the average. So add night sweats and hot flashes.
Add an eating anxiety disorder where I can’t eat. I’m malnourished, my hair is falling out, and I can’t fight infections.
But people look at me and say, “You look great!”
I’m good at it. Twenty-five years of practice.
I am a performer. And I perform my illness for a living.
Actually, it’s backwards. On stage, I’m sick on purpose, and I’m totally fine. Off stage, I’m fine on purpose, and I’m not.
In my family, you don’t really talk about it. So when I started the blog that became my musical, my mom asked me in therapy, “Why would you even want to talk about this?”
I was doing the exact thing she was trying to talk me out of.
Then she came to the first reading of the show. At the end, she stood up and said, “I’ve never really been able to understand my daughter. But after seeing this show, I see it. Her! This is her!”
I felt vindicated. I felt seen.
Yesterday I told her I hadn’t slept in four days.
“When I was your age and I couldn’t sleep like that, so I would go grocery shopping at 2 am.”
Okay.
I’m sure she meant it as help. That’s what makes it so hard to push back on. How do you fight a woman who’s trying to send you on an errand?
I have no antibodies, a Crohn’s-type gut disease, a sinus infection that laughs at antibiotics, and a neck that feels like Quasimodo has moved in. But sure. Aisle five.
Shame, guilt, and ambition, all in one sentence. (Sorry, Mom, if you’re reading this.)
Here’s what I think now. My mom can see me when I’m lit. She needs a stage, a frame, an ending with applause. A Tuesday with zero sleep doesn’t come with any of that.
And honestly, maybe I do too. It’s easier to hold my illness when there’s a house full of people holding it with me.
So when someone says “you look great,” I say thanks. Because they aren’t lying. They’re watching the show.
Which brings me back to Christina Applegate. She’s at square one, and the world’s first question was what she’s getting out of it.
I understand that. It’s our first instinct as a species: don’t believe her, she wants attention. And sometimes that’s true! My daughter and I are watching Apple Cider Vinegar right now, about Belle Gibson, who faked brain cancer and built a wellness empire on it. There are lots and LOTS of podcasts about her, and I’ll admit they’re all very entertaining. People do fake it. I’m a performer. I know exactly how good attention feels.
But I also know PGAD at 3 a.m. It’s still a bit in my musical, and it gets a pretty big laugh. When it’s actually happening, nobody’s laughing, there’s no audience, and there’s no curtain call. Whatever I’m getting out of that, it isn’t applause.
The man across from me at Peet’s is still at it. Nobody’s asking if he’s making it up.
I perform for a living. I’m not performing this.
Do you find yourself doing this too? Holding it together because people need you, then falling apart in the car? Or getting doubted for it, or doubting yourself?
Let me know in the comments or send me a message. I’d love to hear from you.
Stay creative & semi-healthy,
Molly
P.S. The good news is my husband found another job quite quickly this time which is awesome because we desperately need health insurance. My weekly IVIG infusion costs $5,000 to $8,000 without it. Fucked up, right? Vote for the democrats please.
*A footnote note on Cipro
I was put on Ciprofloxacin for a bad sinus infection. Within days, I had electric zapping down my whole body, extreme anxiety, and outbursts that didn’t feel like me. A girlfriend of mine, on the same kind of antibiotic, snapped her Achilles tendon.
None of this is rare enough to ignore. Ciprofloxacin belongs to a class called fluoroquinolones, and the FDA’s strongest warning, the boxed warning, covers tendon rupture, nerve damage, and effects on the central nervous system. The FDA has said the side effects can be disabling and potentially permanent, can show up anywhere from hours to weeks after you start, and that for things like acute sinus infections, the risks generally outweigh the benefits when other treatments exist. FDA safety communication. MedlinePlus says the nerve changes and damage may not go away after you stop taking it.
I’m telling you what’s on the label now. If you’re on one of these antibiotics and notice tendon pain, tingling, zapping, or sudden changes in your mood, call your doctor right away, before you finish the bottle. I only had three doses. Some people I’ve researched online are unable to walk and/or are wheelchair bound. You can also report side effects to the FDA through MedWatch.
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