This is probably the most vulnerable, personal blog I’ve ever written but it needs to be written.
In the midst of a pandemic, protests, politics, and economic chaos, we are all feeling anxious and for good reasons. Anxiety is the current emotional state of the world, but an anxious populous isn't new. The Drug Industry has made billions of dollars peddling drugs to ward off the pervasive, low-grade “panic” society has felt for decades.
We were the perfect target market for the diagnosis, Generalized Anxiety Disorder ("GAD"). We were the perfect guinea pigs for the new-and-improved drugs that cause akathisia, because in its mildest form, it feels almost normal; like that extra shot of espresso you get to make it through the day. And at its worst? Severe panic attacks, debilitating anxiety, and suicidality.
All the above are emotional states caused by the drug side-effect, akathisia. They are also tardive, meaning "late-appearing" damage caused by medications. Add "disorder" at the tail ends of these words and they are also-also mental health diagnoses. So, how to parse them out?
Simple. If you’ve ever taken a neuroleptic medication (that means it acts on your neurotransmitters, and it's not necessarily a psychiatric medication) or any medication that mentions "akathisia," or "suicidal thoughts or actions" as side effects, the time you were on the medication is another reason or explanation for your anxiety, panic attacks, or depression, and whatever you want to believe is your choice.
If you need to believe medications are safe, then you might go with the disease model. But if you're like me or you've done any real research into this stuff, you know that taking medications for any length of time, whether intermittent, PRN, or "not that long" doesn't matter. These medications could be why your mental health took a turn for the worse, just as easily as any organic cause, genetic predisposition, or trauma-laden childhood. Even healthy responses to stress, fear, and uncertainty can turn maladaptive.
Bottom line: You don’t know all the variables at play and the reasons and neither does your doc.
I've had folks tell me they have had severe anxiety since they were small children. Therefore, it wasn't any medications they might or might not have taken. Tell me that, and I bet you'd also tell me that your childhood was a few acres short of green or peaceful and idyllic, stuff that would make any kid anxious. Anxiety is one way to adapt and react to uncertainty.
For example, my cat has anxiety. Yes. My cat. I got him at the height of drug-induced akathisia. He licks parts of his fur until the fur is gone, the skin, bloody.
No, he isn’t medicated. However, his owner (me), had and has--during bad bouts of recurrent akathisia--a pervasive sense of terror, so my cat clearly picked up on it. Now? He’s a scared, sweet, loving, but highly-sensitive cat (yes, I give him lots of love and yes, Bach’s Rescue Remedy helps.)
Here is my point, and I want to say it with softness--
If you have severe anxiety and it feels okay to call it a disorder for you, then do it. I'm not here to challenge your reality or tell you what you feel. What I am saying, with softness, is there might come a time when you need to open up the box they've put you in, and it's harder to do than you might imagine. So, what I offer here is a way to peek outside that box, and maybe say, "Okay, I thought there were only a few possibilities for this, but maybe--maybe--there are other forces at play in my body. And if it is due to--or was made worse by--medications, maybe it's time I just...consider that alternative."
The more ways you have to look at something, the more ways you have to possibly break out of the negative spaces you might find yourself in--places you might once have thought were are unbreakable.
Until you stop capitulating to the System that broke you, you can’t take control of the conversation. "No, I don’t have GAD. Please remove that from my medical chart. Based on what I know of my (past or current) medications, I have neuroleptic-induced akathisia. So, while I FEEL anxious much of the time, that’s a symptom of akathisia. Anxiety is not the cause of my emotional state; it IS my emotional state and it's also a pretty rational human emotion--all things considering--not a disease. Next?"
If anyone wants an argument, tell them you’re not there to challenge their beliefs, you’re there to get medical care for what they do know how to treat, and it isn't anxiety. If your anxiety is so distressing, you need a pill to manage it? Chances are, a pill got you here. If not, then something did, and almost any medication for mental illness has the very real, very high potential of making your anxiety 50x worse. Ask yourself if that's a chance you're willing to take, because there's no taking it back once you take that chance.
The sad truth is, most of us are forced to know more about our conditions than our medical professionals, meaning this: You are the foremost expert in the world of being you.
That doesn’t mean you’re right all the time, by the way. It means some serious self-work, self-examination and honesty is in order, and loads of humility help. Learn to work within the discomfort of being prepared to be, or actually being wrong, much of the time. It’s a good, cleansing burn that strips you of your ego’s need to halt your progression forward. One thing being a strongly opinionated individual has taught me: I've learned to be good at admitting when I'm dead-wrong and if I mess up, I don't go into a fetal.
Okay, I might still be a little agitated from the other night, when I contemplated smashing a window with a piece of art for an unhealthy amount of time… look.
We need to talk about rage.
For those of us who have akathisia, we speak of the unspeakable pain, of a feeling or feelings so unbearable, we feel like we want to peel off our own skins. We speak of suicidality—the feeling of wanting to escape the torment, doing anything to stop the pain. The violence turned toward ourselves.
What we’re not so keen on, what we don’t speak of often—until after we’re sure it’s gone—is violent thoughts, feelings, and actions we feel, or perpetrate, against others.
Read the Black Box Warning of this medication, often given for nerve pain, and it touches briefly on emotional states that the medication cause, states that can lead to violence.
While they’re careful to blame anything else, the bottom line is this: if it didn’t happen when someone took the drugs, they wouldn’t bother mentioning it.
It has to be reported to the FDA to even be on the Boxed Warnings. Even worse, as shown by the red V's (for "violent") on the trial exhibit, below, from the Dolin v. GlaskoSmithKline lawsuit, violent suicides and murder/suicides happened in the clinical trials, the trials that were done and used to get the drug approved.
Being in pain, any kind of pain, makes people... grumpy. Sometimes grumpy people overeat or get on social media and troll their ex-girlfriends. The Boxed Warnings don’t talk about stress-eating or being unable to control your inner asshole on social media. The warnings do warn against suicidality and acting violent towards others.
Anger and pain can sometimes fuel violence. So can feeling--and being--dismissed. The problem is our culture disallows, not just the expression of anger, but the emotion itself. Women, especially, have no appropriate outlet for rage, so many of us have, and do, turn it in on ourselves.
For people who suffer from akathisia, anger always dances on the surface of the torment.
Like a blackout drunk awakening the next morning, the day or evening before returns in waves. The hungover and remorseful husband tentatively walks through the house praying to God he hears his wife and kids doing their thing, looks to make sure her purse is still where it always is, praying he sees her face without an ugly bruise, knowing some bruises are uglier when they’re invisible.
I’d like to speak specifically to those who suffer with akathisia, whether chronically or occasionally, first.
While I’m a poet, there’s not many artistic ways to say, “I have taken my anger and rage out on my partner and, at times, I still do. And my rage has even gone into the realm of 'abusive.'"
There’s no redeeming or justifying the blind rages or the slow broiling over during the day that my husband feels, then unwittingly fuels by tiptoeing softer, being as absent as possible, and doing everything he can to mitigate or keep anything that might “wake the beast.” In fact, that dynamic has become rage-provoking unto itself.
And there’s no way to atone for abusive words hurled in anger toward someone you love (although I did redeem a ‘mug-throwing’ incident using symbolism, spin, and a bit of creative license.)
And it’s that last word, license, I want to address.
Another word for license is permission and I’m not going to give you permission to act out your anger, whether emotional or physical violence, against your partner or family.
When I start to give myself permission, I revoke it and work like hell, daily, to make sure I’m on top of my anger, or aware enough to ask for help before it’s too late.
I am not going to ever say it’s okay. I am going to tell you that I have acted out violently toward my husband during severe bouts of akathisia, and if it didn’t come at him, it would have gone inward, toward myself. He’ll tell you he’d rather it be the former.
What he doesn’t realize is, like the blackout drunk, my remorse the next day fuels something even more dangerous, unconscious and silent, something I call "my" or "the" Case, which I’ll go into in a second.
Back to those suffering with akathisia—I’m also not going to tell you that you have a whole lot of control over this rage, but I will tell you that you have more choice over how you respond to it, ride or wait it out than you might think.
I’m not going to tell you that you shouldn’t feel rage or enraged. You not only have real-world reasons to feel it, you have a neuropsychiatric condition that propels this rage, and that is where the focus needs to remain if you want to stay sane and stay married.
I would even suggest to you this is the way you stay alive.
Family, caregivers, intimate partners, this is for you.
If you share a roof, a flat, blood, children, or a life-commitment with someone who has developed akathisia, this isn’t only on them. Their anger makes a case for you to walk away. If they are in denial about akathisia? You might need to walk away.
But if they are fighting for their lives, and you walk away? That gives them the final piece of evidence to make their Case airtight, because it's one they’ve been building for themselves since they knew they were not the same person you married or loved.
The Case, in my world, is the gestalt of the reasons I no longer feel like I can withstand the daily battle with akathisia and the concurrent health struggles that I also deal with. What makes the Case so dangerous is that when I feel that much pain, I start to isolate myself so I can tell myself The Great Lie: Everyone would be better off without me here, in torment, tormenting them.
So caregivers/partners/families: Every time we have angry outbursts and you react with anger, fear, resentment, “...it’s YOUR anger problem, not mine,” you’re making our Cases stronger.
Please don't misunderstand me—if you or anyone is in danger or they are a danger to themselves, do what you need to do to be safe. But remember: while punishing them for their rage feels good in the moment, don’t trade what you want in the heat of the moment (and what feels righteous and good in that moment) for what you want the most: your loved one safe, alive, and on the road to healing what can be healed, including your family.
This is a family affair, guys and gals. You cannot expect the person with akathisia to go this alone, and in return, the person with akathisia can’t just let the rage take them, and you, over the edge of an irretrievable cliff.
How much control do *I* have? Sometimes, way more than others. There are times when it’s clear the rage is being generated out of real events, but disproportionate to the circumstances. I read notes to myself, watch videos of myself talking to me, talking myself through the rage, checking the logical boxes that tell me, in the end, “Ah, yeah, this is rage, not from him ignoring me, it’s from akathisia.”
But that was and is my work. Not a caregivers work. You can’t minimize someone’s pain, hurt, and emotional state for them.
You need a plan in place. A plan of safety, a plan that, no matter what, you adhere to.
If you have akathisia, or any form of drug-induced lingering or tardive mood effects, there is zero, ZERO excuse for you to not be in therapy--you and your partner and/or family.
The therapist must be on board. They must learn about akathisia. Right there, you could be saving a stranger’s life by educating a mental health professional. And you don’t need to convince them of anything other than you are in immense emotional pain and it absolutely is a type of brain injury.
Chemical brain injuries are recognized by the mental health community readily enough. Let go of your agenda to force their adherence to your vocabulary. You’re there to save your life and the lives of those you love, period.
What works and what does not work? When you’re not angry, you and your S.O. or caregiver need to sit down and discuss how their reactions help or make things worse. I can only promise you this: you will need to do this more than once.
Akathisia is a dynamic, moving target, and your brain is brilliant at finding legitimate "landing places," as my amazingly supportive husband calls them. The landing places have run the gamut from the healthcare system, to individuals, to events, to him and almost always, to myself. (And yes, while I'm lucky to have him, understand: I don't know how "lucky" I would be if I wasn't 100% committed to being as close to 100% for him as his intimate partner.)
Get off social media if it doesn’t calm you down. I’ve literally met NO ONE who is calmer, happier, less-angry after a day on Twitter or in a Facebook echo-chamber.
Look, you need an echo chamber with others who have been hurt? If you need validation, and resources? Do it. But if that’s all you’re doing, and if you’re getting sucked into the grief-outrage-blame-morbidity of it for hours, days, weeks on end, you’re going to slide into despair and feel even more isolated from the flesh-and-blood people around you who, believe it or not, need you, too. You will feel more suicidal. And likely, more rage.
Akathisia strips our emotional "skin" away. That can mean we walk around skinless or with huge chips on our shoulders. That does mean we have to work harder and be better than anyone at self-awareness.
No, it isn’t fair. No, you didn’t do this to yourself and since we’re adults, we learned that lesson a long time ago, or should have and yes, akathisia doesn’t just feel like an “unfairness,” does it? It feels like a violation of your spirit. Our spirits.
It was and it is.
But hear this with all the love, honor, and power in me that I hold and have for each of you and your suffering—you blame the world and it will bleed over and into you. It will devour you from the inside-out. It will strip you of YOU if you let it, and then, it will be you, alone, in a panic room.
But instead of protecting you from your worst fears, they're in there with you.
Alone, lying to you, whispering The Great Lie.
But you are not alone and that is so hard to remember. I need every one of you. This fight needs all hands on deck. Every, single voice to speak their truth of how and why and when they were violated, and how the violation continues.
I need you. And when I'm walking into the dark or clawing my way free, whether it's true or not, I tell myself, over and over, that you need me.
In peace, in pieces -