TW: If reading about anxiety and other mental health disorders makes you feel NOT GOOD you should most definitely skip this one!
I Am Not Just “Stressed”
I read somewhere that 90 percent of our serotonin is produced in our gut. I also read that gut bacteria make up more than 90 percent of our cells. It’s not entirely clear what role serotonin plays in anxiety, or what role the gut plays in anxiety, but it’s the kind of information that hooks me and makes me wonder, could this finally be the cure? Because even though none of the other anxiety “cures” have ever worked, maybe this could be the one. Maybe I’ll finally understand what’s wrong with me on a functional, cellular level.
Scientists, doctors, and other professionals aren’t really sure what chemical deficiencies, hormonal excess, genetics, and life experiences lead to anxiety. Which means they don’t entirely know how to treat it. They know some things work for some people, and others don’t. There are ways to reduce external stressors, there are ways to hack the nervous system, but it’s still not ultimately clear why some people experience fleeting moments of anxiety that can be remedied with these momentary cures, and others of us feel something like an acidic pool of near constant worry corroding our insides.
I am the latter of those two kinds of people. I have been an anxious person for so long that I didn’t really understand that I struggled with anxiety from a mental health perspective until fairly recently. When you’ve been a certain way your whole life, you assume everyone else is that way too. And when the illness lives in your interior, in a way no one else can witness, it’s incredibly hard to understand that other people don’t have a mean little voice constantly ruminating in their heads and a cloud of fear constantly hovering over them making it very hard to see joy and compassion in the world.
For example, here’s a short list of things I didn’t know were unusual until my late twenties:
One time I weirdly peed the bed when I was 11 or 12 (I hadn’t peed the bed in years) and for the next SEVERAL YEARS the only way I could fall asleep was to pee 3-4 times right before bed and say in my head, “Please don’t pee the bed, please don’t pee the bed,” over and over again until I fell asleep to ensure I wouldn’t pee the bed again.
On family car trips over 30 minutes, I would scratch at the back of my hand until it bled to try to keep from overthinking about the fact that my brother would likely throw up in the car at some point because he got car sick very easily (I also didn’t know that I was struggling with a vomit phobia that I now recall being present at least as early as 5 years old — which is to say that the anxiety developed VERY EARLY).
I compulsively pulled out my eyebrows, eyelashes, and obsessively picked at my acne-prone skin, something I now know is called trichotillomania and dermatillomania respectively, and are common anxiety symptoms and something friends and family were incredibly cruel about when I was growing up ( I have not been able to kick this particular tick and while my skin has cleared up, I’ve just accepted that my eyebrows are probably always going to be thin and wiry and everyone can just get the fuck over it).
I obsessively Google health issues for hours and hours and hours at a time.
I pick at the skin around my nailbeds until they bleed, and peel off the whites of my nails as soon as there is anything to grab onto.
I struggle with sleep, especially sleeping in new places (something my mom has recently informed me has been a problem since I was a baby, and has very recently bloomed into something of the crux of my anxiety. See more on this below).
Anxiety is particularly tricky to communicate because people often confuse it with stress, in the same way people regularly confuse sadness with depression. Just because you’re sad doesn’t mean you have depression and just because you’re experiencing stress doesn’t mean you have anxiety. In fact, I really hate saying, “I have anxiety,” because what I assume people hear is that I am a giant stress ball, so tightly wound that I might explode at any moment. Or that I have a type-A personality, I am obsessive and controlling, I am a Debbie-downer and a wet blanket and a worry wort, and my least favorite, that I’m “no fun,” and all the other awful names and ways we have to describe people for expressing any level of concern.
I hate saying “I have anxiety” because fundamentally I am none of those things, but that’s the way anxiety gets depicted in media.
That sort of anal-retentive, perfectionist character has never been my personal brand of anxiety and I hate getting lumped in with it. That monolithic view of anxiety is kind of similar to claiming a person has OCD because they like to be organized when in actuality, that doesn’t represent the very serious mental health disorder at all.
Anxiety is incredibly tough to explain and articulate because most people will feel anxious many, many times throughout their life (giving a public speech, asking someone on a date, suddenly realizing you missed a deadline you totally forgot about, etc.) but these people do not have anxiety, not in a clinical sense at least. And these short-lived experiences of anxiousness lead a lot of people to think they understand what it means to have anxiety clinically and can therefore act as an authority to hand out a lot of unsolicited advice on how to cure it.
Once, in fact, a loved one (who will remain nameless) told me that anxiety actually wasn’t even a real disorder. “Too many people are just unwilling to feel their feelings,” they said. “You don’t need medication to numb yourself, you need to experience your emotions fully. The ‘anxiety’ will go away if you’re just honest with yourself.”
That was five years ago, and while on some fundamental level I knew it was a fucked up thing to say, it colored the way I viewed medication and mental health treatment for years. It still messes me up if I think about it too much.
I say this because I need you to understand that I have been hesitant to talk publicly about my anxiety disorder because I’ve spent just about three decades getting inundated with incredibly unhelpful “advice” on how to fix it, with an awful lot of that advice talking down on prescription anti-anxiety medication. So before I dive into THAT, here’s the short list of things I’ve tried or am currently trying just so you know where I’m starting from:
Meditation
Yoga
Supplements, herbs, psychedelics (GABA, 5-HTP, zinc, vitamin B, vitamin D, cortisol reducers, probiotics, melatonin, magnesium, l-theanine, tryptophan, ashwagandha, CBD, weed, acid, mushrooms, MDMA, herbal teas, herbal capsules, and probably many more I can’t think of right now)
Diets (no dairy, no gluten, liver cleanses, fasting, low inflammatory, vegetarianism, veganism, probiotic-rich foods)
Acupuncture
Exercise
Therapy
Herbalists
Naturopaths
DOs
Western medicine doctors
Breathing exercises
EMDR
Cold plunges
Some of these things work really well to help manage the anxiety, but none of them have been able to wipe out what I can only describe as this low-level hum of doom and worry always lurking around my brain. These tactics have only been able to make me less annoyed by that hum. To be able to look at the hum and say, “Hey, I hear you, you annoying ass bitch! You can shut up now!” and then the hum maybe gets a little quieter for like 20 minutes or even a few hours, which in the grand scheme of life is just not really enough to be helpful.
Sleep Anxiety: A New Fresh Hell
I was getting by in this way until early 2021 when a mental door unfortunately opened that I have not been able to close since. I mentioned above that sleep has always been tough for me. I’ve long described myself as a “light sleeper” (which my favorite doctor told me was a really unfair way to describe what was probably a lifetime of untreated anxiety that I should have gotten help for much sooner — thank you, Dr. Sarah!).
All my life, I’ve been unable to fall asleep if there is ANY noise. I wake up to the slightest snore or jostling (this has made it incredibly difficult for me to share a bed with a partner, something else society loves to make me feel guilty about). I wear the heaviest-duty earplugs you can wear and run a fan or other white noise, and take a fistful of sedative supplements each night, but have continually found myself in situations where that’s just not enough. I barely slept during my four years of undergrad because everyone, everywhere was so noisy, which triggered an even more heightened awareness of noises and fear of not getting enough sleep. And because all I’ve ever been able to afford is relatively shitty housing where we’re all packed together like sardines, I’ve never really found a quiet place to sleep and have spent basically the last 10 years poorly rested (Which, guess what? Makes the anxiety even worse! What a fun combo!).
But one night in March of 2021, after months of recovery from an extremely bad bout of insomnia (that got triggered by loud upstairs neighbors in Boulder), some new neighbors moved into the apartment below mine and at 3am were blasting music and playing guitars through amplifiers. J went downstairs to yell at them and I calmly told myself, “It’s fine, they’ll shut up after this and you can go to bed.” But even after they turned the music off and quieted down, I couldn’t fall back asleep that night.
The next night as bedtime approached, I felt the fear mounting that I wouldn’t get sleep again, that these new neighbors would wake me up. Below me, I could hear their voices and doors slamming shut as 10pm approached. I stared up at the ceiling from the bed, J already fast asleep, while the fear grew and grew until it became a full-fledged anxiety attack. Suddenly I was sweating and my heart was beating so hard against my chest that I could see my skin rising and falling with its thumps. I picked up a book and went to the spare bedroom to try and calm down (and yes, I did my stupid little breathing exercises and listened to a meditation, and let me just say when you’re in the middle of an anxiety attack those methods are utterly useless and I would greatly appreciate it if people would stop suggesting “breathing” as a solution to a full-blown chemical, bodily reaction). Just as I’d get the fear to settle and I’d start to drift off, another wave would hit me and I’d be right back in the attack. This rollercoaster went on until about 2am when I finally fell asleep from pure exhaustion. A nearly 5-hour anxiety attack.
Then the next night it happened again.
And the next night.
And the next night.
And suddenly that door was opened and sleep hasn’t been the same since.
For the next three weeks, I didn’t sleep more than a few hours a night. That was when I finally decided to seek out medication because I realized it was either drugs or I was probably going to die.
Oh, Is THIS Anxiety?
In April 2021, I started on Lexapro, which after a few weeks reduced the duration of the evening anxiety attacks so that I could fall asleep sometimes before midnight. And after a few months of medication (and moving to a new, quieter home) I was able to start sleeping somewhat normally again. But I was always on edge and I could see that the doorway remained open. The threat of falling back through it was always there. A camping trip in a new place, a scary movie too close to bedtime, or just simply thinking too much about sleep could send me right back into a fitful night. It was annoying, but it was manageable.
I was so focused on the sleep anxiety that I didn’t really notice if the anxiety in other parts of my life was getting better. I’d read so much about people claiming to feel like zombies and feeling completely alienated from their emotions when taking an SSRI that I assumed since I wasn’t feeling those things that the drug wasn’t really working for me.
I only stayed on the Lexapro for about a year and a half before I realized a few unpleasant side effects I was experiencing (chronic sleepiness, weight gain, trouble concentrating) were actually from the Lexapro. I ended up tapering off in June 2022 thinking I was past the nighttime panic attacks and could get by without it. It was only then that I actually understood what exactly I’d been struggling with my entire life.
In the same way a fish probably doesn’t understand what it means to be in water because they’ve always been in it, I didn’t really understand what it meant to have anxiety because I’d always had it. After coming off the Lexapro, the anxiety started creeping back and for the first time I was able to see the anxiety because I had its absence to compare back to.
This awakening to my anxiety is difficult to explain (which is possibly why it is so difficult to treat) but I noticed a few things right away:
The voice in my head (not like, a mystical voice, just my internal dialogue) started getting very mean, telling me everyone who loved me was frustrated with me, that I was very weak, that I wasn’t really good at anything, that everything was a competition that I was spectacularly failing. I couldn’t stop ruminating and thoughts flashed through my head like a strobe light. I did not know that not everyone had a voice that said things like that to them 24 hours a day. I didn’t even realize how mean my own voice was until it crashed back into me like a wave.
The night time scaries came back. The best way I can describe what I have lovingly dubbed “the night time scaries” is that after 8pm or so, a sense of doom washes over me and I start thinking about everything I’ve ever fucked up, all the mistakes I’ve made, all the mistakes I’ll probably make again, all the things I don’t like about my job, all the things I don’t like about people I love, all the things those people probably don’t like about me, and the impending sense that time is marching on and I can’t do anything about it. It’s kind of like the Sunday Scaries but it’s every single night and it’s 1,000 times more intense. Meditation and yoga can get the thoughts to feel less overwhelming, but the feeling of existential doom always remains. Before medication, I thought spending the entire evening worrying was just something I did because I was mentally weak. I didn’t realize other people did not battle this every single night.
The sleep anxiety returned with a vengeance.
You might notice that what I didn’t say is that I felt very stressed out, because again, that is not how my anxiety manifests (and why it is continually unhelpful when healthcare professionals tell me I need to reduce the stress in my life to reduce the anxiety when stress has absolutely nothing to do with it).
What I did experience was something like a crushing empathy for my younger self who managed to survive this way for 28 years before seeking out medication. How did she get through grade school, middle school, high school, college? How did she manage relationships? Why did no one help her?!
As one awful anxiety symptom after another began returning and I was able to hold the clarity that THIS WAS NOT NORMAL, I sought out a new doctor, and new medication. My new doctor looked at my medical history, saw my incredible sensitivity to medications, and ended up putting me on an extremely low dose of Zoloft (The maximum dose for this medication is around 300mg, the minimum therapeutic dose is 50mg. I take 25mg).
Within four weeks, my life turned around. At three months I was sleeping nearly normally even though things were very unstable in the camper (there are still good nights and bad nights), I felt confident in my work, my relationships, and my friendships; and I felt more connected with the world.
I know it’s cliché but it’s truly as though a darkness I did not know was there had lifted. My life felt possible. I don’t know how else to describe it.
I’ve been on Zoloft for about six months now which apparently is just long enough to feel stable and also question if I really need anxiety medication (funny how finally not having anxiety makes you wonder if you actually need the thing that keeps you from experiencing anxiety). I tried coming off of the pills a few weeks ago and was immediately greeted by my old symptoms and after one completely sleepless, anxiety attack-filled night, I promptly started taking my little green tablet again every morning.
To those who are still unconvinced that taking anti-anxiety medication isn’t just shirking your responsibility to be with your emotions 1) Go fuck yourself and 2) This might not be the case for everyone, but I still feel all of my emotions on Zoloft. Every single one of them. My emotions aren’t “dulled.” I still feel wonder and awe and sadness and grief in exactly the same ways I did before the medication. In fact, I still even feel situational anxiousness, stress, and fear of failure. But what I don’t experience is the chronic internal meanness and doom, which allows me to spend more of my days just living and less of my time “managing.” I still have yoga, meditation, therapy, exercise, acupuncture and many other wellness techniques in my toolbox. They’re just a lot more pleasant to take part in when they’re enhancing my well-being rather than expecting them to do the heavy lifting of keeping me from drowning.
There are a lot of unknowns around taking medication like, will I take this drug forever? Will I ever switch to something else? Will it eventually stop working? And because it’s impossible to answer those questions, I’m just not worrying about them right now (and that my friends is the power of Zoloft!).
Clinical Anxiety is Like Diabetes (sort of)
I’ve heard a lot of mental health allies say things like, “Hey, I get it. If you have a broken leg, you go to the hospital and get it treated. You don’t try to meditate the injury away. Same is true for anxiety.” And while I appreciate the sympathy, I hate that example because having and treating a broken leg is nothing like having and treating anxiety. I think a better metaphor is thinking about anxiety like diabetes (stick with me).
Diabetes can come about in two different ways. Type I is a genetic condition that appears early in life and doctors and scientists don’t really know what causes it. Type II is lifestyle related and develops over time and can be caused by all kinds of things like diet, weight, and ethnicity. Type I diabetes is controlled by tracking blood sugar levels and taking insulin, but ultimately has no “cure.” Type II diabetes also tracks blood sugar levels, can be managed by lifestyle changes, though sometimes still requires insulin, but ultimately it can go into remission.
I think anxiety is quite similar. This is an entirely unsubstantiated claim, but I think there is type I anxiety, which is genetic, comes around early in life, is treatable but not curable, and requires medication to manage; and type II anxiety which comes about anytime in life after some kind of traumatic event, can be managed with lifestyle changes as well as medication, and can possibly go into remission with a fair amount of effort.
I think a lot of people experience type two anxiety at some point in their lives and when they see their own anxiousness go into remission from lifestyle changes, they assume type I anxiety will benefit from the same treatment.
But could you imagine telling a type I diabetic that they don’t really need insulin because just by changing your diet and exercising a little more, you were able to produce your own insulin again? Could you imagine saying something like, “I dunno, don’t you think it’s kind of unnatural and lazy to be putting synthetic insulin into your body when you could do other things to try and produce it on your own?” Could you fathom asking a type I diabetic to, instead of pursuing friendships, careers, relationships, and fun, spend every waking moment of their lives obsessively tracking their blood sugar and every morsel of food that enters their body so that they could try and manage their illness “naturally?” Or saying something incredibly stupid like “Aren’t we supposed to experience spikes and dips in our blood sugar levels? Don’t you feel like you’re dulling yourself to your body’s natural response?”
COULD YOU IMAGINE WHAT A GIANT ASSHOLE YOU WOULD SOUND LIKE IF YOU SAID THOSE THINGS?!
And yet I hear those same phrases about anxiety and medication all the time.
This metaphor is the easiest way for me to sum up my experience with anxiety. I think I’m a type I anxiety haver (anxiotic?). Mental health disorders run STRONG in my family, and knowing the sleep anxiety was there as a baby, the vomit phobia appeared at least by age 5, and all the other little signs and symptoms were there well before I even knew the word anxiety, my condition very much seems to be genetic. Of course, situational moments can impact it (the same way a type I diabetic could still massively spike or drop their blood sugar levels, even with insulin treatment), but the reality is that there is baseline anxiety somewhere in my DNA that just isn’t ever going to go away on its own, no matter how much I change my lifestyle. Medication is a very practical way to make sure I don’t die and also don’t have to spend my entire day managing symptoms.
What’s telling is that birth control pills (and IUDs) fucked with my body and emotions far more than anti-anxiety medication ever has, but no one ever said to me, “Do you really need to be taking birth control?”. And that’s because there’s a stigma around mental health (which stretches across a massive spectrum from “anxiety isn’t real” to “anxiety is real but all you need is this one herb and you’ll be cured.”) and not around other conditions in the same way.
And now, in an ungraceful way, this post is coming to an end because I’ve been working on it for a few days and I’m tired.
What To Do With These 3,800 Words
If you think you have clinical anxiety:
Find a doctor, naturopath, or whoever can prescribe medicine and actually listens to you. Fire as many medical professionals as you need to get the care you deserve. (When I suggested to my first doctor that I wanted to come off Lexapro because I’d gained weight on it she asked me to list what I’d eaten the day before just to see if it was diet related, and when I begrudgingly told her, oatmeal, a salad, and a lentil bowl, she said “Okay, but did you measure the salad dressing? A teaspoon is plenty. Are you eating more than a teaspoon of salad dressing?” To which I responded, “What the fuck is this, the 1950s?” And never went back to her office again).
If medication is where you ultimately end up, don’t be afraid to try out a couple of options until you find the one that works best for you and your body. It’s tough to start and stop these medications, but it’s worth a few uncomfortable weeks of adjustment to find what’s long-term going to be best for you.
Stop freely letting other people who have never experienced your particular kind of mental health disorder give you advice on how to manage your mental health. Seriously, just tell them to shut up.
If you can afford it, pairing medication with therapy really helps you get the most out of medication.
If you don’t have clinical anxiety:
Please for the love of god stop telling people who do have clinical anxiety that you’re skeptical of medication. Just keep that actively harmful thought to yourself, buddy!
While you’re at it, just generally stop making suggestions and recommendations for curing anxiety. Stop telling us you were stressed about something and then did box breathing and then you were fine and why don’t we just do more box breathing? Remember: Soothing techniques are always welcome. Panacea cures are not.
If you can recall ever making someone feel bad about taking medication or having any kind of mental health disorder, text them RIGHT NOW and say you’re dumb and you’re sorry for being so mean and stupid and that you’re going to do better.
Try out this phrase the next time someone shares something about their mental health with you, “Shit, that sounds really hard. What’s that like for you?” And then shut your stupid trap and just listen without offering ANY unsolicited advice.
If someone DOES ask you for advice, might I recommend the phrase, “I’m so glad you’re talking to me about this because I’m really invested in your health. I also don’t have a lot of experience with [insert health disorder here] so I probably shouldn’t be offering advice. But I can DEFINITELY offer lots of support.”
And lastly, if you want to chat with me more about my experience with anxiety, which is really all I can offer, absolutely reach out.
I think your analogy to Type 1 Diabetes is spot on. A broken leg has an “end date” and you move on. I think many, many people have a level of anxiety that is clinical Anxiety and they are misdiagnosed or never diagnosed because it causes other symptoms that hide the root problem of Anxiety. Hope your journey helps others, keep exploring this subject, it’s important.
Thanks for sharing this Anja! I definitely relate to a lot of your experiences. I've had symptoms resembling generalized anxiety and OCD since childhood. I had pee anxiety where I always went to the bathroom during recesses (this is like in first grade) because I was terrified of having to pee during class. I've ruined roommate relationships with my extreme need for silence at bedtime. Anyway, solidarity from someone who is probably also "Type I"—some combo of genetics and early childhood stuff means my brain probably just has a different baseline, though with age and learning about it I've gotten better at managing. I'm glad the Zoloft is helping! And if you ever wanna talk I'm here!