So, let’s talk about agoraphobia, shall we?

by sketchyfeminist

According to my dashboard, I first wrote the following about a year ago. I remember considering posting it at the time, before deciding that I wanted to sit on it for a while. (It ended up being a longer while than I had planned.) The content is no longer a reflection of my current mental state. However, you could think of it as a kind of snapshot of a way I felt once, and I am choosing to share it now because as far as I know, agoraphobia in general is not something well understood by those who do not suffer from it. (I knew pretty much zilch about it before I had it; TV did not prepare me.) So, since there is an off chance that sharing this will do someone somewhere some good:

Let’s talk about agoraphobia.

Because it doesn’t get talked about all that much, outside of agoraphobia chat rooms and TV shows about eccentric goofball geniuses. Isn’t agoraphobia wacky?

This post is not a plea for help, a request for advice, or an invitation to diagnosis. Please, please, please, do not offer me any of these things. You are not my therapist. Even if you are a therapist, please do not offer these things. This post, though it pulls from my own experience, is actually meant as more of a PSA (if something of a whiny one), simply because there isn’t that much public, open discussion of agoraphobia. Some other disorders (like depression and PTSD) are getting de-stigmatized more and more in the media, and that’s great. However, I feel like there’s still a very real stigma attached to agoraphobia that people don’t seem to be addressing. There’s also a kind of mystification/exoticization that seems to surround it, even though it’s actually a pretty common disorder as disorders go.

Trigger warning for the obvious.

So. As I write this, I am not at all sure I am going to post it. My own personal fucked-up cocktail of panic disorder + depression = agoraphobia (or is that panic disorder + agoraphobia = depression? I don’t even know anymore) is highly personal and highly private IN SPITE OF the fact that I am open with friends and loved ones — and even some colleagues — about it.

I’m open about it in a lot of situations because I feel like it takes some of the pressure off. Not all of the pressure, not most of the pressure, but some. Like, if I tell you about it, then maybe I won’t have to confess myself in the middle of a panic attack later, just to explain why I’m twitching and tugging at my shirt collar while I fold my left ear closed and dart my gaze around the restaurant like a trapped animal, while taking long, shallow breaths to counts of ten because I feel like the oxygen isn’t reaching me. Uh . . . I don’t know why I do the ear thing. I think it’s one of my more unique tics. So, if I tell you about these tics in advance, and you act even a tiny bit sympathetic or understanding, then when/if they do crop up, I feel a tiny bit less embarrassed. Also, because I know that I will feel a tiny bit less embarrassed if/when I have a panic attack, I am less likely to have one. So, my confessional tendencies when it comes to this issue have less to do with me inherently trusting you, my dear hypothetical dinner companion, and more to do with the fact that that’s just a line of defense for me. If I tell you, it loosens the valve just a little. This has also led to me blurting out the nature of my condition in wildly inappropriate circumstances.

So, to you, my hypothetically not-agoraphobic reader, let me share a few factoids (or at least impressions) from the perspective of those of us who have this disorder. And by “us” I really mean me (because lived experience, yadda yadda. You know the drill):

#1: We know.

Offering up consistent support to someone with agoraphobia/depression is exhausting. Like, it just has to be exhausting. Whether you’re helping someone as they struggle to regain their mobility and independence, watching them steadily worsen, or even just listening to their problems when they need an understanding ear, it has to be exhausting. Especially if the condition is long-term. (Because it often is.) And the thing is: we know. We know how much we cost others in terms of — let’s call it — maintenance and upkeep. We know. We know how tired you are. We know how annoying our condition makes us. We know it’s frustrating that one day we can be fine, and the next, we can’t cross the street, even though nothing visible or physical impedes us.

If you’re tired of dealing with it, imagine how we feel.*

It’s like that old jokey insult that goes, “I feel sorry for her. She has to live with herself.” We’re exhausted, living with ourselves. If we could take a break from ourselves the way you can, believe me, we would. And we live with ourselves, within ourselves, trapped in our own bodies and our own homes, a little bit more than a lot of other people do, people who still lead independent lives and who can still go to their favorite coffee shop or restaurant or book store unescorted. (EDITED TO ADD: And of course I know there are all kinds of people who have limited mobility and independence for all kinds of reasons, and none of this is meant to diminish their/your experiences.) People who can drive themselves to work. And we’re so fucking jealous, you don’t know. At least I am. I am jealous of people who can fucking drive themselves to work. We live with oursleves, and we’re exhausted. We’re just so sick of it.

#2: We don’t know.

We don’t know what’s causing it. I mean, in one sense, we do. We’ve been to therapy, we’ve read the books, we’ve gotten the T-shirt. We know that fear is causing it, and that that fear somehow has an origin (in trauma or in chemical imbalance or what have you) but at the same time, we have no idea what’s causing it. Not in a useful way. Not in an I-know-how-to-stop-it kind of way. Because if we knew how to cut this fear off at the root, how to squelch it, how to kill it, how to excise this thing that’s hurting us, and you, don’t you think that we would? We’d crawl through broken glass for this. “Exposure therapy,” the preferred course of treatment for our disorder, unfortunately requires that we do the one thing we have forgotten how to do. The one thing we can’t just make ourselves do, even though we don’t understand why. It’s kind of like saying, “The only way for you to stop having this problem is for you to stop having this problem, or at least to believe that you no longer have this problem for long enough to convince your brain and your body into also believing you no longer have this problem.” True enough as it goes, but FRUSTRATING AS HELL. Facing your fear is a great philosophy both in principle and in practice, but it is a different order of magnitude when you have a fear disorder.

#3: We know it doesn’t make sense.

We know. We know it doesn’t make sense. We know that our condition, from the outside, seems strange and arbitrary and eccentric, even, an invention of fancy. We know that, logically, it makes no sense at all.

And that kills us.

You think (or maybe we just think you think, because our self esteem is shattered), “Why doesn’t she just get up and [X].” Go to work. Walk the dog. Get the mail. (There were days at a time when I couldn’t get the mail. There were days I couldn’t leave the couch.)

But our secret that isn’t actually a secret? We are thinking the exact. Same. Thing. We think, “Why can’t I just get up and get the mail? I did it yesterday.” Or, “I used to take long walks to the beach as a kid. Why can’t I just walk around the block?” Or, “Why can’t I just get up, walk to the bus stop, and ride the bus? I rode the same bus to work for years with no problem!”

But none of that matters. Logic, unfortunately for those of us who like to think we are logical beings and whose logic has just failed us in a massive, epic way, is not a very useful weapon against agoraphobia. Because it doesn’t stop the physical symptoms of our fear, which have worn deep grooves into our bodies and our psyches with repeated practice: the heart palpitations, the feeling of suffocation, the “knife in the heart,” the fear-gut feeling of absolute, abysmal, wrongness. Some sufferers hallucinate. I don’t hallucinate personally, but I do catch glimpses of rapid shadows twisting just out of sight in the corners of my vision. This is a very common side effect of a panic attack that has to do with eyestrain. So is the vertigo. Go on, face your fear. Face your fear while there’s an elephant on your chest and your throat is tight and you feel with 100% bone-deep certainty that you won’t be able to take your next breath — even though there’s no reason to feel that way. No ‘real’ reason. Just the fear, just the pumping chemicals, just a trick of the body or the brain making you feel like prey being stared down by a predator. For hours on end. I used to have those symptoms for hours on end. Four hours a day, twice a day, every day. For months. It is physically exhausting to feel that scared for that long. Time-consuming, too.

My symptoms are different now than they used to be. I’ve made a lot of progress. I’ve gotten a lot “better.” But I haven’t gotten better. I’m not recovered. I’ve just gotten to a point where my symptoms are “more manageable” than they used to be. Which is useful in a lot of ways, but can sometimes lull me into a false sense of security by making me forget how much I need to keep working on getting better. And it is really hard work. Exhausting work. And it’s not like I don’t have other work to do.

The thing is, we do face our fear. Sometimes in big ways, sometimes in small, incremental ways. We do try. We’re trying. Sometimes you’ll even see progress! And sometimes you won’t.

# 4. Recovery can be slow, and we are very impatient.

We are at least as sick of this as you are, and every setback feels like failure, and every failure feels personal. Because this is personal. It’s inside of us, and in our own self-image, we can no longer separate ourselves from the disease that’s hurting us. And you.

And by we I mean me.

* “God, I hate this. This tone in my voice? I dislike it more than you do, and I’m closer to it!” — Anya on Buffy the Vampire Slayer, 6.04, “Flooded”