Agoraphobia

I’ve been trying to make this into a comic for weeks now, or in the background for years, but I guess it’s one of those rare times where adding images to words just makes it more unnecessarily complicated. Let’s talk about agoraphobia (or I guess, I’ll type about it and maybe you’ll reply).

People who’ve never had a panic attack or who haven’t had clinical levels of anxiety seem to think it’s a synonym for ‘being worried’. Anxiety is a much more physical experience: your heart races so hard you can’t walk in a straight line, your blood runs cold (feeling it freeze from my chest to my limbs to my head), all your muscles spasm and cramp. Hyperventilation and literally forgetting how to breath set in at a certain point. There’s a feeling in your stomach like it’s being pulled up through your ribs. You grit your teeth, or they chatter. Your brain races with suggestions for how things might go wrong and convinces you that, this time, you really are dying. Panic attacks can hit suddenly, or build up for days. They typically last for around 15 minutes, more or less. And then you cry a lot to get the cortisol out.

With PTSD a whole bunch of new symptoms wait to get you, too. Flashbacks where you can’t remember what day it is, what month it is, what year it actually is, what you were doing yesterday. Reliving the same thought processes you had when It happened as if it really is happening again this time. There’s no ‘this is just a flashback, it’s not real’. It’s ‘real again’ in your head and body every single time. Re-enacting how you survived last time and hoping it works this time, but knowing, cold hard immediate reality knowing, that you might die this time. Nightmares where you wake up shaking. Normal days where you wake up shaking.

You consciously or unconsciously start cutting out the things that cause these symptoms, and your life gets smaller. They’re unbearable feelings. So, taking whatever steps you can to avoid them feels reasonable - better than reasonable, it feels good. It feels like you’re taking an action against this huge monster, 10 times your size, and taking a step forward.

So you mute words on Twitter. You wash your plates more. You check things, until you’re crying on the kitchen floor from exhaustion. At least you’ll feel relieved when you can go to bed after, sure that your family’s safe for tonight. You stop eating foods, you stop taking medication, you stop going places. They feel like small things until the boundaries between ‘safe’ and ‘unsafe’ grow more and more and eventually you’re being ruled by your stupid little rituals and limits, hoping they’ll keep you calm. Calm becomes something you grip on to.

People don’t seem to know, mostly, what agoraphobia is either. I’ve heard people assume that it’s always a phobia of being in busy places, or a fear of spiders, or always means you can’t leave your house at all. It’s more nuanced than that (and has nothing to do with spiders - arachnophobia). The latest International Classification of Diseases (ICD) defines agoraphobia as:

“marked and excessive fear or anxiety that occurs in response to multiple situations where escape might be difficult or help might not be available, such as using public transportation, being in crowds, being outside the home alone (e.g., in shops, theatres, standing in line). The individual is consistently anxious about these situations due to a fear of specific negative outcomes (e.g., panic attacks, other incapacitating or embarrassing physical symptoms). The situations are actively avoided, entered only under specific circumstances such as in the presence of a trusted companion, or endured with intense fear or anxiety. The symptoms persist for at least several months, and are sufficiently severe to result in significant distress or significant impairment in personal, family, social, educational, occupational, or other important areas of functioning.”

It’s not really about the external, which varies from person to person, but more about the internal and the response. For some people, the fear outside is danger from other people. For me, having other people around makes me less anxious. For some people (including me) it’s a fear of having a panic attack or health episode and not being able to get home. Feeling trapped. No immediate escape. Or the fear of having a panic attack itself. When I’m at home I can ask for help if I feel like I’m going to faint, and panic attacks end quicker when I can let it happen at home instead of supressing it in public only for it to then happen again later the same day. The agoraphobia link is the result of our fears: that in response to external places we have panic attacks, panic attack symptoms, or stay in our safety bubbles. We avoid places. The world is a map of circular safe zones and The Rest - picture Fortnite’s shrinking circle and the steady drip of damage outside of it.

Personally, I’ve been experiencing agoraphobia symptoms on and off since I was a teenager, but it’s been a range of this bad, in waves of moving boundaries and safety behaviour efficacies, since October of 2022.

When I was a teenager, I didn’t even link the feeling of ‘sickness’ I always had in shops to anxiety. I knew I got really, really physically anxious at school every single morning, but I limited that feeling to school, so I thought it was just the lights in shops that made me feel sick and dizzy. By my late teens and early 20s I could travel around freely, with the help of cough syrup or manic episodes. In 2015 I developed PTSD after a bunch of smaller triggers met a big near death experience month, which grew into having panic attacks on trains or when walking through town - but I was also having panic attacks from, you know, waking up or laying on my left side or hearing a heartbeat sound in a film. So, again, I didn’t connect it to going outside.

Then in October 2022, after a week of stress and not sleeping enough and a panic attack in Jorvik Viking Centre (that ride where you get locked into your seat and clunk past a route of grumpy figures in the dark), something broke. One more trigger gave me a 24 hour flashback. I didn’t even know that was possible before then. I still worry maybe it was medical shock - I don’t know! It might’ve been! The first time after that that I tried to go outside by myself I distinctly remember standing by the door with my shoes on and worrying ‘what if I have a flashback like that again and there’s no one there to help me?’ Bon appetit! Agoraphobia city baby.

People have all kinds of advice, and to be honest most of it revolves around just trying harder. Feel the fear and do it anyway (at least 20 times a day for the foreseeable future, where ‘feeling the fear’ means thinking you might die). Have you tried yoga? Have you tried therapy? Have you tried not being in counselling? What about mindfulness? Embrace the void! Just ask for help (and ignore how much stress you’re putting on the people you love, and how there has to, has to, be a limit point where being friends with you isn’t worth the bad days)! Cut out caffeine (I have, since 2015), cut out alcohol (since 2013), eat less sugar. Just think about yourself less.

It’s like they think I’m not very aware of the passage of time. I think about death a lot. I’m living my one life inside because I don’t want it to end early. If it was a case of not trying - see paragraph 5. I’m trying constantly. Everything I do is a fight against the thing in my brain who thinks we’re going to die any minute now.

It’s not a case of ‘not wanting’ to do things. I want to go outside and live a ‘real’ life and meet people and further my career that way and see my siblings who live in other cities and go to a bookshop so badly it tightens my chest to think about, but that doesn’t do anything. My body is trying to keep me alive. Try wanting to fight a tiger, then see if you can walk into the cage with it without your body fighting you harder. My current counsellor has a metaphor that resonates with me: for me, trying to go somewhere where I’ve had a panic attack or trying to do something that’s given me a flashback before is like paragliding for most people. The thought of walking 10 minutes away raises my heartrate.

I don’t want to feel trapped, ever. My body freaks out when it thinks I’m trapped - after taking a medicine/sitting in a cinema/being 10 minutes away from home where the only way back is to walk. It’s not a matter of wanting or trying; to my animal body it’s literally a question of life or death. Multiple times a day, every single day.

In October of this year my Mum said something that’s been sitting with me since: ‘you’ve been basing your path to success on comic conventions because that’s what was put in your head at Uni, but for you maybe your path looks different.’ It unlocked something in my head! All these paths in my head that meant I couldn’t succeed at anything until I “beat” the agoraphobia: why am I trying to walk down them anyway, despite seeing how they don’t work for me? There are other paths! So many other ways that I can still have a successful life where I’m not running up against the same walls over and over again. We’re blessed to live in a time where people can post their art online.

I’ve always really struggled with the concept of acceptance - since I was diagnosed with bipolar type 1 in 2012, sure, but even before that. Death has terrified me since I first learned about it - the big acceptance that I just can’t agree to. There’s a famous story in our family of me as a kid screaming that I wanted a pink Power Rangers bubble bath, “buy it!” I want so severely, but want doesn’t always equal a correlating result. I applied to Thought Bubble every year for half a decade, and when they accepted me this year I was very happy. That doesn’t matter in the face of PTSD with agoraphobia (and especially with a perfectly timed 22 hour ECG as a huge trigger happening exactly a month before the convention weekend, followed by an ear infection, followed by the cold I currently have which might be COVID).

I am not going to win at this game. Not now, at least, but also maybe not ever for me. But there are a million others to play!

And this isn’t giving up. I’ll keep trying various types of therapy, and I’ve finally got to the point where I can take a 2mg Diazepam if I really need it. I finally got the 24 hour ECG that was first recommended by A&E in 2015, so hopefully that’ll help. It’d be nice to know where my body’s real limits are, besides my ears. I’ll start again with little journeys outside with my sibling on good days and slowly let that become second nature again. Let myself get calmer and the checking, eating, rituals, and agoraphobia calm down too, without me fighting and pushing. I’m well aware of the line between complacency and trying, not giving up and fighting myself into the ground.

I’ll accept advice. At this point, I’ll try near anything. But please: trust that I am trying. I don’t want to live this way, and for now I’ll do what I can. It’s almost fun thinking up new paths! I’m chewing a kids Vitamin D gummy as we speak.