It’s some time early in the year 2000 and I am sitting in the foetal position with my feet on the railing at the front of a rickety bus. My recently exposed immense aversion to public transportation is pumping panic through every cell of my little body. At this point in my life, I was well aware that I could not do buses but I was yet to discover the name for my plight; agoraphobia.
The bus is filled to the gunnels with late teen/early 20 somethings on route to our 1st year Bachelor of Design camp. We are heading 2 hours out of Auckland down the Waikato coast to stay on a picturesque Marae by a pretty, sleepy river. I have been dreading this trip for weeks but in spite of every protestation, each attempt to make this trip easier on myself has been rebuffed. I have been told I have to endure the bus ride and subsequent week of communal living misery or face failing my whole years course. As a naive 17 year old I had no idea that what I was experiencing was a bonifide mental illness. If had known then what I know now I would have been able to present a variety of Doctor’s notes to allow me exemption from the trip on the grounds of ill-health or at least been strong willed and able minded enough to find my own transport and thus lessen my panic. But in those early autumnal days of the new millennium, I had no idea what I faced and no help was on hand.
I sat in the front seat, as close to the door as I could manage without actually sitting on the steps in the door way (I wasn’t allowed). I put my feet up on the bar in front wrapped my arms around my legs and stayed in that exact position for 2 hours. One small break at a road-stop cafe where I left the bus to spent an exorbitant amount of time in the bathroom trying to empty any and every part of my body that things could possibly come out of. I recall the outfit I chose for the occasion, a black top and a long dark velvet skirt which masked the crude adult nappy I had crafted for myself out of night time sanitary pads. You know the ones that feel like they are a small mattress thick enough to craft a vessel and set sail a pair of mice from England to France without the danger of sinking. During our trip new friends would kindly come and sit with me, each trying to take my mind off my abject terror. Unfortunately for them, I was almost completely unable to speak and only managed a mumbled a sentence or two until I was safe at the other end. The panic attack did not swell then subside as my doctors would later explain it should. It stayed and continued to cause me pain for the full length of the bus journey. My only solace was getting off at the other end and being handed a large glass of wine (coz art school, yay).
Agoraphobia is an over complex disorder that requires a long winded explanation for those who are unaware. One sentence alone just won’t do. So often, I find people already have a definition in mind which is sometimes just a bit wrong but mostly totally incorrect. For example “So you’re afraid of crowds?” or “Oh I know! Agoraphobia is when you’re afraid of open spaces right? Like fields?”. Yes. You’re so right. I’m afraid of open fields and it causes me INTENSE problems in my daily life as anything other than a free range farm animal.
It has taken me many years and lots of counselling and therapy to truly understand exactly what I am afraid of. For more years than I would like to admit it made no sense at all, even to me. I didn’t like taking the bus or being driven places by my friends which made me feel like the biggest jerk in the house when I said I’d rather walk than get a ride. I would often just say I was unable to attend parties/openings/shows because the idea of taking a bus to some far away suburb filled me with dread.
In this post I am going to try explain what agoraphobia is to me. Important disclaimer! Conditions such as phobias are experienced differently by each individual. My experience may be totally different to someone else who also has diagnosed agoraphobia. Titles and labels lump us together roughly but each of our experiences will differ. Every individual has endured life experiences, suffered fears, nightmares and genetics distinctions that create a specific wooden bundle inside us and make up what scares the bejeezus out of us. For example a classic agoraphobic issue is crowded streets. These have never caused me issues as long as I am free to get away if I need to and as long as no one is looking at me. A music festival might seem like the worst place in the world to be as a person who suffers with agoraphobia but when I was younger I loved going to festivals. The idea that I was free to come and go whenever I liked, no one was watching me or caring what I was doing meant I could not have felt more free. Not to mention that everyone is totally drunk off their faces so no one cares what weird things you might be up to.
Agoraphobia for me is a fear of losing control. I am, in essence a psycho control freak. Being unable to make a choice about my physical placement or perceived personal safety gives me enormous panic attacks. A lot of these situations are physical, such as; trains, buses, cars etc. The real emotional crux of the issue is the social element of a space, other people on the train freak me out. If I was in a world only inhabited by me I would’t have agoraphobia. I would also be bored out of my mind and lonely as fuck so, I don’t wish for that. It means that total hermit-esk solitude is not the answer (though I am very partial to some quiet alone time at least a few times a week). I am social in my own way, with my close circle of friends and loved ones. I don’t hate big cities, in fact the bigger the city the better, because if I am walking down a street in London, no one gives a crap what I’m doing and no one is looking at me. In Auckland, however I would very likely see people I know or someone who knows someone. People freak me out because I worry about their judgments of me and my behaviour.
The other major part of my phobia is fearing for my inability to control myself physical. I worry almost all the time that my body is going off on it’s own merry rant without my say so. I fear I will throw up, need to pee/have excessive diarrhea, start sweating etc. at inopportune moments and the fear of those things frequently causes them to happen. Partially because that is how the psychological/physical link works and also because sods law is never fair.
What I need is the choice and authority over my own movements. I need time and space to plan for my own predilections. If I know what the over all plan is I can craft a management scheme to help me cope. That scheme may be just in my mind (escape routes, knowing the area, self talk etc) or physical (what clothing is most appropriate, supplies, medication etc). I don’t cope well when plans change at the last minute and I’m terrible with spontaneous plans, much to my own misery. I wish I were able to just hop in a car and go out to the beach or make a plan to see someone in 10 minutes but the reality is that even if I personally want to, my phobia and my body will have something to say about it. Most often it’s something like “Fuck you Lucy. Thought you could get away with being spontaneous? Not a chance. Not only will I make your whole body go into physical shut down, fight or flight, adrenalin over-load but I will also mess up your digestive system make your mouth dry, your bowels loose and fill you with nausea the like the world hath never seen. You want to go to the beach? Nope. You’re going to pay with vomiting, and diarrhoea! Ahahahahahaha (*evil laughter ensues).”
Welcome to the internal monologue of my brain.
Planning is everything when you have agoraphobia.
In these situations my body reacts without my say so. My mind tells my body I have been kidnapped. I realise that sounds like a total over exaggeration. To clarify I don’t actually think I have been kidnapped but my body reacts as though I were. If I am consulted on changes or plans, if someone asks me what I think or if it’s ok with me then my logic, my brain will most likely be able to calm my anxiety. It is a continuous war between my over excitable anxiety and my logical brain. After many years of work I can now tell if the fear is real or caused by my over active anxieties. Sadly, knowing when it is anxiety is only a part of the battle. Once I can identify the anxiety I then need to manage it, like a troublesome sugar-addled toddler. Even in seemingly simple situations such as taking a phone call privately or where I will be sleeping and near whom, if I don’t get a say, my body freaks out and acts like I had been booted out on the snowy ground with nothing but a pair of flip-flops and a small polyester lap rug to save me from the cruel cold world. Think mustering rabid cats and you’re somewhere along the right track.
Public transport challenges my authority and safety. I don’t get a say in the minutia of the journey. During the years I lived in London I took the tube every day. Some days I would have no issue and some days I would have to get off at every single stop to try and calm myself down. It has nothing to do with worrying the train will crash or the number of people on board. It’s much less obvious that the physical safety required to keep me alive. It’s more the social space I am in and how easy it would be to escape if I need/wanted to. As the doors of the tube closed, you have no choice about when you can get out, you are trapped until the next station is reached. Even if it is only 30 seconds panic may still take control like a really terrible transformer no one wanted. As long as I have the ability to leave, like in a cinema then I should be fine but take away that faculty and I am like a caged badger. No happy at all.
Toilets are my safe place, because of my troublesome guts but also because they are the only place in society that I have every right to be alone without any interference. In New Zealand we don’t share toilets stalls and it is a place where almost no one will fill your persona space. The locks keep people out and me inside and alone, therefore safe.
It is a complicated world I exist in but one I am slowly mastering. The daily battle is never over and the choices I need to make about what I am able and unable to do never get easier. With support, empathy, management, great therapists, medication and a very very patient boyfriend, I feel like I am somewhat in control. Well maybe 80% of the time anyway.