Here are some things I reminiscence about; days on the beach in uni, the times when I could drink my bodyweight in spirits and not have to spend the next 3 days recovering, when I was fit enough to run 5k without too much trouble (yes I’m lazy), my friends’ beautiful wedding days, Irish dancing in school, and hours spent drinking tea with my flatmates. I also reminisce about a time when I could go to the Post Office unaccompanied, or to the pub without tranquilizers, or into a supermarket without an intense feeling of dread and probably a panic attack in aisle 3.
When I first started suffering with anxiety in a serious ‘mess your life up’ kind of way, I was terrified of the word ‘Anxiety’. It was everything I was feeling and everything I was scared of and it was swallowing me. The more I learnt about it and the more informed I was the less scary that word became. Now I know a LOT about the subject and the word doesn’t scare me anymore and I don’t avoid it like I used to. Avoiding; that’s the whole reason I’m in this mess! These days, the word ‘Agoraphobia’ scares the shit out of me instead. I am dealing with anxiety and I have been managing it (to various success) for the past 4 and half ish years. But agoraphobia is something I’m not dealing with; it’s usually winning and that terrifies me. So I don’t talk about it, even though it’s a huge part of my anxiety at the moment. I didn’t even like typing the title, not least because it’s a bitch to spell right, but there’s only so long you can keep up the ‘everything’s fiiiiiine’ façade. Panic attacks and agoraphobia have ganged up on me. Panic attacks are ‘familiar’; they’re common language, we’re aware of them, they’re something that Zoella and Ellie Goulding have. It’s common to read articles about them on Buzzfeed, Debrief, Stylist, The Pool, or in Glamour or Cosmo. Agoraphobia however is not so common. No one casually drops into conversation that they can’t go into town anymore and they’ve decided the life of a hermit is ultimately easier. It’s not a very attractive subject. The only representations of agoraphobia I’d seen growing up were the character on Shameless who’s trapped in her own house, and Raj’s girlfriend on the Big Bang Theory that always climbs out of windows … no wonder I didn’t want to be associated with that! Agoraphobia has proved to be very debilitating and isn’t something that I’ve properly written about before, but as I aim to practice what I preach; that nobody should be ashamed of their mental health, this is me attempting to do that.
Here’s the NHS definition of agoraphobia:
Agoraphobia is a fear of being in situations where escape might be difficult or that help wouldn’t be available if things go wrong.
Many people assume agoraphobia is simply a fear of open spaces, but it’s actually a more complex condition. Someone with agoraphobia may be scared of:
- travelling on public transport
- visiting a shopping centre
- leaving home
If someone with agoraphobia finds themselves in a stressful situation, they’ll usually experience the symptoms of a panic attack, such as:
- rapid heartbeat
- rapid breathing (hyperventilating)
- feeling hot and sweaty
- feeling sick
They’ll avoid situations that cause anxiety and may only leave the house with a friend or partner. They’ll order groceries online rather than going to the supermarket. This change in behaviour is known as avoidance.
That last paragraph sounds pretty familiar, last year I struck up a pretty lucrative (for them) relationship with Sainsburys.com. I used to think, probably like many others, that agoraphobia just meant you couldn’t leave the house or that you were scared of crowds and that was all there was to it. Turns out it’s much more complicated than that and I think I’ve been dealing with aspects of agoraphobia for a long time – well before a diagnosed anxiety disorder cross my path. I remember going to London to visit my sister not long before my anxiety first struck, and to cut a long story short I was waiting to meet her right in the centre of the city and my phone battery was about to die – never a fun situation. I had no clue about London and was terrified that I wouldn’t be able to find her. When she did find me I was so worked up that all I wanted to do was go home. I’d never felt such a strong urge to be at home. I remember saying “I need to get on a train RIGHT NOW. I need to go HOME”, pacing around like my feet were on fire, and her looking at me like I was being very odd (I was). Eventually I calmed down and didn’t leave. But that panic and overwhelming sense of needing to go home; I think that was a precursor to the anxiety meltdown that was going to happen a few months later. I’ve also had a complicated relationship to ‘things with nothing underneath them’ for a long time, years before any diagnosis. Bridges, exposed stairways, being high up in a building… these are all a no. These are also very common symptoms of agoraphobia due to the feeling of being ‘trapped’. When I look back the signs are there; I just didn’t have the knowledge to equate them with an anxiety disorder. A complete lack of education about mental health left me thinking these were just ‘weird things’ that I did and thought. If I’d had better / ANY knowledge about anxiety then maybe things wouldn’t have got so out of hand, but that’s a discussion for another time.
Anxiety UK also has a good definition:
Agoraphobia is a very complex phobia usually manifesting itself as a collection of inter-linked conditions.
For example, many agoraphobics also fear being left alone (monophobia), dislike being in any situation where they feel trapped (exhibiting claustrophobia type tendencies) and fear travelling away from their ‘safe’ place, usually the home. Some agoraphobics find they can travel more easily if they have a trusted friend or family member accompanying them, however this can quickly lead to dependency on their carer.
The severity of agoraphobia varies enormously between sufferers from those who are housebound, even room-bound, to those who can travel specific distances within a defined boundary. It is not a fear of open spaces as many people think.
When I first had a panic attack, that very quickly led to generalised anxiety, I would shake all day and hardly be able to move around the house because I was terrified of doing ANYTHING, and I absolutely hated being left alone. I also did everything else in these descriptions but I was absolutely determined not to ‘be agoraphobic’ and I remember forcing myself to go outside. My flat at the time was in the middle of a town so I walked up the road, down the next street and in a small circle back to my flat. I made myself do that again and again. Then walking to the shops, and backwards and forwards to the laundrette. I dreaded doing it and hated every second of it; shaking and convinced I was about to collapse the entire time, a constant stream of thoughts saying “you shouldn’t do this, go home RIGHT NOW”. But I did it, and I was able to leave the house again. I didn’t enjoy it, but I kept going and got to the point where I could walk around the shops, buy things and not hate EVERY second. It wasn’t easy but I did it. Christmas shopping that year was personal torture, I hope everyone knew the effort that went into buying those presents!!
In those first couple of months I really thought “I will be stuck inside these four walls forever, this is IT” and I thought I have two choices – get back outside into the world or well, the other wasn’t really an option. From then on agoraphobia didn’t really affect me because I was the same ridiculous level of anxious everywhere. I took all the anxiety with me, wherever I went and whoever I was with, pretty much. Going anywhere wasn’t appealing but I did. I just went and felt as awful at one place as I felt at any other. So technically I have got over agoraphobia once before. It’s reared its ugly head again and gotten bad over the last year because I started getting panic attacks. Their unpredictability, their suddenness and the fact that they’re really really gross has caused agoraphobia; they’re enough to frighten anyone into withdrawing from the world, trust me.
I’ve thought about the best way to describe it other than ‘even just the thought of leaving my house terrifies me’… because it’s not really that simple. And it’s not very often terrifying, more like a low level constant hum of ‘don’t go there, don’t do that, home is safe’. There are lots of dependent factors; where you’re going, who you’re going with, what you’re doing, how long you’ll be away etc etc. The best analogy I’ve come up with is to imagine you’re physically attached to your house (or ‘safe zone’) with some kind of elastic band… and the further you go away from the house, the more it stretches and the longer you’re away the more it’s stretched, and it’s… unpleasant. And no, I don’t really know what I’m afraid of. I think, like the NHS suggests, I’m afraid of something going wrong; of being out of control. A panic attack by yourself at home is disgusting but manageable, a panic attack in public surrounded by people whilst trying to look like you don’t feel like you’re dying is not so manageable. It’s logical that my brain says na, let’s not do that. It’s just like when you’re feeling ill and all you want is to be at home in your own bed with your own things. My version of that has just got a bit… extreme, but it’s not completely ‘mad’. It’s logical. Something really crap happened that made you feel awful, obviously your brain and body try and protect you from that happening again.
The ache for home lives in all of us, the safe place where we can go as we are and not be questioned. – Maya Angelou
When I’m feeling ‘better’ and more in control of things, my agoraphobia will mean avoiding things like long (currently any) train journeys, large crowds, places that I feel like I am trapped, such as cinemas. At less better times, it means avoiding shops of almost any kind, and avoiding going out in most senses of the word. Something like a gig or a festival or even a long walk is a nope. Sometimes buying milk seems like an impossibility. Imagine how great that makes you feel about yourself…! There are lots of dependent factors, like if I know the layout of a place then it’s much easier because I know how to get out if I need to. If I can have my car close to it then that’s also a big help. When I’m not near home then I have a few places that seem ‘safe’; for example, places that I’m very familiar with and have spent a lot of time in, or feel very comfortable in such as my relative’s houses. So even if I’m a long way from home, if I have a family member or close friends house as a ‘base’ then I will usually be okay because I feel like I could be my weird self and feel safe there. I have been avoiding the cinema for months, I could count the number of times I’ve been out to eat in the past year on one hand, I’ve been giving most pubs a wide berth – unless full of diazepam or alcohol, and Tesco is my fucking nemesis. BUT, I’ve also been to plays, weddings, meals, gigs, pubs, BBQ’s, family do’s, community events, parties, a hen do and visited people way across the country. SO, as much as agoraphobia makes these things difficult and sometimes horribly unpleasant, they are achievable. Don’t assume I can’t do something, it’s not at all black and white! But you can probably safely assume it will be difficult!
I have a complex system of behaviours that I’ve developed to allow me to do things. I have certain things that I do that may seem, from the outside, ridiculous. They are avoidance strategies and safety behaviours. I am also acutely aware that they are ridiculous. They allow me to do certain things, in certain places, at certain times, with certain people, but ultimately, they just serve the avoidance. I try to weigh it up – is it better to have a few crutches, a few safety behaviours, and still manage to do things? I think so. Ultimately I’d like to be able to do EVERYTHING! I actually dream of someone using the word ‘spontaneous’ to describe me – how sad is that?!
Leading up to October 2015 I had barely left the house in around 5 months. Because the panic attacks were/are so debilitating I don’t want to have one when I’m out doing something, so I started to avoid certain things. This list of things/places to avoid grew, and in turn this shrunk the places I went and the things I did. My world had got smaller and smaller until I was basically in a prison of my own creation. It was a bad time.
To give you a little bit of an idea of the kind of headspace that agoraphobia puts you in, I wrote this at the time; “I am frustrated, bored, embarrassed, ashamed and really tired of the whole thing. I’m 26 and I rely on my mum probably more than I did when I was 14. In my eyes, and many other people’s, it’s pathetic. I feel like a huge let down, like a disappointment.”
In all honestly, I think depression comes hand in hand with agoraphobia, understandably.
I felt like it was ‘perhaps my lowest point yet’, but that wasn’t true (there were shitter times to come, lols…) and as Ronan Keating would say “life is rollercoaster” so I try not to measure the bests and worsts. That was 9 months ago (jeez) and I have definitely made a lot of progress and done lots of things I thought I couldn’t, but there’s a long way to go and I just wanted to show how absolutely shit it can make your life. (Also must just shout out the absolute bosses who visited me / kept in touch during that particularly shitty time). This could happen to anyone, I couldn’t have ever imagined it happening to me, but it did. Another thing to consider is how quickly it can develop. Panic attacks can spiral into a panic disorder very quickly, and from there it’s logical that you want to avoid them happening in public, so you begin to avoid… It’s really important to catch your avoidance before it escalates (she says).
In the UK, up to 2 people in 100 have panic disorder. It’s thought around a third of them will go on to develop agoraphobia. This rang true for me as it was the panic attacks that brought on the agoraphobia. It’s more common than you might think, probably because there’s a lot of shame and stigma surrounding it. As vocal as I am about my mental health, this is the first time I’ve really properly spoken or written about it. It’s also twice as common in women as men, and usually starts between the ages of 18 and 35, FYI. Also FYI, I personally know at least 2 other people who are in similar situations to myself, it can be surprisingly easy to disguise.
Agoraphobia is complicated. It has many parts to it, and people can manage it very differently as it’s a very personal thing. Something that may seem impossible for one person suffering from agoraphobia will be very easy for another person suffering the ‘same’ condition. Mine is definitely complicated. Bridges, crowds, trains, anywhere enclosed with no exits, supermarkets. I’m currently having a dilemma over getting new passport photos because of the location of the photo booths. I find it easier to go out in the rain or the dark than the daytime / sunshine – that’s a nice little weird one! I am not scared of people; I actually love meeting new people, and I am not afraid of crowds of people per say. I love going out to places; I love going to gigs, and shopping, and to plays, and National Trust gardens, and the Zoo, and the library, and on walks. But agoraphobia is all part of the ‘anxiety trick’, and it convinces you that all of those things are scary and sometimes downright impossible and you just shouldn’t bother because it’ll end badly and it’s easier to stay at home. It’s a nasty little liar.
I can’t really touch on the things that will ‘cure’ it, or ‘fix’ it, because I’m still searching for those myself! But If you read any of the links I’ve put below you’ll see that talking therapy, CBT, and medication – or a combination of these things – are the standard treatments. CBT has a very good track record for helping with agoraphobia, and it IS very treatable. I’ve made a lot of progress using CBT, gradual exposure and relaxation techniques. One thing I’ve definitely found very useful is the Claire Weekes books on anxiety and panic. I’ve linked to them before and, although they’re dated, her advice stands the test of time. Try this book. I would love to say that as least I’ve spent my time at home being productive, and have learnt 2 languages, how to knit and how to make a soufflé… But I haven’t, I’m not hanging around here for the lols, I have genuinely awful days where I struggle to function let alone be productive! I’m sorry to say that I’ve been guilty of just kind of waiting around, hoping it’ll magically disappear and I’ll just somehow ‘feel better’ and be more able to do things. I know that this is bollocks and will not happen, despite being the pipedream of every anxious / panicky / agoraphobic person in the world. Sadly, some bloody hard work will have to go into dealing with this.
I’m obviously not proud of the fact that sometimes I struggle to do things, even the most basic of things like food shopping or going to the hairdressers. You do feel embarrassed that you can’t do things. But I’m a hypocrite if I don’t treat this for what it is – just another part of my anxiety. It’s a disorder. It’s my brain going wrong and my body acting on its instructions. They think that they’re protecting me; they’ve seriously got the wrong end of the stick, bless them, but they’re trying. Agoraphobia is a part of my anxiety and like every other part I will learn to deal with it. I’ve read that it is one of the most treatable mental health conditions – so that’s encouraging!
Anxiety likes to keep you within your comfort zones. That’s one of its main aims. As more things scare you it makes your world smaller and smaller, all in an attempt to keep you safe. If I did what my anxiety wanted me to I don’t think I would ever leave the house. I may have even retreated to just my bedroom, and have camped out there for the past 4 and half years. But that’s not living, that’s existing, and that’s not what I plan on doing. It’s not easy, it’s not fun, it’s an absolute fuckload of effort and willpower, but it will be absolutely worth it. (Someone repeat this back to me on a regular basis please).
If you have any questions, please feel free to ask! No question too odd or seemingly stupid!
Here’s me kicking some agoraphobia / anxiety ass to be at my friend’s weddings this summer.
P.S. Massive huge enormous thank you to my family and friends for their unwavering patience and support.
If you’d like to read a bit more about it then here are some useful links
http://www.overcoming.co.uk/single.htm?ipg=4816 (the book is good too)
*Disclaimer* As I’ve said before, I am not after pity or attention or whatever else, I am trying to be honest in an attempt to highlight something that is very debilitating and also a lot more common than people realise. If one person gets a tiny bit of comfort from this then it’s absolutely worth it. Hiding my mental illness has never ever helped, and talking about it definitely has, so humour me!