‘There’s no fear when i’m in my room’ – The reality of living with agoraphobia

This weekend i was asked to be part of a discussion panel on personal writings and per-zines at the Bradford Baked Zines event, ‘a week long celebration of self-publishing and DIY culture.’ It was a huge honour to be asked to participate and i was so siked to be up there sharing a platform with Rachel Kaye and Catriona Simons, both of whom are great writers and also strong and inspirational working class women too. We met up the night before at Cat’s house to chat through the areas we were individually going to cover, sharing our influences, previous projects and inevitably, when discussing personal writing, our own histories. I’ve known Rachel for five years now and we’re great friends, we even lived together for a few month’s early on which always adds that extra closeness and understanding of one another and their ways. It meant that at this point, sharing my personal secrets and feelings wasn’t so scary as she already knew them. What did occur to me though, as we were all sat round ready to ‘rehearse’ as it were that as much as i knew Cat and her work fairly well and we have a bunch of mutual friends, there were things we probably didn’t know about eachother at this stage and that now was the time to open up about them. Further to that, the following day i’d have to do that again to a room full of mostly strangers.

The title of our discussion group was ‘It’s common but we don’t talk about it.’ This title was perfect for each of us who all found reassurance in being able to speak about our lives, struggles, feelings and experiences through personal writing. Everyone has something they find difficult to talk about or something that they have to really gage the safety involved in doing so, eliminate any risks, worry about the consequences etc. These things lay below the surface but at times, we are almost forced to ‘come out’ as it were, be it to stop someone talking shit, to stand up and be counted, to help another or even, just to exist and be ourselves in the ways we need/have to be and feel safe and supported. For me, a lot of the ways i have to live my life are due to the fact i am diagnosed agoraphobic. We all have an appreciation for ‘the real’ and a determination to document reality and our true feelings. We all gravitate to others who share these things too in life and in our collective outputs also. This is definitely a main part of my motivations for both zines i edited. To stand up and be counted, have real voices heard and misconceptions quashed. In terms of mental health and the lack of openness to discuss it in society, this plays a huge part in our discussion.

The beauty of writing about your feelings, life, loves, experiences etc for a blog or zine is that you can hide behind whatever you use to do that and there’s a barrier of safety and distance between you and the potential reader, so much so that sometimes, you even forget and end up spilling things out like you would to a hidden diary. When this barrier is removed and you’re faced with talking to people directly about these things, it’s a whole different story.

One of the main areas discussed in the talk was the ability and need to have your own space to tell your truth, to speak however you want to speak and about topics of your choice. For me personally, i described the feeling of almost losing myself when setting up the business for the first few years, pulling all my strength into that project left me feeling less of my usual self, almost drained somehow. Cat is a mother of three children and added that she feels similar, especially as she has twins and the following year gave birth again, having 3 very small children to look after at once. Personal writing has been a way for the both of us to bring ourselves back, to give ourselves time to feel again and the process itself can almost act as a kind of therapy or provide moments of realisation and clarity. I’d not read any of my writing aloud or participated in a panel such as this for 3 years and through working on ‘Poor Lass’ and getting back into the process, the scene etc again, i felt able to go to the event and be a part of the discussion and it felt great.

All three of us described dark places where some of our motivations for writing have come from and how through writing about these experiences we have managed to almost reclaim them as a way to use the survival as a positive and an outstretched hand to others out there looking for community, shared experience and strength in numbers. We could all remember zines we found that helped us though hard times, stories that made us feel less alone and gave us courage to continue on and battle as well as always being reminded to stay positive. The first zine i ever put out was the collective zine ‘The World’s A Mess and Yr My Only Cure,’ the name taken from the Le Tigre song ‘Eau D’Bedroom Dancing.’ It was my way of compiling lots of people’s inspirations and motivations into one place, a book of positivity, celebration, thanks and optimism. The premise was that i emailed a bunch of people to either interview or ask them to submit that i admired or took influence from and asked them to talk about their own influences and what motivated them to do what they did already and what continues to motivate them now. This was a hugely positive turning point for me and helped me understand how important and vital being surrounded by positive people, influences and also pushing yourself while also still feeling safe and reassured. It led me to really appreciate the need for self care and safe space.

Something that came out of this for me, was a realisation of how much influence my being agoraphobic has had on my writing focus and content as well as being a subject that i am forced to touch upon when sharing personal experiences and stories, it’s inevitable. Prompted by a question from a person in the room regarding choosing subjects and me describing a lot of interest and stories to do with celebrities’ lives, reality shows, a life-long love of memoirs, biographies and documentaries, i realised a lot of my processing of life is done from an even safer place than i thought. I’m always hiding behind something, despite my yearning for adventure, spontaneity and passion for life, this particular difficulty i have definitely shapes the way i communicate and the level of safety i operate behind. The main thing though it to stay positive with it and recognise that the courage and strength i have to write the things i do, comes from being comfortable and feeling ok in my surroundings, safe in my own space and realising my boundaries. With this in mind, it makes me even more glad of having the ability to communicate via a blog or perzine and also an appreciation of how important DIY and zine culture has been on my life and helped me grow, exactly how i needed to, on my own terms.

‘Agoraphobia is a fear of being in situations where escape might be difficult, or help wouldn’t be available if things go wrong.’

I was diagnosed with agoraphobia in 2007 at the age of 21. When i was as young as 8 or 9, I started having symptoms of OCD and had always been an anxious person generally. i was convinced the bathroom was full of hidden cameras and had to check everything before i had a bath or shower, but it built up into a defiant refusal to wash at all, as the feeling was so strong that i knew i was being watched, even if i couldn’t find the cameras. This isn’t the sort of stuff you can talk about with your friends and have a joke about at that age. I remember trying to explain it to my mum and she just couldn’t understand it at all, it upset her and she booked me into the doctor’s as she had no idea what to do about it. At that time (mid 90′s) there was no such thing as Big Brother and similar surveillance/ fly on the wall culture that there is now, so this confession was particularly left field and pretty bizarre coming from a kid. I used to lie awake in bed waiting until everyone had gone to sleep and then sneak around and switch off all the plug sockets (resetting the video clock everytime and doing my parent’s heads in) then i sat at the end of my bed and pinned the sides of my curtains to the wall and then paper-clipped the two together in the centre to stop any light getting into my room. I started with these routines young and it was clear there was something strange about how i had to live my life, it wasn’t a choice to do this, i remember being upset about it numerous times and feeling like i couldn’t talk about it to anyone for fear of their reaction. None of it made sense in my own brain, i had no choice of anyone else understanding i thought. The anxiety and OCD continued through into my adult life but switched to new versions of itself, i could only ever sit by the window in any vehicle but if anyone sat next to me on the aisle seat on the bus or train i would start having panic symptoms and feel a massive urge that i was either about to wet myself or throw up and because that person was there i couldn’t get to the toilet in time. Being sick and wetting myself were major features of it and i never ended up doing either of those things in any situation but nonetheless the compulsions were huge and distressing, meaning i could only travel at certain times, i could never chill out or enjoy a journey and eventually they turned into me just not travelling at all, not even leaving the house. At each new stage, it seemed like more of me was disappearing. Despite the OCD symptoms when i was young, i was still wildly excited for adventure and was able to travel long distances such as a weekend run away with my friend when we were 15 to Bristol for a riot grrrl festival (incidentally where i picked up my first zine) and visiting friends i’d met online or in pen letters who loved the same things as me all across the country. It was only as i got into my twenties that the agoraphobic side of things really started taking over.

I understand from my experiences as a kid and events that happened in my life that my chances of having PTSD or mental health problems are high and i’m also thankful every day that i have not found myself in more challenging situations, or gone down the statistically high route for my trauma demographic of self harming, being involved in crime or turning to drink or drugs. I try every day not to be a statistc but instead an individual with power and strength. A positive outlook and clean living keeps me within a healthy place and motivated to keep focused.

‘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. 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.’

In my final year of university, an intense event happened to me and when i look back and especially through the CBT and counselling sessions since, i have come to the conclusion that this must have been the trigger specifically for the agoraphobia to take hold over the other anxieties. One of the main themes of my OCD was a fear of being burgled. I locked everything up, checked doors and windows numerous times and had my dad (who’s a joiner and general handyman) come round and fit all internal doors with locks wherever i lived. One of the things you explore when in therapy for OCD is what would actually happen in these worst case scenarios you obsess about in your head. So, instead of fearing these things, what would happen if they did occur? The answers often end up with ‘you’re still alive,’ and you’d be set tasks to confront scary situations you were avoiding to see how they’re not as bad as you think etc. Except that in 2007, 3 weeks before final 3rd year deadline at uni, i was burgled. And i didn’t feel any huge relief at that, i didn’t learn any giant life changing lesson, i didn’t cure myself of the anxiety by realising that ‘whatever you do, the outcome is still the same’ like that’s supposed to do. Instead, it added a more intense fear level, a proof almost, the opposite to what the counsellors said. The scale of the burglary was massive. They crow-barred all the internal doors i’d added locks to off the hinges, got into every room and not only took anything of monetary worth (they also took the laptops our dissertations were on, the cameras with SD cards inside of all of my final year project which meant a year’s worth of work had to be fragmentedly put back together from what had been backed up, a lot was lost and it left a huge impact on our final grades) they also trashed the house, taking sentimental items and invading my privacy to the extreme, going through every drawer, through underwear, personal folders of letters and more. The worst thing was once they had finished, they left the front door wide open for anyone to walk in in the dark and when i got home around midnight, that’s the sight i saw. This is a sight now etched onto my brain, something that pops up whenever i know my house is empty and i’m on my way back, it builds up on any journey back to my house and is only lessened in intensity when i arrive to find the front door still locked and i can start to breathe properly again when i’ve checked all the doors and windows are also still locked round the back too. Since then, the default summary in my brain is, your house is not safe unless you are in it and that’s now how i live my life.

‘They avoid situations that cause anxiety and may only leave the house with a friend or partner, or order groceries online rather than go to the supermarket. This change in behaviour is known as avoidance’

Agoraphobia is not just as they show on TV. My impression of it before i was diagnosed was a fear of going outside, full stop. Like Matthew on Game On or Sheila on Shameless. Wild reactions to stepping out the front door and no way of functioning outside. I know now, from a lot of self reflection, living under the diagnosis for a few years and numerous counselling sessions as well as CBT, that the OCD and the agoraphobia are a secondary thing to the generalised anxiety i experience. They’re like the response my brain has to certain situations i don’t like or can’t deal with, coping mechanisms or ‘avoidance,’ a way of edging away from situations i don’t feel comfortable in. What i once knew as a main focus of my OCD behaviours, is now a major factor of the conversations i have in my brain as to why i can’t go out mixed in with an overall fear of vulnerability (something i can also trace back to childhood) and the need to be able to control or be assured of the outcome of certain scenarios and situations.

The misconception is that this is a choice and therefore, sufferers are happy with the decision to avoid leaving the house. For me, as a person who is excited about life, keen to experience everything and make the most of living, it’s particularly difficult. It’s very hard to understand yourself, nevermind for others and as it’s more to do with reassurance and control, rather than simply stepping outside of your front door, people can’t get their heads around why you can sometimes go out and not others. This is possibly one of the worst things about agoraphobia for me, you worry about your friends and family thinking you’re avoiding them, ditching them, or that you don’t wanna see them or spend time with them. This isn’t the case at all. Part of the illness, often diagnosed alongside OCD, are the compulsive thoughts and beating yourself up about wanting to do things but not being able, letting yourself down as well as others and a spiral of frustratedness when it’s at it’s worst. It’s not like ‘oh i don’t think i can do that today’ and giving up easily, it’s more like looking forward to something but knowing it’s going to be hard and battling with your own thoughts that are trying to convince you that there are a million reasons why it would be a bad idea. Even when i’m at a good point and feeling healthier, my head will be full of obsessive thoughts as to what outcomes could happen at every step of a journey and why i shouldn’t go.

 ‘In particular stress management techniques and various kinds of meditation practices as well as visualization techniques can help people with anxiety disorders calm themselves and may enhance the effects of therapy. So can service to others which can distract from the self-absorption that tends to go with anxiety problems. There is also preliminary evidence that aerobic exercise may have a calming effect. Since caffeine, certain illicit drugs, and even some over-the-counter cold medications can aggravate the symptoms of anxiety disorders, they should be avoided’

The reason i finally decided to write something specifically about this rather than my usual bits of including anecdotes across some of my writing is that this weekend really highlighted some more elements to me and i think it’s so very important for more people to discuss the realities of mental health and particularly in a positive light. This may not sound too positive as i’m discussing the condition itself specifically rather than in relation to how it is in my everyday but what i’d like to put out there is that it is possible to live the life you want to live. It’s not the end of the world and you shouldn’t give up. As i’ve learned to do since i was young, you have to find a balance, find your safe places and learn to live with your boundaries as best you can but see them as a safe and comfortable base to work on pushing yourself from. I make sure i don’t feel too restricted or upset about situations by always having certain positive or happy things around me. I am aware of what makes me feel more connected to the world, what can get me in a precious and happy place and good sources of inspiration and calm to surround myself with. It makes a huge difference if the people around you understand how your brain works and they can help situations without you even having to ask or for anyone to feel dependent or depended upon. Through reading about this, i’ve seen a lot of people with agoraphobia also have issue with vulnerability and this often falls into that category. You don’t have to feel like that, you should always reach out. Whether it’s through a zine or a blog or even through social networking, if that’s what works for you, don’t feel bad about it. Find what works for you and learn to work together with your own brain instead of seeing it as the enemy or something you have to just deal with. It’s a lot to do with keeping positive and being healthy, living a calm life free of needless anxiety and you really start noticing a difference and an ease. The gym is a big part of settling my brain and focusing on something other than the obsessive reasons not to do something.

I run my own business from behind a computer screen and don’t have to leave the house to do it, this has helped in so many ways to calm me down and this is reflected in certain areas of improvement for me. You have to work with what you have, instead of running scared or giving up, for me accepting it’s existence and that it probably is always gonna be in the back of my head, even at my healthiest was actually a positive thing. It means i have learned to live with it and just adjust my life and the way i do things to run alongside it. There’s always gonna be things i find difficult but it makes a huge difference once you’re aware of your limits, open about things to the people around you and you have a good programme of self care and relaxation. I built the zine fest up in my head for a week, gave myself the time to consider all the pro’s as well as the cons and then focused on once it’s over, giving myself time, downloading inspiring films, reading books i’ve been wanting to read and often what happens with me is buying a cake or ordering a pizza haha, it sounds a bit like bribing a child to do something but if it works, it works and my life has changed drastically since i spent time being open with myself and others about this.

Standing up and being counted is another great way of helping others and increasing visibility and decreasing stigma. My favourite example of a fellow agoraphobe is Woody Allen, he’s a huge fan of New York City and being a part his surroundings, interacting with others and human connection and is a person who loves art and feeling, he pushes himself and is so much richer for it. He’s a celebrated appreciator of many social aspects of life and also of environment, a real success for an agoraphobe!

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