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  • Writer's pictureRachel Chan

Getting back out there....

You may be pleased to know that it won’t be the focus of this blog, but it seems rather remiss of me to start a blog in 2020 and not mention the L word: Lockdown. As someone who has been suffering from varying degrees of agoraphobia over the past four years, it’s certainly been interesting to me to see how others have responded to the feeling that ‘outside’ is potentially unsafe. For me, (deadly virus aside) the initial lockdown was a relief. I no longer felt the pressure to leave the house, and I had a pretty solid excuse not to. In the long term of course, this type of avoidance behaviour is very bad for agoraphobia recovery. What we’re experiencing now with the second lockdown, to me feels remarkably similar to trying to recover from agoraphobia. Like most things, it’s not a straightforward upward trajectory. At certain points I’ve managed to get back to a new sort of ‘normal’, but after another miscarriage the weekend of the first lockdown at the end of March, things have become rocky again, and at times can feel back to square one.

The image most often presented to us of the agoraphobic: a cowering wreck of a person crouching at the door, terrified to leave the house, is somewhat misleading. Although I must have looked like a cowering wreck at times, and indeed I have been, my overall experience of agoraphobia has been quite different. Sure, I’ve eventually ended up avoiding situations I used to love in order to feel safe, but it didn’t start out like that. In those early days of the PTSD, I don’t believe I had agoraphobia. I was just incredibly unwell, and everything was a struggle, even being at home. It was like having really bad stage fright twenty-four hours a day. Once I improved and the nerves started to settle a little, I was eager to get back to a ‘normal’ life. Sadly, it hasn’t come easily and despite some brief times of great improvement, I’m still a way off a more permanent resolution. I love the outdoors, and not being able to independently leave my house has been just as frustrating for me as it seems to be for those restricted in lockdown.

Of course, there are millions of people all over the world whose daily lives are restricted due to physical conditions, but for me right now, my fortress is my mind. At first, I had no idea what was going on. I didn’t even think about going outside as being something I didn’t want to do, it just crept up on me. As I felt more and more uncomfortable leaving the house on my own, after years of swallowing my anxiety in every situation, I simply did the same here too, and carried on. A few occasions happened where I was taken completely by surprise. I was looking forward to going somewhere, only to feel absolutely dreadful when I got there and unable to participate in any activities. For me, it manifests as feeling weak, dizzy and wobbly, as if I’m about to faint every time I stand up. I’m then forced to sit for the duration and can just about feel settled enough to stay at the event. A few experiences like this have meant that if I wasn’t nervous at the thought of going out before, I am now.

When I first became very unwell, during those initial months of a great decline in my mental health, I was determined that I was going to get back to ‘normal’ as quickly as possible. To this end, I made sure I carried on with some of my usual activities. The only thing outside church and visiting my parents I was vaguely able to do was continue attending my usual weekly choir rehearsals. When I look back on that now, and realise how vastly improved I am compared to how ill I was then, I can’t help but wonder sometimes if it has made the recovery longer by trying to do too much too soon and promoting the agoraphobia. I had so many awful experiences of going outside and feeling dreadful, which then made going outside the next time that much harder. Interestingly though, the things I carried on doing, even when I felt terrible, are the things I can still do now. Everything I stopped doing, like going into shops alone, walking around on my own and driving outside my local area, are all things I feel unable to do now.

In those early days, I craved normality. Attending choir gave me a weekly glimpse into the person I had been, and hoped to be again. I used to travel with my good friend, who would drive, and then let me keep her car keys in my pocket for the duration of the rehearsal so that I could retreat to the car if needed. I never did. All I could do was sit on the floor of the rehearsal room, in the dark, hiding around the corner of one of the internal walls and watch, or at least listen, to what was going on. I dreaded anyone talking to me or even looking at me, as I felt I didn’t have the strength to respond in any way. It took all my energy just to be there. When I think back, although I was sitting fairly close, I felt so far away from the once familiar routine. It felt a bit like I was looking at everyone through a telescope with darkness all around, and a tiny window back into my ‘normal’ life. Although it was difficult, in many ways, I think it saved me. It was a beautiful weekly reminder of what had been, and what could be again, and a healing dose of time spent with people I know care about me, and with a hobby I love. As it happened, the repertoire at the time included the song ‘Roses’, from the musical ‘Gypsy’. Although they obviously weren’t singing to me directly, I challenge anyone to find a medical treatment on this earth with more healing power than listening to seventy of your friends repeatedly singing the lyrics ‘come on you can do it, all you need is a hand’.

Many people, including myself at one time, think that agoraphobia is a fear of open spaces. In fact, it’s a fear of having a panic attack in public. This is a slightly strange phobia for me as I love open spaces and rarely have actual panic attacks! Nevertheless, it does seem to be my tendency whenever my anxiety is out of control. I don’t know for sure as I’ve no personal experience, but I imagine it’s similar to other tendencies which are harder to control when anxiety strikes. For some it may be addiction, eating disorders or obsessive-compulsive habits. For me, it’s leaving the house. I’ve tried everything to overcome it, ignore it, or trick my brain into thinking it’s not happening. This includes a rather amusing incident where I tried to outsmart my own mind by driving to the other side of my village, in order to walk to the shop I wanted to go to. I did this in case it was the route that bothered me, when my attempts to walk from my house (the other side) had failed. Needless to say, it didn’t work, but I felt it was worth a try!

A good friend once said:

‘Well, what you need to do is, you walk to the end of the drive one day, then a bit further to the lamp post, then a bit further and you’ll see that you’re ok and you can increase it gradually.’

She’s right, and that’s exactly the treatment I’ve just started. In therapy terms it’s called ‘graded exposure’ and is used for all kinds of phobia, but is almost impossible to do by yourself. (I’ve tried!) The point is that my mind isn’t well, and I can’t convince it at each stage that I’m safe. I know in my logical brain that there’s nothing stopping me going out, it’s just that when I get out, my mind tells me I’m not safe by exhibiting all these bodily symptoms: dizziness, unsteadiness, muscle tension. Once that happens, it’s extremely hard (but not impossible) to come back from. At times, it feels like an impossible balance. Take too few risks and stay where you feel safe and your world becomes so small you end up never leaving the house, or maybe even a room. Take too many risks and have too many bad experiences while out, and you prove to your brain that outside is bad for you. A conundrum if ever there was one.

The solution posed to me by the therapist is to use a ‘safe place’ that you can imagine when you’re feeling anxious. You have to cultivate it in your mind during times of calm first, so that when you conjure it up, you feel as relaxed as you usually do when you ‘go there’ in your mind. It’s important that you use all your senses to build up the picture. E.g. what can you see, hear, feel, taste and smell. The aim of this is to encourage the ‘fight or flight’ part of your brain to quieten, and the frontal lobe of your brain (the rational, logical part) to regain control. In the past, I’ve used real places. This may work for some people, but for me, once I'd had a panic attack in that real place, the whole thing was ruined as I’d lost my one safe place. This time, in an attempt to bypass those complications, I’m using a totally imaginary place. A beautiful garden on a gorgeous warm sunny day, with all edible sweetly smelling plants and the sound of a gentle breeze and occasional musical birdsong.

As with every condition, each day can be different. One day I may be able to go out to a friend’s house, but another day my anxiety may be worse and so the agoraphobia stops me. This is another common misconception. Well-meaning friends have praised when I’ve been able to accomplish a goal and go out somewhere:

‘there, you’ve done that now, it’ll be ok now.’

I wish that could be the case and I do smile along, but I’m well aware it’s not the end of it and the same outing another day may not be achievable. Again, it’s what would happen if your mind were well and working as it should, but when you throw PTSD, anxiety and depression into the mix, it can be a different story.

As I’m rather stubborn, I could force myself to do anything, but the energy this takes will leak into the days and sometimes even weeks ahead, meaning my anxiety is difficult to manage even at home, due to the effort that’s been needed in order to attend an event I want to go to. I can’t tell you how difficult it is to plough forwards, when every fibre of your being is telling you to turn back, but the will to participate in life and a fierce determination spurs me on. Quite pompously I suppose, I feel I deserve to enjoy life just as much as the next person, and so I try to do what I can to participate in things I would be doing if I was well. You would think that an attitude like this would spare me from even having agoraphobia and make the graded exposure easy. Not so.

One example of this is with the choir. We have a residential every year for one weekend and always have a talent show in the evening. One year I volunteered to host. I spent ages on my script and loved every second of larking about joking and having a great time, like a ‘normal’ woman of my age. It was intoxicating to have a few brief hours of feeling like myself again. When it had finished, a friend said:

‘where’s the real Rachel and who was that?!’

but the truth is that was the real me, and it felt amazing to get a brief glance at that person I really miss. However, for weeks after, I paid the price and felt like I was back to square one with the anxiety and agoraphobia. Was it worth it? Of course! There are trade-offs with anything in life and I think this may be why it’s taking me so long to recover and get onto an even keel. I want to recover, but I also want to live in the meantime. I don’t want to feel like everything is a battle, so I do pick and choose. I have to be realistic. Each time the choir’s been on tour abroad. I’m always devastated to miss it, but it wouldn’t be fun spending each moment fighting anxiety. I have to be content with the fact that I may be able to go one day, and hopeful I won’t be like this forever.

Undeniably, even if I never did the all things I can’t do now ever again – travel, go into a shop on my own, be independent, there’s still so much of life I can do, and with that, I should be content. I am content. It’s not lost on me that I’m in a very privileged situation where I’m supported by my husband and have no dependents. I understand a few small changes in life could make for a vastly different story.

So how can my agoraphobia be overcome? Honestly, I don’t know yet, but I hope my recent CBT led graded exposure therapy will clinch it. One of the most interesting approaches I’ve come across is to be honest about it. So many times, my default is to hide my discomfort if I can, fearing fuss and negative responses. When one therapist advised I let people know when I’m feeling uncomfortable, I was sceptical, but strangely it does seem to help a little. The caveat to this is that you have to be prepared that the response you get may not be the one you necessarily hope for or need. Take the pressure off the response and use telling someone as a way to help you, regardless of the response you get. Surprisingly, I’ve found it can make it all feel a little lighter.

In the meantime, I’m going to keep working at it, and watching with interest how, in the post Covid future, the rest of the world eventually deals with ‘getting back out there’.

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2020년 10월 31일

Excellent read.

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