Agoraphobia is something I have been fighting for years now. It's the fear of public places. Many people with agoraphobia have interlinked conditions. Some have general anxiety disorder (like me!) and some people have monophobia (fear of being left alone). With monophobia people take comfort from having someone with them in anxiety inducing situations and become dependent on that person, leaving them with a fear of being left alone and losing their 'safety net'. Some people are housebound, even room bound by their fear. Some can travel to various 'safe places' that are very specific and some manage their anxiety and get out any way as best as they can.
My agoraphobia started about a year after I fell ill with M.E. when I was 15. I was starting to have a lot of time off school due to the illness and so I became nervous about travelling there and seeing people I hadn't seen in a long time. How will they react, how will my teachers react, what if the bus fare has gone up and I don't have enough money and they won't let me on the bus and I can't get to school..? Before then, I had an impeccible record of attendance but I ended up bed bound due to my health anyway. I was fearing the unknown. People had changed, their lives had carried on while mine had stood still. I didn't get to see our community gradually evolve and develop. Everything had changed, shops had gone, new ones in their place and such. This drove fear into me.
I got to a point where I couldn't even leave the house to see my consultant at the hospital. I stood and started to hyperventilate, fell to my knees and went white as a sheet. My mum just grabbed the phone, huffed and called them to say I couldn't come, and she'd call again when I eventually could. She tried to calm me down a bit but I know she was just frustrated at me. It must seem horribly illogical and you can't really do much about it. I felt terrible. Even more so that everyone seemed so fed up with me, but I couldn't help it. I really couldn't. It didn't matter how much I told myself everything was okay, my mind turned it round to how 'different' it was and how uncomfortable it was for me.
It developed more and I just didn't want to leave my bedroom for fear of my parents having a go at me for what I couldn't change or do a thing about. Not then anyway. I couldn't get the help I needed when I couldn't go out and nobody knew what to do. I'm not angry at them or anything. I know they were still struggling to come to terms with everything, still didn't believe it was real or want to accept it. If I'm honest, I feel like they took it harder than I did. I struggled with myself for so long till my M.E took over me, and my phobia too, but I fought but it just knocked me down so it probably seemed quite sudden for them.
Now they're a lot more understanding and supportive. They read the literature I send them, they read this blog (I know, I must be mad to mention them right?) but if I'm dishonest, I'm not going to really be helping anyone, even if what I say hurts, it's how things were. But that's okay. It's not easy, it's a huge struggle and anyone who thinks otherwise is wrong. It took a lot of learning. For all of us.
Eventually I managed to get in to the doctors, they referred me to youth therapy services and they came round to the house and visited. They put me on Setraline, a form of anti-depressant which is a popular choice for doctors to prescribe for anxiety. I got tolerant to it after a while, so I've been on a fair few others, but have gone back to it after a long break a couple of times. It's the only thing that helped, albeit seeming like not much, it really did help.
I started exposure therapy. Gradually being exposed to outside, I'd go to a shop up the road and buy some magazines. In. Out. Home as quick as my legs could take me. Which wasn't that quickly. Confined to bed for days after but it was okay, I had magazines to read! These positive experiences all built up and I got a little more confident. My ex-boyfriend admittedly helped me a lot with this. He was very social and confident and that rubbed off on me, I started to do more things and my self-confidence built. I don't think I'd be with my current fella now if I hadn't made so much progress. I'd never have been able to go meet him from the train if I was how I was just a year before.
I used to calculate everything. How many miles away something was, the distance I can walk, how long it would take to get there. More than 25 minutes? No sorry, can't do it. I analysed everything, every potential case of leaving the house. I found over time, I slowly stopped doing this, or well, doing it less. I still calculate journeys, but it became more because of my physical condition than fear.
Now, I am more symptomatic again. I don't know why. I had a bad turn on the way back from a holiday in Devon with my lovely (almost) family in-law as I was struck with food poisoning 200 miles away from home. Not much incentive to do it again. It's only when I'm literally getting ready to leave that I start panicking, if it's something local I keep myself distracted, if I don't, I work myself up. I stand by the front door and take a couple of big breaths and try to calm my frayed nerves. It works a little. I have massive anxiety but it's still controllable. I think the only reason for this is I'm not going very far away and I always have an escape route. Whereas travelling in a vehicle, I don't. And of course, I can't walk too far, so I can't travel very far like that! It's a few steps before my legs feel ready to splinter and I'm in agony, I really have to pace myself. But stopping makes the anxiety creep over me more! It's a tough one.
I feel overwhelmed, my heart pounds, I start to feel sick, I need to pee, my stomach hurts... which I think is my IBS being triggered by stress which never used to happen. It's hard to deal with these physical symptoms and they make me panic more. I get scared that I will wet myself and I'll be ridiculed for the rest of my life. My dad says stuff it! If it happens, it happens. I try to remind myself of this, it helps a little. I'm not scared someone might hurt me or something bad will happen outside. My fear is the unknown, the huge changes that have gone on around me.
I'm having progressively more and more bad turns and need more and more physical help (washing, getting dressed, toilet needs and such) and I try to go out when I have that rare good day. Part of me thinks it's the stress of my current battle with the ridiculous benefits system. If you keep up with the news, #patspetition and recent protests, you can get the idea. I also deteriorate in winter. I'm somewhat scared I'll never be able to leave my home again, I'll just be in a cycle of collapsing and panicking about it. I'm worried I'll become bedbound again. This isn't illogical. It could very well happen and some days, I am stuck in bed and I wonder when I'll be able to get up again. It's somewhat negative, yes, but it's difficult. I do try and stay positive a lot of the time, but agoraphobia is a negative thing so I'm trying to get my negative side across a bit so you can understand some thoughts and feelings.
It takes time, hard work and support. Not being told how 'stupid' or irrational you're being. If you know someone who's agoraphobic and you're one of the people who tells them to get a grip, you need to re-think a little bit. You're not helping. You're just re-inforcing the fact there are people outside who do not give a damn if you're scared or upset, they'll be mean or laugh or sneer. We don't need that. Grab their hand and help them out the front door, slowly, bit by bit. Outside the front door, up the front path, to the road, to the corner shop and so on! Encourage them to try it themselves and make sure they know they can count on you. I never thought exposure would help me. I snuffed it, but here I find myself trying to do it again to rid the anxiety that creeps over me when I think about going on holiday again or travelling to my parents'. It works. Slowly but surely.
Your GP can give you more help and advice about it. If you can manage to go there! Friends need to help you to help yourself and take that first step. There is always someone who will support and help you, even if it's not the people you expect. Who's gonna support you, this guy! *points thumbs to chest* I'm here for you. So don't ever use the excuse 'nobody cares'. Because I do. And I hope this helps a little if you suffer. My email is available on my website if you ever want support. Just remember, as I've said previously, I'm not a doctor. I speak from experience and what works for some doesn't always work for others. But we can get through this. Together!
To find out more about Agoraphobia click here.
Written by Elizabeth Fleming of BeneBelle.