What is agoraphobia?
posted by stuart
Agoraphobia is one of those conditions, that isn't so much about what you can see - it's more about what you
can't see. In other words, there are often no visible signs to others that you are ill. There are no cuts and bruises or walking sticks. People are often ignorant to its causes and effects. They may tell you to 'snap out of it' or to 'pull yourself together' or even worse accuse you of attention seeking. It's no great surprise therefore that many agoraphobics keep their condition camouflaged, and don't seek help or treatment for many years. They may shun social events and gatherings by always managing to find a handy excuse for their absence.
On the mental health scale, agoraphobia is often called a 'mild' mental illness. Such labelling doesn't help anyone, least of all the sufferer, who knows perfectly well that what they are experiencing is anything but 'mild'.
First let's get the definition right. Ask a lay person what agoraphobia is and they will nearly always reply 'a fear of open spaces'. This is not strictly true. Thankfully, these days GP's and mental health professionals understand the condition far better. It's not always about 'open spaces'. It isn't so much the places or situations (such as public transport or a supermarket) that frighten agororaphobics but the internal fear of having a panic attack in such a place where fast escape to a place of safety (typically the home) is not easy or possible.
When placed in situations where escape is difficult then sufferers often feel symptoms of extreme anxiety or panic which can include: rapid heart rate, difficulty breathing, dizziness, chest pains, vertigo, nausea, restricted vision/hearing and a strong feeling of impending death or disaster. It's not surprising therefore that sufferers often avoid the situations and places where they are likely to feel such uncomfortable symptoms. Unfortunately by doing so, recovery is so much harder because they are reinforcing their own fears. These bodily symptoms are caused by an overdose of adrenalin in the body which is the bodies natural way of dealing with anxiety provoking situations.
But why would somebody be afraid of going to the shops? or having a haircut? Or going on holiday?. The answer for this is that fear is very much a learned behaviour. Let me give you a common example of how anxiety and panic attacks can lead to agoraphobia.
Susan has been feeling unwell for a few days. Her relationship with her husband is going through a sticky patch and Susan isn't feeling very confident in her new job. She has been suffering a few panic attack episodes where she has been feeling faint and sick and sweaty. She begins to feel like this at the bus stop one morning. Suddenly she thinks "what if I faint or vomit in front of these people..I better not..oh my god, I can feel it coming on..". Each worrying thought leads to more and more adrenalin being released, more severe symptoms and eventually Susan decides to call a taxi to get home quicker. The next day, the same thing happens again..Susan begins to avoid bus stops and public transport "just in case".
over the next few weeks, Susan begins to avoid more and more places where she begins to feel anxious. Over time, she has restricted herself from many social situations, shopping is now difficult and it's placing extra strain on her already strained relationship. Susan has developed agoraphobia.
Nobody's condition is the same. There are varying degrees of agoraphobia. Some people feel they can travel with the support of a trusted friend or relative. Some can't leave the house alone. Some people can travel short distances alone. It depends on the individual. Some people use props or rituals to make themselves feel better when outdoors (such as clutching tightly at house keys or a photograph when feeling anxious).
The problem is more common than previously thought. Recent surveys have shown that up to five million people in the UK have agoraphobia. That is a staggering number of people suffering from a very debilitating illness.
My early Experiences with AgoraphobiaI was living at my parents at the time. I was in a relationship that was starting to become unhealthy. I was very shy and awkward at college. My self esteem was low. I caught food poisoning..I think that bout of illness seemed to "unlock" something in me, gave me a trigger and forced all the demons out of the door. I developed a fear of vomiting after this and noticed this fear was particularly scary in public places. I began to have "bad mornings" and everything seemed too much. Exams were coming up at college, I was going away for a few days break.
I began to worry about everything. It led me to focus on things that wouldn't have usually bothered me too much..such as reading in the press about things like allergic reactions to wasp stings or BSE or stomach flesh eating superbugs..I started to focus too much on my own body and not surprisingly, I developed panic attacks.
The agoraphobia came afterwards. I began to avoid more and more places where I feared a combination of fainting, being sick, dying, going mad..Once I was inside, those fears subsided and I could gradually breathe a nice pleasant sigh of relief. I only felt comfort in escaping the places that I dreaded having a panic episode. People would try to reassure me by saying "But if anything bad did happen to you, many people would be around to help". I doubt they could have said the exact wrong thing to me. That was the whole point. You could say I was terrified of embarrassing myself in a public place. Hence the thought of people rushing around to help the collapsed fainting me was my worse case scenario.
I wasn't afraid of a supermarket. They aren't scary places really. They are just places people buy food and stuff. However, I was afraid of going into one. Why? because they are full of people. They are the exact space that led me to think "what if I panic here..what if I am ill here..what if it's a really bad one and I show myself up". Those thoughts were more powerful than the little voice going "don't be silly and do your shopping". The irrational voice won all the time. It held more fear. And fear equals power.
The term "nervous breakdown" isn't something you hear doctors talk about these days. It's not a specific term, it doesn't really mean much but breaking down does seem to me the best way to describe how I felt at this time. I became scared of fear. Unable to use the same rational thought process that I had previously used. I was deeply unhappy. I guess all the suppression of feelings I had hid for a long time, such as feeling bullied at school, unable to be assertive with my parents, feeling bleak about my career prospects, having "bad" friendships, my relationship failing and becoming what it had..it was everything all let out the nasty bag of tricks and I became this mouse. This terrified mouse shaking on the bed, scared of everything.
Once the "bag of tricks" was open, it soon led to phobias (social phobia, agoraphobia, vomit phobia), panic attacks, depression, generalised anxiety and ocd (obsessive compulsive disorder).
I don't think I ever really accepted the physical symptoms I was having. It was those I was trying to avoid but by thinking about them so much and focussing on them, all I was doing was making them worse. Much worse. I stopped using buses, didn't feel comfortable in cars or taxi's, didn't like to travel far, avoided getting my hair cut, avoided waiting in queues, avoided big shops. I had my eyes tested at home and I even found that an ordeal. I just wanted the person to hurry up with it and I sat there all agitated and anxious digging my nails into my hands and feeling all sweaty. I had the same feelings with visitors or mobile hairdressers. I just wanted them to go. It's difficult to articulate just what exactly it was I feared except to say I was scared something bad would happen. I was scared of losing control I suppose, panicking and having them fuss all over me or worse think look down on me for being 'weak'.
It was almost as if people were in one world and I was in another with this huge unbreakable glass surround in between. I just felt so spaced out and unreal.
Recovery comes with ChangeI think it's incredibly important that background anxiety is reduced. At the time of me developing agoraphobia, I was in a desperately unhappy relationship. My housing situation was dire (in the ground floor of a grotty council flat and with constant stress from neighbours). I didn't like myself. I thought I had let everybody down.
Positive changes in my life happening over a period of years rather than days or months. I got out of the relationship I was in (and when you feel reliant on somebody else that was a huge decision) and also ended all contact with that person. I moved back with my parents for a while. Some people saw that as a backward move, but at least I was safe. I was given the peace and the space I needed. Rather than look at unreasonable targets too soon, I spent time on me. What did I want? The same as most other people I guess..to be happy.
I went through a period of exposure to the same situations and places. I went to the same shopping centre time and time again until it became almost boring..but it was only boring because it became 'just another place' for me..and not a dangerous place. I continued doing this in various other places..but I still never really felt fully in control of my anxiety.
Confidence for me was a slow burner. It took a very long time (even armed with all the knowledge). I became very pro-active in my own fight towards controlling my own anxiety and gaining my life back. Reading books, asking questions, putting things into practice and taking risks were all vital ingredients towards a better life. I moved North last year - 200 miles from home - to live with my boyfriend. I wasn't running away from anything, and I think that's important. It was scary at first. I wasn't afraid to ask for help. I have a brilliant CPN and great support from my partner. But I think the best support I have is me being kind to myself.
If I have a bad day, it's just a bad day. We all get them. It's part of life. I've just completed a course and am starting another in the next few weeks. I feel comfortable around people now, and feel able to have a voice. Managing to travel around on buses is a huge step for me. I used to say "I can't do that because I'm agoraphobic" and now I say "I can try and do that and to hell with any of the remaining agoraphobia" because you give empower yourself..It takes a lot of time and many setbacks, but I think it's well worth the reward.
My top ten bits of advice would be:
Read, ask questions and correct others if they are ignorant about aspects of your condition. Self-help can be a big feature in recovery. If you want to get better then the chances are you will (eventually) get better. Motivation is enhanced by small successes..and the first big step to recovery is not to be in denial.
I and many people I met with agoraphobia always focused on the physical symptoms of anxiety. I think this was the hardest battle of all - doing things even though I felt terrible. I also held on to the feeling that something physical must be causing my agoraphobia. Get yourself checked out by all means - two, three times if needed. But then accept. Don't feel ashamed. No matter what you've been told or what people may say, you are not 'weak'. You have an illness.
Diet, exercise and sleep are so important. Try and avoid having too much caffeine as this can cause you to feel even more jittery. Don't try to mask your problems with alcohol or drugs. They will still exist in the morning.
This is a time when you need calm,support, encouragement and most of all..patience. Try and resolve (with professional support if possible) all the things in your life that may be causing or contributing to your anxiety.
So many people have differing experiences with professionals. One type of therapy may not work for everyone, but as a basic rule of thumb - any support that encourages supported action based work is worth persevering with (cognitive behavioural therapy is the best treatment for agoraphobia). If your doctor keeps fobbing you off with drugs alone then change your doctor.
- Small but regular goals to start with
Don't try to run before you can walk. Your early goals will be things that will cause you some (but minimal) anxiety. If you have problems setting goals by yourself then seek the support of others.
Never feel guilty about treating yourself. You deserve it. Rewards need not be expensive - they can be a stroll at sunset or sunrise or treating yourself to your favourite magazine.
This is really important as you can look back at what you have achieved and read your journal on days when things aren't going so well. This can keep you motivated.
Confidence comes from changing how you think and changing what you do. By learning to think positively, you will start to act positively. This in turn atracts people to you. There a number of confidence courses being run around the country which also deal with being more assertive. Your GP may be able to help point you in the right direction.
There are self-help groups that may be of support to you.
http://www.nopanic.org.uk/ offer worldwide support for sufferers of Panic Attacks, Phobias, Obsessive Compulsive Disorder, General Anxiety Disorder and Tranquilliser Withdrawal
http://www.first-steps.org/ First Steps to Freedom is a U.K. registered charity which aims to help, in a practical way, those who suffer from phobias, obsessive compulsive disorder (excessive washing, checking, unwanted thoughts etc.), general anxiety, panic attacks and those who wish to come off tranquillisers, together with help for their carers.
http://www.topuk.org/ Triumph Over Phobia (TOP UK) is a UK registered charity which aims to help sufferers of phobias, obsessive compulsive disorder and other related anxiety to overcome their fears and become ex-sufferers.
One Final Thought:Nothing that I have ever feared has come true. I have never fainted in public, never had a heart attack, never lost control or ran around screaming, never collapsed on the floor, never lost my mind.
I have felt sick, dizzy, breathless, jittery, and terrified. But these feelings are just that..symptoms of your anxiety. It took me a very long time to figure out that if I stopped being afraid of these things then eventually they would go away. Avoiding them just made them seem that much more real and significant than what they really are.
