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My Journey Through Agoraphobia - Part 2

This page updated 29 November 2010
By Janesse - written September 2007

[see also: Part 1 ]

Part 2

Hi everyone,

Last time I wrote some general thoughts in regard to agoraphobia but this time I thought I would write a little bit about the treatment of agoraphobia. (I will probably get side tracked and talk about other things as well so please bear with me!)

When I say treatment I don’t mean I will be recommending treatments. I am not a therapist or a medical professional, I am just a person who has had agoraphobia for a number of years and who has tried a lot of different treatments. I have finally found one that is working for me, but that doesn’t mean it necessarily will be the right one for you or others.

Of course the hardest thing with treatment for agoraphobia is getting to the treatment.  How can we get treatment if we find it difficult to leave the house? Some therapists may agree to come to your house or to do telephone sessions but there are not many who will do this. There are some online programs being run but they can also be hard to access. So there we have the first stumbling block.

The next is finding a good therapist, be it psychotherapist, psychologist, psychiatrist or any other type of therapist or counselor.
I cannot stress enough the importance of finding a good therapist. Not only a good therapist, but one that you are totally comfortable working with. One that is suitable for you, no matter which form of treatment you choose, this is vital.

In my opinion there are very few therapists who really understand agoraphobia. They understand panic attacks, and panic disorder, but as I said in the last newsletter, I don’t feel agoraphobia can be lumped in with those disorders. Agoraphobia often has its own inherent issues that also need to be treated.

How do you find a good therapist? I wish I could tell you. Unfortunately at the moment it seems to be a trial and error process. Before I found the wonderful therapist I have now, I saw three different therapists, for over six months each. None of them were right for me. This was actually a horrible time for me; I was convinced that the problem was me, that there was something so horribly wrong with me, that I couldn’t be treated, that my agoraphobia was the worst there ever was, and that I would never get well. I was so despondent, I felt hopeless and helpless and often contemplated suicide. I had tried therapy and it hadn’t worked.

What I really wish someone had told me then and what I want to tell you now, is don’t give up after a bad experience with therapy or a therapist.
Please persist until you find a therapist you can work with. It is not you; you can be treated no matter how bad you think your condition is.
Now having said that, any form of therapy is not easy. It is hard work and I don’t want you to think I gave up on previous therapists because I thought it was too hard. I can honestly tell you that I tried my best with the other therapists. One who had been recommended to me was quite a distance from where I lived and getting to that therapy was like torture for me every week, but more often than not, I managed it. Whatever the therapist asked me to do I tried to do it, even if I often didn’t succeed, I tried. It did eventually become too much for me.

With these therapists I was having Cognitive Behavioural Therapy (CBT) which wasn’t suited to me at that time. Again, I would like to emphasise that I am not here to criticise therapists or CBT itself. If you are having CBT and it is working for you that is fantastic! Many people have had great results with CBT.

My concern is that maybe there are other people who found it wasn’t right for them and have given up on getting better. CBT seems to always be recommended for agoraphobia and as I said, I am just concerned that people think it is the only treatment out there and that if it doesn’t work for them they have no alternative.

If you use CBT, again I would stress: find a therapist you feel comfortable with. The therapists I saw that used CBT I found to be too “clinical” in their approach with me. For other people that might suit them perfectly and work really well for them. For me, at that stage of my agoraphobia I needed someone who I felt really understood me, would really listen to me and above all would be kind and gentle with me, especially in the beginning. I needed to feel that even though I had this terrible disorder of agoraphobia that I was still a decent human being, that I was still worthwhile as a person. After being agoraphobic for so long, trying therapy, trying so hard to get better and it not happening, I really didn’t believe I was a worthwhile person.

At this stage, I also felt that my partner and some of my friends were getting sick of me not getting any better and perhaps thought that I really didn’t want to get better. I felt that they thought if I really wanted to get better, I would be getting better. Ah, if only it was that easy! No matter how much our family and friends may love and care about us, agoraphobia is a very hard disorder to understand and indeed, it is often hard for them to live with as well. (This is something I would like to discuss more in the next newsletter). But having family and friends question you also makes you doubt yourself. I also felt like I was being a burden on them because as an agoraphobic you need to rely on other people for many things.

So, with feeling so bad about myself I needed a therapist who would be kind and understanding. Thank God I found her, I truly believe she has saved my life. When I was despairing at my lowest, her understanding and belief in me raised me up and helped me get through it. I have been working with her for a few years now and while I am not completely free of agoraphobia, the progress I have made is remarkable. Again I would like to stress that therapy is not easy. My therapy has been so difficult at times and there were many times when I wanted to give up but I was able to talk it through with my therapist and we found a way to get through it.

The type of therapy I am having is psychotherapy. My therapist told me at the very beginning that it would be a long process. Psychotherapy is no ‘quick fix’. She was honest with me and told me that it would be long and at times emotionally intense and difficult and it has been. It has also been the most valuable experience of my life.  However, like other therapies, psychotherapy does not suit everyone.

As I said earlier, no matter what type of treatment you decide on, getting there each week can be the problem. I think this can be one of the reasons that agoraphobia can remain untreated for so long. And the longer it goes untreated unfortunately the worse it may get. There is also the matter of the cost of treatment. Government run programs can be good but there are sometimes long waiting lists, or the treatment period is not long enough. If you decide to pay for it yourself it can be very expensive. If you have been agoraphobic for a long time, it means that you probably have not been able to work for a long time, so you may not have a great deal of money.

If you are unable to access therapy at the moment for whatever reason, I would encourage you to read what you can about agoraphobia. I think I have read every book ever written on agoraphobia! Some books were great, others, well, not so great. Still I think you can take a bit of something from everything you read.

If you have access to the internet there are a number of online support groups, message boards and online forums. I personally have mixed feelings about online support groups. When I was first agoraphobic I joined one and found a great deal of help and support through it initially. However I do think for some people online support can become a substitute for actually doing anything about agoraphobia. On the other hand, agoraphobia is a very isolating disorder and if you can find the support you need online then sharing your experiences and listening to other peoples experiences can be very helpful. 

Agoraphobia can be a very misunderstood condition, even by medical professionals. I have had to explain what agoraphobia is to people in the medical profession such as dentists and more recently when I had to go into hospital for day surgery to an anesthetist. I have even been looked at by some doctors with a blank stare.

In the beginning of my agoraphobia I was too embarrassed to tell anyone about it, especially people I didn’t know or who I would have to come into contact with. What I learned through the course of my condition is to tell people, especially if you need to go to a dentist or anywhere else where you may be uncomfortable. Let them know that you are agoraphobic and tell them what you need.  Even though when I started to do this I was embarrassed, in the end I found I was much more comfortable doing things this way.
It can be hard to do this at first, especially if you do come across people who don’t understand what you mean when you mention agoraphobia and you have to explain it to them. More often than not people will be very understanding. For example I have had to go for a number of different X-rays. I always told them when I rang for an appointment and then again when I got there and would also tell the X-ray technician. Everyone in this circumstance was lovely and they tried to make it as quick as possible for me and chatted to me to help me try to relax.

I think in the beginning we may try to hide our anxiety from everyone, which in fact just creates even more anxiety from desperately trying to hide how scared we are, as well as just trying to deal with how scared we are. By letting people know we may also be helping other agoraphobics. If you come across someone who doesn’t know or understand what the condition is and you explain it to them, the next time they deal with an agoraphobic person they will have more understanding.

So far I have not mentioned the role of medication in treating agoraphobia.
The reason for this is that I have no first hand experience with medication. I have not taken medication for my agoraphobia. There are a number of reasons for this, including the fact that I have bad reactions to so many medications that I have been very reluctant to try anything as strong as the medications they prescribe for anxiety disorders.
It is not up to me to discuss the role of medication in treating agoraphobia – I shall leave that to others who are far more knowledgeable than me on that subject. As I have said before, the treatment for agoraphobia is a very individual thing and what is right for some will not be right for others. Judging people for the choices they make serves no purpose.

As I said in the last newsletter, one of the other things that has helped me enormously has been meditation. I would strongly encourage everyone to try it. Even if you can do nothing else, please give meditation a try. It is so beneficial in every way. I highly recommend Pauline McKinnon’s Stillness Meditation CD. With meditation it is important to make it a part of your regular everyday routine to get the most from it.

I know the pain of being agoraphobic very well and the awful despair it can bring with it.  No matter how you might feel now, please know there is hope and you can find a way to recover. 

“The journey of a thousand miles begins with one small step.”  Old Chinese proverb.

Janesse (ADAVIC Member from Sydney)  – September 2007

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