Saturday, 19 April 2008

Enabling agoraphobia

Last week I had a comment on my post "Stressed". The comment, from an anonymous contributor, included the following words...

I just get this overwhelming sense that Marie is a victim to it [agoraphobia], and you are her enabler. I know this is something you touched on in the's just she's not going to get better by doing nothing."

....and it was odd how, at just that time, Marie and I were having a conversation about this.

We discussed how, in order to assist her to attend Collette's wedding, everyone pandered to her anxiety. We talked about how in the past she had been able to make progress by allowing herself to risk getting into a situation where having a panic attack was a distinct possibility. Recently she had even come through a small panic attack while driving in her car, and continued to make a 9 mile journey. And we both agreed that doing nothing would mean living this way, more or less, forever.

Knowing almost nothing about the consequences of my actions on Marie's agoraphobia when I first met her, I made many mistakes, some of which were major. The repercussions are still with us. With my acquiescence, Marie retreated from staying with almost anyone to staying with someone from small group of "safe" people. I got a mobile phone at her request and now it's essential that I carry it everywhere. I introduced a second car and now I cannot downsize. There are plenty more examples I could cite if required.

Now we both have eight years (long time!) of experience of living with agoraphobia, and it has been increasing in its severity. Simultaneously, we have been exploring possible "cures" and gathering as much information as possible about the efficacy of the available treatments. We have looked at the results of this long investigation.
So now we know with absolute certainty that...

The way to eliminate agoraphobia is.....

Expose yourself to panic attacks, and gain strength from each one that you ride out.

Bit by bit agoraphobia will decrease in strength, and the fear of fear will reduce. Monophobia and OCD can be similarly dealt with. CBT, EFT, hypnotherapy and the like all rely, ultimately, on exposure to panic attacks.

In about a month, the children and I shall be going to Ireland for a break. Marie will have to stay behind. In August, the children and I shall be going to the island of Jersey for a holiday. It's very unlikely that Marie will be accompanying us. When I began a relationship with Marie, she already had agoraphobia, and I made the decision that even if it never went away, we could make a happy future together. Our children have created a different issue. We both agree that we should minimise the impact of Marie's agoraphobia on our children. If her anxiety condition remains undiminished, this would mean Marie sharing her children's lives less and less as time goes on.

Will this give her the strength to fight her anxiety? Only time will tell.


Coffeecup said...

Robert, oh crumbs, what a rough situation to deal with! Everyone knows that because you love, you care, you want to make life comfortable and happy. It's a dilemma, what does one do to assist overcoming this condition?

Firstly, please don't call yourself carer or enabler. You are a husband and father trying to do his best for his family.

Agoraphobia. Phobia = Fear. The only way to beat fear is to confront it.

A person can be 'happy' and panic free within the confines of the fear if it's accommodated. It depends upon the expectations that you have. As the child of an agoraphobic I've missed out on a lot when growing up. I agree it's sad that they miss out on mum being there. Perhaps this can change?

It depends whether you and Marie accept the situation as it is. You can carry on in this way, or make a choice to start some active exposure. I don't advocate the idea of flooding, such as the extreme demand of an impending holiday, too stressful in one go. It would reinforce the belief that it's going to be a nightmare if the discomfort is sustained over a week, but that's just my humble opinion. It's just getting there that's the trouble????

Agoraphobia as you know can be disabling. People who have a physical disability are well catered for nowadays. Everyone understands what they can see. They get the prime parking spots etc. Having to phone hoteliers to get a room by the door isn't any different I suppose. The thing is, that each time such an action is taken, it reinforces the idea that Marie is different and needs special help. You're effectively agreeing with her that these situations are dangerous, that indeed she will not be able to cope. I'm so sorry if that sounded outspoken, I need only look at the list of things that I'm too frightened to do and have to eat my own words a little. No one makes special arrangements for me, and it's bloody hard but the only way is to keep on trying and getting an itsy bit more confident each day. Marie has proved that she can do it when she's feeling confident, without being pushed either. The evidence is that she is well capable. It's so tempting to take the easy option, done it today, got my mum to take me shopping instead of going alone, so I'm aware that the people who I lean on for help, in the long run, are doing me no favours. Thanks for sharing that, on a personal note you have me really thinking too.

I really feel for you on this one. You're discussing it, so that's got to be a good thing. You will find the right balance I'm certain. Best wishes to you both X

SarahC♥ said...

I agree with everything the Steph has said.

Bottom line is that it will only be Marie who can make herself better.

I don't believe you are making her any worse by helping her feel more comfortable when you go out. I have lived with both kinds men, one that went out of his way to help me...did me no favours, and now, a husband that does the opposite, again, no favours there, because its all down to me to get one else.

You are not to blame and you are not the cause of Maries illness, like Steph said, you are a caring husband trying to help his wife and family and in my books, theres nowt wrong in that!


Marie said...

Blimey Steph.. that's a post in it's self!! lol

The whole thing about phoneing for hotels was mostly me if I couldnt get a room that i couldn't get to I just wouldnt go into the place...

So Robert didnt have much choice on the matter!! or if he did try to drag me in somewhere i wouldnt go he'd have a nagging wife all the way home 4 hours.. lol Tell you somthing I dont think id marry a Agoraphobic lol

I know that I have to confront my fears but as i keep hearing u cant do it all at once... in small steps and you will get there!! I think ive been making small steps since I was 13 lol

I just have to gain confidence in my self....

Marie said...

Thank's for both comments thou guys xxx

I forgot to say that in my last comment!!

All the coments and advice I read..
somtimes I dont agree with or just dont want to except... Some of it sticks in my head even if some of it just goes in one ear out the other..
I'm starting to think I may have to start to grow up, but in a good way :-)

Marie said...

Thank's for both comments thou guys xxx

I forgot to say that in my last comment!!

All the coments and advice I read..
somtimes I dont agree with or just dont want to except... Some of it sticks in my head even if some of it just goes in one ear out the other..
I'm starting to think I may have to start to grow up, but in a good way :-)

Coffeecup said...

Hi Marie, it's so good to get your feedback on the comments. It's odd talking about you as though you're a topic of discussion, lol! Hope you don't mind too much????

Yeah, you can take as much or as little of other people's opinions as you wish. It's so hard I know, and oh boy do I empathise with what you go through. How easy it is to make suggestions, but to even act upon my own best advice is sometimes too hard for me! :-/

PS Yes I do waffle on a bit lol!!!

SarahC♥ said...

I hope you didn't feel like i was being a bitch in my comment. I read it back and i think i sound a little harsh, but as i was writing it i was thinking about myself too, that i KNOW its only ME who is going to get ME better at the end of the day.

I think the steps you have made are fantastic and i've stressed that many times in my comments, so please, accept my apologies.


Marie said...

steph, no I dont mind at all..
I dont normaly write very much as I am not very good at writing, I think I may have spent more time making my english school work look pretty than study gramma etc.

your coment did not upset at all, and you have never come across as a bitch believe me!! Have met a few in my time, I should know.. lol

SarahC♥ said...

I do have my moments.. ;)

I'm glad i didn't piss you off!


Robert said...

Hi Steph & Sarah

Thanks, as always, for your support. And you are both spot on in your assessment of the situation.

Anonymous said...

Marie, having suffered from agoraphobia for over 30 years I tried everything - and I mean everything - to overcome it. Even when my agoraphobia was at its worst, when I felt faint and ill from the minute I left the house until the minute I returned to it, I held down a full-time job. Every day was a nightmare, from the travelling, to being in the office, dealing with the public, going for lunch with my colleagues - I exposed myself to my fear (terror would be a better word) on a daily basis.

So did my exposure to fear make me better? No, it didn't, not the slightest. Yes, I knew my feelings of faintness, dizziness, disorientation, nausea wouldn't kill me - I proved it every day to myself - but the symptoms never abated. The courage needed to keep on with this life was enormous, something no one who hasn't done it can appreciate. But I didn't get better and eventually, after years of daily torture, I had to give up work.

Over the years I tried every therapy, both conventional and complementary that I could. These included diet, hypnotism, medication, cognitive behaviour therapy, meditation, flooding, aromatherapy, faith healing, biofeedback, relaxation and countless others, far to many to mention. Some helped a little, some not at all, but not one of them freed me from my agoraphobia. I got tired of trying things that never worked, just as I got tired of explaining to people that agoraphobia didn't mean I was afraid of 'something out there', but was simply that as soon as I was 'out there' I felt PHYSICALLY ill. I could no more control the physical symptoms than could someone with hay fever think themselves better. In fact, that's exactly what it was like - an allergy, beyond my control.

But I am now totally free of it all, after more than 30 years. I read online about EFT (emotional freedom technique) and was impressed enough to give it a go, though honestly not expecting a great change because of all my past disappointments. I did the EFT tapping a few times, that's all. I went shopping with my husband, resigned to the fact that while I could visit some shops with him nearby I'd feel panicky if I couldn't see him, feel panicky if I couldn't quickly get back to the car. But I felt fine, absolutely no panic, no faintness, no dizziness. I thought it was a fluke, that IT would come back next time. I didn't do any more tapping - somehow I had no wish to. I went shopping again - no panic. I left my husband in one shop, telling him I was going up the street to Boots - talk about a mixture of amazement and worry on a husband's face! He couldn't believe this was his wife speaking and who could blame him? But it was and I went to Boots and shopped peacefully and happily, then went back to where I'd left my husband, but not in the scurrying back to safety way I'd done for 30 years. And that's it - I knew without a doubt I was cured. But I was scared to admit it to myself, the old habit of worry dies hard, yet I did know, beyond any doubt, deep down.

That was about 2 years ago and I feel as free of agoraphobia now as I did then and as I did over 30 years ago before the illness took hold. How do I think the EFT cured me? I don't know, but the simple fact is that EFT, though it stands for 'emotional freedom technique' involves physical tapping. And I think, as I know many researchers do now, that agoraphobia is a physical illness. It has a physical cause, IMO, but not one that has yet been found - it could be in the brain structure, the ears, the spine, the blood - who knows?

I believe the physical cause starts the illness off, but then there is a natural reluctance to expose oneself to daily feelings of severe illneess and that's where the mental component comes in, though I don't think there's anything 'mental' about that. If someone had a severe form of flu that never went away, meaning they felt weak and ill every single day, would they be able to go out and live a normal life? I doubt it. Yes, they COULD go out but every day would be a struggle and the constant trying to live a normal life wouldn't make them better - how could it? Well, I think it's the same for agorphobics - the physical symptoms are so overwhelming, so distressing, that they make a normal life impossible. An agoraphobic CAN go out, CAN do things, but what use is that if every moment is misery?

I know I'm sticking my neck out here and will most likely be shot down in flames, but I get so angry when I read self-righteous nonsense about 'enablers' and all the rest of it. If you have an allergy you won't be able to get rid of it by confronting its symptoms. Ditto with diabetes, with heart disease, with arthritis. And with agoraphobia, at least for the type of agoraphobia I had and I suspect with the type of agoraphobia millions of people have. Something is wrong PHYSICALLY somewhere in the agoraphobic's body and that something needs to be fixed. I was lucky because the EFT tapping did it for me. Something clicked into place somewhere, something changed, with those physical tappings. My brain was re-programmed maybe? Possibly - because the brain is a physical organ and that may be where something physical needed adjustment. But I didn't THINK myself better, I didn't confront my fear, I got rid of it. Oddly enough, the proponents of EFT think that by thinking about your fears while doing the tapping 'rewires' your brain - I think they are probably right.

I stress that all of this is MY OWN OPINION - I can speak for no one but myself. But I've been so interested in my own recovery that I've researched the whole subject of a physical basis for agoraphobia on the Internet and found that a surprisingly high number of experts agree with me. The general consensus is that the physical symptoms eventually cause the mental symptoms, but that the illness has a definite physical basis. And it's this physical basis that needs to be dealt with.

Apologies to all for such a long comment and especially to Marie who I believe tried EFT but it didn't work for her. I would urge her and others to look for some other way to right the physical cause, maybe by finding out about the series of physical exercises designed to inhibit the infant reflexes that so many agoraphobics have and that can be the cause of the dizziness and disorientation. This is something I would have tried if the EFT hadn't worked for me.

Good luck to all. We need luck and we need proper research into this illness, as its true cause has yet to be found.

Robert said...

Dear ....

Thanks for taking the time to write a comment here.

When Marie was trying exposure, things got better for her, and she believes - rightly or wrongly - that this is the road to an agoraphobia-free life. She's got a CBT therapists who also does EFT.

But the truth is that she never sticks at any therapy she tries. She's not currently trying anything. Perhaps one day...

lunuala said...

apologies in advance for my poor writing


That said, Marie and I do share some similiarities
I've had agoraphobia, social anxiety and depression since I was approx 10 years old.

I have had a few periods of time where I've lived on my own and held a job but those times have been far and few between.

I'm currently living with family . I am also coparenting (w/ my sibling) a beautiful little girl whose Mom passed away.
Raising her been wonderful but challenging. On one hand I feel like a terrific parent. We write poetry, paint, play, read but I have also never taken her to school, to the beach or to the movies.
I go outside in the yard with her or to my fathers house but that's pretty much the extent of it. I don't think it makes me any less loving as a parent but I'm afraid in time it wil make me less loveable to her.

It's scary. I'm trying to challenge myself to slowly do more because I don't want to lose her as she gets older.

I feel for Marie and for you Robert. I think you are both doing the very best you can w/ a very tough situation. It's very difficult to change who you are. I think agoraphobia is similiar to having cancer, excuse the poor analogy but it really is a disease. it's debilitaing and it's crippling....

I don't know what the answer is, I just know communicating help.

One thing to remember - when you fell in love with Marie, you fell in love with the "whole" of her, not just the potential of who she might one day be..I know having children has made your life and her life a whole lot more complicated but the changes (if they come) may be slow. Be patient. Be kind.

Here's hoping for a brighter future for all of us...

BlyJette said...

*Hugs* It's good that you decided to stick with her, through thick and thin... I hope she gets better, each day.. I know it's like a roller coster sometimes, but hopefully she'll have more up days in the future.

Robert said...

Hi lunuala and thanks for "delurking". You are most welcome here.

As you mentioned, Marie had agoraphobia when I met her. I spent a while considering whether I could cope with this on a long-term (or even permanent) basis, before I followed my heart and committed myself to spending the rest of my life with her. So I'm going to stick with her no matter what, and she knows that.

Although juggling the children's requirements and those of Marie sometimes causes a conflict of interests, I think that we've been reasonably successful so far. I just worry about the amount of her children's life that Marie is missing, and the amount of activities the children rely on me to provide. But I have no control over this.

Robert said...

Hi blyjette,

Despite agoraphobia, meeting Marie was the luckiest day of my life! She's not having a good time right now, but she IS talking about trying to improve things. But no matter what happens, I'm in there to the end!

Richard said...
This comment has been removed by the author.
Richard said...

Robert, thanks for coming by the Daily Husband and especially for the tip on Ad-ware. I installed it on my Desktop this morning.

I am sorry to hear about your wife's condition.

I have a friend on the internet who is agoraphobic. Here is the link to her blog.

I hope it will help you and your wife to know her.

Thanks again,


Anonymous said...

Heya Marie and Robert, I suffer from agoraphobia and live in the Bristol area too! I just found this blog by accident. I am trying my best to get well, what I hate most is when I kinda get quite a bit better then I like totally relapse.

I just found out about this self-help group called changes which I am thinking of trying, I guess to try to challenge my thinking and to try to take some more responsibility for myself, but I am really anxious to go - have you ever been to it?

I also came across something called triumph over phobia ( ) which is more anxiety/phobia specific than changes, but you have to like sign up and stuff and they are more specific about methods etc - this one makes me even more anxious and I not sure if it'll fit in with the very good hypnotherapist I am seeing at the moment so i think I will try the changes one first.

I am hoping a self-help group would help with future relapses - I know some people think you can be cured, but I know even if I get better I will always be a recovering agoraphobic as my brain just seems to be wired that way and I guess I think I need some kind of support to hold me to account and not allow myself to relapse into the familiar behaviour :s (Like basically I must go out almost everyday or I start to relapse.)

I don't think they like tell you how to fix yourself or whatever, they just give that support that u can do it and encourage you to challenge yourself - scary, but necessary I think, because sometimes everyone just kinda accepts I am like this - me included and I don't think that's good for me. However regarding the idea of victim and enabler; my mum has provided me with a lot of support over the years and if she hadn't taken me out like she has, I think I would be completely housebound. Instead I am now finding I can go to local shops by myself and it is partially because she took me out and helped me become more comfortable going out. She also encouraged me to do stuff myself, at first things like going to a different section of a shop or maybe stopping at the shop near our house on the way home and suggesting I walk on home, later more complicated things.

I have just recently arranged with social services/nhs for me to have direct payments to pay for the care i need, as my mum is not currently really able to help me enough/as much as she was. They have assessed me as needing quite a few hours and I will be able to hire someone to take me to local community groups and volunteering and help me break out of the agoraphobia trap, re-learn my independence and remember how to do stuff etc.

Anyways now you know like my life story lol! - Sorry! I think the longer anxiety goes on the harder it is to recover; in some ways I have lost my confidence and forgotten how to do stuff as it has been 4 years since I was able to go out with any great independence. I am hopeful I will make progress.

I hope you both are doing ok and I wish you well as you continue to traverse the agoraphobia journey.

p.s. I'm kookycrafter on nomorepanic but I have only been on a few times.

disa said...