Sunday, 15 November 2009

Agoraphobia Works! (for some)



If you suffer from a panic/anxiety disorder, you might find this post makes you angry.  You may find it insulting/controversial/ignorant/thought provoking/just plain wrong.  If so, please let me know!  I want to be wrong!  But I need evidence to make me change my mind.

Over the past years, I've met quite a few panic/anxiety sufferers.  The majority have got over or are getting over their problems, but some, like Marie, haven't.

Now, we all know that agoraphobia is not an incurable problem.  For example, how many housebound agoraphobics have chosen to stay in a burning house to experience voluntary incineration?  How many agoraphobics have refused life-saving surgery?  I haven't heard of any.  It would seem that if you give an agoraphobia sufferer, no matter how severe their condition, sufficient incentive, they can - at least temporarily - overcome their agoraphobia.  And if it's possible to set agoraphobia aside temporarily, then it's possible to remove it permanently.  Well, that's my theory, anyway.  Can you prove me wrong?

I was interested to learn why some people don't seem to be able to fight their agoraphobia.  Here are four of their stories.  Their names and any details which could identify them have been changed/omitted.  The fact that none of them is male is simply because I haven't met an unrecovered agoraphobic man (although I know of one online - but don't know enough about his story to include below).

Anne was a happily married twenty-something with no children when she was raped.  Her husband considered her "soiled" and left.  Scared of another rape and having lost her trust in men, Anne became afraid to leave her house.  She has been almost totally housebound ever since, and she's in her sixties now.  She doesn't work but instead devotes her life to her pets and spends most of her time on the internet.  She considers that her agoraphobia is not adversely affecting her life any more.  Anne has spent most of her life avoiding dealing with her mistrust in men.  Was agoraphobia a convenient excuse for choosing to be reclusive?

Betty got married and relocated far away from her friends and family due to her husband's job.  They had a good life together for a few years, although his possessive nature meant that Betty was unable to form friendships outside of their marriage.  Then she found out that he had been having an affair with her best friend.  Despite assuring her that the affair was over, he continued to see this woman.  Betty became insecure but had no one to turn to.  She became unwell.  This got her extra attention from her husband at first, but he began to tire of her attention-seeking "unwell" bouts.  Betty began to have panic attacks, and her husband got fed up with her and deserted her for her (former) best friend.  Totally humiliated, Betty moved back to her parents' house.  She tried to keep her relationship with her husband going by communicating with him by text and online, but he responded by taunting her with glowing reports of his new relationship and telling her how useless he considered her to be while she was with him.  Fifteen years and much therapy later, Betty is severely agoraphobic and despite being desperately lonely still believes that she's in love with her errant husband.  She lives on State benefits and with the assistance of her parents.  Is her agoraphobia conveniently hiding her inability to deal with the breakup of her marriage?


Carrie was psychologically abused by her father throughout her childhood.  She is married and has a lovely 10 year old daughter.  Her marriage has never been "ideal" because her husband pays her and their daughter almost no attention.  She works part-time in a convenience store a block away from her home and spends the rest of her time washing, cleaning, ironing, cooking, gardening and decorating.  Her husband has a full-time job and spends the rest of his time playing computer games.  He holidays with his mates.  He constantly puts Carrie down.  Nothing she does is good enough.  Her regularly tells her that she's ugly, although in reality she is an attractive woman.  This constant pressure has led Carrie through anorexia, depression and irritable bowel syndrome to panic/anxiety disorder.  Now agoraphobic, she cannot leave her area.  She also has some social phobia.  She believes that she still loves her husband but, despite recognising that he is abusing her, cannot imagine life without him.  All medications and therapies - and there have been many - have proved ineffective.  Is agoraphobia preferable to facing the reality of a sham marriage?

Denise is a stunningly beautiful 25 year old single girl living in a small rural town with her mother.  Despite her unpretentious beauty and popularity at school, Denise has always lacked self confidence.  After leaving school aged 17, Denise had a series of jobs in a nearby city in the beauty and fashion industries.  Mainly due to her lack of belief in her capabilities, she was spectacularly unsuccessful in all of them.  She began to have panic attacks at work, and this was an extra contributory factor in her losing jobs.  Soon she began to have panic attacks at job interviews or on the way to job interviews. In time, this escalated to the point where she became completely unable to leave her small town.  Due to her looks and her sexual expertise, she has had lots of boyfriends.  They all leave when they discover just how much her agoraphobia controls her life, but there are plenty more blokes ready to take their place in her bed.  Denise lives off State benefits and all the treatment for agoraphobia she has received so far has failed to help her.  Does agoraphobia mask her fear of getting a job?

These ladies have one thing in common.  They don't function as normal adults.  Agoraphobia is a convenient excuse to avoid changing their lives.  Sure, their freedom is limited: but is this limitation voluntary?  From the information I have been able to glean, I believe that it is.  While "suffering" from agoraphobia, these ladies can:
  • Avoid having to work for a living
  • Avoid relationships where the partners take equal responsibilities
  • Avoid going anywhere they don't want to go to
  • Avoid taking full responsibility for their lives
  • Get more than usual attention and/or care
  • Avoid making life-changing decisions
As far as I can see, agoraphobia works for these ladies.  By making agoraphobia the reason why they can't change their lives, they can avoid tackling their real issues.

And what about Marie?

Over the years, her level of agoraphobia has changed many times.  When the incentive is great enough, she can do almost anything.  For example, although today - just the same as when I met her - she cannot cross the street to go to a shop or visit the doctor, she has previously gone round supermarkets, furniture stores, busy markets, accompanied me to a hospital appointment, visited the x-ray department in the middle of a large hospital, taken a theory test - on her own - for her driving licence on the 2nd floor of an office block, given birth to two children in hospital (but won't visit the same hospital today)....I could go on, but you get the picture.

Here's what she has told me -
  • I'll get out of agoraphobia one day
  • I know how to get out of agoraphobia, but it's not easy
  • I don't feel strong enough to change things yet
  • I'll start getting out of agoraphobia when I'm ready
All of the above means just one thing - Marie doesn't have sufficient incentive to change her life.  She is comfortable with her current quality of life.  Agoraphobia works for her, too.  Her agoraphobia isn't her main problem - her main problem is whatever is preventing her from taking the necessary steps to conquer it.

Marie was agoraphobic when we met, and I accepted her as my life partner as she was (and is).  If she never changes, I'll still want to be with her. It's my belief that Marie could get much more out of life if she would shed her agoraphobia.  I know that she accepts this, at least in part, but she can also see that her responsibilities would increase.  Is this what is killing off her incentive to change?  Is she scared to assume the full responsibility of being a fully functioning adult?  The story continues...

38 comments:

Coffeecup said...

I think describing agoraphobia as 'convenient' is definitely going to antagonise. It really doesn't work as an avoidance tactic unless you prefer feeling inadequate, depressed, lonely, miserable and ashamed (in my case) to being 'normal'?

The idea of taking on responsibilites when you are at a low point is hard to take on board. It is too much of a leap from whatever kind of dependancy you have to full working independance. To aspire to that is fine optimism, but seeing it that way is like taking on a full school curriculum at once, instead of bite size lessons. Realistically a baby steps approach would be preferable.

I honestly don't know. Are alcoholics actually ill or are they just chosing to drink to avoid life? There's argument to suggest a genetic predisposition to certain groups of people becoming agoraphobic, depressed, obese, alcoholic, and so on. It's not a cop out or an excuse but what if it's true? Add to that 'poor parenting' or bad role modelling, some life stresses and a trauma or two and some people react with panic attacks. Not a choice at all. You would have to believe you can get better with the same blind faith that makes some people trust in an invisible God. I HOPE it is possible. This means trusting either yourself or in someone else. No one has provided any solutions that have worked for me and ten years of trying to overcome these panic attacks and still they come persistently. That's not a lifestyle choice.

For me, I don't trust the thoughts in my own head. It's not convenient and it's certainly not a choice. When your brain is feeding you negative information you believe it totally, as much as everyone else listens to their own inner voice and instincts when they are giving them good messages. I feel just as anxious at home as I do outside. What if it really is brain chemistry gone wrong? You said yourself the moment Marie messes with her medication she feels the consequences. No matter what I've done to try and beat this crap it continues to get worse. I'm not comfortable or happy, or contented. Anxiety has messed things up rather than the other way around. It wasn't a comfort blanket.

I see what you mean about agoraphobia not being the problem though. The truth of the matter lies deeper and probably would take some kind of psychotherapy to address and neither incentive nor will power is going to fix it. We do certain things because we have to but you know yourself that they require the kind of strength that is hard to sustain. When you're bombarded with those horrible symptoms terrified of your own thoughts then with the best intentions in the world it is actually easier, if you wish to put it that way, to avoid that kind of stress unless it's absolutely necessary.

PS. Marie knows how to get out of it? Wanna share?

agoraphob said...

Hi, I have been following your blog for quite some time. I am a 30year old female agoraphobic.

Two years ago I quit taking the medication klonopin. Before, I had anxiety and epression but nothing that stopped me from living. I traveled, worked at the hospital as a nurse, went out and did things. It wasnt until I quit taking klonopin that I became agoraphobic.

I will acknowledge that I have always had low self confidence, low self esteem,and a lot of self doubt...now while this led to anxiety issues, it was manageable. what I didnt realize it is that I had really bad OCD (no obvious compulsions) and like coffeecup dont trust my thoughts (which are OCD thoughts) and they cause me to panic.

I do think that I am not happy with my situation and I am trying everyday to change it (i go out alone). But the thing is...even if we know the reasons why we might be agoraphobic (i.e low self esteem, avoiding responsibility, jobs, etc) it isnt easy to change it.

I wish I could just get in my car and go and even though I isulaie his everyday and at times trly believe I am capapble of doing it, as soon as I get to a certain point, I panic. Some times I push through it and otehr times I just cant.

it isnt easy...

I suspect ,arie is just telling herself she can get out of it whenever she wants to to keep her self going. Otherwise whats the point?

Nikki said...

I don't know where to start on this!

Ive had emetophobia issues ever since I was little.
Ive suffered with depression on an off since I was 18 (my Mum, and Grandmother have also)..

In 2003 when my boyfriend at the time was killed in a motorbike accident I started to stay in more and more. The depression hit me big time, as did the emetophobia as I was 6 wks pregnant at the time.. I just had a morbid fear that I could catch a bug that could harm me or the baby, or perhaps I could have an accident that would harm one or both of us. It just became my single most priority to keep us safe.. Safe for me meant staying home.
When my son was about 6 months old I had my first panic attack in the cinema, not knowing at the time what had actually happened I began avoidance..
When I started facing up I opted for counselling, but, at the time I thought my problem lay with the death of my boyfriend and the fact Id not dealt with it sooner. When the counseling came and I started talking I realized my biggest issue was with being unable to leave the house, but I was too ashamed to admit I was struggling with something as basic as leaving my own home. At the time I hadnt told anyone what was happening, it was embarrassing.. In the end I couldnt face attending the counselling.
What is my agoraphobia masking?

I seem to try as hard as I can but dont get very far.. its been 5 years and I feel worse than I did at the beginning.
Ive tried so many books but I genuinely cant concentrate to get any of the advice to sink in.. (hence answering your question being hard, its a lot to sink in and get my head around!). Medication doesnt work well with me either.
Counselling was stopped by my gp when i agreed to cbt..
The cbt im still waiting for.

So I do want help, I do want to get better, but sometimes, infact the majority of the time, I feel the help isnt there.

I genuinely dont feel theres not enough help out there, not in terms of real people. Too many GP's are quick to give out prescriptions rather than help you deal with the actual situation so you can put actions into practise to overcome things. Theres no support either.

You mentioned these:
Avoid having to work for a living.
I do want to work, I genuinely do. Its not like a holiday for me, like im sat home living it up, I feel guilty & trapped in my own home, consumed with fear some days, some without reasonable explanation. I cant tell you why one day I could go into a shopping park, then the next Im too scared to walk inside the local co-op, it doesnt make sense, if it did I wouldnt be in this mess.

Avoid relationships where the partners take equal responsibilities. Im often apologizing for the fact my fiance has to work, pay the bills etc, I genuinely want to help him and take responsibility too.

Avoid going anywhere they don't want to go to. When Im struggling I say. When I just dont want to go a)because its a place I dont care for, or b) Id rather stay home and chill out, I say so now.

Avoid taking full responsibility for their lives. I dont quite get how this is meant? No one else takes responsibility for my life, Im well aware of the situation Im in and what got me here.

Get more than usual attention and/or care. I cant say I get more attention. Theres limited ppl that know whats going on, I certainly dont want it bringing up, nor do I want to seek attention for it. Im embarassed enough, its not something I shout about.

Avoid making life-changing decisions. such as? I moved 30 plus miles away from all I knew 2yrs ago, mainly in the hopes of giving my son a better life. Perhaps this isnt the type of thing youre talking about?

Agoraphobia is certainly not something I want for myself or my family, its not something im chosing so I dont have to face up, take responsibility or anything else.

Nikki said...

sorry, this part should read: 'I genuinely feel theres not enough help out there'

And btw, I wasn't having a dig at anyone who is on medication to help their anxiety/agoraphobia/panic attacks etc etc. I just feel that too many times its the only thing, or the first thing a doctor will offer.
God knows Ive asked so many times for a real person, someone to talk to, to offer support or advice, only to be told no and end up with a prescription for prozac instead.

Robert said...

CC - First of all, I knew that this post would be controversial, but it is not intended to be accusatory, judgemental or insulting. However, I hope that it would generate a conversation. Secondly, I would never presume to know you well enough to know what caused or maintains your agoraphobia and I understand that the reasons behind anyone becoming agoraphobic are complex. Thirdly, I didn't wish to imply that anyone would actually choose to have agoraphobia and/or panic attacks.

Now let me answer some of your questions/points -

If one feels inadequate, depressed, lonely, miserable and ashamed - i.e. have seriously low self esteem - one wouldn't want to go out to advertise this fact, would one? Agoraphobia isn't really much of an inconvenience, is it? If they could feel adequate, lose their depression, have good company, they would no longer feel miserable or ashamed, would they? Do you think that the agoraphobia would remain, anyway? If it did, would it be easier to get rid of, if in that frame of mind? I'd be interested in your opinion.

"Are alcoholics actually ill or are they just chosing to drink to avoid life?" Answer: the vast majority (possibly all of them) are choosing to avoid "real" life. I got this from several alcoholic friends, as well as reading about it. Ditto drug addicts. (I used to be in the entertainment business, where alcohol/drug dependancy is rife.) Alcoholism and drug dependency are known avoidance behaviour patterns with the added dimension of physical addiction.

I don't know enough about genetic predispositions to make any comments.

Agoraphobia is more prevalent in children of anxiety sufferers. The most widely held view is that in these cases, agoraphobia is a learned behaviour.

"What if it really is brain chemistry gone wrong?" I don't know enough about brain chemistry abnormalities to make any comments, but it most certainly isn't a widely held view that this is a factor in agoraphobia. There is currently no known chemical "cure" for agoraphobia.

Lastly, "Marie knows how to get out of it? Wanna share?" In less than an hour, Charles Linden had removed Marie's agoraphobia and for over an hour she was out walking around town & around the local B & Q megastore with hardly a care. CL told her to go out every day until walking around without panicking became a normal behaviour pattern. When home, listening to his CDs, she was, for several weeks, able to do many things previously impossible. Now she doesn't listen to the CDs or try to go out anywhere, and her agoraphobia is as bad as it ever was. She knows that she doesn't have to be agoraphobic - she just doesn't know how to motivate herself to defeating it.

Robert said...

Hi agoraphob and thanks for commenting. As a fat boy with ginger hair and no friends, I grew up with serious self confidence issues which seriously affected my adult life & relationships. It took me decades to sort myself out. I also suffered panic attacks due to health anxiety. I had real illness symptoms caused by stress and I felt - illogically - that I was going to die. That took a couple of years to sort out.

You have indicated what you believe has caused or has contributed to causing your agoraphobia. If I was in your shoes, I would concentrate on building up my self confidence. Believe me - and I speak from experience - everything else will be easier to deal with.

You said "it isn't easy" and you're dammned right! As you can see from what I said, it took me decades to sort myself out. But it's worth the effort.

I haven't read through your blog yet, but I shall as soon as I get the time. See you soon!

Robert said...

Nikki - I hope that I didn't imply that people choose to be agopraphobic. I don't know anyone who has done that. I just wondered why some people can get rid of it while others can't.

I haven't read up about emetophobia, and my knowledge of the causes of depression is scant. So although I've read all of your blog, I'm not really in a position to comment on your particular circumstances.

However, here's a question for you...

When you had your panic attack in the cinema about a year after your boyfriend died, and you were suffering from emetophobia, depression, bereavement issues and (almost certainly) PTSD...could this have been your brain telling you that you weren't in a position to cope with the wide world at that time?

I know that your emetophobia has been giving you a feeling of worthlessness as a mother and contributing to depression, so perhaps you should concentrate on beating that instead nof agorapohobia? I'm only asking, because I have no qualifications in this field and I don't know you very well. So feel free to tell me to bugger off with my silly questions, if you like.

"Too many GP's are quick to give out prescriptions rather than help you deal with the actual situation." My GP told me that lots of people get "cured" by pills, even when the pills have no real benefit, because they believe that the pills will help them. That is why most GPs go down the prescription road as a first line of attack. If the pills don't work, they have to recommend you a therapy (eg CBT) which is outside their field of expertise. Also, pills are cheaper than therapists.

I'm sorry that you have to wait so long for CBT. Bu the good news is that CBT is often successful at fighting emetophobia, so it seems that this is the way to go. Just don't expect too much too quickly!

Nikki said...

When I had the first panic attack Im pretty sure Id been some places, I know I had.. Id been shopping (usually to retail parks with the car nr by, I didnt realise it was always where I chose to be), Id been out in open parks for walks with my son.. But ultimately I was still depressed, I didnt like seeing new familes, I was a single Mum and I didnt want to be. I also found the new mum thing hard, getting all the gear ready, going out alone, making sure I was in a suitable place come feeding times (I was breastfeeding!).. It all felt more of a chore than a nice thing to do, so I stayed home, usually sat in the garden with my son.
Then came my night out in the cinema, I just felt trapped, surrounded by too many ppl, and ultimately I was feeling a little off colour.. It all kicked off.

I agree with you on the pills, I know theyre cheaper etc, but somehow I think its just wrong to not be given all the options. I know it will help some, many even, but what happens when the tablets are stopped?
I was on Sertraline for about a year, I felt they were helping (they were by no means the cure I naively hoped they were. I even asked what else I should do, given no more advice than 'see me in 6 weeks'.. then 'In 3 months' etc etc), then 6 months after Id been weaned off them the problems were back even bigger than before. I genuinely thought (at the time) that I was getting better, that somewhere along the lines Id learned how to cope, I obv hadnt. But the answer to that, to being back at square one 'try a different type'.
I feel angry myself, its my own issues I know, but I just feel that had I been offered coping strategies years ago that I wouldnt be in this mess, and it only seems an even bigger mess than before, more unbearable than before, so now its even harder to cope with.

At my initial appointment for CBT the therapist decided I was suffering with low self esteem, that my issues stemmed from that, rather than the emetophobia, however I agree with you, I believe my problems lay there.. Afterall, the biggest thing for me is being ill outside my own home, yes I know I will feel ashamed if someone sees me ill (-the low self esteem verdict came from that part), but ultimately Im scared of being ill, or catching a bug! Silly? Perhaps.

:)

ladythinker said...

Hello Robert,
Here are a few of my thoughts on this issue/discussion.

I think that many more women than men suffer from anxiety/agoraphobia etc as I think that our hormonal highs/lows add to fluctuating physical feelings of 'wellness'.

You said "I didn't wish to imply that anyone would actually choose to have agoraphobia and/or panic attacks". Well, I think that many of us have experienced the very real feelings associated with panic attacks and it's how one copes with them that influences future control over the symptoms.

I can well remember my first feeling of faintness,sweating/hot flush and racing heart while standing in s supermarket queue. I thought I was about to collapse and die. My second thought was "this is a panic attack".

I wanted to rush outside, into the fresh air and get home ASAP. But I told myself that if i did so then if I had another attack I'd want to do so again - so I told myself I HAD to stand and take it - that it "would pass".

Since then - 20 years ago I have had many attacks - each time I know I just have to grin and bear it - it does pass and while it goes on it feels awful. But it hasn't taken over my life. I have been practicising a deep breathing relaxation technique which helps restore me to 'normal mode' faster.
I've also noticed that however awful I feel - if I start to engage in chat with someone else all these physical symptoms either stop or I no longer notice them .. so there is some kind of 'mind over matter' going on . .

Perhaps it's something that we should all talk about more openly so we don't feel as if we have a physical illness or that we are going out of our mind . . If everyone talked more openly then we could all be more prepared on ways to cope if or when it happens to us.

Panic Attack said...

Thank you for sharing your experiences and thoughts. Sharing them is a matter of helping others. I will share this to my team and hope they will also share this to
a lot of people. Thanks!

Gill - That British Woman said...

I think some people chose to be agoraphobic as an excuse for more deeper issues.

Gill in Canada

Sarah♥ said...

Bottom line here...is that only WE can get ourselves well.

x

Sarah♥ said...

What i do find amazing is that Marie over the years i have been reading your blog has had SO much progress in some areas, like when she drove 15 miles recently and about a year and a half ago, she drove (i think, correct me if i am wrong) to meet you. She's stayed up in Scotland...she's gone into Orla's school...SO MUCH PROGRESS.

When i was speaking with Ruby Wax yesterday, she mentioned that perhaps agoraphobia turns into a "habit". It's easy sometimes to stay with the "habit" than to fight it, because the feelings, thoughts and sensations that you experience when you are fighting, are a little to hard to bare. YES I KNOW PANIC WON'T KILL ME/DRIVE ME MAD AND YES I KNOW IF I THROW UP - WHO CARES?...but they are things that DO bother me...and things that i do find really hard to overcome.

I can assure EVERYONE that if i was able to wave a magic wand and be back to that 21 year old carefree girl i would. Living as an agoraphobic wasn't mentioned anywhere in my life plan.

Combined with the constant anger with yourself for being this way and resentment that your peers are living normally...not forgetting the depression, self loathing...and did i mention anger???

Perhaps we could stop being angry with ourselves and get angry with panic?

Saying ALL this...i kind of know what Robert is getting at.

The other day, i had LOADS to do. Mum wasn't available, so i HAD to go with my boyfriend. I was panic free. And last Monday, i needed an emergency doctors appointment and again, my mother wasn't free to take me, so again, i HAD to go with my fella, it wasn't easy...but sometimes panic can take a back seat (on a good day!)...but let me tell you this. When i had been that bad and you see your son go off in an ambulance and you are stuck at home, its the WORST feeling in the entire world.

I am NOT agoraphobic for fun!!!!!!

Karen said...

Heya Robert,
I've never commented on your blog before but I do read it. As an agoraphobic recoveree(I know that's not a real word),I do see where you are coming from.For me personally when I was housebound it was a living hell,something I would never wish on anyone, but it was much easier than living,working etc, at that time I just couldn't cope with life and I think I just gave up.I think agoraphobia comes on you as a result of traumas,stress etc, but from my experience I think I held on to it because it was easier to let people do things for me,while I hid away from life as I just felt so broken and weak, but the guilt that comes with it,is nearly unbearable, and unfortunately at that time the fear was stronger than my want of living my life with my son and fiance. I am now flying after 2 years of some serious hard work and facing up to my fears. I really feel I am getting somewhere at long last, but I genuinely feel you have to feel strong enough to fight it.

Nechtan said...

Hi Robert,

If you don't feel you can genuinely cope with the high anxiety or panic that venturing out causes the agoraphobic then there is little point in doing so- you'll only give yourself grief. Personally I think you need self confidence, belief in what you are doing and a certain sense of well being. From experience this in itself can be a very frustrating thing when you want to go out and are sick fed up of being stuck indoors all day, every day. But if you are actually well in yourself and are not venturing out because you don't have to then I would say that was being comfortable with your agoraphobia. It would be interesting to know if that is the case with some people but I can only speak for my own situation and say that it is not the case with me.

But there is another factor for the long term. If you go out and are lucky enough to be anxiety free or have very little anxiety then you can keep it going. But lots of people have periods of progress that last a set period and then they revert back the way again. Some may see that as down to lack of will, drive, interest or whatever. Again I can only speak for myself but when this has happened to me it has been the result of prolonged anxiety taking its toll. Although we find we can get out it is still a constant fight mentally which impacts physically over time. Motivation can get us so far but inevitably if our bodies start to tire then we find it harder. This is why I think it is better to keep moving slowly rather than trying to race forward.

I guess when it comes down to it then its a case of how happy you are with your lot. If you are agoraphobic and see no need to change things as they are then that's fine- be comfortable with it. For me though I have a wife and 3 kids living in a small flat which is a situation for them I don't want but can't at the moment change. There are places I'd like to go- I miss out on friend reunions, family meals, holidays, etc. There are so many things I'd love to do if I could but I just cannot. And even lately by pushing myself I have been able to do some new things but have very rarely enjoyed them because the anxiety is always there tormenting me. So in my case I'm not comfortable to be agoraphobic. In fact I would definitely prefer not to be. To have your pride stripped away by something you cannot control is soul destroying. To have to rely on handouts to get by without being able to wish for more is motivation enough to get back into the real world but unfortunately I've always found that motivation is never enough.

It is an interesting question to pose. Every time I have reached a new milestone lately my wife has congratulated me. It is obviously meant with the best intention but it makes me feel a little odd because I'm not doing anything special to warrant it. I've not suddenly found resolve or trying harder its just that for some reason my body, for the moment, is not reacting as badly as it usually does. And this is allowing me to push myself. I haven't done anything to make this happen, its just happened. But its still prone to panic at any time.

And by the same token I remember many times in the past when I have been making progress then it all has come to a stop. What I remember most is the disappointment felt by my wife and the subsequent guilt that I have felt as if I had done something wrong when again I hadn't done anything different.

Ultimately though the biggest problem is that there is no set way to recovery. That would be the real test. If there was one way which worked for all then we would know who wanted out of their problems and who was content to stay with them. The lack of a defined path to recovery doesn't help. Most people are left in bewilderment to get on with it without any support or understanding and instead constantly having to justify a condition that cannot be diagnosed in the way a disease or broken bone can.

All the best

Nechtan

Robert said...

Ladythinker - I also have suffered panic attacks, one of which was so severe that even the hospital thought that I had a heart problem! I "got over" the issues that caused me to panic, but I can still remember the awful feeling...

However, it's an interesting idea that perhaps how panic attacks occur and feel should be more widely publicised. This would, of course, help those who would subsequently go on to have one or more panic attacks, and make them less of a hidden problem. And it is conjectured that about the population has some kind of panic disorder.

Robert said...

Panic Attack - if your website had more than 3 items - all for sale through you - I would take you seriously. I might be wrong (though I doubt it) but imho your site is primarily an income generator.

Robert said...

Gill - I totally agree with you.

Sarah - Luckily my post is called Agoraphobia Works for some people since you obviously don't think that it's working for you. However, you have other problems. If you were able to be free of them, do you think that you would be able to get rid of agoraphobia more easily?

Karen - I'm glad that you managed to escape agoraphobia. You're an inspiration to other sufferers. Did you use any particular method? I'd be v interested to find out how you did it.

Nechtan - Because I know that you consistently fight your agoraphobia (and with some success), I can see that there's no reason to suppose that it is working for you. The people I wrote about don't seem to make a great effort to get rid of it. If you go to the No More Panic site, you will find many people who don't seem to want to change. They run down any aids suggested by others - "That doesn't work...I tried that for a couple of days and it didn't help..." - and I've read posts from some who say they WILL NOT try an anxiety reducing programme because they don't want to make someone rich by buying it/they don't like the person promoting it/they don't believe that it works (without trying it first!)/it sounds too good to be true...and many more silly reasons. I think people should be encouraged to examine where their agoraphobia came from, to see if it has developed to mask an earlier problem which they found too difficult to fight. If you had a pain in your chest, the doctor would try to work out what was causing it - heart problems, indigestion, muscular problems, etc. He would NOT give you pain killers or suggest yoga or acupuncture and send you on your way. But tell him you've got agoraphobia and he will almost NEVER investigate the cause. He'll just give you pills/CBT/psychotherapy/hypnosis straight away! Do you think this is the right way to look at it?

Nechtan said...

Hi Robert,

NMP for me was an eye opener so I completely agree with you. Before Charles Linden posed a similar suggestion I would never have thought anyone would be comfortable with agoraphobia so it was a shock to see so many agree with him. It definitely is the case that some people are not willing to change. I still can't understand it though but only from equating it to my own situation. Its not an enjoyable existance- and existance is exactly what it is because its definitely not living. But there is also a thin line between being comfortable in not confronting panic and being too scared to do so.

The point about the GP is spot on. I visited about 4 different GPs who did do general invistigations but noot for an anxiety related problem. I didn't know what it was and obviously they never so gave me swabs, blood tests and the like which led to various pills and nasal sprays, etc. I only found out my problem through a big panic attack which if I hadn't had would still have me thinking there was something physically wrong with me. As soon as that was established any investigation stopped, as you said, and although I was referred I am now left to my own devices like so many other people.

There is logic I think in your reasoning for investigating why it is happening. I have found over the past year or so that the only way to get anywhere near an understanding is self analysis and self discovery. We know ourselves best and no outsider is going to know us better no matter how much they think they know about the condition- in fact some "experts" can be detremental. But I do wish GPs were better equipped to notice the signs firstly and secondly provide information. I basically diagnosed myself and any information I have on anxiety I have had to find myself too.

I'm glad you made this post as I think its a good important discussion and it is very interesting to read everyone's viewpoint.

All the best

Nechtan

Karen said...

Heya Robert,

This is my second time to recover and it was the hardest thing I've ever had to do,much harder than the first time, I still have a way to go. For me, I tried anything and everything I could,and I put 110% into what I did, I gave my heart and soul, my absolute everything. I think what holds people back from recovery is crippling fear that is so strong and overpowering you can hardly breathe, it's only when the want to living starts to get a little stronger than the fear can you attempt to start recovery. I don't think there's is any one method for overcoming this, you need to try everything until you find what works for you. ut as I said until you find that little bit of fight in you(and it only needs to be a little bit) can you attempt it. I do agree there is very little help out there but there is some. I went from being housebound,to now 2years later back working, back doing some driving(which I really never thought I would drive again), I can go to pub, restaurants,concerts.There are some things I am still uncomfortable with doing,but I am working on it and I know I will get there. One thing I am 100% sure of is nobody would want to have agoraphobia, it just becomes stronger than you,sometimes you let it smother you but you can overcome it, if I can anyone can.

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Karen said...

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Coffeecup said...

Hi Robert, were you suggesting it's me who goes out advertising my own 'seriously low self esteem?' Does sitting in my bedroom secretly blogging hopefully with a degree of anonymity constitute that? No one in my real life is aware of the extent of my particular problems as I hide as much of the psychological emotional stuff as I can, and out of shame do not let people get close enough to find out. Maybe that's what the agoraphobia is masking? Low self esteem? Not sure, it just all creeps up on you in an insipid sneaky manner. It took years for panic to turn into panic disorder and finally agoraphobia in the last few. I just think it's far more complicated. You can't ignore other factors simply because you don't have an understanding surely?

My dad is a completely housebound agoraphobic. His aspirations for recovery are zero. To the rest of us seeing him being stuck permanently indoors looks like Hellish prison but to add weight to your arguement he doesn't want to get better. I think Marie does deep down. She wouldn't have agreed to meet with CL otherwise, and as I suggested, you have to trust yourself or in someone else. It's hard to describe but it's like giving your control over to someone else. They replace your negitive inner voice, they tell you it's okay, they urge you forward, encouraging and cajoling, but as time passes without that reassurance, then it's just too easy to fall back into old ways.

Maybe there are some who don't want to overcome it. The people on NMP(I don't go there myself) maybe there are some there too. I suspect they have tried many things and have simply succumb to an ultimate defeatest apathy. Is there a way out? I really hope so!

Robert said...

Hi CC - In my last reply to you, I said that I didn't know how/why you became agoraphobic. Or remain so. The reasons may well be incredibly complicated - I wouldn't know - and I would have to extremely arrogant to make a comment. I'm not that arrogant.

In my post, I suggested that for some people agoraphobia may be, consciously or subconsciously, masking deeper problems. I'm not suggesting that you are/are not one of those people. How would I know? The only constant in agoraphobia is that everyone's agoraphobia is different to everyone else's.

You wrote ...were you suggesting it's me who goes out advertising my own 'seriously low self esteem?'. Actually, I suggested the opposite - that you would NOT wish to advertise it. From your own description of yourself and your frequent self-deprecatory comments, it can only be assumed that you have "seriously low self esteem". Not being able to share that with others in your "real" life is just another symptom. Only you know whether your agoraphobia is assisting you to mask your lack of self esteem to the real world. Even if you think that it is, it doesn't mean that there aren't other reasons - as far as I can see, these things are rarely single-factor matters.

About Marie - CL told her to...go out every day & walk as far as possible; develop a regular sleep pattern; eat a healthy diet; listen to his CDs (Marie told him that they help her) and ring him as often as she wanted. Two days later she had stopped walking outside; she has never developed a regular sleep pattern, at times staying online until 3 am or later and getting up as late as lunch time; she refuses to change her (v unhealthy diet); she has stopped listening to CL's CDs (& they are currently lost) and she never rings him (but I can understand that). She has never suggested going back to see CL. Does it look as though she's trying to kick agoraphobia? Having said that, when she organised that trip to see CL, she must have wanted to change her life at that moment. What has happened to change that? I don't know. She knew about CL for 2 - 3 years before she contacted him. Why did she wait so long? What prompted her to contact him at the moment that she did? So many questions & no answers. And lastly, she's not denying on this blog or her own that she's not currently fighting agoraphobia. Isn't that an admission?

If you had a limp which was affecting your mobility, would you try to compensate by trying out different walking sticks? Or would you try to find out how the limp developed and try to remove it? Many agoraphobics (in my limited experience) go to the doctor saying "Cure my agoraphobia!" How many people examine the ways that it crept into their lives and try to remove it by reversing those ways? Ok, so that is simplistic, but you (hopefully) get my drift. If one ...has tried many things and have succumbed to ultimate defeat (your words)...the incentive to keep trying has not been great enough!

Did you know that Colonel Saunders started up his Kentucky Fried Chicken franchise operation at age 66? By age 68, he had only managed to set up 5 franchises. Did he give up?...Silly question! By age 70 he had 200 franchised operations & before he retired 10 years later, he had the biggest operation of its kind in the world. If you want something badly enough, you will do whatever it takes to get it. Do you agree? Or are you one of the people who would answer that question, yes, but.../that depends on what you want/that doesn't work all the time/etc. The latter group don't get what they want!

rosiero said...

Obviously I don't know Marie or the deep-seated reason for her agoraphobia. I can only go on the anxiety problems and minor phobias that I have had. I think it does not help that you are always there to do everything for her (and if you can't, there is always someone else - her mother, your adult daughter etc), so you are thereby enabling her to continue her agorophobia. If the possibilty of passing the problem on to someone else is removed and the phobic has no choice, then they are forced to face their phobia. Remember how it was a few months ago when you injured your foot and couldn't drive Marie to Scotland - she did it all by herself. She took over in an emergency. Similarly when she gave birth - she had no other choice - you could hardly do that for her!!

I feel sure that as your small children start to grow to the stage where they need to go further afield and need their mother to support them or watch them in plays or concerts or football matches at school, she will feel compelled to do that. If you are unable to be there too, she might feel more inclined not to let the children down. I may be wrong, but maybe leaning on others does not help her in the long run.

Grumpy Old Ken said...

Robert
I read all your blogs and the comments. I have no qualifications to comment but hope people like me are supportive. You seem to cope very well but I dont suppose you have too much choice.

Anne said...

I haven't at this stage read the other comments. I do suffer from panic attacks, I don't feel I chose to, in fact I've done all I can to try and help myself. My attacks seem to start after my mother died over 10 years ago. I managed to get them under control (without medication) however the last couple of years they are back and I'm struggling. I do perservere and try and do as much as possible. Shopping malls are hard on me - yet I love shopping! Wouldn't you think I would then be distracted and not get them in this situation?!?

My husband had recently been diagnosed with secondary cancer and I need and want to be there for his treatments, hospital visits etc - but struggling to walk into the hospital.

Anonymous said...

Hi Robert

I think every agoraphobic has a unique reason behind their condition. For me it started at age 14 - but since then I've been to Uni, got a degree and worked full time for 17 years, so it's definitely not a fear of work! I'm lucky enough to be able to drive by myself up to an hour away (but not inter city), and am fine just about going anywhere with my husband. (But I'm not great on public transport or travelling with people I don't know very well). This is all on meds, which have their upsides and their downsides - the only time I've experienced monophobia was when I was withdrawing off a med and really hit rock bottom.

As to the reason I became agoraphobic? Well I think that at 14 there had to be some sort of hormonal influence kicking it off. And perhaps at that age, saying goodbye to childhood and facing the responsibilities of adulthood. Through lots of talk therapy I think it's my way of effectively ensuring there's someone around to 'look after' me. That's what the home base represents - people who love and care for me.

As to overcoming it - well it is bloody hard. I honestly don't know how to describe it to someone who doesn't have it. The closest I've heard was some (barbaric) experient that they did on WW2 soldiers. They gave them some type of drug that gave them panic attacks, and the soldiers likened it to the fear of going over the front. So you can imagine how draining it would be to effectively face going into war every day. And even if you do conquer it, it's waiting in the wings for a time where you're really stressed, sick etc. It's a never ending battle fighting it off.

As to the extraordinary circumstances that induce the agoraphobic to go outside of their limits - I have experienced that. I had very bad food poisoning in Guatemala and while I would NEVER be without my husband overseas, I had to let him go to get a doc for me. I was too sick and weak to even have a panic attack at that stage. But on the flip side, there is a woman here in NZ (who was on the news a few months ago) who has cancer, and because of her agoraphobia, she can't go to the hospital to get treatment. So you can see how powerful the fear of panic can be - it can outweigh the fear of death.

And as for Marie, I find it curious that she seems to keep forgetting to take her meds quite often. Not only does this hinder further success, but it can actually make it worse than when you first started them. (The withdrawal can be swift and debilitating as you will have seen). I'm wondering if there are any side effects to them that she doesn't like? Or some other deep seated reason?

Well, this is hardly a comment, more like a letter! I have to admit to being inspired by Marie's success that you write about - I went on my first overseas trip in 3 years a couple of months ago because of it!

Jax

Dorothy Rimson said...

This is a serious issue to debate on.

Robert said...

Hi rosiero - I am cognisant of the fact that I am an enabler. But the children's welfare comes first and I'm not prepared to chance letting them down just to give Marie the incentive to attent their school concerts, football matches etc. Rather than concentrate on sorting out her agoraphobia, I am looking for the reason why she isn't concentrating on sorting it out...

GOK - Your support is much appreciated, and your witty posts frequently cheer me up!

Anne - I'm really sad to hear abour your husband's condition... However, since you seem to have an idea about what started your panic attacks, if you can work out what made them come back, then perhaps you will be able to stop them by dealing with/removing the problem. I haven't come acrross anyone who chose to have agoraphobia - but I know several who don't want to lose it. They prefer their avoidance tecniques.

Jax - It seems to me that those with recurring agoraphobia have underlying issues which need to be dealt with (assuming that they can be defined!). I expect Marie to bounce back in time for Christmas - well, at least a little!

Ruby said...

Hi Robert

Such a controversial topic, I still don't have the answer to, I change my mind on it depending on the mood I am in.

My psych says its due to a loss of control, she likens it to the beginnings of eating disorers... eg. that you feel like you have no ccontrol, so you start controlling something you can, before long this turns and bites you on the bum and it's controlling you

Dr Phil says that no one does anything without some sort of payoff, weather that is avoidance of responsibilites, life, or support from others etc etc

What I do know is that now matter what the theory is, its a horrid place to be in, and I am looking forward to the day I am not allowing it to control me

Ruby

Robert said...

Ruby - Great to hear from you again!! :) I'm also glad to learn that your life has a degree of normalcy. You really have come on a lot since your worst days. Congratulations! Your short comment contains much to think about! I'm inclined to think that Dr Phil and your psych are correct.

Anonymous said...

There is now rising proof agorophobia is a physical brain disorder as it tends to run in families. I have it, my brother has it, my sister has it, my mother has it and possibly more family members. The suffering is unbearable and many people who have it are actually out working and trying to make some kind of living while dealing with it. Anyone who thinks agorophobia is for people who don't want to work has absolutely no insight into this at all. It's like saying that people want cancer so they don't have to work. It totally destroys lives. I have been kept from making a living, living in near poverty, lost the love of my life over it, missed going to college, my high school prom, my graduation....I am glad I am 58 years old and closer to death at this age. I have basically spent 45 years in the pits of hell

Anonymous said...

I do think you lack some understanding of severe agoraphobia if you think that somebody would 'choose' to stay indoors just to avoid working and having a 'normal' life. As a sufferer of severe agoraphobia for 13 plus years barely leaving the house I cannot relate to some of your case studies. Perhaps the people you have chosen to study are not as severely agoraphobic as others but even so, I don't think that anyone would prefer to be agoraphobic rather than have a normal life and be a productive member of the community. I suffer from many physical ailments which cause me great pain on a daily basis and other types of suffering and despite trying I have 'never' been able to visit any member of the medical profession to be properly diagnosed or receive the correct treatment! Most of my family now don't bother with me and I am lonely and isolated but still unable to go out to change this. I have had CBT etc but it never worked for me. Do you really think that I would 'choose' to be like this? There are varying levels of agoraphobia so some people can do certain things within their comfort zone that others can't. This does not mean they are 'not agoraphobic'. If you have never suffered a panic attack in your life then I don't think you are really qualified to comment. As they say 'Walk a mile in my shoes'. (Impossible if you suffer from agoraphobia). Then you can afford to comment!

Robert said...

Dear last Anonymous,

I liked the wry comedy in the last line of your comment!

If I became agoraphobis, I KNOW that I wouldn't let it stay with me forever. But some do. My dear wife didn't follow any therapy or medication through - why would that be? Perhaps she didn't want a cure enough? I just don't know.

Although I HAVE had panic attacks, I'm not qualified to give a diagnosis of my wife's condition. Only she knows why she won't see any therapy or medication through. I can only speculate.

Thanks for commenting - and I hope that life will get better for you soon.

stanley coco said...

I cannot believe the ignorance of what has been said here, its a diagnosed condition for a reason and unless you have ever suffered yourself you will never understand. Assuming that its (easy) to be terrified of daily life situations is absolutely disgusting and you should be ashamed of yourself. I get that you probably get off on judging other peoples lives but that's just a mental health problem of your own now isn't it and as far as your examples with life saving surgery or life threatening situations well thats just a croc of shit ay cause their is no choice provided in either situation, its live or die and agoraphobics obvioulsy care what happens to them or they wouldnt be in hiding in the first place! Please find something meaningful to do with your life rather than judging how others live theirs. Its extremely debilitating and difficult to overcome and the lack of help available for people suffering mental illness such as this is appealing.

stanley coco said...

I am so disgusted by what has been said I honestly just feel sad for such an ignorant, basic minded person. Get help!

stanley coco said...

Well