She tentatively steps outside onto her door step, with noticeable hesitation she ventures out on to the path and with slow cautious movements she makes her way to her gate and into the street. Her heart is pounding, her legs turn to jelly, she may be sweating, her throat is constricted as she experiences difficulty swallowing because of that lump in her throat. Her head is swimming, she feels disoriented and distant as though she is not really present, far removed from the situation. Her lungs feel restricted and she feels as though she is having difficulty breathing, as though she is conscious of each breath that she takes.

You may not know her profound fear as you pass by the lady with agoraphobia as she hesitantly makes her way along the busy street.

Agoraphobia is an anxiety disorder, it is called an anxiety disorder because the main symptom is anxiety. Anxiety disorders are all serious mental health problems. They are significant and incapacitating disorders and should not be confused with normal anxiety that everyone experiences from time to time such as the anxiety produced by an anticipated event such as an interview, a first date, an exam and so on. Rather anxiety disorders are chronic, overwhelming and relentless, which without therapy, become progressively worse.

It is said that that the definition of agoraphobia - an adaptation of the Greek word agora and phobos which literally means fear of the market place - as a fear of open spaces is a misconception. For many agoraphobics this is most certainly the case, agoraphobia is a more pervasive and complex fear than this definition would imply  For my sister Lynda, upon whose lifetime experiences I will base this article, open spaces most certainly increased her anxieties about being away from her home and her comfort zone but this was not the only facet of her agoraphobia, nor was it the most prominent. I recall my sister saying that the definition of agoraphobia as a fear of open spaces was inadequate, and that what she suffered was more complex. My sister lived in a major city for her entire life, it was in fact her agoraphobia that imprisoned her to the limitations of this city and when her condition was severe and untreated to the confines of her own home. Agoraphobia is a more complex and pervasive condition than the definition of a fear of open spaces would imply.

There are apparently two types of Agoraphobia: Agoraphobia without history of Panic Disorder and Panic Disorder with Agoraphobia

The DSM describes Agoraphobia without Panic Disorder as:

The DSM description of Panic Disorder with Agoraphobia:

A. Both (1) and (2): 

(1) recurrent unexpected Panic Attacks
(2) at least one of the attacks has been followed by 1 month (or more) of one (or more) of the following: 

(a) persistent concern about having additional attacks 
(b) worry about the implications of the attack or its consequences (e.g., losing control, having a heart attack, "going crazy") 
(c) a significant change in behavior related to the attacks 

B. The presence of Agoraphobia. 

I must admit that these definitions are complicated and it may be difficult to categorise individual cases exclusively in either one or the other. My sister I believed first became Agoraphobic and than went on to have Panic Disorder. Moreover her fears where less specific and did not appear to relate to those mentioned in the above definitions, such as anxiety about being in places where escape may be difficult or embarrassing. Rather Lynda experienced anxiety which had no definition, (unless of course it was subconscious), rather like a free floating anxiety, but this anxiety was precipitated whenever she went outside. If you had asked why she was so afraid to leave her home she would not have been able to give you a clear answer for she did not know why she was afraid. She could not give not a reason for these powerful anxieties that for many years kept her trapped within her own home. However certain places and situations would increase her anxiety, for instance a supermarket or other crowded place.

Later as the disorder progressed she became conscious of a more definite reason for her apprehension, namely actual fear of the anxiety she would experience. In other words after a time her focus of anxiety centred upon the anxiety recurring, the fear that she would inevitably experience each time she left the house. Whether or not her fears eventually centred on those cited in the DSM I cannot ascertain as after a time she did not discuss the reasons behind her fears. Initially her fears where less specific, just stepping outside would consume her with overwhelming fear, a fear that would defy words. I recall in her early twenties shortly after her marriage during a time when the condition was at its height of severity, how merely standing on her door step trying to get outside to get into our car  paralysed her with fear. She stood there immobilised, frozen with fear, her face contorted with dread as she began to shake. It was as though there was an invisible barrier that prevented her from taking her foot off the step and placing it upon the pavement. She retreated inside overwhelmed by these powerful sensations.

Agoraphobic fears effect a wide range of activities so easily taken for granted by non sufferers. The activities impeded by this condition include most significantly leaving ones home, sometimes in extreme cases the suffer is unable to leave her bedroom. My sister had a pen friend who was so severely effected that she could not leave the confines of her bed without experiencing extreme anxiety. Entering public places - in particular supermarkets - often presents a major problem for Agoraphobics. Some sufferers after treatment or with sheer determination may be able to expose themselves to these fearful situations but such is endured with considerable anxiety. These sorts of situations are however more easily confronted if the sufferer is accompanied by an understanding companion. A person suffering from untreated agoraphobia most certainly would never travel alone, furthermore whether accompanied or otherwise the farther the sufferer travels away from home the more her anxieties increase. In these situations the sufferer feels vulnerable away from her comfort or safety zone - an area in which the individual feels comfortable, where she does not experience anxiety. This may include only her home, sometimes even only one room. The further the sufferer leaves this safely zone the more enhanced her anxiety becomes. Sometimes the limitations of the safety zones may be extended if the person is accompanied. As already mentioned some times this fear is not clearly defined but presents as an all consuming and overwhelming anxiety. At other times the fear concerns the anxiety that there is no where to escape or no sanctuary if anything should go wrong.

Agoraphobia usually presents with a cluster of other phobic conditions which may include some or all of the following: Panic Disorder, Social Phobia, and Gephyrophobia ( fear of crossing bridges). Concerning Gephyrophobia this fear is not so much about the bridge or the drop below whether it be to a road, rail track or river, rather it is about the anxiety that once on the bridge there is limited exit. Depersonalisation, a sense of detachment as though you are disconnected from your body and feel removed from reality as though you are in a dream, often accompanies agoraphobia as indeed it does with other anxiety disorders.

Moreover like any other anxiety disorder the individual with Agoraphobia may present with any number of co-morbid or coexisting conditions which are not directly related to her agoraphobia. For example: General Anxiety Disorder GAD and Depression. And like most anxiety sufferers the Agoraphobic may present with Hypochondria either as a co-morbid disorder or as a duel diagnosis. Hypochondria is a very distressful disorder in its own right and when it presents right alongside Agoraphobia it adds considerable misery and suffering. Despite Hypochondriacal concerns the agoraphobic may also present with  Medical Phobia and may be fearful of medical procedures, a visit to a doctor or hospital may be a traumatic experience. There is a dilemma here concerning the existence of two opposing phobias; such a situation as you can imagine causes considerable anxiety as the Hypochondria sufferer is not able to allay his anxieties by a visit to the doctor. Other phobias related to this may present such as Dentist Phobia. Most phobics and those who suffer with an anxiety disorder including Agoraphobia have an abnormal fear of death, Thanatophobia phobia, which was the case with my sister. Lynda suffered with a profound fear of death which of course is in most cases the main fear behind Hypochondria.

With the exception of Gephyrophobia my sister suffered all of these co morbid and co existing conditions. These are of course the most common co-morbid conditions which present with Agoraphobia, obviously the sufferer of any anxiety disorder or any illnesses for that matter may present with any number of other illnesses or disorders. The point is a person with Agoraphobia will in most cases also have other conditions to contend with and Agoraphobia should, like any other anxiety disorder, not be considered in isolation. Later in life Lynda also developed Anorexia Nervosa whether or not this was the direct result of her Agoraphobia I cannot ascertain. In her late twenties as a result of severe full blown Agoraphobia my sister become depressed and as a consequence began to comfort eat and put on very quickly a huge amount of weight. Moreover one of the medications which she received in the early days of her condition, Nardil an monoamine oxidase MAO inhibitor, was also partly responsible for Lynda's sudden weight gain. This drug is now not as widely in use as it was than for the treatment of Agoraphobia. After a time this also became a source of anxiety and accentuated her depression and induced in her an urgent need to loose weight as quickly as possible. I doubt if my sister commenced her diet intending to become as thin as she became but soon her twelve stone body diminished to less than six stones. I believe that anorexia nervosa is related to OCD and like OCD is a neurological disorder genetic in origin. It is therefore likely that with or without Agoraphobia my sister had the predisposition for developing Anorexia Nervosa and her Agoraphobia was merely a catalyst.

Lynda suffered throughout her entire adult life with Agoraphobia, it like OCD is a pervasive disorder and can encroach upon all aspects of the afflicted person's life. I along with other uninformed people once thought that a sufferer of Agoraphobia was not subjected to torment all the time in the same way as the OCD or GAD sufferer, and considered that when he or she is at home that there is at least respite from torment and some peace of mind, which of course is not the case for the person who has OCD or GAD. Such an erroneous misconception could not be farther from the truth. Yes the sufferer may feel less anxious while she remains at home avoiding her fears, however this does not mean the sufferer is free from anxiety. Quite the contrary in fact, there is anxiety and depression, indeed frustration for the unfortunate sufferer. Moreover many Agoraphobics experience free floating anxiety particularly first thing in the morning. A common condition for anyone with an anxiety disorder but for the Agoraphobic such can be perhaps more severe. Feelings that one cannot go out and enjoy ones life will naturally give rise to depression. Moreover confinement to the home leads to an increase in focus on other anxieties such as hypochondriacal concerns. Depression and further anxiety may also result as the sufferer is effected by financial deprivation or even debt as of course he or she is now no longer in a position to work. Education may be effected if the condition is manifest at an early age. And even if Agoraphobia does not emerge until adulthood most people who go on to suffer from this anxiety disorder will have already experienced anxiety related conditions such as those mentioned in my sister's case; hypochondria, GAD, free floating anxiety were manifest right from early on in childhood. It is a recognised fact that depression and anxiety effect ones ability to learn. School was a nightmare of misery for my sister and although highly intelligent her educational achievements were thwarted by her chronic anxieties. Marriage and a family may present difficulties although my sister had a long and successful marriage. However pregnancy and the eventual loss of her child who lived only twenty minutes after birth took a toll on her already anxiety ridden fearful life. The child, a boy, was born deformed as a consequence of the medication that my sister had been receiving for her Agoraphobia.

Agoraphobia is indeed a pervasive disorder and is a severe detriment to one’s entire life and effect one’s health and well-being in ways that non sufferers often fail to realise. In extreme cases the sufferer’s health may be in jeopardy if he or she cannot cope with leaving the home to consult a doctor. And bear in mind agoraphobic fear may be further compounded in such situations by the addition of Medical Phobia and Social Phobia. Therefore you can see the impact that Agoraphobia and accompanying conditions has upon the sufferer’s life.

Lets look at a couple of scenarios of how co-morbid condtions may compound and accentuate Agoraphobia and vice versa. The following is a situation that most likely presented to my sister. Often Lynda became fearful of any ache or pain or irregularity in her body, as a sufferer of Hypochondria since early childhood she would imagine that she had some sort of terminal illness, usually cancer. Her fearful imaginings would only be alleviated by a visit to the doctor but as a sufferer of Social Anxiety this would not have been easy. Moreover she would be afraid of any medical procedure of an invasive nature, Medical Phobia, that the doctor may have suggested. So you can see here that there are three co-morbid or co-existing phobias presenting: Social Phobia, Hypochondria and Medical Phobia. All of which accentuate or make more difficult the primary condition which was for my sister Agoraphobia. It is obvious that someone trying to overcome her fear of going out would experience more difficulty with these additional fears to attend to. You can see how all these phobias coalesce to produce a complex web of interactive conditions that would further incapacitate the suffer and induce enormous anxiety. Few anxiety disorders present in isolation and co-morbid condtions add to the stressful mix in a significant way.

In later life after receiving therapy and being part of a day care facility and a member of a group of others all of whom suffered with mental health condtions, Lynda began to gain more confidence and make progress. However such progress was far from easy and here again we see the complexity of a disorder that is aggravated by co-morbid, co-existing condtions. During her time with the group at the day care centre Linda became friendly with another lady and together they embarked on evening classes in New Age spirituality. Such was difficult for Lynda not simply because of her Agoraphobia but also because of the social interaction necessary. Lynda went on to complete a course in basic patchwork and became part of a ladies sewing group. Eventually she become encouraged to take a City and Guilds patchwork and quilting course to gain a qualification. It was a three year course involving much work and also social interaction. Previously Agoraphobia had inhibited my sister from this kind of endeavour but now she seemed more determined spurred on by her keen interest in patchwork, and for the first time independently without the encouragement of the mental health group or that of her new friend who wanted to take a different study course, Lynda enrolled in the City and guilds course. She did not know anyone else at first. It was a  difficult task which previously she would not have even contemplated . It involved two bus trips, a difficulty for anyone with agoraphobia, and meeting new people. I recall her saying how her social anxiety made it difficult, the tea breaks she complained where long, nearly 40 minutes despite the fact that classes lasted only two hours. She remarked how difficult it was during these breaks; the anxiety of making conversation, her Anorexia Nervosa and the refusal of food making her conspicuous. Most of those who suffer with a phobia such as Agoraphobia rarely have their condition present in isolation, many have to cope with other phobias and other anxiety condtions which accentuate and compound the primary condtion.

I cannot recall precisely when my sister Lynda first became Agoraphobic it was sometime in her middle to late teens becoming very severe in her early twenties. She had however throughout her life suffered from extreme anxiety, Social Phobia, School Phobia, Hyphochonriasis and chronic anxiety. In those days of course in the 50s and 60s such anxiety disorders were not recognized or understood in quite the way they are today. This was particularly the case for a child. During childhood my sister lived in a state of fear and it would not be an exaggeration to say out right terror. She like me hated school, dreading each and everyday her Social Phobia and consequent inability to mix with her peers and other anxieties made her a target for bullying. Both she and I did anything and everything short of playing truant to avoid going to school. Our parents were very understanding - at least from our perspective, often allowing both my sister and I to stay at home upon numerous occasions. Moreover my parents readily gave us notes which were for the most part untruthful concerning illnesses of which neither of us suffered but which would exempt us from sports and games which were a particular anxiety inducing facet of school life. My parents knew that neither Lynda nor I were able to cope with such at school due to shyness and an inability to participate well enough. However to the school authorities our parents must have appeared to be very irresponsible and indeed aggressive and rebellious themselves as my parents often confronted the school whenever they considered that we were unjustly treated.

Agoraphobia in my sister’s case did not appear all at once out of the blue but seemed to progress from increasing anxiety; the anxiety which had dogged my sister right through childhood seemed to grow imperceptibly into recognisable Agoraphobia. I recall that Lynda did not keep a job very long, her Social Anxiety and even in one case bullying at work made keeping a job very difficult, even in the 1960s when jobs were plentiful Lynda seemed to be out of work more times than not. On one occasion my mother had to virtually drag my sister to an interview when she became anxious to leave the house remaining at home preoccupied in her interests, which at the time may have prevented her from becoming too depressed. Lynda got the job and incidentally while employed with this firm she made some improvement even to the extent of making friends with her co workers. Often being with the right people can make a huge difference to those of us who suffer with an anxiety disorder, particularly when social anxieties also present.

However Agoraphobia became increasing more difficult to overcome and in her late teens my sister was confined to the house once again and this time it was more difficult to persuade her to leave for any reason. I recall taking an afternoon from work, a weekday would be more quiet and therefore less stressful in order to accompany her to the local park. It was an attempt to try and simply get her out of the house as that afternoon she had become more depressed. At that time I had really no idea about agoraphobia other than the very basics I hoped that confronting her fears would free her from their insidious clutches, at that time my own anxieties where not that apparent and I therefore had no idea the extent of the anxiety that is experienced by a sufferer of any anxiety disorder including agoraphobia. I still today recall just how terrified she was. We somehow made it to the park a couple of miles away. I cannot recall either the journey or our return only my sister’s profound fear which reduced her to tears as we strolled through this park on a bleak wind swept day in winter.

I do not recall with great detail my sister’s life and the precise progression of her Agoraphobia as I left home at twenty-two to live in the southeast where I remained for thirty years. During that time I only periodically saw my sister. Visiting one another was problematic because of our respective illnesses which in their different ways inhibited travel, at least regular travel. My sister did visit my husband, son and I in the south east but rarely and with enormous difficulty often arrangements where cancelled at the last minute as fear incapacitated her. She would tell me that her anxiety increased the further the train or coach took her from her home, her personal safely zone, the boundaries of which fluctuated: during difficult times to her hone only and at less difficult times to familiar areas of the city. I think that I can count on one hand the number of times she and her husband came to visit. She did not come to our wedding and her first visit with us did not occur until six years after our marriage. After which she visited on only three other occasions in thirty years. These visits were always problematic and only lasted a few days, my sister’s increasing apprehension made her anxious to return to familiar surroundings. Lynda of course obviously did not visit when her condition confined her to her home, it was only at times when her condition was overall less severe. However keep in mind that she, despite the enormous effort to travel, was never free from anxiety, it was with overwhelming excruciating fear that she attempted any journey, the farther the distance the more powerful the anxiety. The kind of anxiety suffered should not be underestimated, it is quite different from the normal anxiety experienced by everyone at certain times and in certain situations. No the acute anxiety that an individual with agoraphobia endures when immediately confronted with her fears, and indeed all of us who suffer from any anxiety disorder, came upon her rather like suddenly being struck down my an illness. The fear is pervasive, coursing through your body, your entire being, it effects your breathing, you experience difficulty swallowing, your stomach tightens with overwhelming pervasive fear. Yes this is real fear, your legs feel weak, they may feel heavy, become numb, begin to tingle, you urgently need to use the toilet, despite the fact that you have only recently emptied your balder, and your heart is pounding.

To limit and calm her anxiety my sister would immediately upon arrival have to walk round the village to desensitise herself against it strangeness, the unfamiliar increased her anxiety. Sometimes however the fear was just to much; it was because of the pervasive incapacitating nature of these fears that she would cancel right at the last minute. Many times she would attempt a journey, never alone of course, only to return before she arrived at her destination. This occurred mostly when she and her husband Mike attempted a holiday. On one occasion when they had booked a holiday in Wales they had to turn back when they got as far as Teleford. Whenever she stayed with us after a few days she wished to return home and nothing would induce her to stay longer. On one of these occasions an overnight heavy fall of snow did not deter her from returning home, the overwhelming need to return to her safety zone overriding the extra dimension of stress a heavy snow fall would add to travelling. During her stay with us there would be many additional traumas fears that sent her to the doctor, anxieties over food when she also became anorexic.

My sister's condition waxed and waned, at one time, as previously described  above, she could not even stand on her door step without shaking with fear, yes I will here use the word fear as anxiety seems too mild a word for such a strong completely incapacitating emotion. Lynda went on to have full blown panic attacks, which like her other co morbid conditions increased her fears. The fear of dentists and medical procedures compounded her anxieties. Keep in mind that if you have a phobia that makes you afraid to leave your house, accompanied by another fear of public places and significant anxieties concerning social interaction all such anxieties coalesce into a nightmare of fear. I cannot emphasis this enough; it is important that we not see Agoraphobia in isolation or indeed any anxiety disorder or other mental health condition. Therefore once the sufferer has crossed the threshold of her home into the street and gradually over weeks or months become acclimatised to do so the problem does not necessarily end there. The fear of pubic places such as supermarkets which involve crowds, noise and confusion is yet another fear that needs to be confronted along with of course the necessity of social interaction. It may have been my sisters fear of hospitals and medical procedures which caused significant delay in treating her heart condition. I am not sure of course of all the facts here and the above statement is simply conjecture but her anxiety whenever medicinal procedures where required was considerable, particularly invasive exploratory examinations which where often postponed time and time again. So many fears that in their own right are incapacitating also accentuate the primary condition making even the most basic endeavours of ones life a complex web of anxiety.

What is the cause of agoraphobia

The official cause of Agoraphobia

To date no single cause of agoraphobia as been identified but the most accepted hypothesis is that agoraphobia may be caused by the onset of panic attacks, the first such attack precipitating anticipatory anxiety concerning the possibility of further attacks. The cause of the initial attack is unknown but it is suggested it may the result of stressful circumstances, a tendency to breathe too quickly, anxiety over normal bodily functions and chemical imbalances.

My opinion

Personally I tend to go with the last possibility that panic attacks and indeed agoraphobia itself are the result of chemical imbalances in the brain. Concerning panic disorder and panic attacks it is my personal opinion that these conditions are biological rather than psychological, although psychological factors such as stress by association ( recollection of previous anxiety attacks) may increase the likelihood of further attacks. However purely psychological factors are not the main or only cause. And, rather like OCD, panic attacks and agoraphobia may be the result of a biological disorder which effects the function of brain chemistry. It is now known that serotonin levels in the brain are responsible for OCD and depression and it is therefore quite feasible that similar chemical imbalances are responsible for panic attacks. Although I do not commonly exhibit the classic panic attack and have not been specifically diagnosed with panic disorder I have experienced profound anxiety attacks which come completely out of the blue unrelated to my OCD. Sometimes such occur upon waking particularly if I have slept during the daytime. The strange stroke-like symptoms I have recently experienced involving numbness and tingling, difficulty swallowing and so on have been diagnosed as anxiety. These for the most part come completely out of the blue rarely precipitated by any definable anxiety. Nonetheless having said that in cases of extreme fear relating to my OCD such an episode may occur in addition to my general anxiety. It appears to me from the way these symptoms manifest that they are indeed biological rather than psychological although I believe that fear can bring on one of these attacks but as a catalyst rather than the cause. I think that the suffer may have a predisposition, most likely genetic, to agoraphobia and maybe psychological factors precipitate this condition such as the occurrence of a traumatic event or difficult childhood however anxiety without such a predisposition in my opinion cannot be the sole cause of agoraphobia otherwise everyone who had encountered a traumatic or high anxiety situation would develop agoraphobia, and clearly this is not the case.

From what I can recall of my sister's circumstances her Agoraphobia existed prior to full blown panic attacks. It appeared to evolve from previously existing anxiety states. I cannot recall a time when my sister did not suffer with some form of anxiety and it appeared to me in retrospect that she had a predisposition to anxiety. She did of course experience extreme anxiety whenever she had to leave her home but such anxiety did not quite fit the diagnostic criteria of panic attacks as described in the DSM these symptoms came much later as her disorder progressed. I cannot of course now be absolutely certain but I seem to recall her mentioning the diagnosis of panic attacks much later in the course of her illness. These panic attacks may also have been affected by a heart condition and may have in fact obscured the existence of the condition of a hole in the heart and another unusual heart defect which did not receive a diagnosis until late in her life

Agoraphobia which effects approximately 1% of the population can if left untreated become a severely incapacitating disorder, seriously effecting the quality of life of anyone unfortunate enough to be afflicted with this condition.

My sister’s agoraphobia was indeed made more complex by these other conditions and her life was one filled with continual anxiety. I intend to write a more detail biographical account of my sister’s struggle with these inculpating disorders which I will include on this website in due course.

Treatment

Agoraphobia was at one time treated with tranquillisers, the most common of which was Lorazepam. However this type of medication was later found to be additive and the effect of this drug would wear off as the body became used to the dosage and an in crease in medication was required. Many sufferers of agoraphobia and other anxiety disorders became dependent on this and similar medications and for this reason this drug is no longer prescribed regularly for indefinite periods of time. Treatment now is centred upon CBT and a treatment called exposure therapy where the sufferer is encouraged to face her fears in measured degrees of difficulty. For example if the agoraphobic cannot leave her home the first treatment session may be for the sufferer to stand on her door step. After she has become used to the anxiety this involves and this anxiety has abated the second treatment may involve the sufferer walking to her garden gate and so on with increasingly difficult and more anxiety producing tasks, rather like acclimatisation. The theory is that if you remain in the stress induced situation in time the anxiety dissipates. The patient is exposed to the situation until this happens before moving on to the next level of exposure. Additionally relaxation techniques are introduced and breathing exercises taught to moderate a panic or anxiety attack. Sometimes in milder cases such techniques may be learnt as a self help method, if you are fortunate to have a supportive understanding companion such methods can be implemented into a self help programme, however in more severe cases of long standing a trained therapist may be required. Group therapy is a method that seems now not so common place but which at one time was effective. During the initial treatment of my OCD I was involved with group therapy, most of the other members of the group had Agoraphobia and most of them where able to make significant progress as each week each sufferer set his or herself a target similar to that described above. There was one notable case of a man who had been incapacitated by a number of phobias for over twenty years who recovered sufficiently to live a more complete life. Personally I don’t believe that one is cured in the way one is cured of a disease i.e. after treatment the disease is eradicated. Rather one learns to cope with and handle any anxiety which may arise when confronted with ones fears rather than give into such fear which when allowed to run its course unimpeded grows stronger becoming increasingly more pervasive.

The following external links may be of interest:

A comprehensive collection of articles concerning Agoraphobia.

Agoraphobia Articles - Your Source of Informative Articles on Agoraphobia.

NHS Definitions, symptoms and links to support organisations.

NHS Direct - Health encyclopaedia -Agoraphobia

The National phobic society's website has useful information for all anxiety disorder sufferers including agoraphobia, also personal stories.