by Pat Merrill
The following information has been compiled from a great variety of resources, containing the ideas and opinions of many experts in the treatment field. It is our hope that our agoraphobic readers can share this information with family members, co-workers, and/or friends that may be interested in understanding your condition and ways to assist you. (It is assumed that we are referring to agoraphobics who are actively pursuing recovery.)
It is justifiably perplexing–and perhaps even frustrating–to attempt to really understand what agoraphobia is if you have not experienced it yourself.
The points made here may be new to you, or even contrary to the ideas you may have held. Agoraphobia is a complex condition, not easily explained. To truly understand, one must have actually had the experience themselves, or must be willing to study the issue in great depth.
What Is Agoraphobia?
Agoraphobia is considered to be especially complex in that it results as an interplay of many factors: possible genetic pre-disposition, state of health, personality traits and attitudes, and more. Total recovery requires attention to many aspects.
Media attention to agoraphobia has often attempted to portray agoraphobics as “hermits”–usually women–imprisoned in their homes by unreasonable fears. In actuality, only a very small fraction (some say 3%) of agoraphobics are fully housebound.
This distorted picture has done a disservice in that it does not accurately represent the experience of most agoraphobics. And though statistics would indicate a larger number of female agoraphobics, there are many male agoraphobics.
Many agoraphobics appear to be functioning quite well, yet they may be experiencing extreme distress; many manage to hide their discomfort so effectively-for fear of possible embarrassment-that others do not believe there is a real problem.
Most agoraphobics become phobic as a result of their attempt to avoid very strong, very uncomfortable and “disorganizing” body and mind sensations caused by extreme anxiety, particularly panic attacks. Severe sensitization of the nervous system can occur, creating further symptomology.
A panic attack can be so traumatic an experience that one begins to become extremely hypervigilant to physical sensations which might signal a pending panic attack. Often this occurs almost unconsciously.
Sometimes very gradually, and other times with great swiftness, a person may begin to link situations or places as potential triggers to an attack. If for example, a person has a panic attack while watching a movie at the theater, he may come to associate such outings with his “attack” and inevitably be on guard for it to happen again. This tense and “on alert” state can in itself cause further anxiety, leading to more panic attacks and a state of chronic, high level anxiety. It takes learning and practice to develop the tools necessary to prevent this response.
This in itself would require a great deal of explanation, but for our purposes we will not attempt to go into the complexity of causes or treatments of the conditions.
Not all panic attack sufferers become agoraphobic; about one-third of panic disorder patients develop agoraphobia.
Though one may be inclined to think that agoraphobics are afraid of people, places, things, or situations, this is not quite the case as with “simple phobias” (i.e. social phobias, animal phobias, needle phobias, etc.)
Again, what the agoraphobic fears is the very feelings of anxiety itself, especially feelings of panic attacks. The agoraphobic may go to great lengths to avoid the possibility of feeling those feelings because they are tremendously powerful and unpleasant.
As you may know, panic attacks involve the experience of a cluster of symptoms such as: choking sensations, smothering sensations, rapidly pounding heartbeats, chest pain, difficulty in breathing, visual distortion, disorientation, strong feelings of unreality, confusion, chills or heat sensations, tingling in the extremities, sweaty palms, strong feelings of doom, an urgent need to run or escape, a sense that you are about to go mad or are about to die, and so on. The symptoms themselves do not adequately convey the frantic quality of terror the person experiences as they try to deal with the onslaught of chaotic, extreme symptoms.
The experience of full-blown panic attacks can be so intense and profound, that it is unlike anything else ever felt. If you have never experienced a panic attack, it would be beyond your comprehension to appreciate the enormity and discomfort felt.
Despite its intensity, it is fortunately not dangerous. Agoraphobics may know this intellectually, but may remain somewhat unconvinced because the experiences they have had may have been most distressing.
Guidelines for Friends/Family
- Realize that the fears of the agoraphobic are “real.” Take care not to belittle their experience. Accept that his/her feelings and concerns are legitimate.
- Be as patient as you can. Though it may be frustrating to you, especially if you are limited by the agoraphobic’s fears, remember that his/her frustration is far greater. The agoraphobic must also learn to be patient.
- Be sympathetic, but don’t pity the agoraphobic. Any attempts you make to genuinely understand what he/she is going through will be appreciated greatly.
- Make an effort to learn more about agoraphobia by reading books, articles, or speaking with experts on the subject if you are close to the agoraphobic. This will help BOTH of you.
- Avoid any temptation to say unhelpful things such as, “There’s really nothing to be afraid of,” or, “I have fears too but they don’t rule my life.” Once you comprehend that this is not ordinary fear the agoraphobic is dealing with, you will see why this sort of logic comes across as demeaning and trivializing; it can also create alienation if the agoraphobic feels you really do not understand him/her.
- Do not assume that the agoraphobic is weak or childish, or that they could get better if they just tried harder. Recovery from anxiety disorders are not overcome by willpower alone. To even try to overcome agoraphobic limitations takes great courage. They are facing great terror, not simple nervousness.
- Offer support and encouragement, but do not attempt to control or manage their recovery process. The agoraphobic needs to tackle recovery at his/her own pace and is the one who must do the work. Allow the phobic to tell you what would be helpful.
- Do not shame, lecture, or ridicule. This is obviously unconstructive and hampers progress by further undermining already shaken personal confidence.
- Realize that every tiny accomplishment in the recovery process is really a big deal. Let the phobic know that you realize how much effort went into each accomplishment. You can’t congratulate an agoraphobic too much!
- Do not push the agoraphobic to enter into situations before the agoraphobic person feels ready. Gentle urging to face fears is sensible; pushing is counterproductive.
- If you happen to be a recovered or recovering agoraphobic yourself, or perhaps have had other phobias, don’t assume that what is right for you is right for everyone. Let the agoraphobic decide how best to approach recovery. Right or wrong, it is his/her decision to make, and each person is unique in their experiences in the quest for recovery.
- It is an erroneous belief that repeated exposure alone to the feared situation will bring recovery. While facing fears is imperative, it must be done in such a way that incorporates specific coping strategies and appropriate attitudes. If fears are faced without the “right tools” and attitudes, the agoraphobic can become more severely sensitized to his/her fears. Remember, it is the deeply ingrained, habitual anxious response that the agoraphobic is learning to overcome–not the driving, or shopping, or socializing, etc.
- Since agoraphobics are usually under a great deal of strain, can tire easily from the chronic anxiety, and often experience depression in addition to the phobia, he/she may sometimes become irritable or especially emotional. Accept that this is a part of the package and try not to be overly upset by his/her expressions of anger/frustration/sadness.
- When possible, help to alleviate un-necessary aggravations and stressors. Other demands and conflicts compromise the time and effort needed to be put toward recovery.
- Expect that the person in treatment may need to devote a good deal of time to his/her program (i.e., desensitization practice, listening to program tapes or relaxation tapes, and so forth).
- Be careful not to be overprotective or to foster too much dependency. There is a delicate balance that can be achieved while providing proper and legitimate support.
- Remember that the agoraphobic is every bit as deserving of assistance as someone suffering from any illness.
- Accommodate the agoraphobic’s concerns, within reason. For example, if the agoraphobic says he/she simply cannot drive to the store, make other arrangements until the time when he/she is ready to tackle that limitation.
- Find creative solutions-together with the agoraphobic-that will keep you from “burning out” if you find yourself handling too many of the responsibilities. You may, for example, want to hire help at times, or find a neighbor who wouldn’t mind dropping the kids off at school, etc. You must also take care of yourself!
- Understand that recovery is a process that does not always follow a straight path. It may be riddled with ups and downs, steps forward and steps backward. (Example: Suppose your husband seems to conquer his reluctance to eat in restaurants, but on another occasion he is unable to go out to dinner with you at a new restaurant. This is not uncommon and should not be viewed as discouraging. Remind your husband that he need not be discouraged by temporary “setbacks.”) Expect and allow ups and downs.
- Part of total recovery from severe anxiety includes becoming a more confident, assertive person. It is not necessary to feel threatened or confused by these changes you may see in the recovering agoraphobic. Be willing to explore new patterns in the relationship.
- Be a good listener. Sometimes the agoraphobic needs to talk about what they are going through and what they need. Don’t try to be their therapist; simply acknowledge and respect their feelings.
- Recognize that the phobic individual is sometimes ambivalent about the recovery process. Since it can be so uncomfortable to face long-standing fears and make profound attitudinal changes which may seem overwhelming to him/her, there may be some reluctance to get over the problem. If this does not resolve itself over time, it may be appropriate to suggest counseling or other help to get the person over that common hurdle.
What About You?
Since the typical agoraphobic personality profile shows agoraphobics to be uncommonly intelligent, highly sensitive, creative, conscientious and caring, it is no small wonder why you have chosen to have such a person in your life.
But if this list has left you feeling that your life must revolve around the agoraphobic’s needs, try to come to terms with the fact that agoraphobia is a serious challenge, just as any physical illness would be. Providing compassion, support, and even making sacrifices are small prices to pay for the potential rewards of helping another to regain their health.
By the same token, your needs are important too. Particularly if you are very close to the phobic, perhaps a spouse or child, you will need to do what you can to take care of yourself as well.
The payoff for offering a loving, helping hand to an agoraphobic can be well worth any work involved. The end result will be a more independent, healthy person in your life. And you can be pleased to have been part of that process, while perhaps even learning much about yourself.
The agoraphobic in your life will surely appreciate you for your genuine caring.
(This posted article was originally published in our ENcourage Connection Newsletter, print version.)