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"Support Person" Perspective
Dealing with a loved one with agoraphobia...
by Will Merrill
ENcourage Newsletter - 1996
Over the years, I have been meaning to include an article in this newsletter which is published by my wife-from the perspective of a "support person." I have wanted to shed some light on this subject through my own experiences with my wife as her support person and through meeting so many others in similar situations.
My belief is that those close to someone experiencing agoraphobia, in particular, can take an active role in the recovery process. With a truly supportive "team," a recovery process can be especially effective.
I have absolutely no professional background in medicine, psychology or therapy. The only "classroom" training I have had on agoraphobia was experienced over fifteen years ago, at a time when we finally found out that Pat's condition was known as " panic disorder with agoraphobia." (Yes, Pat was one of those sufferers at a time when few professionals knew what this really was or understood how to treat it.)
It was frustrating not knowing what she had or what to do. But eventually we were fortunate to learn of a specialized treatment program and support group whose doctor diagnosed Pat accurately. At last we knew what we were dealing with! I attended the group sessions throught this program along with Pat and was able to gain some valuable insight into being a support person for her.
In the first session, it became obvious to me that these men and women struggling with severe anxiety were far from weak. They were fighting for their emotional survival. I was impressed by the fact that they were all such intelligent people. Even though it was hard for me to relate to their extreme fears, it was clear that they were very "real."
I remember one night in particular when the doctor, therapists, group members and support people went on a field trip to a local Los Angeles area mall. The doctor had me wait at the top of an escalator, acting as a support person for those working to conquer their panic reaction on escalators. I'll never forget the terror in the eyes of some of these people, and I'll never forget their relief when reaching the top. Another support person walked with my wife through the mall as she worked with her breathing and other anxiety management tools to handle being in the "claustrophobic" mall environment. I also watched as an older gentleman made it to the fourth step on a stairway, then sat down in extreme fear and frustration - with tears in his eyes - as the doctor worked with him in managing his anxiety symptoms with heights and crowds. It only took these few experiences to teach me that these people were dealing with something much more complicated than mere nervousness.
Over the years, I have learned a great deal more by reading about the subject and attending seminars given by recovering agoraphobics and treatment professionals. And, of course, ENcourage Newsletter has been most enlightening for me. (I wish we had something like ENcourage Newsletter fifteen years ago!)
Even in this day and age, a person with agoraphobia is too frequently looked upon as someone with a mysterious malady. Many will ask, "Isn't that about women who can't leave their houses?" As most readers of this newsletter are already aware, this is not necessarily the case and, sadly, this disorder can be quite misunderstood. Agoraphobia is a complex issue and requires most people much time and patience in order to truly understand it. (This not only includes the layperson but the treatment professional as well.)
A person experiencing agoraphobia and panic attacks can benefit by having a support person that he/she is comfortable with. A spouse or an understanding relative or friend can be among great choices.
A "support person" is one the agoraphobic can trust enough to turn that car around and get back home if he/she insists! I'm trying to be a little humorous here, but in reality, the truth is that the support person needs to learn that the phobic is the one who must feel in control. A bond of trust and comfort develops. I had learned that it was best not to force the agoraphobic into doing things or to "direct" the program of recovery.
A support person can, however, learn to gently urge the phobic to conquer any limitations, but pressure and coercion will inevitably backfire.
"White knuckling" might be the macho or brave-sounding thing to do, but this approach rarely does much good in the recovery process. Often, without first developing the right tools and attitude, it further sensitizes a phobic person.
It is my personal opinion that, ideally, the agoraphobic receives the full support of his/her family. I cannot begin to emphasize this enough. Having the support of the whole family unit (and close friends if possible) makes it easier for the agoraphobic to recover, not only because he/she is getting more backing, but because there is no need to hide the anxiety from anyone.
When I talk about support, I am not saying that a support person should do everything for or with the agoraphobic. I am referring to supporting their efforts to get well, supporting them emotionally, supporting them by getting involved in their desensitization recovery process, or at least getting better educated on what they are going through.
Unless you have suffered from agoraphobia and/or panic disorder, or are really close to someone who has suffered, it is very difficult to comprehend what that person is going through. When dealing with a family member with agoraphobia, the key word here is trust.
When a friend or family member "looks down on" the agoraphobic for, say, not attending a family function or preventing a spouse from attending, what is really being conveyed is that the phobic is not trusted--or respected. This is difficult because it only adds guilt, shame and anger to the person already struggling to overcome their conditioned fears. Obviously, this just helps to undermine their progress by making them feel worse than they already do!
We are not dealing with a person who is simply afraid to do something; we are dealing with something far more complex and unique. It is very easy to assume certain things when an agoraphobic is part of your family. This is where trust comes in. You must trust the agoraphobic to know what is best for the situation at hand (assuming that he or she is actively working on a recovery program and is not simply avoiding doing things). And if the phobic is not getting help, you can offer to aid them in finding the help they might need.
Since agoraphobia has many different variations (one maybe can sit in a restaurant but maybe cannot stand in the grocery store line), it is difficult to distinguish between what a particular phobic person can do and cannot do. I have heard statements such as "Well if you can do this, why can't you do that?" This shows a lack of understanding of the disorder. There are simply certain things an agoraphobic has trouble with and needs all the trust, help and support possible to move forward. Trying to "reason" with a person about phobias is unworkable and only serves to make the phobic person feel more certain that he/she is not understood or trusted.
Being a support person requires much patience and understanding. It is not an easy role to play and can become frustrating at times. What has been easy and natural for you to do all your life is suddenly impossible for this person close to you to do. When Pat and I first met, she was extremely independent, lived alone, was very outgoing, and so on. But then her panic disorder began to interfere with her life so much that it took me quite a while to adjust to the major changes that were taking place.
But through patience and understanding and trust, I believe recovery can take place. I have seen it happen. (Although setbacks can occur, you can be confident that over time recovery can take place again.)
I would like to share the following quote from the book Living Fear Free by Melvin D. Green that talks about the role of support:
"THERE IS AN ERRONEOUS BELIEF THAT BY ACCOMMODATING THE LIMITATIONS OF AGORAPHOBIA, YOU ARE PROLONGING THE PROBLEM. THIS IS NOT TRUE. YOU WOULD NOT EXPECT A "CHILD" TO FACE THE WORLD WITHOUT BEING PREPARED TO DO SO. THEY HAVE TO DEVELOP CONFIDENCE AND KNOW THAT THEY ARE SUPPORTED. IT IS THE SAME WITH THE AGORAPHOBIC. BEFORE THEY CAN "GROW" OUT OF AGORAPHOBIA, THEY MUST BE READY TO DO SO. THE DEPENDENCY CAN ONLY CHANGE WHEN THEY FEEL INDEPENDENT, AND THIS CAN ONLY HAPPEN WHEN THEY FEEL SECURE."
Some people have asked me how this situation has affected my life. To be quite honest, it has significantly and dramatically affected my life. To say otherwise would be a lie. Although it is a fair question to ask how my life has been affected, assuming it is hard on me, it is sad that some people still lose sight of the fact of who is really suffering the most. That person is the agoraphobic.
Sure, the problems that arise from agoraphobia affect all who are close to the agoraphobic. But I've come to put things into perspective. (So what if there are times I cannot sit in a restaurant with my wife? Things could be much worse!)
Over the years I have worked with Pat to move past her old fears, and in assisting her with her newsletter, I have had the opportunity to meet some wonderful people-people who suffer from agoraphobia and panic disorder. These people are so very creative, caring, sensitive and kind. They are also incredibly brave. I feel so fortunate in many ways that I have been able to meet and work with these people. It really has been a most rewarding experience that I would not trade for anything.
Special thanks to my husband of 17 years for not only being my support person, but my best friend. It is to his credit that his experience with me has broadened his caring for others with any "hard-to-understand" challenges.
Because we are close, we have had to work on a constant balancing act to be sure that I don't get overly dependent on his support, or pull away from his support too quickly. This we continue to work out together.
We'd both like to add that if one does not have a support person or a supportive "team," this does not mean that recovery is doomed. In fact, many people without such partnerships find that they do very well independently or with support groups and even other self-help means.
There are treatment approaches that do not advocate the use of support people in general. Yet most other programs and specialists recognize that being without any support is not always a workable strategy.
Since there seems to be no one single pathway to recovery, each must decide what is best for him/herself.
-Ed.
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