|An unpublished essay originally written for the Anxiety Disorder Association of America (ADAA) column "Faces of Hope" in August, 1997. Prologue added January, 2004.|
Anxiety disorders are often described as "very treatable" conditions; meaning that most cases respond well to existing treatment strategies. Indeed, it is wonderful that treatments work well for so many people. However, success in treating 'most' cases is not success in treating 'all' cases. A significant minority of people have found treatments to be inadequate despite their greatest efforts to recover. In the absence of recovery, a person's sense of hope can diminish or seem to vanish altogether while enduring years of chronic anxiety or panic disorder.
I wrote the following essay to address the sense of profound hopelessness experienced by myself and many other chronic sufferers. I didn't try to dismiss various causes of despair because I understood they were very real and best acknowledged. Nonetheless, the ultimate statement of this essay is a form of optimism in spite of various causes of despair. By "unfelt hope" I am referring to a form of hope that has been stripped of the usual sentiments and based on the remaining rational bedrock.
Though I did favorably mention the medication paroxetine (Paxil) in the original draft, I later developed serious side effects; sudden fainting, abnormal weight gain and fatigue. These side effects ultimately forced me to taper off the medication. I have since relied solely on PRN (as needed) use of alprazolam (Xanax). Yet, the original essay was never intended to focus on medications, but rather the nature of difficulties and possibilities faced by fellow anxiety disorder people.
Finally, some comment on the Anxiety Disorder Association of America (ADAA) is warranted. During my initial phone conversations with ADAA executives (August, 1997), they encouraged me to write this essay for their newsletter's "Faces of Hope" column. Over the following months, I submitted and resubmitted the essay a number of times at their request. After they acknowledged receipt of the essay, I had to repeatedly ask for their opinion and feedback over several more months. Eventually (March 5, 1998), the Administrative Director cryptically replied, "We are unable to comment on this issue as an organization." My further requests for an explanation went unanswered. To my knowledge, the ADAA never published my essay. Ever since, the ADAA has refused reply to any e-mails from me on any topic; including attempts to reconcile our differences.
As I sit down to write this article, I am amazed by the things I have been able to do over the last few weeks. Namely, I have done my own grocery shopping, gone to the movies, eaten at restaurants, taken trains and cabs, and even spent a day at an art museum with some friends. Such things may not seem remarkable to most people, but then most people have not lived through panic disorder.
Precisely a year ago, I was writhing on the floor in the grip of a severe panic attack. Like all my severe attacks, I was overwhelmed by stifling sensations, pounding heart, and acute loss of feeling and strength throughout my body. Of course, worst of all was the flood of grotesque horror that almost seemed powerful enough to sweep me away into madness. All I could manage during such attacks was to clutch a pillow or railing with a death-grip and desperately curse away the minutes. My attacks could sometimes last hours and they could sometimes occur more than once a day.
I had been living - if you can call it living - with panic disorder for almost six years. The disorder alone was enough to make anyone miserable, if not severely depressed. However, the attacks themselves were not my only cause of despair during those years. Another cause of despair, which was significant in its own right, was all the losses I had to endure. Since the sudden onset of my panic disorder in 1991, I had lost a promising career, lost virtually all of my savings to doctor and therapy bills, lost my independence, and lost my social life.
A third cause of despair was the fact that the medical community had pretty much given up on me. Panic disorder was not at all well understood in the early 1990s. I had been through exhaustive diagnostics at the Johns Hopkins hospital and the Lahey Clinic. The final judgment of my many doctors was that I was not suffering a medical problem. I didn't know enough about medicine to debate this conclusion, but I did know there was room for doubt. The brain alone was fraught with medical uncertainties. Knowing the degree of my suffering, how could they give up on my case? Yet, the more I pressed the issue, the more I began to look like a hypochondriac. My doctors labored to convince me that I was, indeed, medically healthy and encouraged me to continue psychotherapy. I felt horribly abandoned; as though my case was simply too difficult to be bothered with.
Finally, another cause of despair came surprisingly from those who loved me. Not understanding the seriousness of my condition, people often encouraged me to accept my disorder and find some way to live with it. At first such suggestions seemed to be a form of tough love intended to get me on my feet again. Perhaps such advice might have been helpful if my attacks had been less severe. However, my attacks were horribly overwhelming and the more I considered such advice, the more misguiding it seemed. How could anyone accept a life of daily deathlike horror? How could I possibly accept my condition without somehow diminishing my own self-worth? Did my quality of life mean so little to everyone that it was acceptable for me to live like this?
Altogether, these various causes of despair produced a dangerously severe depression. Not only did I find myself wishing for death, but I even considered suicide as a means of ending the misery. Of course, I never did commit suicide. I guess I simply considered suicide for long enough to realize that I really wanted to live. What I wanted to kill was not myself, but the panic and depression within me.
So, where does "hope" come into all this terrible stuff? This column is called "Faces of Hope," right? Well, I'm not sure that I actually felt hope; as in some wonderfully inspired feeling that I would one day feel like a normal person again. But I did have hope in the sense that I continued to look for answers. Just as you are reading these words now, so did I read the words of many other sufferers and therapists and researchers. I didn't discover something helpful everyday, but month after month I found something useful in publications or the Internet. I had that elusive form of hope that I didn't actually feel, but kept me going anyway.
In time, I learned that there were many other people like myself who also suffered panic disorder. In fact, roughly one percent of the population had shared my fate. Reading on, I slowly learned more about the psychology and biology of anxiety and panic. Eventually, it seemed that my own form of panic disorder was due to an imbalance of neurotransmitters. Fortunately, there existed some medications to treat this imbalance. After several years of searching, I was finally ready to guess that paroxetine (Paxil) might correct my supposed neurotransmitter imbalance. To the delight of both myself and my doctors, my searching paid off. The terrible panic attacks of last year were my last.
Of course, my medications were not a magic bullet nor panacea for panic disorder. Though my horrific panic attacks had ended, I still had significant anxiety problems that required further therapy. Overcoming agoraphobia and various residual avoidance habits has taken allot of emotional effort. I still have problems coping with moderate stress, but otherwise my condition has vastly improved. I can now enjoy many of the mundane activities that most people take for granted.
Knowing first hand how indescribably horrible panic disorder can be, I know how trite and naive words of optimism can sound. All I can say is that myself and many other sufferers have eventually found ways to escape the terror. Our solutions are often different, but we manage to find them even when the world seems to have abandoned us. Hope may not always come in the form of good feelings; sometimes hope is simply an awareness of possibilities.