The following results are based on a questionnaire circulated within the anxiety disorder community on the Internet. From December, 2000, to April, 2001, a total of 67 responses were received from a variety of on-line groups devoted to anxiety disorders (including anxiety disorders in general, panic disorder (PD), agoraphobia, obsessive-compulsive disorder (OCD), post-traumatic stress disorder (PTSD), social phobia, chronic phobias or the like). These on-line groups included both Usenet and web-based forums of diverse nationality. Consequently, these results reflect a specific cross section of the general anxiety disorder community; namely, patients with Internet access who have an active interest in anxiety disorders and/or fellow patients.

Numbers preceded by the letter 'R' refer to specific respondents. No names are used to protect confidentiality. All other numbers are tallies and percentages of specific types of responses.

Overview of Results

From the responses received to our questionnaire, an image of courageous individuals attempting to cope with anxiety disorders as well as fighting against many popular misconceptions appears. Anxiety and panic are central in the lives of many of the respondents. One respondent claimed that this "is a lifetime situation. I will always have it, even if I never have another panic attack again." (R60) Many respondents, for example, relate how they have to take their current anxiety level into account when planning the day. As one respondent stated: "Often life gets rearranged depending on the severity of the anxiety that day" (R7). If one can plan one's own day and control the level of activity, symptoms can be better managed: "Routine and structure and habit in daily life helps me" (R26). Unfortunately, one does not have complete control over what happens to us during the day: "The trouble is that 'real' life is messy and unpredictable. It's bound to upset my carefully laid plans. I can control some things and not others" (R26).

The issue of control over one's everyday situations comes back time and again in the answers to our questionnaire. Planning can become quite arduous and difficult, since even minor situations can cause anxiety levels to rise beyond acceptable levels. In some cases this disables individuals from engaging in even the most mundane of daily activities. As one respondent stated: "What causes me the most trouble with my disorder is the low tolerance I have for everyday stress. I can't handle it anymore. I look to be in a quiet serene place, often causing me to shut myself off from my family and any other people that try to come into my world. My nervous system is shot and I feel like I am on overload, even when doing simple things that everyone takes for granted like going to the mall or food shopping" (R32). Misunderstanding by other people is frequently quoted as an aggravating situation.

Everyday Life

When asked what is most helpful or troublesome in everyday life, medications and Cognitive-Behavioral Therapy (CBT) stand out. Almost half of the respondents (28; 42%) reported that anxiolytic medications were either helpful or a necessity: "I do not believe I would be able to manage everyday life without medication" (R4). Similarly were psychological techniques (26; 39%); which were often variations of CBT. The combination of medication and CBT was also mentioned as helpful (16; 24%). Such results are consistent with the view that anxiety disorders involve varying degrees of psychological and biological factors that can greatly differ from individual to individual.

Other helpful items are work or activity (10), or the ability to plan one's day according to one's own inclinations (10). What causes the most trouble are worry (10), conflict and stress (10), lack of control (10), and pressure and unrealistic expectations (7).

Physicians and Psychotherapists

The respondents found their physicians and psychotherapists helpful, but not to an overwhelming extent (roughly an even split between helpful and unhelpful in both cases). Those who found their therapists and their physicians helpful often reported they took a long time to find and that they had previously consulted several who were not helpful at all. Many respondents claimed that although they found their physicians and psychotherapists helpful and understood the condition on a theoretical level, they did not really understand what they were talking about on a personal level; the only way would be to experience a panic attack themselves. "My therapist understood my condition from a professional stand point. My therapist did not ever have an anxiety attack or mental disorder, so my therapist would never fully understand where I was coming from. My therapist did understand from the books and classes and degree that she has." (R4) This was the reason for one's respondents happiness with her therapist: "one of her other client's had taken her to the emergency room when she had her own first panic attack! She was diagnosed and treated ... when the clients she'd been working with took her to the ER." (R15) For others, it remains: "They are on the outside looking in, they understand in a clinical, textbook kind of way." (R16) Sometimes respondents feel that their psychotherapists don't appreciate the severity of their condition: "No amount of mental tricks or discipline is going to prevent an attack if there is one there lurking, waiting to happen" (R7). Often, they know more about the disorder than their psychotherapist or physician: "My GP doesn't understand much but he does prescribe the Zoloft and he gives me lots of credit for knowing the ins and outs of the disorder." (R9) The knowledgeability of clients can lead to discussions between psychotherapists and clients: "She went on to explain why it wasn't a disease, at which time I countered every statement she made and drilled holes in them - thus having her accept that it was, indeed, a disease in some cases!" (R15)

Some psychotherapists attempt to relate panic attacks to childhood issues, an approach not welcomed by many respondents. "I do not wish to delve into discussions pertaining to my childhood experiences" (R14) In contrast to psychoanalytic perspectives, they often feel that CBT is the most helpful form of psychotherapy. Many also report medication as extremely helpful or even absolutely necessary. Most respondents reported that medication helped to cope with their condition and they were adamant that anxiety disorders involves brain chemistry and neurophysiological changes that are beyond their control: "it's going to be a great day when they prove that most of this IS a chemical imbalance." (R11)

Respondents unhappy about their psychiatrists or medical doctors claim: "Specialists are more knowledgeable, though not necessarily more sympathetic, they give you a prescription, tell you about the brain and the rest is just expensive conversation." (R7) Others say that "most just want to prescribe the 'SSRI' of the month" (R39) despite the fact that many respondents claim that SSRIs (Selective Serotonin Re-uptake Inhibitors) are not always helpful and sometimes involve unacceptable side effects. The SSRIs include well known medications such as fluoxetine (Prozac), paroxetine (Paxil), sertraline (Zoloft), etc.

Many respondents were very well informed about the nature of panic disorder and indicated that they had actively searched for information in newspapers, magazines, books, academic papers and on the Internet. Many are knowledgeable about the different types of medications that are available for their condition and have strong preferences about them. Some respondents reported that they diagnosed themselves on the basis of the information they collected: "After a year of periodically freaking out, I self-diagnosed using info on the net." (R7) A disease category such as anxiety disorders can provide a new perspective on a range of troublesome and disturbing experiences: "I was quite relieved to discover that there was a name for what I was experiencing." (R14) In particular, Internet discussion groups were mentioned as particularly helpful. As one respondent stated: "It was such a relief when I stumbled into the SafeZone. I had no idea there were so many people exactly like me. When I am there, I am just ordinary." (R57) In these Internet forums, individuals with anxiety disorders provide support to each other, exchange information about medications, coping strategies, and a variety of other issues.

Many respondents were not happy about the physicians they had consulted with. They found that most of them were not well-informed about anxiety disorders. Many physicians are happy to prescribe SSRIs for anxiety disorders, especially since the pharmaceutical industry promotes SSRIs for this condition. Many respondents experienced otherwise. Many tell that they had to educate their doctors to get the proper care. Most doctors don't know much about anxiety disorders: "My experience is that the vast majority of people treating anxiety disorders are wholly incompetent to do so." (R34) Respondents often had to inform their doctors about their own condition and the most appropriate treatment methods: "Every important truth that has emerged about the cause of my symptoms has been my own discovery, emerging as the result of my own methodical digging, and all my doctors have done is to ratify it and send a bill. In several cases, I have had to correct outright misdiagnoses, and in the end they have agreed that they misdiagnosed me. And then I am rewarded with another bill for my own diagnostic services." (R52) As one respondent stated: "I actually think I know more about anxiety than they do." (R12) As said before, some individuals diagnose themselves on the basis of the information they collected, but this does not help much when consulting their physicians: "Even since finding my own diagnosis and confirming it with doctors, doctors remain reluctant to read the existing medical literature and pursue further options" (R27). Others reported that they were able to strike a balance: "I personally see my family doctor and we make choices together based on what I research and want to try and her medical knowledge and advice" (R33).

Spirituality and Religion

Many respondents (42; 63%) claim to be religious or spiritual in some way or other, while roughly a third (21; 31%) answered this question with "no." Of the religious and spiritual respondents, most (9) saw no relationship between their beliefs and their condition. Others claimed that there must be some purpose to their suffering and that, in some way, they were undergoing a spiritual test or learning experience (7). Others (6) report that praying or meditation helped them to cope with their condition. For some individuals, the onset of panic attacks has made them more religious and spiritual: "During times of extreme panic, I am drawn closer to God. I pray more and, basically, depend upon Him to get me through every day." (R60) Others report that their faith had been challenged: "anxiety constantly causes me to doubt my own faith. I just can't seem to fit the two together." (R56)

Emotional Support and Obstacles

With regard to sources of emotional support, immediate family or spouse or partner (46; 69%) and friends (14; 21%) are mentioned by a great number of respondents as their most important sources of emotional support. However, such family and friends are also mentioned as the most important emotional obstacles (24 and 3 respectively) and, often, they are placed in both categories by the same individuals! Though such relationships are more often helpful, there is a great deal of diversity and ambiguity regarding the most personal forms of social support.

Other sources of emotional support are on-line discussion groups, physicians and psychotherapists, support groups, a belief in a higher power and pets. Other important obstacles are self, lack of understanding by others, and stresses of daily life. Worrying about what could happen is mentioned several times as making the situation worse. As one respondent wrote: "I am my own worst enemy. If there's something to worry about- I will do it. If there isn't - I will create something to worry about." (R12)

Sources of Information

Most respondents report that once they were aware of their condition, they set out to research it on their own initiative. Many read books (46; 69%), consulted web-sites (39; 58%), and participated in on-line discussion forums with others (32; 48%). Much less frequently mentioned were psychotherapists (10), psychiatrists (6), physicians (5), direct contact with fellow sufferers (7), and in-person support groups (2). The fact that so many respondents reported finding information on the Internet is partly related to the way this questionnaire has been circulated; through web-sites and on-line discussion forums. Not surprisingly, individuals who find information on-line were most likely to encounter the questionnaire.

Many respondents found the information provided on the web very helpful: "The Internet has been a great source of information on this disorder. Before I went on line I thought only my family had this problem. The research available on the Internet is invaluable as it covers any aspect of this disorder or view. There is also interaction with others like myself which has not always been available in the 'real world'!" (R19) Only one responded that there might be some drawback: "I think [information from the web] also has hurt me - When a lot of what I read - personal posts are very negative- It tends to rub off on me- I'm very influenced by what I read." (R11) The web provides not only information about the disorder: "Even when the [medical articles found on the web] are biased, they provide a great deal of inside as to why certain practitioners behave as they do." (R34)

Misunderstandings

The biggest misunderstanding with regard to anxiety disorders reported by our respondents is the idea that it mostly persists because of a lack of willpower (41; 61%). Most people seem to think: "That patients who fail to control their anxiety attacks through purely psychological means are somehow weak, uncourageous, or are not trying hard enough" (R27). As many have heard from well-meaning friends and physicians: "Why don't you just snap out of it?" (R23). The sufferer is to blame: "That they are self-willed or self-perpetuated" (R25). Or, as another claimed: "I feel that the greatest misconception of anxiety disorders is that they are not actually a valid problem. That people with them are simply "out of control," "over sensitive," or "crazy." That we can just "snap out of it", or "tough it out" (R47). As one respondent put it graphically: "If I really am "talking myself into it", can anyone please explain my partner's insistence that, when I am ASLEEP in bed, and they come in and cough or sneeze, I then jump awake having a panic attack? How exactly have I talked myself into that?" (R7). Put another way, the problem is often considered purely psychological in nature, it is "all in your head." (R15) Because of that, there is a quick fix available (12), such as "a warm glass of milk at bedtime and a vacation" (R14), the SSRIs, a little psychotherapy, or just a bit of willpower.

Another big misunderstanding regards the severity of anxiety disorders. Roughly a quarter of the respondents (16; 24%) feel that people underestimate the severity of the disorder and say it is not that bad. "All it would take is one anxiety attack to let them know what it truly feels like when your body is like a runaway train." (R32) "... many people will say "I've felt like that", but they really have no idea what a panic attack really is or what it's like to constantly feel anxiety." (R58) In some cases, the relentless and severe nature of anxiety disorders can exceed a person's fear of death. "It makes me not fear death, because I don't want to live like this forever." (R59) Typically, most people understand anxiety in the context of tangible threats. The notion of experiencing mortal terror in the 'absence' of a tangible threat is so contrary to conventional experience that the concept seems unbelievable or, at least, difficult to relate to.

Interestingly, some respondents (12) claim that people overreact and think they are crazy. And, actually, some of the respondents mention that most individuals with anxiety disorders are highly gifted and very sensitive individuals: "They are extremely intelligent, creative, and dependable... the "perfect employee" ... Some of the people that have so much to offer the world get hit with this condition and it seems to becoming more and more common, or perhaps less hidden" (R33). In general, there seems to be little public awareness of what having an anxiety disorder entails.

Stigma

The respondents are about evenly split in whether they report feeling socially or professionally stigmatized by having an anxiety disorder (30; 45% felt stigmatized, and 27; 40% did not). At first, this seems a surprising result since such disorders are often thought to carry a stigma.

On closer examination, however, many of the respondents who did not feel a stigma relate that this is because they carefully hide their condition: "I feel no stigma because it's not public knowledge that I am ill" (R42). Some respondents have developed quite ingenious ways to hide their anxiety or panic attacks. However, feeling a need to hide an anxiety disorder does imply knowledge or anticipation of a stigma, even if the stigma is not exercised. Also, some individuals report that because they themselves feel there should be no stigma, the issue should not matter: "I would not feel stigmatized if I were a diabetic or if I had cancer" (R31). Recognizing a stigma as irrational is personally healthy, but this still implies knowledge or anticipation of a stigma by others. Though some individuals appear to feel a true absence of stigma, it seems that considerably more than half of the respondents actually perceived some form stigma, even if indirect.

Respondents who felt stigmatized reported losing jobs, being demoted, or not being invited to social functions at work anymore. However, professional stigma seems less common than social stigma. Laws such as the Americans with Disabilities Act (ADA) seem to have reduced stigma in the workplace; despite such laws being difficult to enforce without clear proof of discrimination. And, of course, laws cannot prevent social stigma. In the long-term, public awareness and education seem the best means of reducing stigma.