The impact of social phobia on quality of life: The advantages of anxiety support groups
Sandra C. Ieropoli & Kathleen A. Moore.
School of Psychology
Deakin University, Melbourne, 3125 Australia
Reprinted with permission from: Ieropoli, S.C. & Moore, K.A. (2002). The impact of social phobia on quality of life: The advantages of anxiety support groups. Proceedings of the 2nd Annual Conference of the Australian Psychological Society’s Psychology of Relationship Interest Group (pp. 59-65). Melbourne: The Australian Psychological Society, Inc.
Abstract: Social phobia is the least well known of the anxiety disorders and it is perhaps also the least well understood. The lifetime prevalence rates for social phobia, which range from 3% to 13%, clearly indicate that social phobia is a widespread mental health problem. Those affected by social phobia often live their lives around the limitations of the disorder including avoidance of social situations, depression and loneliness. Thus for these individuals, social phobia becomes an impairing disorder which can have long-term negative impacts on work performance and social relationships. Anxiety support groups offer an important resource to sufferers of social phobia. Support groups provide a potentially safe and confidential environment in which to interact with others. Support groups also have the potential to help to de-stigmatize the disorders for sufferers as all members share similar concerns that are often not well understood by others. The practical benefits to be derived from anxiety support groups are presented through the discussion of two case studies.
What does it mean to live with social phobia? Consider: “waking up in the morning with a chest that feels like you can’t breathe; to be constantly aware of what is happening all around you, and what potentially could happen; to walk down the street and believe that everyone is looking at you, staring from the car, from buildings, people you cannot even see, waiting for you to trip over and make a fool of yourself; to live with a mind that is constantly in motion, with a head full of negative self talk, thinking, analyzing, predicting everything that is around you every minute of the day; to drink alcohol before leaving the house for a social event; to worry days, months later about a silly comment you made to a friend, a colleague; to be a perfectionist in everything that you do and punish yourself if what you do is not perfect; to feel naked wherever you go, with all your vulnerabilities, and insecurities exposed for everyone to see; to pre-empt every conversation you are about to have, word for word, sentence for sentence, and pre-empt the response, which more often than not is negative; to wonder if it will ever end.” This is the life of someone who lives with social phobia.
Social phobia is a common problem that affects a large proportion of the population, with typical onset during the teenage years (Kasper, 1998). The results of a National Comorbidity Survey in the United States revealed a lifetime prevalence for social phobia of 13.3%, and a one-month prevalence rate of 4.5% (Magee, Eaton, Wittchen, McGonagle & Kessler, 1996). This prevalence rate is higher than that for any other anxiety disorder reported in that study. The course of social phobia is typically chronic, with an average duration of 20 years (Westenberg, 1998). For the duration of the illness, the sufferer experiences extreme anxiety caused by social experiences and performances including: speaking in front of a public audience; eating or drinking in public; using a public toilet; talking on the phone; and initiating conversation to either small groups of people, an individual or members of the opposite sex (Kasper, 1998). The essential feature of social phobia is the fear of being watched and judged by other people, with the expectation that the assessment from others will be negative (APA, 2000). Furthermore the sufferers fear that they have acted in a way that is humiliating and embarrassing (APA, 2000). This fear results in sufferers feeling extremely nervous about being in certain situations or around certain people, and it may mean that they try to avoid those situations or people. For some people their social phobia may be selective, such as public speaking, while being comfortable in other social or performance situations. This type of social phobia is referred to as non-generalized social phobia, in which only two or three situations are feared (APA, 2000). Others may have a more generalized social anxiety, becoming anxious in a variety of social and performance situations (APA, 2000).
Normal shyness is differentiated from social phobia according to the intensity of the distress experienced and the recognition that the fear is excessive or unreasonable (APA, 2000). The symptoms of social phobia can present across three levels: physical, cognitive or behavioural (Ross, 1993). The physical symptoms may include sweating, blushing, dizziness, heart palpitations, tense muscles, dry mouth, and abdominal distress. Cognitive symptoms include irrational thoughts and beliefs about social situations. The behavioural symptoms include phobic avoidance or a ‘freezing response’ in which the sufferer cannot function in a social situation (Kasper, 1998). These symptoms of social phobia are perpetuated by a vicious circle of anxiety, anticipatory anxiety and perceived negative experiences (Liebowitz, Gorman, Fyer & Klein, 1985). Anticipatory anxiety can either impair the sufferer’s performance in social situations or lead to a perception of humiliating and embarrassing performances. Negative encounters such as these, result in heightened anticipatory anxiety when faced with similar situations. Thus the situation is avoided to alleviate this excessive anxiety, reinforcing avoidance behaviour and perpetuating the sufferer’s negative perceptions (Kasper, 1998).
Social phobia is an extremely distressing and handicapping condition, in which social situations are a constant torment for the sufferer. It has enormous effects on many areas of the sufferer’s life including perceived physical and emotional health, occupational functioning, educational achievement, and interpersonal relationships (Mendlowicz & Stein, 2000; Schneier, Heckelman, Garfinkel, Campeas, Fallon, Gotow, Street, Del Bene & Liebowitz, 1994; Stein & Kean, 2000). Thus, the impact of social phobia on quality of life, a multidimensional construct encompassing physical symptoms, psychological functioning, social functioning and age-appropriate functioning (Aaronson, Bullinger & Ahmedzai, 1988), is both an important and necessary area of study.
Quality of life in Social Phobia
The onset of social phobia usually occurs at a time when social, educational and career development are of importance (Beidel, 1998). Inevitably, the interruption of these key developmental areas leave the individual at a social and occupational disadvantage, and consequently will impact on the sufferer’s quality of life. Schneier et al. (1994) explored functional impairment in 32 outpatients with social phobia by comparing their scores on two rating scales. More than half of these participants reported at least moderate impairments at some time in their lives. These impairments were a result of the social phobia and avoidance in the areas of education, employment, family relationships, marriage or romantic relationships, friendships and social networks and some leisure activities. On one of the scales, more than half of the patients reported impairments due to alcohol consumption related to their social phobia. Similarly, results from a study comparing participants with social phobia to a comparison group of individuals with herpes infection, found that participants with social phobia had significantly impaired quality of life (Wittchen & Beloch, 1996). Pronounced impairment was in the domain of role limitation due to emotional problems, social functioning and vitality. Almost half of the participants with social phobia were found to have severe impairment, compared with only 4.5% of the comparison group. Partner and family relationships, education and career development, and household or work management were the areas rated as more severely impaired by participants with social phobia.
Two epidemiologic studies have also drawn attention to the magnitude of impairment to the lives of those suffering from social phobia. The Duke Epidemiologic Catchment Area study (ECA) screened almost four thousand respondents in their homes (Davidson, Hughes, George & Blazer, 1993). Socially phobic people were more likely to be younger, less educated, of lower financial status, unmarried, female, and to have an unstable work record. Social phobia was also related to more difficulties at school during adolescence, such as fighting, telling lies and stealing, and greater suicidal ideation. As with the ECA, the National Comorbidity Survey (Magee et al., 1996) reinforced the negative impact of social phobia on the quality of life for the sufferers. The results indicated that social phobia was negatively related to education and income and significantly higher in individuals who were single, students, unemployed and not studying, and living at home with their parents. Social phobia was also associated with low social support and greater suicidal ideation.
Social phobia is frequently comorbid with other psychiatric conditions, with around 65%-80% of sufferers developing further disorders such as depression and alcoholism (Magee et al., 1996; Stein, Tancer, Gelernter, Vittone & Uhde, 1990). Research has shown that impairment to quality to life is heightened for sufferers of cormobid social phobia, as they experience even more day-to-day disability than those with social phobia alone (Davidson et al., 1993; Stein et al., 1990). Increase risk of attempted suicide is also reported for cormbid social phobia, especially if comorbid with depression (Davidson et al., 1993).
As illustrated in the studies reviewed above, life interference and impairment associated with social phobia is severe (Davidson et al., 1993; Magee et al., 1996; Schneier et al., 1994). The consequences of these impairments include academic underachievement, inability to work, under performance at work, and ultimately financial dependency (Kasper, 1998). These aversive outcomes lead to the deterioration in quality of life for the individuals, as well as placing a burden on society as a whole. However, despite the impact of social phobia, only a small proportion of individuals with social phobia seek professional help for their condition (Magee et al., 1996). A number of barriers prevent sufferers from seeking treatment, including a lack of awareness that social phobia is a treatable condition among both the public and health professionals, a perception that the condition is part of their personality, the stigma attached to all psychiatric illnesses that prevent a person seeking help, and the nature of social phobia in which the sufferer may experience anxiety at the thought of visiting the doctor and perhaps coming in contact with strangers, and thus avoid seeking help (Ross, 1993). The failure to detect and treat individuals with social phobia has lead to the formation of user groups, for example the Anxiety Disorders Association of Victoria (ADAVIC) and the Anxiety Recovery Centre (Victoria) [ARC(Vic)]. The aim of these groups, besides providing support for sufferers of anxiety, is to increase public and professional awareness of anxiety disorders, such as social phobia, and in doing so, destigmatize anxiety disorders in the general community.
The advantages of anxiety support groups
Support groups have had a relatively long history, especially in the United States (Wuthnow, 1994). These organizations provide group support for identified segments of the general population, and the best-known and most successful support group has been Alcohol Anonymous (Segee, Maguire, Ross, Malik, Colket & Davidson, 1999). However, more recently, groups addressing other mental illnesses, such as anxiety, have emerged. Compared to interventions such as cognitive behavioural therapy, support groups offer a less structured setting and encourage ventilation of feelings and sharing of experiences in a safe and confidential environment, and the use of the group to obtain peer support and emotional encouragement from others undergoing similar difficulties (Spiegel, Bloom & Yalom, 1981). Groups are guided by facilitators who assist in directing discussion and offer insight and understanding with regard to issues raised (ADAVIC, 2002). Individuals are also encouraged within groups to take a more active role in their own mental health maintenance and to evaluate the treatment options available to them.
Anxiety support groups, such as those offered by ADAVIC and ARC(Vic), achieve a variety of goals, believed to be important in the recovery process of social phobia and other anxiety disorders (Black & Blum, 1992; Das & Rae, 1999; Segee et al., 1999; Tynes, Salins, Skiba & Winstead, 1992). Support groups provide education about anxiety disorders, its causes and the types of treatments that are available, as well as information on comorbid psychiatric illnesses such as depression. Education has been considered to be an important aspect of support groups and a main reason for the continued attendance of sufferers (Black & Blum, 1992). Education is important, considering that a reason many sufferers are not treated is due to lack of awareness about their condition (Ross, 1993). Some support groups, such as ADAVIC and ARC(VIC), also provide courses, workshops and regular lectures that cover a variety of issues including coping strategies and both psychological and alternative interventions. Education, whilst not offering a cure, does help to alleviate the distress many sufferers go through, in that it provides knowledge that the condition is treatable and, as a consequence of the information obtained, will often lead the sufferer to seek appropriate treatment (Black & Blum, 1992).
Secondly, anxiety support groups offer support and encouragement for sufferers and the courage to help sufferers cope effectively during stressful times (Tynes et al., 1992). Major benefits of attendance for group members are the realization that they are not alone in their suffering and the opportunity to share their experiences with others who are in the same situation (Das & Rae, 1999). This aspect of the support groups is very reassuring for the sufferers, as they no longer feel that they are the only person with such a debilitating disorder.
Lastly, support groups provide a non-threatening atmosphere for resocialization (Segee et al., 1999). A majority of sufferers of anxiety disorders, especially those with social phobia, are cut off from everyday relationships due to the nature of their condition. Support groups offer the opportunity to begin to share with and relate to others and eventually reach out to help others, especially new members who have joined the group. The chance to share their experiences, knowledge and coping techniques with others, is considered to be a final step towards recovery for sufferers of a mental illness (Black & Blum, 1992). Sharing of feelings and experiences can often lead to increases in social support networks and positive socialization experiences which are often lacking in individuals who suffer from social phobia (Kasper, 1998). ADAVIC and ARC(VIC), not only provide the opportunity for socialization within the support groups but also through organized activities outside of the support groups, such as bush walks and dinners. These activities provide sufferers with an opportunity to meet outside the support group and the feeling of belonging to a social network.
Research investigating the effects of support groups for sufferers of social phobia is scarce, however studies focusing on support groups for anxiety disorders in general and specific anxiety disorder such as obsessive-compulsive disorder, have reported these to be of benefit to sufferers (Black & Blum, 1992; Das & Rae, 1999; Tynes et al., 1992). Results from these related studies have emphasized the importance for healthcare professionals to obtain a greater understanding of the function of anxiety support groups, and to utilize support groups to supplement the treatment of their clients.
Implications of anxiety support groups on quality of life for sufferers of social phobia
As mentioned previously, research investigating the advantages of support groups for sufferers of social phobia is limited. The roles of the anxiety support groups for these individuals are presented here through the discussion of two case studies of people with social anxiety who attended the support groups offered by ADAVIC.
Case 1: Mr T.
Mr T. was in his late 20’s when he first attended the support group. He described his fear as originating from the death of his friend of 12 years, when he was 15-years old. He subsequently felt very alone and defenseless, especially due to the frequent racism he endured while growing up in South Australia, as he was from German descent. Even when he lived in Germany for two years during his teenage years, he also was faced with racism as, despite the fact that he spoke fluent German and had inherited German features, he was an Australian. Feeling an outcast in both his country of birth and country of family origin, Mr T’s teenage years were full of confusion, fear, self-consciousness and a constant sense of not belonging. He had a very limited circle of friends and he failed to complete secondary education: following his father’s footsteps he began work in the building trade. However, the following years were filled with periods of unemployment.
In 1993, Mr T. married. In 1994 Mr T. started to regularly experience uncomfortable physical symptoms including sweatiness, trembling, shortness of breath, heart palpitations, and abdominal discomfort. Unaware of what was causing these physical symptoms, he continued to live his life with his mind constantly full of negative self-talk and a sense of alienation. He continued to try to ignore these thoughts and feelings even though they had increased in intensity and were impacting on his employment and social functioning. He began to avoid speaking in front of groups, or being in public areas such as restaurants, and socially he felt at ease only with his wife, who was highly supportive.
By accident, Mr T.’s mother come across a pamphlet about anxiety disorders and took it upon her self to inquire about these disorders as the symptoms seemed very similar to what her son was experiencing. From this, Mr T. attended weekly seminars about anxiety disorders for six weeks. It was not until several years later, and after consultations with may counselors and psychologists, that Mr T. came across a psychologist with whom he felt comfortable. He saw this psychologist fortnightly for a duration of twelve weeks of cognitive behavioural therapy. It was now that he realized he was suffering from social anxiety. Although he acknowledges that this psychologist contributed greatly to his recovery, it was not until attending the support group that he reports starting to feel ‘normal.’ Even though his psychologist gave him the tools to begin his path to recovery, he still felt alone and he believed that he would never be normal.
After his first support group at ADAVIC, Mr T. was relieved to see other ‘aliens’ just like him, sharing their stories and supporting one another. But he soon came to realize that the only ‘aliens’ who exist are somewhere in outer space and slowly he began to feel a member of society. He attended ADAVIC for a year and a half but cannot pinpoint which aspects of the support groups placed him on the road to recovery: the great depth of information he received; the support and motivation from the facilitators and other sufferers; the coping strategies he was taught; the opportunity to experience positive social outings; the workshops and lectures held by ADAVIC; or the opportunity to sit with a group of people in an environment in which he felt comfortable and simply talk. For the first time Mr T. felt part of a social network and towards the end, his attendance at the support groups was purely for social reasons. One month ago, Mr T. became a facilitator for ADAVIC. While Mr T., acknowledges that he is not completely ‘cured’ from social phobia, he now has the tools to lead a ‘normal’ life and hopes to offer other sufferers the same support and guidance he received from ADAVIC. Mr T. also hopes to undertake a course at a technical college next year.
Case 2: Mrs. B
Mrs B. was in her mid to late 30’s when she attended her first ADAVIC meeting. She is the mother of two children, however both children lived with her husband from whom she had been separated for approximately two years. Mrs B. came across ADAVIC at a health expo in Melbourne she had attended two weeks before coming to the support group. She had always considered herself to be shy, but her real difficulties began in the middle of a presentation at University, during which time she experienced a wave of panic. As a result of this experience she did not complete her presentation. Since that day she has avoided all public speaking and only chose subjects at university that did not require her to give presentations. Her social life also became limited, only attending places where her boyfriend, who later became her husband, could protect her. She did not attend any social events, including dinners or parties organized by her friends and could not understand why social events did not terrify her friends.
Mrs B. left university without completing her business degree. A couple of years later she become employed as a phone operator, booking reservations for a chain of hotels. She was with this employer for seven years and slowly everything was getting back to normal. Within that time she married and had twins.
It was only two years ago that her current difficulties began. She was promoted to team leader and therefore her responsibilities moved from booking reservations to being in charge of a team. Part of her role included meeting each month with her leader and other team leaders and informing them on the progress of her team, which meant that she had to make presentations. Fearful at the thought of presenting, she made excuses each month for missing the meetings, and she forwarded her presentation to her leader to present on behalf of her. However, she knew she could not continue this way and she resigned from her job. Other areas of her life also started to become affected including her family. She no longer felt she could do the usual activities with her children, such as taking them to the park or to their tennis and swimming classes. Her life became increasingly limited and she felt as if she had “dug herself into a deep hole”. Not long after, she separated from her husband and, she agreed it was in their best interest if the twins stayed with him. Realizing she needed help and wanting to get her family back, she decided to attend an ADAVIC support group.
Mrs B. attended five support groups over approximately four months. During the first group she attended, she sat quietly and listened to other group members. It was not until her second meeting that she starting asking questions and wanting to know what was wrong with her and why she constantly thought other people were judging her. Mrs B. received much information from both the facilitators and group members and was referred to a psychologist. At the end of the meeting she commented that she felt better listening to others who shared her experiences and who understood what she was going through. Mrs B. did not return to the support group until five weeks later. She had already had two sessions with the psychologist recommended by ADAVIC. She contributed to the discussion during her third group, sharing with others the progress she was making and how, slowly, she had begun to do things that she had previously avoided, such as taking her children to swimming class. Mrs B. returned to the support group twice more. By her last group, she was much more relaxed and her anticipatory anxiety had diminished substantially. For Mrs B. the support groups provided the information she needed to understand her condition and to begin her recovery. The support groups gave her the courage, confidence and motivation to seek professional help and in doing so she learnt not be ashamed of herself and that she was in fact normal.
Conclusion
The two cases studies illustrated above indicate that anxiety support groups are beneficial for sufferers of social anxiety. For both Mr T. and Mrs B., the major benefits of attending the support group, were the realization that they were not alone in their suffering, and access to information on anxiety disorders, coping strategies, and interventions. By attending the support group as well as seeking professional help, Mr T. and Mrs B. were able to improve their quality of life, further their social and career development, and family relationships. It is important for healthcare professionals to gain a better understanding of social phobia and the role support groups can have in assisting sufferers to deal with the consequences of their condition. Clinicians should consider referring clients who suffer from anxiety disorders to support groups to both assist the client in recovery by increasing their support network, and to assist in the progress of therapy. It is hoped that the outcomes of the cases presented in this paper will encourage further research to better define and explore the role of support groups in the recovery of social phobia and other anxiety disorders. One writer commented that support groups have “lead to increased openness and understanding of the anxiety disorders, has helped to generate funding for education and research and has been a powerful voice for the education of professionals in the field. In fact, the partnership between professionals and those in the self-help arena - like all good partnerships - has made each partner stronger, and has ultimately benefited every consumer” (Beckfield, 1995, p.1).
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Reprinted with permission from: Ieropoli, S.C. & Moore, K.A. (2002). The impact of social phobia on quality of life: The advantages of anxiety support groups. Proceedings of the 2nd Annual Conference of the Australian Psychological Society’s Psychology of Relationship Interest Group (pp. 59-65). Melbourne: The Australian Psychological Society, Inc.
