Anxious to help - a story about the reasons for ADAVIC
By Shikkiah de Quadros-Wander
March 2004.
The episodes began to increase in severity; not only would I be dizzy but I would tremble and be sweaty and a rush of nausea would overcome me. Afterwards I would feel physically and mentally exhausted. I would spend the rest of the day nestled up in bed praying for the day to end so I wouldn't feel sick. As life continued I lived in fear of these attacks. I was always thinking, 'When will the next one occur? When is it going to get me?' Fear had taken over my life. (Alexis' Story, ADAVIC website)
One in ten Australians cannot define the limits of their anxiety. Many cannot control the degree to which it dictates what they are able to do. At this point, anxiety becomes a disorder.
Anxiety disorders are ongoing and appear in many forms. Generalised Anxiety Disorder describes a condition where a person is constantly anxious about the real or imagined possibilities of things going wrong in everyday life. Social and other phobias are specific forms of anxiety disorders. Another related condition is Panic Disorder, which involves unexpected panic attacks in circumstances that wouldn't ordinarily cause anxiety. This can lead to agoraphobia - a fear of having a panic attack in an outside situation. This severe phobia causes sufferers to avoid leaving their house at all.
ADAVIC - the Anxiety Disorders Association of Victoria - began in 1994 in response to the number of people in the local community who had anxiety problems. At the time, Anna Kouloubos was working as a volunteer in the Kew Community House and was struggling with her own experiences. 'The co-ordinator up there knew I had problems with agoraphobia and anxiety - I used to turn up with panic attacks sometimes,' she recalls. The co-ordinator also knew of others in the area in similar situations and encouraged Kouloubos to initiate a support group to meet weekly.
With the help of two social work students she managed to get the program off the ground. Apart from the support groups (which were doubled to twice a week), information sessions were conducted and the community house became a base for what was then known as the Kew Anxiety and Panic Disorders Support Group. Four years later, Anna Kouloubos decided she wanted to make changes to the way the organisation was running and relocated the administrative centre to her home. It is from here that ADAVIC has been operating since 1998 - in one room of a small unit in Kew.
The size of the office belies its enormous function. Two desks face opposite walls with computers on each, and every space on top of filing cabinets and bookshelves is taken up with colour-coded pamphlets for information sessions, psychologist referrals, or support group information. From its local beginnings, ADAVIC is fast becoming a service utilised across metropolitan Melbourne with its list of members now standing at just over 200.
The aims of this non-profit organisation are modest: to reassure people with anxiety that they are not alone; to provide an affordable, friendly and reliable service; to challenge sufferers to overcome their anxiety through support groups and workshops; to organise information sessions; and to destigmatise anxiety disorders in the community by promoting awareness, sensitivity and understanding.
Catherine Madigan is a consulting psychologist on the ADAVIC committee who specialises in treating anxiety. She describes the disorder as a combination of physical and psychological symptoms. 'The physical signs include blushing, sweating, nausea, hot and cold flushes, chest pain, rubbery legs, feeling faint and having heart palpitations,' she says, 'And the psychological signs? A lot of people tell me that their mind just goes blank.' Madigan explains that most people also experience derealisation - disconnection from the world - or an even more frightening sense of depersonalisation, a sense of disconnection from themselves.
Depending on the type of anxiety suffered, people will have their greatest trouble with the smallest things. 'Someone who gets panic attacks will have problems driving on a freeway or being in a crowded place where it's hard to escape from,' Madigan says. 'People with social anxiety will be terrified of job interviews or dating.' And when does being anxious actually become a disorder? 'A certain amount of anxiety is helpful, but when it begins to negatively impact on a person's life - when they start avoiding things they want or have to do - then it's a real problem.'
Madigan, while not against using medication in treatment, is ambivalent about benzodiazepines - the specific class of highly addictive anxiety-reducing drugs. 'For some people with very severe anxiety, without antidepressants they might not get anywhere,' she admits, 'But I'm certainly not into the benzodiazepines. It's best if people can stay away from them.' Many people also overcome anxiety through cognitive-behavioural therapy, which involves being taught to modify anxiety-provoking thoughts and replace them with constructive alternatives.
This form of therapy played a large role in the recovery of Noel Brown, now the President of ADAVIC. Brown is a 71-year-old retiree whose role entails overseeing the administrative management of the organisation. 'And if Anna has any challenging situations that she doesn't feel like tackling, then I approach the people instead,' he explains. For the man who now acts as Kouloubos' liaison in situations likely to cause anxiety, it is phenomenal that he was once a sufferer himself.
Noel Brown's problems began in 1985 when he was the manager of a linen distribution service operating from the Royal Melbourne Hospital, which serviced around 90 other hospitals across Victoria. Coming from a background in aeronautical and industrial engineering, Brown reflects on the first few years of the new job as 'extremely rewarding'. When the Labour Government came into power in the mid-eighties, there was a clash between the unions, the health department and the health minister, putting his company under threat.
Between receiving threatening phone calls at work and having his tyres slashed, Brown was finding each day progressively harder. 'I was driving through picket lines to deliver linen to hospitals because I felt very responsible,' he remembers. 'Around that time I said to [my wife] Joan, "Why are you washing my clothes in hot water? The shirts are shrinking around the collar." And that's when I realised.' What he realised was that he was experiencing some of the physical symptoms of anxiety with tightness in the chest and difficulty breathing. At that point, a doctor prescribed anxiety-reducing drugs. 'Of course they're addictive,' Brown says, shaking his head, 'but I only know that now.'
By the time his work situation had reached crisis point, Noel Brown had taken it upon himself to increase his dosage from two to ten tablets a day and was feeling no better for it. A stressful meeting resulted in a panic attack - the first of many he would experience over the next few years. The attack was so distressing that he quit his job and was referred to a psychologist, then a psychiatrist, who eased him off the medication through a combination of non-dependent drugs and cognitive-behavioural therapy.
Was the therapy effective? Brown nods and grins. '[The psychiatrist] taught me to go back every time I had a panic attack and ask myself, "Why was that so? What started it?" And I could always trace it back to something.' He thinks for a minute. 'Like I'd be in the car and I'd see one of our hospital trucks delivering linen and that would set me off.' In recognising his triggers, Brown became more conscious of where his anxiety was coming from and grew to anticipate and deal with it.
Eventually he was able to overcome more challenging situations and recovered to the point of being able to visit a sick friend in the Royal Melbourne Hospital, the place where his problems began.
Although he knew that anxiety was not uncommon, Noel didn't realise how many people shared his condition until he began attending the support group at the Kew Community House. 'I sat down and I was astounded,' Noel says, remembering the first time he attended. 'There were sixteen people in the room and they all had similar problems. I didn't like talking about it much but I thought I was unique.' The composition of the group also surprised him. 'Most of these people were professionals - very articulate, obviously intelligent people.'
He wonders now whether he depended on the support group for longer than he should have, but has no doubt about the role it played in his recovery. 'It lifted me from a plateau that the psychiatrist had got me to, to being what I think is pretty normal again,' he says with a smile. After he stopped going to the meetings, Noel retained contact with Anna Kouloubos and now, eight years on, is heading the organisation that she founded.
Kouloubos is the cornerstone of the entire operation, working every day to provide fundamental continuity, but without the seven volunteers currently working for ADAVIC she would have a difficult time keeping up with the phone calls, advertising, lecture bookings, and mailing information packs to carers and people with anxiety. Celeste Grant, a Psychology student in her Honours year at Melbourne University, has been volunteering with the association since the beginning of the year.
How does she, as a student, respond to people who call ADAVIC seeking a phone-counselling service? 'I say that I'm not a professional counsellor but I'm happy to have a chat with them about any of the problems they've been having,' she answers. 'I'm not sure that I use my psych degree at all really - it's not a matter of telling people what to do. Listening to them is so much more a part of it, and helping them feel supported.'
Today Grant received a call from a woman who was experiencing shortness of breath and having difficulty swallowing. Four doctors and a cardiologist had assured her there was nothing physically wrong with her and that her symptoms were anxiety-related. 'It was hard getting her to accept that her fear wasn't a rational fear, not a constructive fear,' she says, 'We talked about trying to stop that cycle of making the anxiety worse by monitoring the physical symptoms.'
Grant spent the rest of the phone call discussing issues that the woman could raise with her counsellor, like habits of thinking and cognitive behavioural therapy. 'It's really about empowering people,' she finishes, 'And this has been a really good introduction for me.'
ADAVIC is a good reference point for people seeking information about anxiety and panic disorders, but the weekly and fortnightly support groups (located in South Kingsville, Brunswick and Kew) continue to be the most practical ongoing service offered to people with the condition. The groups are attended on a casual basis, with anywhere from one to ten people each week, and are run by trained facilitators with a professional or personal background in anxiety.
Eva Savov is another ADAVIC member whose contact with the organisation began because of her own anxiety disorder. Savov facilitates the South Kingsville support group with three other people and has found a great deal of strength in her role. Each session begins with the reading of the creed - a set of goals and guidelines that include a statement that the groups are about making connections, not prescribing or diagnosing. Those who wish to remain anonymous or not speak at all are welcome to make that choice, and every person is entitled to an equal chance to talk.
How long people remain with the groups is an individual decision. 'Each person's recovery is going to be different, and each person's perception of anxiety is going to be different,' says Savov. 'Some people come to a support group and think it's going to change their lives forever. It's not the case. We're there to listen to them and to help them feel they're not alone.'
Earlier in the year, Eva Savov wrote an article for the ADAVIC newsletter in which she described the personal joy of watching people recover from anxiety and benefit from the advice and insight provided by the support groups. However the article also mentioned how sad she felt when people began treating the groups as 'their salvation, social gathering, therapy session or a place where they become opinionated'.
When questioned as to why she wrote the article, Savov sighs. 'You'll always have one or two people like that. For me it's not an issue, but for the other sufferers.' She is silent for a minute. 'It's not about being influenced, it's about discovering your own potential.'
The support groups run at a nominal cost to attendees and contribute little to ADAVIC's survival. This raises the same question that all non-profit organisations inevitably face: where does the money come from? 'Mainly memberships, the programs that we run, the info nights, the workshops, and a little bit of local government funding which is pretty much all for the adolescent information packs,' Kouloubos explains. 'And a Rotary Club gave us some equipment and some money as well, which we have to use very wisely.'
The lectures and workshops that ADAVIC hosts throughout the year are a crucial source of funding. Well-known psychologists and other experts in the field of anxiety often conduct these without charging a fee, allowing the proceeds from the sessions to support ADAVIC. Without these people's beliefs in the importance of the organisation, there simply wouldn't be enough money to provide a service.
Pauline McKinnon runs the Life Development Centre in Kew and has been an important figure to ADAVIC for many years. She is a psychotherapist but is best known for her work and publications on Stillness Meditation - a very simple form of meditation that she credits as playing a special role in her own recovery from anxiety and agoraphobia. Her most recent association with ADAVIC was through a generous offer to conduct a Stillness Meditation Day at the Balwyn Community House on October 11th this year.
McKinnon has an extraordinarily calming presence. She speaks in a gentle voice about the benefits of Stillness Meditation, paying close attention to her audience and addressing people by name whenever possible. While some of the people attending the session are purely interested members of the public, many others have anxiety.
Most of the questions come after Pauline McKinnon has led the first session of meditation. 'How does this actually work for anxiety?' asks one woman. 'Anxiety is a natural emotion,' McKinnon explains, 'And Stillness Meditation is also natural. When we're uncomfortable about anything, our automatic reaction is to tense our bodies. Stillness Meditation is a chance to learn to override these reactions and to practise doing this before the anxiety attacks happen.'
'What techniques did you use when you learnt this form of meditation?' another woman wants to know. McKinnon answers without hesitation. 'There are no techniques,' she says, 'It's based on simplicity. The more effort we make, the less easy it is. We have to accept that the naturalness, like the anxiety, is there within us.' She describes Stillness Meditation as a process of letting go and of giving in to a 'less evolved, less intellectual, less logical' way of overcoming stress, be it in the form of everyday pressures or an all-consuming disorder.
The relationship between Stillness and coping with anxiety may appear dubious, but ADAVIC has hosted many similar sessions - Yoga and Reiki courses, relaxation and breathing classes, and a 'sleeping better naturally' program. Other information evenings held in the past have also dealt with educating people about the effects of anxiety-reducing drugs and alternatives to prescribed medication. Does this reflect one of ADAVIC's philosophies? Kouloubos pauses before she answers. 'It's not that we're
anti-medication,' she says carefully, 'But we certainly encourage people not to develop a reliance on medication. We provide alternatives.'
ADAVIC runs as efficiently as it can, but the set-up is far from ideal. 'I want an office with a room for each girl to work in!' Kouloubos laughs when asked what her preference would be as far as her workplace is concerned. Without the funds to rent elsewhere, there is no choice for her but to continue working from her home which, for a person with agoraphobia, has both its advantages and its disadvantages. 'I'm in two minds about it,' she explains, 'With my own problem, my agoraphobia, it's easy to work. I don't have to go anywhere, do I? But I feel it's getting to the point where sooner or later I'll have to move. I need a rest from this. I'm not going to get any better myself if I'm just helping everyone else.'
Noel Brown expresses a similar feeling when questioned about ADAVIC's future. 'Anna won't always be doing that role,' he says with certainty, expressing his hope that she will one day have the freedom to pursue her own recovery. 'If she ever said, "Look, I can't do this any more," the whole thing would just collapse. There's no succession plan.'
This is a major concern for all who are affiliated with the organisation. ADAVIC is continuing to expand its services into parts of the community that have not previously had the benefit of proximity to workshops and lectures for people with anxiety. The demands on Kouloubos will only increase, but the funds to support her are simply not available or forthcoming. This does not seem to sway her from her mission to construct an email database of doctors, community houses and health services from every city council in Melbourne with a view to eventually establishing a support group in every shire.
Such a project would take many years, and the goal is not entirely unachievable. The organisation has not stopped growing since Anna Kouloubos decided that those with anxiety deserved an affordable and reliable source of information and support. From the moment it began, she knew how many people in the community needed a group like ADAVIC and was never under the illusion that the task would be small. Regardless of the limited space and funding, her vision remains undeterred. 'Everywhere,' Kouloubos insists, when asked which areas are most in need of ADAVIC's services. 'Everywhere.'
By Shikkiah de Quadros-Wander
March 2004.
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