www.beyondblue.org.au 1300 22 4636

Uncovering anxietyGaining insights into personal experiences

Background

In August 2012, beyondblue undertook qualitative

market research through an online community called

Uncovering anxiety. Our objective was to gain insight

into the needs and experiences of people living with

anxiety, their family and friends. In particular, we

wanted to explore personal experiences across the

range of different anxiety conditions, information

needs and experiences with help-seeking. The

outcomes of this research have informed the strategic

directions of beyondblue’s new National Anxiety Strategy

and national awareness campaign Get to know anxiety,

launching in May 2013.

Participants

The online community involved over 360 participants who have a personal experience with anxiety, their family and friends. The community was segmented into two groups: an adult community for people aged 18 and over, and a young people community for people aged 14 to 17 years.

Participants were recruited via promotion across traditional media outlets, distribution of flyers through service providers, and posts on the beyondblue website, Facebook page and twitter.

There was a particularly high level of discussion among more than 200 members of the online community. Most of the participants in the adult community were female (82 per cent) and most lived in metropolitan areas (69 per cent), while 22 per cent lived in regional areas and nine per cent in rural locations. More than half of the participants (62 per cent) were aged 25 to 44 years; with almost one-third (27 per cent) aged 45 or over, and 12 per cent aged 18 to 24 years. The majority of participants (93 per cent) had personal experiences with anxiety, and seven per cent had cared for or supported someone with an anxiety condition. Most participants experienced more than one anxiety disorder, with

Generalised anxiety disorder (GAD) (76 per cent) being the most common, followed by Panic disorder (38 per cent) and Phobias (32 per cent). Post-traumatic stress disorder (PTSD) was experienced by 17 per cent, 12 per cent experienced Obsessive compulsive disorder (OCD) and almost three-quarters of participants (73 per cent) also experienced depression.

In the young people community, just over half of the young people came from regional areas (52 per cent), while just under half (48 per cent) lived in metropolitan areas. Again, there were higher proportions of females (86 per cent) with almost two-thirds (62 per cent) aged 16 to 17 and 38 per cent were aged 14 to 15 years. All participants had personal experiences of anxiety and many experienced more than one type of anxiety. All (100 per cent) had experienced GAD, 25 per cent a phobic disorder, 14 per cent OCD, 14 per cent Panic disorder and 67 per cent had experienced depression. None had experienced PTSD.

Methodology

The Uncovering anxiety online research community was conducted over a four-week period, during which discussion topics were posted by the moderators of the online communities and also self-generated by members. During the month, more than 50 topics were discussed in both the adult and young people communities.

Topics included:

• experiences around anxiety in general and specific anxiety conditions

• issues around accessing support and treatment

• the perceived impact of anxiety on people’s lives, including examples of stigma they experienced

• what they perceived they needed from the healthcare system and broader community.

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Summary of main findings

Lack of awareness and understanding of anxiety

In the Australian community, awareness and understanding of anxiety is low, resulting in many people being unable to identify symptoms of anxiety. For many people with anxiety, this lack of recognition lasted for a number of years — emerging in childhood, but only recognised within the context of an anxiety condition in adulthood.

“What I wished I had known is what anxiety looked like…

the signs, the causes, the effects. I waited so long

before seeking help because I did not understand the

illness. I didn’t realise what I was going through wasn’t

‘normal’.”

— Female, 25-34, NSW, metropolitan, GAD, depression

As a result of the low levels of recognition, many people ‘learn to live’ with the symptoms without help, treatment or support. However, because there is no context to their symptoms, this leads many to attribute their symptoms mistakenly to stress or worry, or being part of their

personality. In turn, this can limit people’s opportunities to live life fully, diminishing their confidence, causing them to feel alone and isolated, and increasing the likelihood of them developing depression.

“I think I’ve always had a tendency towards being anxious…

It was just the way I was. Some of the earliest things I

remember include being too scared to put up my hand in

class, even though I knew the correct answer; dreading

winning an achievement award and having to get up in

front of everyone at assembly; never asking for money to

buy lunch because I was too scared to line up and talk to

the canteen ladies, and hating phoning people, even family.

In my teenage years, anxiety meant that I was too scared

to talk to boys, join the school choir, go to discos with my

friends, catch the bus, the list goes on. I got fired from my

first and only high school job because I was petrified of

serving the customers. It’s meant years of loneliness, lost

opportunities and ultimately, several bouts of depression.”

— Female, 25-34, VIC, metropolitan, phobia, depression

High levels of stigma

The low awareness of anxiety in the Australian community means that people with anxiety feel that others don’t understand the impact that anxiety can have on people’s lives. In turn, some perceived that others were dismissive of their condition and their symptoms or anxiety conditions were not seen as ‘real’ conditions.

“A lot of people’s attitude was ‘Toughen up princess’ as

they totally do not understand what is going on and think

you should get over it and get on.”

— Female, 55-64, WA, metropolitan, PTSD, phobia, GAD,

panic disorder, depression

“My anxiety and depression is starting to affect the

relationship I have with my partner. He just keeps telling

me to ‘get over it’ and ‘stop thinking about it’. This in

turn leads to greater anxiety, especially in public, (as)

he makes me feel like I’m being ridiculous if I cannot do

something or go somewhere. I am at the stage where

anxiety is beginning to control my life again and I need

to get more help, but feel like I have minimal support.”

— Female, 25-34, VIC, metropolitan, phobia, GAD, OCD,

panic disorder, depression

As a result, people were often not treated with understanding or empathy; rather they were dismissed and not acknowledged. Often this delayed help-seeking, as people felt that they were not entitled to help or treatment, as others with ‘real problems’ were a priority.

“People who don’t understand, saying that I was just a

‘sook’ and needed to toughen up etc… These reactions

are why it has taken so long for me to actually accept that

anxiety is a part of me and that it will always be with me

and I need to always manage it. If there was no stigma

attached to it, I think I would have accepted it a lot

earlier in life and had a much happier and fulfilling life.”

— Male, 35-44, WA, metropolitan, GAD, depression

At the other end of the spectrum, many people were concerned about the perception that they may in fact be experiencing ‘a mental illness’. This brings with it the fear of being labelled as mentally ill and negative perceptions about life prospects. In turn, this led many to deny their symptoms, again prolonging help-seeking and treatment.

“I did not want to tell anyone as I was so afraid they

would put me in a mental institution.”

— Female, 25-34, NSW, metropolitan, PTSD, phobia, GAD,

panic disorder, depression

“I then started to panic, thinking I had a mental problem

and was terrified they were going to lock me away. I left

my job and hid my symptoms for two years which was a

horrible experience.”

— Female, 45-54, VIC, rural, GAD, OCD,

panic disorder, depression

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In turn, the stigma coupled with low awareness left many feeling ashamed, embarrassed and confused — leading many people to disguise or hide their symptoms and withdraw from others. Ultimately, this impacted further on the severity and/or duration of their anxiety.

“My first symptoms of depression and panic disorder

appeared when I was 23. I didn’t seek any help until two

and a half years later. By that time, it had gotten much,

much worse and I had already stopped working. I feel

that several things affected this time difference; denial,

confusion, shame, waiting for it to ‘go away’, hoping that

the next day I’d wake up feeling ‘normal’ again, and

being totally freaked out by the thought of having to take

medication. It was during this time, I developed

agoraphobia, and was petrified to leave the house, even

to go and see a GP, which further delayed seeking

professional help.”

— Female, 25-34, VIC, metropolitan, GAD,

panic disorder, depression

Barriers to seeking help

Low awareness and high stigma both reduce help-seeking. As a result, people sought help only at the point when their condition became totally overwhelming and a crisis had occurred, prompting them or others to seek treatment.

“The main thing that prompted me to seek help was not

any particular symptom per se, but more that I was

just getting more and more isolated and I felt like my

options were running out. I could barely leave the house

and I just felt like I kept making mistakes in my life.

I was barely attending uni and struggling to stay afloat

at work.”

— Female, 18-24, QLD, regional, phobia, OCD, panic disorder

“I sensed that something was not quite right for several months leading up to seeking assistance, and when I came home from work and collapsed, sobbing and shaking, my wife insisted that I seek help. The next day I visited my GP.”

— Male, 35-44, WA, metropolitan, GAD, depression

In particular, for people experiencing panic attacks, it was common for them to seek help at hospital emergency departments fearing they were experiencing an acute physical condition.

“My first thoughts were I had a tumour, lol. I had brain

scans, went to a neurologist and had everything

checked inside my head. I had doctors tell me I had

anxiety, but not me *****, I was always the most

confident of my friends. I ain’t scared, not me. Not until

I’d exhausted every other avenue and I sat down and

read about anxiety did the bomb hit. What I was reading

was exactly what I was going through. I had anxiety. Not

dealing with anxiety in that first year or so probably

made my anxiety reach a whole new level. I was at a

level I couldn’t leave the house, socialise, have a

conversation or anything. I felt my life was ruined.

During major panic attacks, I couldn’t even control my

hand-eye coordination. I couldn’t perceive how far

things were away from me. I couldn’t brush my teeth.

Me. This was scary and I needed help.”

— Male, 25-34, WA, regional, GAD, panic disorder

Those who were fortunate to have access to supportive and informed carers, partners, families, social networks and colleagues universally reported better coping and reduced negativity of impact.

“When I first realised I was suffering from anxiety (and also depression), I kept it to myself. I didn’t want to admit that I needed help. After quite a few months, at least six, I spoke to my husband who encouraged me to see my GP. It took me about four to six weeks to work up the courage to make the appointment. I felt ashamed. I felt that I’d let myself down because I couldn’t shake myself out of it.”

— Female 25-34, NSW, metropolitan, GAD, depression

As children rely on adults to contextualise and explain their physical experiences, including anxiety, the responses of parents often delayed help-seeking in childhood. In particular, parents often minimised or ignored reports of symptoms, which delayed identification, help-seeking and treatment. Also, this mindset may carry through into adulthood, resulting in further delays to identification and help-seeking.

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“My first symptoms started appearing when I was 17.

I was getting the hot and sweaty palms, thinking I was

going to die. (I) had to give up work because I couldn’t

catch the tram and slowly but surely, became a

prisoner in my own home. I tried to speak to my mum

about this, but she said it was all in my head and there

was nothing wrong with me. I just felt so alone.”

— Female, 45-54, VIC, metropolitan, GAD,

panic disorder, depression

“I don’t know how far to go back; upon reflection I’ve had

anxiety since I was about five or six, but never had a

name for it. I would just tell my mum ‘My tummy feels

funny’ or ‘I don’t feel so good’ and because I wasn’t

physically sick, my parents kept on at me about the ‘boy

who cried wolf’ – perhaps that’s part of the reason I

kept it all hidden from everyone as I got older?”

— Female, 25-34, NSW, metropolitan, GAD, depression

Treatment options are not clear

The lack of clarity around treatment options often meant the process of getting help was confusing and exhausting, adding another barrier to help-seeking. While some people felt that they had ‘tried everything’, many did not know about the variety of treatment options or of new approaches to treatment and self-help strategies available for those experiencing anxiety.

“There is a lot of information out there (and many

promises of cures too!), but it’s confusing as there is

just so much of it. Knowing what the options are,

presented in a clear and concise way would be great.

Showing the whole picture — what you can access,

rebates available for different schemes, PLUS

self-help and action you can take yourself (diet, lifestyle,

natural therapies) should not go unmentioned.”

— Female, 35-44, VIC, metropolitan, GAD

Need for increased confidence and competence among health professionals

Some participants thought that some health professionals showed a lack of understanding. As a result, some people with anxiety who sought help were left confused over ‘what was happening’ and felt unsupported, which further delayed them from seeking appropriate help and support.

“(On) my first occasion of walking into a GP (not my regular)

and telling him I thought I was suffering depression, his

only question was ‘How do you sleep?’ I said: ‘I sleep

great’. He said: ‘You’re not depressed‘. That was it.

Probably months or a year later, I had a particularly bad

weekend and again went to a GP that was not my regular.

Both were ‘walk in GPs’ as I was working in the city. I said I

didn’t know what was wrong, but that I did not want to

have another weekend like the last. She prescribed some

antidepressant medication (can’t remember which) and

sent me on my way. The biggest problem I had was the

lack of follow up. I had no idea what to expect from the

medication and the muscle shakes from excess serotonin

were annoying me. It was at this point I approached my

regular GP and got a referral to a clinical psychologist. It

was better to take the medication while being tracked and

have follow-up and support.”

— Male, 35-44, WA, metropolitan, GAD, depression

When health professionals were perceived to have dismissed symptoms or didn’t offer appropriate care and information, this led to many people with anxiety attempting to deal with it on their own. This type of response from health professionals added to the stigma people experienced because they felt their symptoms were ‘not real’.

“It took me two years to actually go see a doctor and

then he just told me to go to the chemist and get

over-the-counter weak dosage sleeping tablet. I only

used these tablets for a couple of days and then was

too scared that I would become addicted (so) I stopped.

I never went back to a doctor, but dealt with my anxiety

on my own.”

— Female, 18-24, SA, rural, GAD, panic disorder, depression

“I was embarrassed to visit a doctor about my problem

and with my personal experiences, they were not very

comforting. They simply suggested I ‘got over it’ or

‘grew up’ and certainly didn’t have the caring heart of a

counsellor.”

— Female, 14-15, NSW, metropolitan, phobia, GAD

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Special needs across population groups

There is a special need for awareness and understanding of anxiety across population groups and settings, where lack of understanding can add to stigma and delay help-seeking. This includes workplaces, schools and among parents of children with symptoms of anxiety.

“If it were better understood in the public arena, I would

definitely tell more people i.e. my workplace. I come

across as a very efficient and competent worker — and

this is true up to a point. But when the workload gets

too much and I am experiencing high anxiety, it would

be wonderful to share this with my manager and get

the support I need, and potentially avoid rough patches

altogether. This would have a huge impact on my

wellbeing. Currently, I feel I cannot do this.”

— Female, 35-44, VIC, metropolitan, GAD

“My attendance at school was getting really bad. I was

not motivated to do anything and my family noticed a

drop in my mood. It was not until I stopped going to

school completely that my mother forced me to see my

GP to get a mental health care plan.”

— Female, 16-17, NSW, metropolitan, phobia,

GAD, OCD, depression

People who support someone with anxiety need to have their own support and to be informed about anxiety. This would enable them to provide the appropriate care to family members, friends, colleagues or students.

“I care for my 14-year-old daughter who has OCD. The

first challenge was to develop a true understanding of

the power of OCD and an understanding of anxiety. But

the most serious ongoing challenge for me is to be able

to distinguish between OCD-related behaviour and

‘normal’ teenage girl behaviour. It’s not uncommon for

a teenage girl to change clothes multiple times in a day

or to take long and frequent showers, see what I mean?”

— Female, 45-54, VIC, metropolitan, carer

“Carers need their own specific support services where

they can talk about the difficulties of caring for

someone with anxiety. I think a lot of people don’t know

how to support someone with anxiety and often people

can say things which make the situation worse.”

— Female, 45-54, NSW, metropolitan, phobia

beyondblue’s response

The outcomes of this research have informed the development of beyondblue’s National Anxiety Strategy. Main areas of focus will include:

1) development of a national anxiety awareness campaign to raise awareness of anxiety in the community and, in particular, to familiarise people with the range of symptoms that may be experienced

2) launch of a new website and information resources to provide people with high-quality, clinical information about different anxiety conditions

3) information about where people can seek help for anxiety and the services available across Australia, including local support groups and online therapies

4) provision of supportive assisted counselling through the beyondblue support service. This includes online and telephone support and information.

beyondblue

beyondblue is a national, independent, not-for-profit organisation working to address issues associated with depression and anxiety in Australia. beyondblue’s vision is an Australian community that understands depression and anxiety, empowers people to seek help, and supports recovery, management and resilience. We work towards this vision by providing national leadership to reduce the impact of depression and anxiety in the Australian community.

Latitude Insights

Latitude Insights is a specialist market research company using online research communities to gain insight and understanding of people’s experiences. The research was conducted by Latitude Insight researchers: Dianne Gardner and Anna Clowry.

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Where to find more information

beyondbluewww.beyondblue.org.au 1300 22 4636Information on depression and anxiety, available treatments and where to get help.

Lifeline www.lifeline.org.au 13 11 14Access to crisis support, suicide prevention and mental health support services.

mindhealthconnectwww.mindhealthconnect.org.au Access to trusted, relevant mental health care services, online programs

and resources.

facebook.com/beyondblue twitter.com/beyondblue

www.beyondblue.org.au 1300 22 4636 © Beyond Blue Ltd. BL/1085 05/13

beyondblue National Anxiety Strategy Advisory Group

The beyondblue National Anxiety Strategy Advisory Group was established in 2012 to guide the development of beyondblue’s National Anxiety Strategy and a national awareness campaign. This advisory group has assisted in: providing advice on the development of the research questions; promoting research participation through the relevant community networks; reviewing and providing feedback on the findings and consideration of the key themes and messages; assisting in the formulation of the campaign objectives; and providing input regarding the campaign dissemination and evaluation.

Members

David Austin

Associate Professor, School of Psychology, Faculty of Health, Deakin University

Jo Abbott

Doctor, Coordinator, Anxiety Online Content Manager, Research Fellow/Health Psychologist, National e-Therapy Centre, Swinburne University

Michelle Blanchard

Doctor, Head of Projects and Partnerships, Young and Well Cooperative Research Centre

Grant Blashki

Associate Professor, Nossal Institute for Global Health and Melbourne Sustainable Society Institute

Malcolm Battersby

Professor and Head of Psychiatry, School of Medicine and Director, Flinders Human Behaviour and Health Research Unit (FHBHRU), Flinders University

Jane Burns

Associate Professor, Chief Executive Officer, Young and Well Cooperative Research Centre

Gwenda Cannard

Chief Executive Officer, Reconnexion

David Forbes

Professor, Director of Australian Centre for Posttraumatic Mental Health, Department of Psychiatry, The University of Melbourne

Michelle Graeber

Chief Executive Officer, Anxiety Recovery Centre Victoria (ARCVic)

Kathy Griffiths

Professor, Director of the Centre for Mental Health Research, The Australian National University

Sandra Lansdell

Consumer Representative, Anxiety Recovery Centre Victoria (ARCVic)

Brian Lynch

Consumer and Carer Representative, Anxiety Recovery Centre Victoria (ARCVic)

Sharon Orapeleng

Principal Project Officer, Mental Health in Multicultural Australia (MHiMA) Group

Ron Rapee

Professor, Director of the Centre for Emotional Health, Macquarie University

Janet Shaw

Chief Executive Officer, Reconnexion

Susan Spence

Professor, Deputy Vice Chancellor (Academic), Griffith University

Renee Tsatsis

Helpline Coordinator, Anxiety Recovery Centre Victoria (ARCVic)

Darryl Wade

Associate Professor, Director Education and Training, Australian Centre for Posttraumatic Mental Health, Department of Psychiatry, The University of Melbourne

Megan Walter

Consumer Representative, Anxiety Recovery Centre (ARC) Victoria

beyondblue members

Nicole Highet

National Anxiety and Perinatal Advisor

Rachel Komen

National Anxiety Strategy Project Manager

Janine Scott

General Manager Marketing and Communications

Tiffany Fox

Community Engagement Manager

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