Insights Community for beyondblue

1. www.beyondblue.org.au 1300 22 4636
Uncovering anxiety
Gaining 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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2. 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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3. 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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4. “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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5. 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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6. Where to find more information
beyondblue
www.beyondblue.org.au
1300 22 4636
Information on depression and anxiety, available treatments and
where to get help.
Lifeline
www.lifeline.org.au
13 11 14
Access to crisis support, suicide prevention and mental health support services.
mindhealthconnect
www.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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