September 12, 2023 • 23 mins
Is the Australian mental health system helping people effectively? In this final episode, we meet Shazi (she/her), who lives with dissociative identity disorder. Shazi shares her reflections on getting support, while Katie Larsen (she/they) from Mind Australia overviews gaps in the system, and the need for improvement.
On the Same Wavelength is a collaboration between the University of Melbourne School of Psychological Sciences, and SANE, Australia’s leading national mental health organisation for people with complex mental health needs, with the support of the Paul Ramsay Foundation. It is hosted by Elise Carrotte, and edited by Chris Hatzis.
Information and resources:
- National Stigma Report Card
- Mind Australia
- SANE’s information and resources
- Melbourne School of Psychological Sciences
If this podcast has brought up any challenging feelings for you, please consider reaching out to Lifeline via 13 11 14.
This podcast was recorded on the unceded lands of the Wurundjeri Woi Wurrung people of the Kulin nation, and we wish to pay respects to elders past and present, and extend our respects to any Aboriginal or Torres Strait Islander listeners.
See omnystudio.com/listener for privacy information.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Elise (00:05):
Hello and welcome to On the Same Wavelength where we
explore how we can make a better world for people
living with complex mental health issues. I'm your host, Elise,
and this is actually our final episode of the season.
I'm sure you've noticed that a lot of messaging in
the mental health world is all about encouraging people to
(00:25):
seek help. And, of course, that's important. Obviously, mental health
professionals can really make a difference in people's lives. But
what can you do when you can't access professional help
or the help that's available isn't quite right for you?
In this episode, we're focusing on how stigma and discrimination
affects mental health care.
(00:47):
The National Stigma Report Card found that over 70% of
participants experienced some level of stigma or discrimination when accessing
or receiving mental health care during the last year. In
this episode, we'll be meeting Peer Ambassador Shazi, who will
talk about her experiences accessing support for her mental health.
I also chat with Katie Larsen from Mind Australia about
(01:07):
these issues and the recent Royal Commission into Victoria's Mental
Health System.
Just a quick note that this episode touches on topics
including dissociative identity disorder, anxiety, trauma and hospitalisation. And like
all our episodes, we talk about stigma and discrimination. So
please only listen today if it feels right for you.
Shazi (01:27):
My name is Shazi. I live, um Gippsland, Victoria. And,
I'm a public speaker who happens to have disassociative identity disorder.
Elise (01:39):
Shazi loves reading and has two enormous dogs that keep
her pretty busy.
Shazi (01:43):
I love cooking and going to movies and just visiting
with good friends.
Elise (01:50):
Shazi first noticed that things weren't quite right around the
age of 40.
Shazi (01:54):
I was losing a lot of time. I was saying
and thinking things that just weren't like me and one
of the big things. I was moving around a lot
through my life, and it was almost like I had
a little life here and a little life there. And
and it wasn't until I was nearly 40 when I
realised that this isn't normal. People move around for a reason,
(02:19):
like they moved for a job or for a lifestyle change,
but not for no reason. So once I did realise
that that's when I realised that there was something very wrong.
Elise (02:31):
It was a five year journey for her to figure
out what was really going on.
I was seeing a lovely lady, and when I first suggested,
after two or three years, it might be something along
the lines of DID, but not actually DID... And I
was trying to express to her but didn't know the
(02:52):
name of dissociative or personality disorders because that was the
only space left to explore.
Shazi (03:00):
So, um and she said, 'I see no evidence of that'. And,
um and I kind of went, 'oh, oh goodness'. So I
stopped with that and, um, yeah, it took another couple
of years before a couple of incidents happened, and she's like, 'Oh,
we better run that diagnostic tool on you'.
Elise (03:20):
She was eventually diagnosed with dissociative identity disorder, also known
as 'DID', in 2004.
Shazi (03:27):
Dissociative identity disorder was formerly known as multiple personality disorder.
So when the human mind at a very young age, um,
experiences trauma that it cannot manage, it can build up
barriers in the in the mind. And those barriers or
(03:48):
walls end up developing separately to each other. And that's
how you end up with more than one personality or 'alter'.
Elise (03:58):
It took a long time for Shazi to understand her
experience of DID and her alters.
Shazi (04:03):
It's really complicated. There's 1001 and one of us. So
I first thought that it was my job to fix it,
and it took me a couple of years to realise
that that was totally outrageous of me. It took me
several years to realise that I needed to have trust
(04:28):
in my personalities and work with them instead of trying
to fix the problem.
Elise (04:34):
She also experiences high levels of anxiety.
Shazi (04:37):
At times, I can be anxious about anything from going
to my local shop to getting in the shower and
to getting the dishes done. It really depends on someone's triggers,
but because all my trauma happened in whatever house that
I lived in at any given time, basic things around
(04:58):
the house are very, very difficult for me.
Elise (05:01):
Over the years, Shazi has developed skills and techniques to
help her manage memory loss and other challenges, things like
maintaining a healthy diet and improving sleeping patterns. And techniques
like grounding, which can work like a circuit breaker for
panic attacks and flashbacks.
Shazi (05:16):
Grounding was a huge thing. Absolute huge thing for me.
In fact, it was a bit of a game changer
because it allowed me to control most of the circumstances.
But no one told me how to do that grounding.
So it was quite a difficult.. it took me years
(05:37):
to work out that it was a process.
Elise (05:45):
Shazi is very familiar with the Australian mental health system.
Shazi (05:49):
Everything from psych nurses to, you know, like at the GPs. To, um, psychologists, therapists, counsellors, psychiatrists, Um,
pretty much... even turned up at triage at the hospital.
Elise (06:09):
At one point, Shazi provided me with one word that
summarised her overall experience of getting mental health support.
Shazi (06:16):
Terrible people would be really shocked to hear how bad
it's been.
Elise (06:22):
There were challenges right back in the early days when
Shazi started bringing up the possibility of DID.
Shazi (06:29):
That first psychologist, the moment I brought it up was
very dismissive.
Later, I was sent by her to get a referral
for a, um, an MRI to simply rule out temporal
(06:50):
lobe epilepsy or brain tumour as a possible cause.
Elise (06:55):
The psychiatrist started writing a prescription for a powerful epilepsy
medication that can act as a mood stabiliser. And this
made Shazi pretty uncomfortable.
Shazi (07:04):
And I'd never set eyes on him before. And the
test hadn't been run yet. I had to sort of say,
you know, 'we're not doing that. You're kind of stepping
past your bounds here. That's not what I'm here for,
simple referrals'. So, yes, that was an awkward one.
Elise (07:21):
Getting the right assessment and diagnosis was pretty important to Shazi.
But the process was complicated, to say the least.
Shazi (07:27):
Not only was it delayed, but then the lady that
did the diagnostic tool on me actually took me to
a specialist in DID. And I had 3, 3- hour appointments
with her before it was confirmed. And I was quite
shocked at the diagnosis. It explained everything, but I was
(07:52):
still quite shocked because this you know, lady, the specialist,
is saying, 'Oh, how many of them are you?' And
I don't like, well, as far as I knew, there
was only me like, um, 'I don't know, I'm new
to this.
Elise (08:07):
Over the years, Shazi has witnessed different reactions to her DID.
Shazi (08:12):
Some people are fantastic. Some people don't bat an eyelid.
They're probably a smaller percentage of the world. I've had
people laugh at me instantly, thinking either I'm joking or
instantly thinking of the Hollywood, um, idea of what DID
(08:34):
is actually is, which is, by the way, it's not
what the TV shows. Some people will kind of back
away from me. Um, one person even became instantly afraid,
and I'm just like, Wow, and that made me question
(08:55):
whether I was a safe person to be around.
Elise (08:58):
Getting a diagnosis was one thing, but getting the right
support was another issue.
Shazi (09:03):
I've had health professionals kind of stand back themselves and
and you can see that look in their eyes. If
it's not fear, it's 'what do I do with this person?
How do I treat this person?' And I'm just like, 'Well,
you were doing fine a minute ago.'
Elise (09:20):
Some mental health professionals have tried to help but have
not had the right understanding or training about how best
to support someone with DID.
Shazi (09:29):
I've had a few people try, which has been great,
but again they went straight into cognitive behavioural therapy, which
might be something I need down the track. But really,
I need to have or to be doing the trauma
work and the memory work.
Elise (09:50):
Then there are the mental health professionals who do not
believe that she has DID.
Shazi (09:56):
Um, a lot of people are still, um, in in
mental health care are still under the impression that DID
is actually rare.
It's not. A lot of people, for some reason, have
decided that they won't, they don't believe in it. It's
simply the too hard basket, and they will rather give
(10:17):
you a different diagnosis and medicate you than deal with
you at all.
Elise (10:22):
As a result, Shazi has struggled to access the right
type of treatment and support.
Shazi (10:27):
I've had a mental health nurse abuse me because I
was 'delusional' and they were not going to buy into
my delusions.
I've had a leading psychiatrist in my area, when I
was told by a therapist, if I felt unsafe and
things were really bad to take myself to hospital, So
(10:49):
I did what I was told... and and the staff
were fantastic with me. And then they rang him up
and he said, 'Tell her to come back when we
can do something for her.' They quoted him. Actually, they
were so shocked. And then they said, 'I'm sorry'. And
they put me outside the hospital at three o'clock in
the morning with no way to get home.
Elise (11:09):
This was a doctor who Shazi had seen before who
believed that she had a different diagnosis and should be
prescribed a certain medication. He did not trust her or
believe her.
Shazi (11:20):
You know, when I actually said, 'Look, this is this
has been confirmed by a specialist. All the paperworks here,
everything else.' He just said, 'If you're not taking the pills,
don't waste my time.' And I'm like, 'they're the wrong pills.'
Elise (11:41):
Unfortunately, Shazi is not alone in these challenges
To learn more about the bigger picture. I reached out
to Mind Australia to learn more about the mental health
system and how it is or isn't helping people.
Katie (11:54):
My name is Katie Larsen. Pronouns She or they. I'm based
in Melbourne, Australia, and I'm a senior manager working across
lived experience and inclusion for marginalised communities in mainstream mental
health services.
Elise (12:09):
Katie's role involves overseeing a whole of organisation approach to
lived experience and inclusion.
I asked Katie to give me an overview of some
of the challenges that Australians face when it comes to
accessing mental health support.
Katie (12:22):
The reality is that we're often working with systems that
simply aren't meeting people's needs generally speaking. I mean, I
think the Royal Commission in Victoria essentially assessed that the
system was broken and the system was failing, and I
think probably Victoria has one of the more advanced mental
health systems in Australia. So it says a lot about
where we're at in terms of thinking about accessible mental
(12:42):
health care both in Victoria but also nationally.
Elise (12:46):
For a start, service availability and waiting times are big issues,
and services might not be affordable or accessible in rural
and remote areas.
Katie (12:54):
There's a real shortage generally of services. There's a real
shortage of staff. We have a workforce crisis in mental health.
Elise (13:02):
So it can be hard to access support at the
right time. Often, people don't know what's available or how
to get support. And for people who need to access
the system in the long term, there are lots of challenges.
Katie (13:14):
There can be inconsistency in service delivery. Something we hear
from people who work with us, as consumer and carer representatives,
find that they often have to repeat their story. They
work with a lot of different people, and that constant
change of staffing or being shuffled from one service to
another means that they're repeating stories, which can often be traumatic.
Elise (13:35):
Then, of course, there's the question of whether a service
is the right match.
Katie (13:39):
From the experience of marginalised communities, v ery often you've got
communities such as LGBTIQ+ Communities or Aboriginal and Torres Strait Islander,
or culturally diverse communities, where you have higher senses of suicidality,
disproportionately high rates of mental ill health and less trust
in the system.
In many cases, some people within these community groups haven't
(14:00):
felt safe or have had poor experiences within the system.
They don't feel confident that their identity or their cultural
background will be understood and responded to appropriately. And so
there's points where they either may move into the system
and feel inadequately served by it, or even not trust
it within the first place.
Elise (14:19):
The recent Royal Commission into Victoria's Mental Health System was
a huge piece of work in order to understand what some
of the critical issues are within the system. In Victoria,
it produced 74 recommendations.
Katie (14:31):
When the final report was released, my immediate response was hope
because I felt that a lot of what we could see,
the problems of the system were, had really been noted
in the final report.
Elise (14:46):
We can't summarise all of the messages from the report.
Otherwise this would be a very long episode. There were
recommendations around improving service availability in rural and remote areas;
links with other systems like educational, housing and justice systems;
and better supporting people from marginalised communities.
Katie (15:03):
Recognising my own bias and how I see the most
important areas of the report, b ut one of the most
critical things that came through in the report was the
role of lived experience. It's very clear and intentional about
the role of lived experience leadership, about drawing from the
knowledge base of the consumer movement, about ensuring that decision
making reflects people with lived experience and that processes simply
(15:25):
cannot proceed w ithout that.
Elise (15:27):
Lots of work is in place already to try to
improve the Victorian system. Individual mental health professionals have a
role to play as well.
Katie (15:35):
One of the key things we have to recognise is
that we all stigmatise people in different ways, we work
from the conditions of the social conditions of our life
and the way that we were raised and the world
that we live in.
And the world that we live in has not largely
been kind to people who are experiencing, um, mental ill health.
I think it's really important that those of us working
(15:57):
in mental health don't think that we're separate from the
issue of stigma. Every person who works in this space
has has, I think, a responsibility to to challenge and
critique how stigma operates within their personal practises within the
broader system in which they're working.
Elise (16:16):
People like Shazi have been dealing with a failing system
for a long time.
Shazi (16:21):
I've lived with this disorder all my life, most of
it without even knowing, and I've got a pretty good
handle on it over the years without having any information
or knowledge prior to and for a long time I
didn't even read anything on the subject. I didn't join
(16:42):
a group. I just nutted it out myself.
Elise (16:45):
Shazi did highlight one positive experience she had when seeking
mental health support.
Shazi (16:50):
I asked someone at a mental health organisation if they
knew of anybody and she suggested a lady. So I
rang that lady up. And, um, I said, 'Look, I
don't know if you can help me. I've got DID, and,
um I don't want to waste your time or anything.'
(17:12):
And she said with a little giggle, 'Oh, well, I've
been treating people with D, DID and early childhood trauma
for 18 years.'
Um, unfortunately, though she was only in that position for
a year, and the average treatment for someone with DID
(17:32):
is seven years.
Elise (17:33):
So there was a limited window of opportunity to make
a lot of progress. And unfortunately, Shazi is still struggling
to get the right support these days. That's not through
a lack of trying.
Shazi (17:45):
You know, like as far as I know, there's no one, qualified.
And this is the statement I keep getting every time
I ring, which is annually 'is there anyone there qualified
to treat me yet?' 'No, there is not.'
I'm not going to quit.
Elise (18:03):
Shazi told me about what she wants from the mental
health system.
Shazi (18:07):
To be heard. For starters, I think that's really important,
and you can't build up any trust with someone if
they're not going to even listen to your perspective or
point of view.
Um, as far as treatment is concerned, it's all there
in the book. It's really simple. We need to do
the trauma work and the memory work, and there's not
(18:27):
much in the way of medication that can help. But
there are a lot of other things that we can
be doing. We can be doing art therapies. We can
be doing equine therapies. We can be supported by the NDIS,
for example. And, um, I'm still at 59 fighting for treatment,
(18:52):
fighting for the diagnosis, to be reviewed for the NDIS
and um, five years now I've been working on that,
and I've gotten nowhere.
Elise (19:02):
Nowadays, Shazi is driven to share her story to help
others like her to know that they're not alone.
Shazi (19:08):
When I first got diagnosed, I met another lady in
the waiting room who also happened to have DID. And
then a neighbour of mine actually walked in and sat
down in the waiting room who has DID. And when
(19:29):
I looked at when I looked at what they were
experiencing and the fact that they were terrified to tell anybody.
And I'm like, Hang on, this isn't right. You need help.
But you're frightened to tell anyone because then they'll, they'll
judge you and there'll be all this stigma and you
(19:51):
won't get that help that you need. So that's kind
of where it began.
Elise (19:56):
Her first public speaking gig was 15 years ago. Her
engagements these days are wide and varied.
Shazi (20:02):
I'd say my favourite of all time would have to
be the Victorian Police Academy where I talk to recruits
every fortnight. But I also do things like businesses, lawyers,
neighbourhood houses, things like that schools even.
Elise (20:20):
As a peer ambassador at SANE, she's had lots of opportunities,
including commentating on the Royal Commission.
Shazi (20:26):
The sad part is that, personally, I haven't seen any
change since the Royal Commission. Well, there was one comment
that really stuck with me, and it's like we need
specialists in, you know, out there in all areas, and
I'm like, Well, OK, send one to Gippsland for me,
thank you very much.
And now every now and then I run into someone
(20:48):
or they'll get stuck in a certain point and I'll
be contacted. Even some mental health organisations have contacted me
when they don't know what to do for someone with DID,
even to get the current mental health care people to
actually um, understand that disassociative identity disorder is real.
Elise (21:15):
Systems can't change overnight. There are improvements in the works,
but they will take time. In the meantime, Shazi has
an important reminder for listeners whether you work in the
mental health space or not,
Shazi (21:27):
People with DID are not axe murderers. We are regular
human beings. Some of us are good, some of us
are bad and we might have more hurdles than you.
But please don't treat us any differently than anyone else.
We don't ask for special, um, you know, privileges and
(21:48):
papers and stuff like that. Um, we simply ask that
you treat us like you treat everyone else.
Elise (21:59):
That concludes today's episode and also the season a big
thank you to SANE Ambassador Shazi and Katie Larsn from
Mind Australia for their contributions to this episode.
If you're interested in learning more about Mind Australia and
the Royal Commission into Victoria's Mental Health System, I've included
links in the show notes. I also want to thank
all of my guests who've generously shared their stories and
(22:22):
their work on this podcast. We can't cover every aspect
of stigma and discrimination or share everyone's story. But I
think
I think we've covered a lot and a big thank
you to all of our listeners. I really hope you've
taken something away from these episodes. On the Same Wavelength
is a collaboration between the University of Melbourne's School of
Psychological Sciences and SANE, Australia's leading national mental health organisation
(22:45):
for people with complex mental health needs. With the support
of the Paul Ramsay Foundation,
it's hosted by me Elise Carrotte and edited by Chris Hatzis.
This podcast was recorded on the unceded lands of the
Wurundjeri Woi Wurrung people of the Kulin Nation, and we wish to
pay respects to elders past and present and extend our
respects to any Aboriginal or Torres Strait Islander listeners. If
(23:06):
this podcast has brought up any challenging feelings for you,
please consider reaching out to SANE's free counselling support via
1800 187 263 or Lifeline via 13 11 14
Hello and welcome to On the Same Wavelength where we
explore how we can make a better world for people
living with complex mental health issues. I'm your host, Elise,
and this is actually our final episode of the season.
I'm sure you've noticed that a lot of messaging in
the mental health world is all about encouraging people to
(00:25):
seek help. And, of course, that's important. Obviously, mental health
professionals can really make a difference in people's lives. But
what can you do when you can't access professional help
or the help that's available isn't quite right for you?
In this episode, we're focusing on how stigma and discrimination
affects mental health care.
(00:47):
The National Stigma Report Card found that over 70% of
participants experienced some level of stigma or discrimination when accessing
or receiving mental health care during the last year. In
this episode, we'll be meeting Peer Ambassador Shazi, who will
talk about her experiences accessing support for her mental health.
I also chat with Katie Larsen from Mind Australia about
(01:07):
these issues and the recent Royal Commission into Victoria's Mental
Health System.
Just a quick note that this episode touches on topics
including dissociative identity disorder, anxiety, trauma and hospitalisation. And like
all our episodes, we talk about stigma and discrimination. So
please only listen today if it feels right for you.
Shazi (01:27):
My name is Shazi. I live, um Gippsland, Victoria. And,
I'm a public speaker who happens to have disassociative identity disorder.
Elise (01:39):
Shazi loves reading and has two enormous dogs that keep
her pretty busy.
Shazi (01:43):
I love cooking and going to movies and just visiting
with good friends.
Elise (01:50):
Shazi first noticed that things weren't quite right around the
age of 40.
Shazi (01:54):
I was losing a lot of time. I was saying
and thinking things that just weren't like me and one
of the big things. I was moving around a lot
through my life, and it was almost like I had
a little life here and a little life there. And
and it wasn't until I was nearly 40 when I
realised that this isn't normal. People move around for a reason,
(02:19):
like they moved for a job or for a lifestyle change,
but not for no reason. So once I did realise
that that's when I realised that there was something very wrong.
Elise (02:31):
It was a five year journey for her to figure
out what was really going on.
I was seeing a lovely lady, and when I first suggested,
after two or three years, it might be something along
the lines of DID, but not actually DID... And I
was trying to express to her but didn't know the
(02:52):
name of dissociative or personality disorders because that was the
only space left to explore.
Shazi (03:00):
So, um and she said, 'I see no evidence of that'. And,
um and I kind of went, 'oh, oh goodness'. So I
stopped with that and, um, yeah, it took another couple
of years before a couple of incidents happened, and she's like, 'Oh,
we better run that diagnostic tool on you'.
Elise (03:20):
She was eventually diagnosed with dissociative identity disorder, also known
as 'DID', in 2004.
Shazi (03:27):
Dissociative identity disorder was formerly known as multiple personality disorder.
So when the human mind at a very young age, um,
experiences trauma that it cannot manage, it can build up
barriers in the in the mind. And those barriers or
(03:48):
walls end up developing separately to each other. And that's
how you end up with more than one personality or 'alter'.
Elise (03:58):
It took a long time for Shazi to understand her
experience of DID and her alters.
Shazi (04:03):
It's really complicated. There's 1001 and one of us. So
I first thought that it was my job to fix it,
and it took me a couple of years to realise
that that was totally outrageous of me. It took me
several years to realise that I needed to have trust
(04:28):
in my personalities and work with them instead of trying
to fix the problem.
Elise (04:34):
She also experiences high levels of anxiety.
Shazi (04:37):
At times, I can be anxious about anything from going
to my local shop to getting in the shower and
to getting the dishes done. It really depends on someone's triggers,
but because all my trauma happened in whatever house that
I lived in at any given time, basic things around
(04:58):
the house are very, very difficult for me.
Elise (05:01):
Over the years, Shazi has developed skills and techniques to
help her manage memory loss and other challenges, things like
maintaining a healthy diet and improving sleeping patterns. And techniques
like grounding, which can work like a circuit breaker for
panic attacks and flashbacks.
Shazi (05:16):
Grounding was a huge thing. Absolute huge thing for me.
In fact, it was a bit of a game changer
because it allowed me to control most of the circumstances.
But no one told me how to do that grounding.
So it was quite a difficult.. it took me years
(05:37):
to work out that it was a process.
Elise (05:45):
Shazi is very familiar with the Australian mental health system.
Shazi (05:49):
Everything from psych nurses to, you know, like at the GPs. To, um, psychologists, therapists, counsellors, psychiatrists, Um,
pretty much... even turned up at triage at the hospital.
Elise (06:09):
At one point, Shazi provided me with one word that
summarised her overall experience of getting mental health support.
Shazi (06:16):
Terrible people would be really shocked to hear how bad
it's been.
Elise (06:22):
There were challenges right back in the early days when
Shazi started bringing up the possibility of DID.
Shazi (06:29):
That first psychologist, the moment I brought it up was
very dismissive.
Later, I was sent by her to get a referral
for a, um, an MRI to simply rule out temporal
(06:50):
lobe epilepsy or brain tumour as a possible cause.
Elise (06:55):
The psychiatrist started writing a prescription for a powerful epilepsy
medication that can act as a mood stabiliser. And this
made Shazi pretty uncomfortable.
Shazi (07:04):
And I'd never set eyes on him before. And the
test hadn't been run yet. I had to sort of say,
you know, 'we're not doing that. You're kind of stepping
past your bounds here. That's not what I'm here for,
simple referrals'. So, yes, that was an awkward one.
Elise (07:21):
Getting the right assessment and diagnosis was pretty important to Shazi.
But the process was complicated, to say the least.
Shazi (07:27):
Not only was it delayed, but then the lady that
did the diagnostic tool on me actually took me to
a specialist in DID. And I had 3, 3- hour appointments
with her before it was confirmed. And I was quite
shocked at the diagnosis. It explained everything, but I was
(07:52):
still quite shocked because this you know, lady, the specialist,
is saying, 'Oh, how many of them are you?' And
I don't like, well, as far as I knew, there
was only me like, um, 'I don't know, I'm new
to this.
Elise (08:07):
Over the years, Shazi has witnessed different reactions to her DID.
Shazi (08:12):
Some people are fantastic. Some people don't bat an eyelid.
They're probably a smaller percentage of the world. I've had
people laugh at me instantly, thinking either I'm joking or
instantly thinking of the Hollywood, um, idea of what DID
(08:34):
is actually is, which is, by the way, it's not
what the TV shows. Some people will kind of back
away from me. Um, one person even became instantly afraid,
and I'm just like, Wow, and that made me question
(08:55):
whether I was a safe person to be around.
Elise (08:58):
Getting a diagnosis was one thing, but getting the right
support was another issue.
Shazi (09:03):
I've had health professionals kind of stand back themselves and
and you can see that look in their eyes. If
it's not fear, it's 'what do I do with this person?
How do I treat this person?' And I'm just like, 'Well,
you were doing fine a minute ago.'
Elise (09:20):
Some mental health professionals have tried to help but have
not had the right understanding or training about how best
to support someone with DID.
Shazi (09:29):
I've had a few people try, which has been great,
but again they went straight into cognitive behavioural therapy, which
might be something I need down the track. But really,
I need to have or to be doing the trauma
work and the memory work.
Elise (09:50):
Then there are the mental health professionals who do not
believe that she has DID.
Shazi (09:56):
Um, a lot of people are still, um, in in
mental health care are still under the impression that DID
is actually rare.
It's not. A lot of people, for some reason, have
decided that they won't, they don't believe in it. It's
simply the too hard basket, and they will rather give
(10:17):
you a different diagnosis and medicate you than deal with
you at all.
Elise (10:22):
As a result, Shazi has struggled to access the right
type of treatment and support.
Shazi (10:27):
I've had a mental health nurse abuse me because I
was 'delusional' and they were not going to buy into
my delusions.
I've had a leading psychiatrist in my area, when I
was told by a therapist, if I felt unsafe and
things were really bad to take myself to hospital, So
(10:49):
I did what I was told... and and the staff
were fantastic with me. And then they rang him up
and he said, 'Tell her to come back when we
can do something for her.' They quoted him. Actually, they
were so shocked. And then they said, 'I'm sorry'. And
they put me outside the hospital at three o'clock in
the morning with no way to get home.
Elise (11:09):
This was a doctor who Shazi had seen before who
believed that she had a different diagnosis and should be
prescribed a certain medication. He did not trust her or
believe her.
Shazi (11:20):
You know, when I actually said, 'Look, this is this
has been confirmed by a specialist. All the paperworks here,
everything else.' He just said, 'If you're not taking the pills,
don't waste my time.' And I'm like, 'they're the wrong pills.'
Elise (11:41):
Unfortunately, Shazi is not alone in these challenges
To learn more about the bigger picture. I reached out
to Mind Australia to learn more about the mental health
system and how it is or isn't helping people.
Katie (11:54):
My name is Katie Larsen. Pronouns She or they. I'm based
in Melbourne, Australia, and I'm a senior manager working across
lived experience and inclusion for marginalised communities in mainstream mental
health services.
Elise (12:09):
Katie's role involves overseeing a whole of organisation approach to
lived experience and inclusion.
I asked Katie to give me an overview of some
of the challenges that Australians face when it comes to
accessing mental health support.
Katie (12:22):
The reality is that we're often working with systems that
simply aren't meeting people's needs generally speaking. I mean, I
think the Royal Commission in Victoria essentially assessed that the
system was broken and the system was failing, and I
think probably Victoria has one of the more advanced mental
health systems in Australia. So it says a lot about
where we're at in terms of thinking about accessible mental
(12:42):
health care both in Victoria but also nationally.
Elise (12:46):
For a start, service availability and waiting times are big issues,
and services might not be affordable or accessible in rural
and remote areas.
Katie (12:54):
There's a real shortage generally of services. There's a real
shortage of staff. We have a workforce crisis in mental health.
Elise (13:02):
So it can be hard to access support at the
right time. Often, people don't know what's available or how
to get support. And for people who need to access
the system in the long term, there are lots of challenges.
Katie (13:14):
There can be inconsistency in service delivery. Something we hear
from people who work with us, as consumer and carer representatives,
find that they often have to repeat their story. They
work with a lot of different people, and that constant
change of staffing or being shuffled from one service to
another means that they're repeating stories, which can often be traumatic.
Elise (13:35):
Then, of course, there's the question of whether a service
is the right match.
Katie (13:39):
From the experience of marginalised communities, v ery often you've got
communities such as LGBTIQ+ Communities or Aboriginal and Torres Strait Islander,
or culturally diverse communities, where you have higher senses of suicidality,
disproportionately high rates of mental ill health and less trust
in the system.
In many cases, some people within these community groups haven't
(14:00):
felt safe or have had poor experiences within the system.
They don't feel confident that their identity or their cultural
background will be understood and responded to appropriately. And so
there's points where they either may move into the system
and feel inadequately served by it, or even not trust
it within the first place.
Elise (14:19):
The recent Royal Commission into Victoria's Mental Health System was
a huge piece of work in order to understand what some
of the critical issues are within the system. In Victoria,
it produced 74 recommendations.
Katie (14:31):
When the final report was released, my immediate response was hope
because I felt that a lot of what we could see,
the problems of the system were, had really been noted
in the final report.
Elise (14:46):
We can't summarise all of the messages from the report.
Otherwise this would be a very long episode. There were
recommendations around improving service availability in rural and remote areas;
links with other systems like educational, housing and justice systems;
and better supporting people from marginalised communities.
Katie (15:03):
Recognising my own bias and how I see the most
important areas of the report, b ut one of the most
critical things that came through in the report was the
role of lived experience. It's very clear and intentional about
the role of lived experience leadership, about drawing from the
knowledge base of the consumer movement, about ensuring that decision
making reflects people with lived experience and that processes simply
(15:25):
cannot proceed w ithout that.
Elise (15:27):
Lots of work is in place already to try to
improve the Victorian system. Individual mental health professionals have a
role to play as well.
Katie (15:35):
One of the key things we have to recognise is
that we all stigmatise people in different ways, we work
from the conditions of the social conditions of our life
and the way that we were raised and the world
that we live in.
And the world that we live in has not largely
been kind to people who are experiencing, um, mental ill health.
I think it's really important that those of us working
(15:57):
in mental health don't think that we're separate from the
issue of stigma. Every person who works in this space
has has, I think, a responsibility to to challenge and
critique how stigma operates within their personal practises within the
broader system in which they're working.
Elise (16:16):
People like Shazi have been dealing with a failing system
for a long time.
Shazi (16:21):
I've lived with this disorder all my life, most of
it without even knowing, and I've got a pretty good
handle on it over the years without having any information
or knowledge prior to and for a long time I
didn't even read anything on the subject. I didn't join
(16:42):
a group. I just nutted it out myself.
Elise (16:45):
Shazi did highlight one positive experience she had when seeking
mental health support.
Shazi (16:50):
I asked someone at a mental health organisation if they
knew of anybody and she suggested a lady. So I
rang that lady up. And, um, I said, 'Look, I
don't know if you can help me. I've got DID, and,
um I don't want to waste your time or anything.'
(17:12):
And she said with a little giggle, 'Oh, well, I've
been treating people with D, DID and early childhood trauma
for 18 years.'
Um, unfortunately, though she was only in that position for
a year, and the average treatment for someone with DID
(17:32):
is seven years.
Elise (17:33):
So there was a limited window of opportunity to make
a lot of progress. And unfortunately, Shazi is still struggling
to get the right support these days. That's not through
a lack of trying.
Shazi (17:45):
You know, like as far as I know, there's no one, qualified.
And this is the statement I keep getting every time
I ring, which is annually 'is there anyone there qualified
to treat me yet?' 'No, there is not.'
I'm not going to quit.
Elise (18:03):
Shazi told me about what she wants from the mental
health system.
Shazi (18:07):
To be heard. For starters, I think that's really important,
and you can't build up any trust with someone if
they're not going to even listen to your perspective or
point of view.
Um, as far as treatment is concerned, it's all there
in the book. It's really simple. We need to do
the trauma work and the memory work, and there's not
(18:27):
much in the way of medication that can help. But
there are a lot of other things that we can
be doing. We can be doing art therapies. We can
be doing equine therapies. We can be supported by the NDIS,
for example. And, um, I'm still at 59 fighting for treatment,
(18:52):
fighting for the diagnosis, to be reviewed for the NDIS
and um, five years now I've been working on that,
and I've gotten nowhere.
Elise (19:02):
Nowadays, Shazi is driven to share her story to help
others like her to know that they're not alone.
Shazi (19:08):
When I first got diagnosed, I met another lady in
the waiting room who also happened to have DID. And
then a neighbour of mine actually walked in and sat
down in the waiting room who has DID. And when
(19:29):
I looked at when I looked at what they were
experiencing and the fact that they were terrified to tell anybody.
And I'm like, Hang on, this isn't right. You need help.
But you're frightened to tell anyone because then they'll, they'll
judge you and there'll be all this stigma and you
(19:51):
won't get that help that you need. So that's kind
of where it began.
Elise (19:56):
Her first public speaking gig was 15 years ago. Her
engagements these days are wide and varied.
Shazi (20:02):
I'd say my favourite of all time would have to
be the Victorian Police Academy where I talk to recruits
every fortnight. But I also do things like businesses, lawyers,
neighbourhood houses, things like that schools even.
Elise (20:20):
As a peer ambassador at SANE, she's had lots of opportunities,
including commentating on the Royal Commission.
Shazi (20:26):
The sad part is that, personally, I haven't seen any
change since the Royal Commission. Well, there was one comment
that really stuck with me, and it's like we need
specialists in, you know, out there in all areas, and
I'm like, Well, OK, send one to Gippsland for me,
thank you very much.
And now every now and then I run into someone
(20:48):
or they'll get stuck in a certain point and I'll
be contacted. Even some mental health organisations have contacted me
when they don't know what to do for someone with DID,
even to get the current mental health care people to
actually um, understand that disassociative identity disorder is real.
Elise (21:15):
Systems can't change overnight. There are improvements in the works,
but they will take time. In the meantime, Shazi has
an important reminder for listeners whether you work in the
mental health space or not,
Shazi (21:27):
People with DID are not axe murderers. We are regular
human beings. Some of us are good, some of us
are bad and we might have more hurdles than you.
But please don't treat us any differently than anyone else.
We don't ask for special, um, you know, privileges and
(21:48):
papers and stuff like that. Um, we simply ask that
you treat us like you treat everyone else.
Elise (21:59):
That concludes today's episode and also the season a big
thank you to SANE Ambassador Shazi and Katie Larsn from
Mind Australia for their contributions to this episode.
If you're interested in learning more about Mind Australia and
the Royal Commission into Victoria's Mental Health System, I've included
links in the show notes. I also want to thank
all of my guests who've generously shared their stories and
(22:22):
their work on this podcast. We can't cover every aspect
of stigma and discrimination or share everyone's story. But I
think
I think we've covered a lot and a big thank
you to all of our listeners. I really hope you've
taken something away from these episodes. On the Same Wavelength
is a collaboration between the University of Melbourne's School of
Psychological Sciences and SANE, Australia's leading national mental health organisation
(22:45):
for people with complex mental health needs. With the support
of the Paul Ramsay Foundation,
it's hosted by me Elise Carrotte and edited by Chris Hatzis.
This podcast was recorded on the unceded lands of the
Wurundjeri Woi Wurrung people of the Kulin Nation, and we wish to
pay respects to elders past and present and extend our
respects to any Aboriginal or Torres Strait Islander listeners. If
(23:06):
this podcast has brought up any challenging feelings for you,
please consider reaching out to SANE's free counselling support via
1800 187 263 or Lifeline via 13 11 14
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