December 12, 2024 • 42 mins
WARNING: This episode contains conversations about eating disorders and suicide that may be triggering to some listeners.
When Katya Jaski was first diagnosed with atypical anorexia nervosa at the age of 13 in 2020 she didn't think she was sick enough. A year later, at the height of the pandemic, Katya's eating disorder became so serious she was admitted to Melbourne’s Monash Children's Hospital.
If you or anyone you know has an eating disorder, or if you would like information, referrals or counselling for eating disorders, disordered eating or body image concerns, contact The Butterfly Foundation on 1800 33 3673 or butterfly.org.au
If you need help in a crisis, call Lifeline on 13 11 14 or contact lifeline.org.au. For further information about depression contact Beyond Blue on 1300 224 636 or talk to your GP, local health professional or someone you trust.
Created and Produced by Malin Hägglund and Lucy Hatcher.
See omnystudio.com/listener for privacy information.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:07):
You are listening to seven New Spectrum with me Marlon Heglund,
and this is social media's toxic influence on eating disorders.
This episode contains conversations about eating disorders and suicide that
may be triggering to some listeners.
Speaker 2 (00:28):
I think my eating sort of first developed when lockdown
had sort of just started in Melbourne.
Speaker 3 (00:34):
The simplest way that I like to talk about it
is that the genes load the gun and the environment
calls the trigger.
Speaker 4 (00:39):
All of that diet culture and those sorts of things
that it is only one of the factors that caused
the problem.
Speaker 5 (00:46):
We started our Humani to raise the age of social
media saisonship game in sixteen.
Speaker 6 (00:52):
Rob Evans' daughter Live took her own life at fifteen.
Speaker 7 (00:56):
Which is the thought of having her been in a
hole underground somewhere by herself. And I'll never get those
that are going words down, my head down and scared.
I'm so scared.
Speaker 3 (01:05):
We are saying that clients are coming back again and
again and again.
Speaker 8 (01:10):
Okay, let's look at that. What needs to change.
Speaker 9 (01:14):
We are committed to doing whatever we can to prevent
people getting an eating disorder, but knowing what those steps
are and where that money is best spent. That's still
you know, we need to do more work in that space.
Speaker 2 (01:39):
I think my eating sort of first developed when Lockdown
had sort of just started in Melbourne and you know,
at thirteen years old and sort of struggling with friendships
and who I am and whatever nonmal teenager things that
were sort of like, oh, wow, maybe people will like
me if I looked, if nor I look skinnier or
(02:02):
something like that. So that was sort of how it
first started.
Speaker 1 (02:05):
It's April twenty twenty and it's been three months since
Australia recorded its first COVID nineteen case. Thirteen year old
Katya Jaski is living in the Australian state of Victoria
following the tough stay at home restrictions put in place
by the government to reduce.
Speaker 10 (02:20):
The spread of the new disease.
Speaker 1 (02:22):
Like any teenager, Katya spending time on social media and
finding new trends. The latest ones are on how to
stay fit and healthy during lockdown. They're called lockdown glow ups,
and the hope, she says, was to essentially look like
a new person once things returned to normal.
Speaker 2 (02:41):
Initially, it was just you know, exercising and cutting back
a little bit, but those sort of thoughts about the
obsessions towards food, they really crept in within the first,
you know, month or so of me doing this. So bye,
I'd say, due of twenty twenty, I had really cut
(03:03):
back my eating and I was exercising quite a bit,
and sort of that continued until September where I was
diagnosed by a pediatrician who my mum had sort of
been trying to see who would actually sort of help
with these things, and she diagnosed me with anorexia.
Speaker 1 (03:23):
Katya was far from alone in her struggle. Approximately one
million Australians live with an eating disorder in any given year,
but there was a sharp rise during the pandemic. Eating
disorder Recovery coach Millie Thomas battled anorexia for fifteen years
and explains what factors could lead to someone developing and
eating disorder.
Speaker 3 (03:44):
The simplest way that I like to talk about it
is that the genes load the gun and the environment
pulls the trigger. So someone is genetically predisposed to having
an eating disorder. They then have the personality characteristics that
also predispose them to having an eating disorder, and then
they're put into an environment where that trigger is pulled.
So there are so many different factors, but I think
(04:06):
one of the biggest ones at the moment is definitely
social media. So we are seeing such a change in
the way that people socialize because of social media, the
way that people communicate.
Speaker 8 (04:19):
When I was unwell and I was on WED for.
Speaker 3 (04:20):
Fifteen years and in the height of it, really social
media was not something that was at the forefront.
Speaker 8 (04:28):
We didn't really it was the startings of it were
there that we had basic phones. We did not have smartphones.
Speaker 3 (04:33):
I had to go to the news agent to compare
myself to women in magazines, whereas now young people have
it in the palms of their hands, almost inescapable.
Speaker 2 (04:43):
I was convinced that I couldn't have anorexia because I
didn't see myself as being underweight enough. I think about
it a lot, actually, because although I wasn't at a
point of severe malnutrition and being severely underweight, I was
(05:07):
still not at my ideal weight for a then fourteen
year old girl. But my pediatrician's reaction to that was
that I had a typical anorexia because I wasn't underweight,
even though that was just me trying to convince them
that I was fine. That actually really set me back
(05:28):
quite a bit for many years, because I was thinking, no,
I can't have anorexia because I'm not sick enough. I
have atypical anorexia. And it's kind of just if somebody
says you have atypical anorexia, it's sort of just like
a participation award kind of thing. It's like, yeah, you
(05:48):
sort of have this, but you're not really good enough,
so we'll give you this term instead. You know, it
was very harmful for me.
Speaker 1 (05:55):
Actually feeling invalidated by a diagnosis is a common experience
for says Merely. She explains that people in recovery and
those still struggling often compare the severity of different types
of eating disorders. This comparison can be especially harmful to
someone who has been labeled as atypical, as it made
(06:15):
result in the patients wanting.
Speaker 10 (06:17):
To lose more weight.
Speaker 3 (06:18):
In the meantime, whilst they're losing more weight, cognitively they're
declining and the eating disorders clause A digging in deeper.
So it really is something that needs to be addressed,
and I think with more education for medical professionals around
the fact that weight is only one factor when we
look at eating disorders, and when we're looking at someone
who's reaching out for help, it's really important that we
(06:41):
don't invalidate them just on the basis that their weight
might seem to be quote unquote Okay, you know, let's
look at it holistically.
Speaker 8 (06:49):
Let's look at where their body should be sitting.
Speaker 3 (06:51):
Just because it's sitting fine on the BMI scale, it
actually doesn't mean anything. There's so many other factors that
need to be taken into consideration when we're looking at
whether someone is well or not.
Speaker 1 (07:02):
Millie is also an NLP practitioner, which is short for
neurolinguistic programming. It's a technique that aims to change the
way your brain has been wired by your eating disorder.
It was the technique she first encountered in her own
recovery that she now uses to support her patients around
the clock within a multidisciplinary team.
Speaker 3 (07:22):
So one of my moments was with my NLP neur
linguistic programming therapist said to me, you know, you don't
have an eating disorder.
Speaker 8 (07:31):
An eating disorder is not something that you have. It's
something that you do.
Speaker 3 (07:35):
It's a behavior that's be kind of habit, and habits
can be changed.
Speaker 8 (07:39):
If you really want to. It's not something that you
have for life.
Speaker 3 (07:43):
This is something that you're doing just like someone else's
doing anxiety. And so the very personality characteristics that got
me into my eating disorder are the very personality characteristics
that got me out of my eating disorder. It's just
I learned to channel them in different ways and that's
what I help my own clients to do as well.
Speaker 1 (08:01):
For Katya, nearly a year will pass from her diagnosis
until she's admitted to Monash.
Speaker 10 (08:06):
Children's Hospital for treatments.
Speaker 1 (08:08):
During this time, she engaged with more harmful content on
social media, finding validation by comparing herself to strangers online,
further fueling her struggle with the disorder.
Speaker 2 (08:23):
So I was first admitted in August of twenty twenty one,
and sort of the process around where I live is
that if you're of so your blood pressure and your
heart rate and your weight or whatever, within your community,
somebody is sort of checking in, whether it's a GP
or clinician or something like that, and if they sort
(08:45):
of reach a point where it's beginning to be unsafe
for you to be still in the community, they will
send you to the emergency department where from there they
will admit you. So that was sort of how that
first happened for me, and every subsequent admission was always
in that same process.
Speaker 1 (09:04):
At Monash Children's Hospital, Katya is checked into a ward
where the main focus, she says, is for her to
gain enough weight to safely return home. The ward, she says,
is not specifically for eating disorders, yet most of the
patients are young women also suffering from anorexia nervosa.
Speaker 2 (09:23):
The interesting thing about that ward is that they say
they are not a physical war. So when I had
to go there, they wouldn't treat my eating disorder because
that is a physical illness, so they would not you know,
if I wouldn't eat, they couldn't do anything about it
because they say, no, we're not going to feed you
NASA gastrically, because this isn't a physical war. This is
(09:44):
the mental health ward.
Speaker 1 (09:51):
During Katya's recurring hospital stays, attending school required coordination between
hospital staff and her teachers, allowing her to continue her
studies remotely. Making friends, though, was less straightforward. Most patients
on the ward weren't strict bedrest, limiting how they could
spend their time together. One constant during Katya's readmissions was
(10:14):
a girl she often saw in the general area. Her
name was Olivia Evans, but she preferred to be called Live.
Speaker 7 (10:21):
Live was always a very creative, probably a little bit
different as a kid like She used to like having
more grown up conversations. I suppose just using more words
like kids that want to play in the sand pits,
you want to have a conversation to get to know
now that their future, and things like that. But such
a kind hearted girl never had been bad to say
(10:45):
about anyone part her own self work.
Speaker 1 (10:49):
Live was thirteen years old when she first met Katya
at the hospital in twenty twenty one. They were only
one year apart in age and would often see each
other in the common areas, whether times exchange books. Live
had a passion for writing stories and drawing. Rob says
that she would ask the nurses to bring in photos
of their dogs so she'd had something new to sketch.
Speaker 10 (11:11):
Rob says Live.
Speaker 1 (11:12):
Wanted to help other people going through the same disorder
as her, but recovery proved far tougher than she'd imagined.
Catch Out remembers how Rob used to describe Live.
Speaker 2 (11:22):
One of the things lives dad Rob likes to say
is that Live was a square peg trying to be
fit into a triangle shape hole. And I think that's
really true, is that the current approach to treating eating
disorders is completely one sized fits all. It's here's some food,
(11:45):
eat it or don't eat it, whatever, and then we
will send you home once you're fine. And that sort
of method is just it was just so.
Speaker 7 (11:57):
Wrong for Live, I say around hole at same concept. Yeah, yeah,
And this is why we need those tailed solutions, right,
because you can't just keep trying to put that square
peg into a hole that's is not designed for it.
Speaker 1 (12:14):
Live's journey began around March in twenty twenty one, when
she first began showing signs of disordered eating. Rob quickly
caught onto his daughter's tactics to avoid food at both
his and her mom's house and took her to a
GP who urged him to take Live to the emergency.
Speaker 10 (12:31):
Department for more tests.
Speaker 1 (12:32):
About two weeks later, after spending time in the community
and attending family therapy, Rob says Live was admitted to
the hospital for the first time.
Speaker 7 (12:41):
One of the things that we thought that would happen
because it's a mental health disorder that when she's in hospital,
then what a great place for her to get help
with their mental health. Now, we pretty quickly found out
because we asked the questions, when do we start doing
work on our mental health? Is that we don't do
(13:02):
that here that happens out in the community. It's like
what so as a parent, that doesn't really make sense.
But whether it's funding, resourceing, whatever, their job in the
hospital is to make them medically well so that they
can then be in a position for their brain to
be nouraged to then have the growth and the learning
(13:24):
and all that kind of stuff. But again, if you
look at at the end of this over two years,
that she had forty hospitals andsus sometimes forty four zero
and the longest I think was about thirty two to
thirty five days in a row. Right, So every time
(13:47):
she would go in, we would have no idea is
this going to be two days, three days a week
or is it going to be over a month. And
because she probably I haven't done the exact numbers, let's
say she spent around eighteen to ninety percent a third
time over to meeting hospital with a mental health disorder,
(14:10):
and they're telling you that in that ninety percent time,
we are not going to work on our mental health.
What hope she got.
Speaker 1 (14:27):
Her physical symptoms were being treated but not her mental
health issues.
Speaker 10 (14:31):
She says there was.
Speaker 1 (14:33):
A point where she'd found an identity in the eating
disorder and where the hospital became her safe place. Validation
has started to come from how many admissions she had
compared to the other patients. This process was something Catcher
saw in Live as well.
Speaker 8 (14:48):
I think this revolving draw.
Speaker 3 (14:51):
Mentality for want of a better word, that occurs in
an the Australian treatment landscape is incredibly incredibly damaging. If
we are seeing that clients are coming back again and
again and again, Okay.
Speaker 8 (15:05):
Let's look at that. What needs to change?
Speaker 3 (15:09):
Not oh well, hopefully one day it will click. It's like, okay,
let's look at the program. Let's look at how we're
treating these individuals. What can be done differently to hopefully
create a different outcome. And I think that's something that
it doesn't seem to be happening, and I think it
really really needs to. I think, you know, we need
(15:30):
to be looking at people in a really holistic manner.
We need to look at their entire situations. We can't
have say someone coming into a treatment program because they
have anorex or they have believe they're or binge eating
disorder or orthorexia or afford saying right, they are in
this box here and they will do this type of
treatment and if that doesn't work, well, we'll try it again.
(15:53):
Because at the end of the day, every individual is different,
and eating disorders tailor themselves to each INDIVI and that's
we must tailor treatment to each individual as well. And
I think that is something that is not done nearly enough.
Speaker 1 (16:09):
Live's time at Munash Children's Hospital was very different to
katyas though they were both battling the same disorder.
Speaker 10 (16:17):
Live wasn't recovering.
Speaker 2 (16:18):
She always walked with her head down, she didn't speak
to anybody. She was always in a private room because
she just didn't want to interact with anybody and she
didn't sort of want to see anybody. And it was
just really heartbreaking to see how much that this eating
just sort of had taken away from her.
Speaker 1 (16:40):
Live's condition escalated to high risk, with security guards posted
nearby to make sure she wouldn't attempt to escape or
harm herself, and since she wouldn't eat, she would have
to be strapped down on her hospital bed and fed
through a tube to receive the nourishment she needed to survive.
Speaker 7 (16:57):
It's her because apparent to watch that, the poor kid
that needs to go through it so screaming and all
that kind of stuff. Every other patient on that would
and probably the one next Doordy can hear what's going on,
and there's distress. Now because we've been in there so
many times, they know what to live. They know what
she's going for. Guys often talk about the eating disorders
(17:19):
like having claws, and they were just getting deeper and
deeper into her. And so you know, her sense of
self worth. I mean, if you see photos of a
beautiful young girl, but she used to say how ugly
she was, how fat she was around here, and she
used to walk around like this and saying how fat
this is, and you know, it was just really really
(17:41):
horrible for her sense of self worth. And then towards
the end, I think she was just searching for ways
to end her life.
Speaker 1 (17:51):
The day that would become lives last began like any other.
It was a Wednesday on the twenty eighth of April
in twenty twenty three. Live was at her mom's house
waiting for an upcoming medical appointment when Rob noticed something
wasn't right during a FaceTime call. Concerned but not alarmed,
Rob decided to take her to the park, but soon
(18:12):
after they arrived, Live started vomiting. I'm sure if she
had taken something. He immediately called triple zero. When the
ambulance arrived, Rob fell into a familiar routine, one he
had been through many times before. He knew exactly what
details to share and how to help the first responders,
But this time something changed, something happened that would stay
(18:35):
with him forever.
Speaker 7 (18:37):
As she said to me that Live home pire with you,
and I had to go and get something out of
my car, which was just at the next to the ambulance.
And she'd never done this before. So often I would
follow in the car behind the ambulance, and she just
(18:58):
kept yelling, with my dad, with my dad, with my dad.
I'm made her dad, So I'm so silly, she said,
I'm so scared that I'm so scared. So obviously she's
known what she's done.
Speaker 1 (19:10):
At the hospital, Rob walked into Live's room to find
it crowded with fifteen people. Once it was confirmed that
she had ingested pills, they moved her to the ICU,
where her blood work began to show slow signs of improvements.
Rob left the hospital hopeful that Live would be okay.
He returned home, but just hours later the phone rang.
(19:30):
It was the doctor's urging him to come back. Once
back at the hospital, he was told Live's liver had
been filled with blood and she needed a transplant and
she would be transferred to the children's hospital.
Speaker 7 (19:42):
It took them about an hour to put all the
monitors and everything on to Live in, all wives and everything.
It's like one of those I imagine you stretched to
say in the end, it's so much equipment all around it.
And they said, look, there's probably no point in me
coming for a few hours to hospital because it's going
to take us quite a while to do everything they
(20:04):
need at the other end. But you know, the rest
is sure. We're looking after et cetera. That might have
happened in the afternoon now And so her mum then
went later to be with her, and a few hours
later I get a phone call from Royal Children's and said,
are you what time he coming in? And I said,
(20:28):
I'm playing to come in in I don't know. It's
nine minute drive from here to the roch So I said, look,
I'm planning to leave in about an hour or so.
They said you need to come now. I said, were
talking end of life? When you said yeah.
Speaker 1 (20:46):
When Rob returned to the hospital, he and Liv's mom,
we're told Live had been declared briented and they had
to decide when to turn off to medical equipment keeping
her alive.
Speaker 7 (20:56):
So we talked about it. Where I how do we
get to how do we get to this moment right here?
And we both agree with that. Look, this is the
fourtnth's times have tried to end her life, and as
much as are weird tried, we meant to really go.
(21:26):
I have no words to explain what it feels like
as apparent to lose a child. I think anyone that
has lost a child understands that there are so many
weird things that you think this for the last two years,
this has been a twenty four to seventh thing, making
sure everything's dead.
Speaker 5 (21:46):
Luck.
Speaker 7 (21:47):
But she's in the room, that she in the house,
that she can't escape from the house that you know,
knives are locked up, all these other things are secured
and it's a twenty four to seven thing. You're not
sleeping proper, your mind for sitting, coaching through food and
all that. And then just like that, the other side
(22:07):
of it is you don't have to do that every again,
and you've gone from so much attention to none of
that and she's gone, and like even now, like it's
that was the twenty eighth of April twenty twenty three.
(22:28):
I feel like there's something I didn't know what I
was I was going to do, but thrust into the
media spotlight and just thinking, you know what, I need
to make this better for other kids and new lives
legacy to in any way stay connected with her. I
think that's important. I'm just not going to let the
(22:48):
world not know who you were. And I feel like
that's my juniorsic.
Speaker 1 (22:55):
Dad Robertson has become an advocate for better treatment disorders
staying connected to Live. Through his work, he helped create
two full time dog therapy programs for hospitals and secured
government funding for in home support for patients and families.
When Katya learned about Live's passing, she had been out
of the hospital for four months.
Speaker 2 (23:16):
That could have been me, you know that could have
been so many people is It's a very very serious illness,
and I don't think there was a part of me
that really understood that and really understood the things that
the doctors and everybody was telling me was true until
I heard that.
Speaker 1 (23:35):
Katya has managed to stay out of the hospital despite
some close calls. She has remained committed to her outpatient program,
meeting with a psychiatrist or GP once a week.
Speaker 8 (23:46):
You can fully recover.
Speaker 3 (23:47):
If there's anyone listening out there today who's doubting and thinking,
but I've had this for twenty years.
Speaker 8 (23:52):
I'm a lost cause you are not.
Speaker 3 (23:55):
I have worked with people that have battled this illness
for forty years and they are now well. No matter
how long or how hard you've struggled with this, you
can get well. So please don't feel defeated.
Speaker 8 (24:07):
Please know that you.
Speaker 3 (24:09):
Can have a life on the other side, completely free
from your eating disorder, and you deserve to have that life.
Speaker 1 (24:17):
In September twenty twenty three, sixteen year old Katya was
invited to Canberra to speak at the Body, Image and
Social Media Roundtable at Parliament House. The event was co
hosted by Federal mp Sy Daniel and the Butterfly Foundation
in national charity supporting those dealing with eating disorders and
body image issues. The roundtable also included researchers and meta representatives.
Speaker 4 (24:41):
We've got more than one point one million people currently
within eating disorder and hundreds of thousands of people being
diagnosed every year. A lot of this increase is being
driven by social media.
Speaker 11 (24:51):
The algorithm piece, whereby if I have an eating disorder,
or indeed, if I'm anyone, I should be able to
clear my algorithm history, clear my cage if you like,
because the way the algorithm works is that if you
have an unhealthy obsession with eating disorder content, it's going
to give you more of that content.
Speaker 2 (25:11):
It's a step in the right direction. You know. It
obviously won't change everything, but sort of just having some
people listening to your concerns. I don't think Instagram and
Facebook are the biggest offenders in this issue. I think
(25:32):
companies like Twitter x and TikTok are significantly worse. But
TikTok did not come to our roundable, so they were
invited in, but they did not come so interesting.
Speaker 1 (25:48):
The roundtable made twenty one recommendations of them. Catch up things.
Restricting people under the age of sixteen from social media
is the most important. Butterfly Foundation CEO Jim Hungerford is
among those calling for better regulations around social.
Speaker 4 (26:06):
Media because it escalates on a very much an individual basis.
All of that diet culture and those sorts of things
act and it is only one of the factors that
caused the problem. And so we are calling for really
dramatically increased regulation of the social media platforms so that
their platforms can be helpful and they are helpful for
(26:26):
a bunch of people, but they're also harmful for more.
So we need much better regulation there. So we want
to ensure that you put in all of those prevention
factors and try and stop this crisis from getting worse
and start turning it around so that we have more
people getting well and we have people getting ill.
Speaker 6 (26:43):
Kay wins Lett, we started an initiative here, a social
initiative called thirty six Months, and you have been so
fantastic in pointing out to the world the dangers of
social media. So thirty six months is the idea of
changing the law here in Australia. Allow thirteen to sixteen
spoken so beautifully on this topic. A message for the
Prime Minister about how important this is.
Speaker 12 (27:06):
I slightly shy away from giving messages to important political figures,
but what I would certainly say is that the fact
that there is a conversation about it that is gaining
momentum in this country is incredibly important because what that's doing,
it's making families feel seen and heard. And if parents
(27:29):
feel that they can bump into each other at the
school gates and have an exchange about what they're going
through and feel known, that I think matters more than
anything else for families, that's really important.
Speaker 5 (27:45):
I'd say that out mission has always been healthy team
development focused on the critical these six months between thirty
and sixteen, but we wanted to have a really clear
objective of some in technima, and so that initial objective
was raising the age of social media citizenship from thirteen
(28:07):
to sixteen.
Speaker 1 (28:08):
Greg Atwells is a director of Thirty six Months, a
campaign for social media regulation. Their petition to raise the
age for social media access from thirteen to sixteen received
one hundred and twenty seven thousand signatures in just a
few months, and in the last week on November, a
bill banning children under sixteen from social media.
Speaker 10 (28:28):
Passed the lower House of the Federal Parliament, and.
Speaker 5 (28:31):
We've heard lots of announcements that were exciting and I
guess in favor of what we were asking for. But
until we look at the details and until we see
what the legislation is, until we see what actually ends
up passing through Parliament, that I sort of hold my
breath a little bit. But given what we've reviewed of
(28:54):
what was introduced to parliament today, I.
Speaker 7 (28:57):
Think they've got it right.
Speaker 6 (29:01):
We are on the way to pick up doctor Billy
Garvey flying in from Melbourne. He's ready for a big down.
Speaker 7 (29:06):
Oh shoot, Greg, I'm doing it in tro.
Speaker 1 (29:10):
Doing their campaign, Thirty six Months also aimed to bring
younger audiences into the conversation about social media.
Speaker 5 (29:18):
I'll never forget the moment. We're in a boys' school
actually and sort of year seven eight nine students, so
sort of within that age we do. And we've a
co founder of thirty six Months. As the room put
your hand up if you would rather not have to
(29:42):
deal with kind of social media in your lives right now,
and pretty.
Speaker 7 (29:47):
Much every hand in our auditorium went up.
Speaker 5 (29:51):
You know, we were never trying to stop young people
from communicating on the Internet or access in entertainment or
educational e. The components of social media that we felt
like qualify the service for more regulation with three things.
One gamify online interaction that makes using the service highly addictive, two.
Speaker 7 (30:15):
An algorithm that.
Speaker 5 (30:18):
Targets vulnerabilities and feeds unhealthy obsessions, and three the ability
to receive and share commentary with a social network, kind
of allowing things like cyberbulling to grow in the shadows
of the service. And so apps like Snapchat, TikTok, Instagram
(30:39):
kind of fulfill that criteria and therefore I think should
be regulated more than they are.
Speaker 7 (30:46):
And it worked. They're changing the laws within two weeks,
and yes there will be implementation issues and all that
kind of stuff, but it's like, do you know what,
this is the right thing to do. We need to
do something to protect our kids, and you know, I'm
just praying to be part of that as well.
Speaker 1 (31:00):
Labor MP and former nurse Emily Savall battled and eating
disorder in her teens and says that a new federal
loss are a good start to protecting young people, but
there's still much more to do.
Speaker 9 (31:12):
Look, firstly, can I say that what CARTI has done
in advocating and sharing her story is really amazing and
something that I think is really incredible, and that's a
credit to her that she's used sort of her experience
to turn something bad into something good. And I think
that's what, you know, we all try and do with
(31:34):
things that we go through.
Speaker 7 (31:35):
In our lives.
Speaker 1 (31:36):
Even with a federal government raising the social media age
limit to sixteen, there's still a long way to go
to help those with eating disorders. In twenty twenty three,
a ten year National Eating Disorders Strategy was developed, highlighting
the need for better care across Australia, but the strategy
hasn't received government funding yet, despite eating disorder is costing
(31:57):
the economy sixty seven billion annually.
Speaker 4 (32:00):
We've got the roadmap of what to do, we just
need to get the funding to actually deliver on that.
And I think for us, the most critical part there
is prevention. We're calling for five percent of the healthcare
funding that goes into eating disorders to be put into prevention,
and we know that for every dollar it's spent in prevention,
it provides so much more long term benefit than therapy.
Speaker 1 (32:22):
How eating disorders are funded in Australia differs from state states.
In twenty twenty three, the federal government's announced it would
provide seventy million in grants for innovative programs to research
and treat mental health and eating disorders, improve services, educate
health professionals, and support patients and their families and cares.
Speaker 10 (32:44):
Emily Suval also thinks prevention is key.
Speaker 9 (32:46):
The right neuge gaps in the research around eating disorders,
and so without that research, knowing how to effectively.
Speaker 8 (32:56):
Prevent is going to be challenging over time.
Speaker 9 (33:00):
It's an area of particularly mental illness that has historically
received low amounts of research investment, and so that's something
that I know our government is aware of and advocating
for more investment. Certainly in terms of the research, prevention
(33:21):
is ky. Absolutely, we are committed to doing whatever we
can to prevent people getting an eating disorder, but knowing
what those steps are and where that money is best spent,
that still you know we need to do more work.
Speaker 8 (33:36):
In that space.
Speaker 1 (33:36):
Doing her own battle with an eating disorder, Emily was
moved to the adult health system at just sixteen years
old and placed in the general psychiatric unit against her will.
Speaker 10 (33:47):
The system deemed her old.
Speaker 1 (33:48):
Enough for medical decisions but too unwell to make them,
leading her to being placed under the Mental Health Act,
with a court appointed guardian to decide for her. Today,
she's been part of New South Wales governments opening a
new facility in Newcastle she helps.
Speaker 10 (34:04):
It will play a key role.
Speaker 1 (34:05):
In treatments in what is currently a gap in treatment
for people in Australia. While there are a range of
rebates for health services under the Medicare Benefit scheme, it
only covers some of the treatments.
Speaker 4 (34:18):
And so, for instance, there are Medicare supports and so
for each visit you can go on a specific plan
and then you get some payments for each visit that
you might need. However, for someone with an eating disorder,
that those plans can be designed with forty sessions involved
over a period of time. And then if you imagine, well,
the practitioner might be reimbursed let's say ninety dollars, but
(34:41):
for them to be able to exist, they might have
to charge one hundred and eighty dollars. And if you've
got forty visits and each one a gap of one
hundred dollars, you've got to take time off work, You've
got to travel even though the government does support, it
is really hard for people to actually get the help
that they need. And I spoke about the intense therapy
(35:02):
that needs to be supplied. We have our residential facility
up in Queensland Winding Narrator, and so Wandy provides support
for people who really need intensive therapy over a long
period of time to turn their life around. That is
incredibly expensive to do for those people that can literally
be life saving.
Speaker 10 (35:21):
So what's next.
Speaker 1 (35:22):
Eating disorders are often misunderstood and surrounded by stigma and
misconceptions that makes it harder for people to seek help.
Many believe these illnesses are a choice, a lack of
willpower or indifference. Understanding the reality of eating disorders and
knowing where to turn for support are crucial steps in
addressing this widespread issue.
Speaker 4 (35:43):
So overcoming that stigma is really a major initial issue.
And then the other problem is knowing where to go.
And because of the lack of awareness around eating disorders,
people don't know should I go to my local GP,
who should I speak to? How should I reach out?
Speaker 1 (36:01):
Eating disorder Recovery Coach nearly also has subvision of better treatments.
Speaker 3 (36:06):
What I would love to see is that recovery coaching
gets recognized under medicare. There are a lot of people
that really benefit from recovery coaching that kind of afford it,
So I think that would be really really important, and
ultimately from a dream, we're going with a dream dream here.
It would be great to have hubs of recovery coaches
in each stake because they know that some states don't
(36:27):
have the ability to have face to face recovery coaching.
Speaker 8 (36:32):
I think the other thing too, that is really really
important is education.
Speaker 3 (36:37):
Medical professionals across the board need to be educated more
when it comes to eating disorders, so that they understand
what to look out for. They understand that it's not
just about wait. They understand that it's not a choice,
so that that person that first touch point that that
person has, when they get the courage to reach out,
they have a positive experience, they don't feel invalidated.
Speaker 8 (36:59):
There is still lots to be done.
Speaker 3 (37:00):
There is a lot that has been done which is amazing,
and I think there's a lot of community support out
there which is wonderful, but we've still got a long
way to go.
Speaker 1 (37:10):
It's almost been the two years since Live passed away
and Rob hasn't missed the beat in his fight for
an improved care system for eating disorders in this country.
This Christmas will be Rob's second without her. On her
birthday and the day she passed, the family honors her
with a special dinner, a toast, and memories of the
good times they shared.
Speaker 7 (37:30):
I find that live has a way of just taking
me to whatever that next thing is. It's like, Okay,
you've done that. She gets on the phone and says, hey,
you know, to go talk to my dad about this.
So then I get a phone call about something else
and say, okay, yeah, this sounds like something's worthwhile. It's
really a complex, complex thing, But I'm grateful for the
(37:54):
people that I get to talk to, and you know,
we keep advocating for change, and hopefully one day I
can be talking to you about how am she's now
the world's number one eating the sort of training facility.
Speaker 1 (38:05):
Rob also carries some of her ashes inside a bracelet.
He cares with him every day.
Speaker 7 (38:10):
Rick kiss every day, and it's important to remain connected.
Just the thought of having her been in a hole
under ground somewhere by herself, and I'll never get those
echoing words out of my head down. I'm scared, and
I'm so scared. I'm scared, so scared. Don't leave me.
Don't leave me. I'll never leave you live, that's okay.
(38:31):
And you know all of this, despite all the pain,
I never ever gave up on her. She said to me,
do you ever wish she didn't have me? I said never,
not like, let me even think really, I said never,
And I said live. I know that you're going to
recover from this. And even when the doctor said that
we haven't in which of her life support, yeah, I
(38:52):
didn't believe it. And I'm like, no, She's going to
be okay.
Speaker 1 (38:55):
Katya is eighteen now, and it's been five years since
she first felt ill. Since then, she's become a passionate
advocate for change, openly sharing her own experience along the way.
She's graduated high school and even help developed an inhume
hospitalization program in Victoria, the same program that once supported her.
As for how her recovery journey has looked like, she's
(39:18):
more cautious about how she uses social media. She found
support in friends and her immediate family, who had learned
over the years about what could be triggering to talk about.
Speaker 2 (39:29):
You know, my Mom is still very cautious. She's so worried.
Bless her, she just does she's so worried about me
sort of going back because of how traumatic it was
for her as well, that if I even mentioning disorder,
she's like, are you feeling okay? Like it's my promise,
are feeling mine? So she's probably more cautious than I
(39:52):
am about what's being discussed. I think it's a very
misunderstood disorder. And I think people they do mean the
best when they say those things, but often comments are like, wow,
you're looking so healthy or wow, you know you're looking
much better. Is kind of like a bit uh, because
(40:18):
because the eating disorder, just because you're in recovery, it
doesn't mean that you're completely better. I kind of think
about it like somebody who is an alcoholic. You can
recover and you can maybe not drink for thirty years,
but you can never pick up another drink again, because
(40:40):
otherwise that is going to trigger your illness and send
you back, potentially into a dark place.
Speaker 8 (40:49):
And I think it's the same.
Speaker 7 (40:50):
Thing with eating disorders. Is I have been recovered.
Speaker 2 (40:53):
For almost two years now, I think, but I don't
think I would ever be able to diet in the
future or things like that, because it just it is
a lifelong sort of illness that you're dealing with. And
(41:14):
even though I'm in a great space mentally, I just
there are always little things that I have to be
cautious of, and I have to be cautious about the
things that I discussed with people because I don't want
it to sort of trigger something that is still very
deep in my brain.
Speaker 1 (41:35):
You have listened to seven Year Spectrum with me Malin Haglund.
This episode was produced by myself and Lucy Hatcher. If
you are someone you know has an eating disorder or
would like some information, referrals, or counseling for eating disorders,
disordered eating, or body image concerns, contact the Butterfly Foundation
on one eight hundred three three three six seven three
(41:58):
or Butterfly dot org. If you need help in a crisis,
call Lifeline on thirteen eleven fourteen. For further information about depression,
contact Beyond Blue on one three hundred two two four
six three six, or talk to a GP local health
professional or someone you trust
You are listening to seven New Spectrum with me Marlon Heglund,
and this is social media's toxic influence on eating disorders.
This episode contains conversations about eating disorders and suicide that
may be triggering to some listeners.
Speaker 2 (00:28):
I think my eating sort of first developed when lockdown
had sort of just started in Melbourne.
Speaker 3 (00:34):
The simplest way that I like to talk about it
is that the genes load the gun and the environment
calls the trigger.
Speaker 4 (00:39):
All of that diet culture and those sorts of things
that it is only one of the factors that caused
the problem.
Speaker 5 (00:46):
We started our Humani to raise the age of social
media saisonship game in sixteen.
Speaker 6 (00:52):
Rob Evans' daughter Live took her own life at fifteen.
Speaker 7 (00:56):
Which is the thought of having her been in a
hole underground somewhere by herself. And I'll never get those
that are going words down, my head down and scared.
I'm so scared.
Speaker 3 (01:05):
We are saying that clients are coming back again and
again and again.
Speaker 8 (01:10):
Okay, let's look at that. What needs to change.
Speaker 9 (01:14):
We are committed to doing whatever we can to prevent
people getting an eating disorder, but knowing what those steps
are and where that money is best spent. That's still
you know, we need to do more work in that space.
Speaker 2 (01:39):
I think my eating sort of first developed when Lockdown
had sort of just started in Melbourne and you know,
at thirteen years old and sort of struggling with friendships
and who I am and whatever nonmal teenager things that
were sort of like, oh, wow, maybe people will like
me if I looked, if nor I look skinnier or
(02:02):
something like that. So that was sort of how it
first started.
Speaker 1 (02:05):
It's April twenty twenty and it's been three months since
Australia recorded its first COVID nineteen case. Thirteen year old
Katya Jaski is living in the Australian state of Victoria
following the tough stay at home restrictions put in place
by the government to reduce.
Speaker 10 (02:20):
The spread of the new disease.
Speaker 1 (02:22):
Like any teenager, Katya spending time on social media and
finding new trends. The latest ones are on how to
stay fit and healthy during lockdown. They're called lockdown glow ups,
and the hope, she says, was to essentially look like
a new person once things returned to normal.
Speaker 2 (02:41):
Initially, it was just you know, exercising and cutting back
a little bit, but those sort of thoughts about the
obsessions towards food, they really crept in within the first,
you know, month or so of me doing this. So bye,
I'd say, due of twenty twenty, I had really cut
(03:03):
back my eating and I was exercising quite a bit,
and sort of that continued until September where I was
diagnosed by a pediatrician who my mum had sort of
been trying to see who would actually sort of help
with these things, and she diagnosed me with anorexia.
Speaker 1 (03:23):
Katya was far from alone in her struggle. Approximately one
million Australians live with an eating disorder in any given year,
but there was a sharp rise during the pandemic. Eating
disorder Recovery coach Millie Thomas battled anorexia for fifteen years
and explains what factors could lead to someone developing and
eating disorder.
Speaker 3 (03:44):
The simplest way that I like to talk about it
is that the genes load the gun and the environment
pulls the trigger. So someone is genetically predisposed to having
an eating disorder. They then have the personality characteristics that
also predispose them to having an eating disorder, and then
they're put into an environment where that trigger is pulled.
So there are so many different factors, but I think
(04:06):
one of the biggest ones at the moment is definitely
social media. So we are seeing such a change in
the way that people socialize because of social media, the
way that people communicate.
Speaker 8 (04:19):
When I was unwell and I was on WED for.
Speaker 3 (04:20):
Fifteen years and in the height of it, really social
media was not something that was at the forefront.
Speaker 8 (04:28):
We didn't really it was the startings of it were
there that we had basic phones. We did not have smartphones.
Speaker 3 (04:33):
I had to go to the news agent to compare
myself to women in magazines, whereas now young people have
it in the palms of their hands, almost inescapable.
Speaker 2 (04:43):
I was convinced that I couldn't have anorexia because I
didn't see myself as being underweight enough. I think about
it a lot, actually, because although I wasn't at a
point of severe malnutrition and being severely underweight, I was
(05:07):
still not at my ideal weight for a then fourteen
year old girl. But my pediatrician's reaction to that was
that I had a typical anorexia because I wasn't underweight,
even though that was just me trying to convince them
that I was fine. That actually really set me back
(05:28):
quite a bit for many years, because I was thinking, no,
I can't have anorexia because I'm not sick enough. I
have atypical anorexia. And it's kind of just if somebody
says you have atypical anorexia, it's sort of just like
a participation award kind of thing. It's like, yeah, you
(05:48):
sort of have this, but you're not really good enough,
so we'll give you this term instead. You know, it
was very harmful for me.
Speaker 1 (05:55):
Actually feeling invalidated by a diagnosis is a common experience
for says Merely. She explains that people in recovery and
those still struggling often compare the severity of different types
of eating disorders. This comparison can be especially harmful to
someone who has been labeled as atypical, as it made
(06:15):
result in the patients wanting.
Speaker 10 (06:17):
To lose more weight.
Speaker 3 (06:18):
In the meantime, whilst they're losing more weight, cognitively they're
declining and the eating disorders clause A digging in deeper.
So it really is something that needs to be addressed,
and I think with more education for medical professionals around
the fact that weight is only one factor when we
look at eating disorders, and when we're looking at someone
who's reaching out for help, it's really important that we
(06:41):
don't invalidate them just on the basis that their weight
might seem to be quote unquote Okay, you know, let's
look at it holistically.
Speaker 8 (06:49):
Let's look at where their body should be sitting.
Speaker 3 (06:51):
Just because it's sitting fine on the BMI scale, it
actually doesn't mean anything. There's so many other factors that
need to be taken into consideration when we're looking at
whether someone is well or not.
Speaker 1 (07:02):
Millie is also an NLP practitioner, which is short for
neurolinguistic programming. It's a technique that aims to change the
way your brain has been wired by your eating disorder.
It was the technique she first encountered in her own
recovery that she now uses to support her patients around
the clock within a multidisciplinary team.
Speaker 3 (07:22):
So one of my moments was with my NLP neur
linguistic programming therapist said to me, you know, you don't
have an eating disorder.
Speaker 8 (07:31):
An eating disorder is not something that you have. It's
something that you do.
Speaker 3 (07:35):
It's a behavior that's be kind of habit, and habits
can be changed.
Speaker 8 (07:39):
If you really want to. It's not something that you
have for life.
Speaker 3 (07:43):
This is something that you're doing just like someone else's
doing anxiety. And so the very personality characteristics that got
me into my eating disorder are the very personality characteristics
that got me out of my eating disorder. It's just
I learned to channel them in different ways and that's
what I help my own clients to do as well.
Speaker 1 (08:01):
For Katya, nearly a year will pass from her diagnosis
until she's admitted to Monash.
Speaker 10 (08:06):
Children's Hospital for treatments.
Speaker 1 (08:08):
During this time, she engaged with more harmful content on
social media, finding validation by comparing herself to strangers online,
further fueling her struggle with the disorder.
Speaker 2 (08:23):
So I was first admitted in August of twenty twenty one,
and sort of the process around where I live is
that if you're of so your blood pressure and your
heart rate and your weight or whatever, within your community,
somebody is sort of checking in, whether it's a GP
or clinician or something like that, and if they sort
(08:45):
of reach a point where it's beginning to be unsafe
for you to be still in the community, they will
send you to the emergency department where from there they
will admit you. So that was sort of how that
first happened for me, and every subsequent admission was always
in that same process.
Speaker 1 (09:04):
At Monash Children's Hospital, Katya is checked into a ward
where the main focus, she says, is for her to
gain enough weight to safely return home. The ward, she says,
is not specifically for eating disorders, yet most of the
patients are young women also suffering from anorexia nervosa.
Speaker 2 (09:23):
The interesting thing about that ward is that they say
they are not a physical war. So when I had
to go there, they wouldn't treat my eating disorder because
that is a physical illness, so they would not you know,
if I wouldn't eat, they couldn't do anything about it
because they say, no, we're not going to feed you
NASA gastrically, because this isn't a physical war. This is
(09:44):
the mental health ward.
Speaker 1 (09:51):
During Katya's recurring hospital stays, attending school required coordination between
hospital staff and her teachers, allowing her to continue her
studies remotely. Making friends, though, was less straightforward. Most patients
on the ward weren't strict bedrest, limiting how they could
spend their time together. One constant during Katya's readmissions was
(10:14):
a girl she often saw in the general area. Her
name was Olivia Evans, but she preferred to be called Live.
Speaker 7 (10:21):
Live was always a very creative, probably a little bit
different as a kid like She used to like having
more grown up conversations. I suppose just using more words
like kids that want to play in the sand pits,
you want to have a conversation to get to know
now that their future, and things like that. But such
a kind hearted girl never had been bad to say
(10:45):
about anyone part her own self work.
Speaker 1 (10:49):
Live was thirteen years old when she first met Katya
at the hospital in twenty twenty one. They were only
one year apart in age and would often see each
other in the common areas, whether times exchange books. Live
had a passion for writing stories and drawing. Rob says
that she would ask the nurses to bring in photos
of their dogs so she'd had something new to sketch.
Speaker 10 (11:11):
Rob says Live.
Speaker 1 (11:12):
Wanted to help other people going through the same disorder
as her, but recovery proved far tougher than she'd imagined.
Catch Out remembers how Rob used to describe Live.
Speaker 2 (11:22):
One of the things lives dad Rob likes to say
is that Live was a square peg trying to be
fit into a triangle shape hole. And I think that's
really true, is that the current approach to treating eating
disorders is completely one sized fits all. It's here's some food,
(11:45):
eat it or don't eat it, whatever, and then we
will send you home once you're fine. And that sort
of method is just it was just so.
Speaker 7 (11:57):
Wrong for Live, I say around hole at same concept. Yeah, yeah,
And this is why we need those tailed solutions, right,
because you can't just keep trying to put that square
peg into a hole that's is not designed for it.
Speaker 1 (12:14):
Live's journey began around March in twenty twenty one, when
she first began showing signs of disordered eating. Rob quickly
caught onto his daughter's tactics to avoid food at both
his and her mom's house and took her to a
GP who urged him to take Live to the emergency.
Speaker 10 (12:31):
Department for more tests.
Speaker 1 (12:32):
About two weeks later, after spending time in the community
and attending family therapy, Rob says Live was admitted to
the hospital for the first time.
Speaker 7 (12:41):
One of the things that we thought that would happen
because it's a mental health disorder that when she's in hospital,
then what a great place for her to get help
with their mental health. Now, we pretty quickly found out
because we asked the questions, when do we start doing
work on our mental health? Is that we don't do
(13:02):
that here that happens out in the community. It's like
what so as a parent, that doesn't really make sense.
But whether it's funding, resourceing, whatever, their job in the
hospital is to make them medically well so that they
can then be in a position for their brain to
be nouraged to then have the growth and the learning
(13:24):
and all that kind of stuff. But again, if you
look at at the end of this over two years,
that she had forty hospitals andsus sometimes forty four zero
and the longest I think was about thirty two to
thirty five days in a row. Right, So every time
(13:47):
she would go in, we would have no idea is
this going to be two days, three days a week
or is it going to be over a month. And
because she probably I haven't done the exact numbers, let's
say she spent around eighteen to ninety percent a third
time over to meeting hospital with a mental health disorder,
(14:10):
and they're telling you that in that ninety percent time,
we are not going to work on our mental health.
What hope she got.
Speaker 1 (14:27):
Her physical symptoms were being treated but not her mental
health issues.
Speaker 10 (14:31):
She says there was.
Speaker 1 (14:33):
A point where she'd found an identity in the eating
disorder and where the hospital became her safe place. Validation
has started to come from how many admissions she had
compared to the other patients. This process was something Catcher
saw in Live as well.
Speaker 8 (14:48):
I think this revolving draw.
Speaker 3 (14:51):
Mentality for want of a better word, that occurs in
an the Australian treatment landscape is incredibly incredibly damaging. If
we are seeing that clients are coming back again and
again and again, Okay.
Speaker 8 (15:05):
Let's look at that. What needs to change?
Speaker 3 (15:09):
Not oh well, hopefully one day it will click. It's like, okay,
let's look at the program. Let's look at how we're
treating these individuals. What can be done differently to hopefully
create a different outcome. And I think that's something that
it doesn't seem to be happening, and I think it
really really needs to. I think, you know, we need
(15:30):
to be looking at people in a really holistic manner.
We need to look at their entire situations. We can't
have say someone coming into a treatment program because they
have anorex or they have believe they're or binge eating
disorder or orthorexia or afford saying right, they are in
this box here and they will do this type of
treatment and if that doesn't work, well, we'll try it again.
(15:53):
Because at the end of the day, every individual is different,
and eating disorders tailor themselves to each INDIVI and that's
we must tailor treatment to each individual as well. And
I think that is something that is not done nearly enough.
Speaker 1 (16:09):
Live's time at Munash Children's Hospital was very different to
katyas though they were both battling the same disorder.
Speaker 10 (16:17):
Live wasn't recovering.
Speaker 2 (16:18):
She always walked with her head down, she didn't speak
to anybody. She was always in a private room because
she just didn't want to interact with anybody and she
didn't sort of want to see anybody. And it was
just really heartbreaking to see how much that this eating
just sort of had taken away from her.
Speaker 1 (16:40):
Live's condition escalated to high risk, with security guards posted
nearby to make sure she wouldn't attempt to escape or
harm herself, and since she wouldn't eat, she would have
to be strapped down on her hospital bed and fed
through a tube to receive the nourishment she needed to survive.
Speaker 7 (16:57):
It's her because apparent to watch that, the poor kid
that needs to go through it so screaming and all
that kind of stuff. Every other patient on that would
and probably the one next Doordy can hear what's going on,
and there's distress. Now because we've been in there so
many times, they know what to live. They know what
she's going for. Guys often talk about the eating disorders
(17:19):
like having claws, and they were just getting deeper and
deeper into her. And so you know, her sense of
self worth. I mean, if you see photos of a
beautiful young girl, but she used to say how ugly
she was, how fat she was around here, and she
used to walk around like this and saying how fat
this is, and you know, it was just really really
(17:41):
horrible for her sense of self worth. And then towards
the end, I think she was just searching for ways
to end her life.
Speaker 1 (17:51):
The day that would become lives last began like any other.
It was a Wednesday on the twenty eighth of April
in twenty twenty three. Live was at her mom's house
waiting for an upcoming medical appointment when Rob noticed something
wasn't right during a FaceTime call. Concerned but not alarmed,
Rob decided to take her to the park, but soon
(18:12):
after they arrived, Live started vomiting. I'm sure if she
had taken something. He immediately called triple zero. When the
ambulance arrived, Rob fell into a familiar routine, one he
had been through many times before. He knew exactly what
details to share and how to help the first responders,
But this time something changed, something happened that would stay
(18:35):
with him forever.
Speaker 7 (18:37):
As she said to me that Live home pire with you,
and I had to go and get something out of
my car, which was just at the next to the ambulance.
And she'd never done this before. So often I would
follow in the car behind the ambulance, and she just
(18:58):
kept yelling, with my dad, with my dad, with my dad.
I'm made her dad, So I'm so silly, she said,
I'm so scared that I'm so scared. So obviously she's
known what she's done.
Speaker 1 (19:10):
At the hospital, Rob walked into Live's room to find
it crowded with fifteen people. Once it was confirmed that
she had ingested pills, they moved her to the ICU,
where her blood work began to show slow signs of improvements.
Rob left the hospital hopeful that Live would be okay.
He returned home, but just hours later the phone rang.
(19:30):
It was the doctor's urging him to come back. Once
back at the hospital, he was told Live's liver had
been filled with blood and she needed a transplant and
she would be transferred to the children's hospital.
Speaker 7 (19:42):
It took them about an hour to put all the
monitors and everything on to Live in, all wives and everything.
It's like one of those I imagine you stretched to
say in the end, it's so much equipment all around it.
And they said, look, there's probably no point in me
coming for a few hours to hospital because it's going
to take us quite a while to do everything they
(20:04):
need at the other end. But you know, the rest
is sure. We're looking after et cetera. That might have
happened in the afternoon now And so her mum then
went later to be with her, and a few hours
later I get a phone call from Royal Children's and said,
are you what time he coming in? And I said,
(20:28):
I'm playing to come in in I don't know. It's
nine minute drive from here to the roch So I said, look,
I'm planning to leave in about an hour or so.
They said you need to come now. I said, were
talking end of life? When you said yeah.
Speaker 1 (20:46):
When Rob returned to the hospital, he and Liv's mom,
we're told Live had been declared briented and they had
to decide when to turn off to medical equipment keeping
her alive.
Speaker 7 (20:56):
So we talked about it. Where I how do we
get to how do we get to this moment right here?
And we both agree with that. Look, this is the
fourtnth's times have tried to end her life, and as
much as are weird tried, we meant to really go.
(21:26):
I have no words to explain what it feels like
as apparent to lose a child. I think anyone that
has lost a child understands that there are so many
weird things that you think this for the last two years,
this has been a twenty four to seventh thing, making
sure everything's dead.
Speaker 5 (21:46):
Luck.
Speaker 7 (21:47):
But she's in the room, that she in the house,
that she can't escape from the house that you know,
knives are locked up, all these other things are secured
and it's a twenty four to seven thing. You're not
sleeping proper, your mind for sitting, coaching through food and
all that. And then just like that, the other side
(22:07):
of it is you don't have to do that every again,
and you've gone from so much attention to none of
that and she's gone, and like even now, like it's
that was the twenty eighth of April twenty twenty three.
(22:28):
I feel like there's something I didn't know what I
was I was going to do, but thrust into the
media spotlight and just thinking, you know what, I need
to make this better for other kids and new lives
legacy to in any way stay connected with her. I
think that's important. I'm just not going to let the
(22:48):
world not know who you were. And I feel like
that's my juniorsic.
Speaker 1 (22:55):
Dad Robertson has become an advocate for better treatment disorders
staying connected to Live. Through his work, he helped create
two full time dog therapy programs for hospitals and secured
government funding for in home support for patients and families.
When Katya learned about Live's passing, she had been out
of the hospital for four months.
Speaker 2 (23:16):
That could have been me, you know that could have
been so many people is It's a very very serious illness,
and I don't think there was a part of me
that really understood that and really understood the things that
the doctors and everybody was telling me was true until
I heard that.
Speaker 1 (23:35):
Katya has managed to stay out of the hospital despite
some close calls. She has remained committed to her outpatient program,
meeting with a psychiatrist or GP once a week.
Speaker 8 (23:46):
You can fully recover.
Speaker 3 (23:47):
If there's anyone listening out there today who's doubting and thinking,
but I've had this for twenty years.
Speaker 8 (23:52):
I'm a lost cause you are not.
Speaker 3 (23:55):
I have worked with people that have battled this illness
for forty years and they are now well. No matter
how long or how hard you've struggled with this, you
can get well. So please don't feel defeated.
Speaker 8 (24:07):
Please know that you.
Speaker 3 (24:09):
Can have a life on the other side, completely free
from your eating disorder, and you deserve to have that life.
Speaker 1 (24:17):
In September twenty twenty three, sixteen year old Katya was
invited to Canberra to speak at the Body, Image and
Social Media Roundtable at Parliament House. The event was co
hosted by Federal mp Sy Daniel and the Butterfly Foundation
in national charity supporting those dealing with eating disorders and
body image issues. The roundtable also included researchers and meta representatives.
Speaker 4 (24:41):
We've got more than one point one million people currently
within eating disorder and hundreds of thousands of people being
diagnosed every year. A lot of this increase is being
driven by social media.
Speaker 11 (24:51):
The algorithm piece, whereby if I have an eating disorder,
or indeed, if I'm anyone, I should be able to
clear my algorithm history, clear my cage if you like,
because the way the algorithm works is that if you
have an unhealthy obsession with eating disorder content, it's going
to give you more of that content.
Speaker 2 (25:11):
It's a step in the right direction. You know. It
obviously won't change everything, but sort of just having some
people listening to your concerns. I don't think Instagram and
Facebook are the biggest offenders in this issue. I think
(25:32):
companies like Twitter x and TikTok are significantly worse. But
TikTok did not come to our roundable, so they were
invited in, but they did not come so interesting.
Speaker 1 (25:48):
The roundtable made twenty one recommendations of them. Catch up things.
Restricting people under the age of sixteen from social media
is the most important. Butterfly Foundation CEO Jim Hungerford is
among those calling for better regulations around social.
Speaker 4 (26:06):
Media because it escalates on a very much an individual basis.
All of that diet culture and those sorts of things
act and it is only one of the factors that
caused the problem. And so we are calling for really
dramatically increased regulation of the social media platforms so that
their platforms can be helpful and they are helpful for
(26:26):
a bunch of people, but they're also harmful for more.
So we need much better regulation there. So we want
to ensure that you put in all of those prevention
factors and try and stop this crisis from getting worse
and start turning it around so that we have more
people getting well and we have people getting ill.
Speaker 6 (26:43):
Kay wins Lett, we started an initiative here, a social
initiative called thirty six Months, and you have been so
fantastic in pointing out to the world the dangers of
social media. So thirty six months is the idea of
changing the law here in Australia. Allow thirteen to sixteen
spoken so beautifully on this topic. A message for the
Prime Minister about how important this is.
Speaker 12 (27:06):
I slightly shy away from giving messages to important political figures,
but what I would certainly say is that the fact
that there is a conversation about it that is gaining
momentum in this country is incredibly important because what that's doing,
it's making families feel seen and heard. And if parents
(27:29):
feel that they can bump into each other at the
school gates and have an exchange about what they're going
through and feel known, that I think matters more than
anything else for families, that's really important.
Speaker 5 (27:45):
I'd say that out mission has always been healthy team
development focused on the critical these six months between thirty
and sixteen, but we wanted to have a really clear
objective of some in technima, and so that initial objective
was raising the age of social media citizenship from thirteen
(28:07):
to sixteen.
Speaker 1 (28:08):
Greg Atwells is a director of Thirty six Months, a
campaign for social media regulation. Their petition to raise the
age for social media access from thirteen to sixteen received
one hundred and twenty seven thousand signatures in just a
few months, and in the last week on November, a
bill banning children under sixteen from social media.
Speaker 10 (28:28):
Passed the lower House of the Federal Parliament, and.
Speaker 5 (28:31):
We've heard lots of announcements that were exciting and I
guess in favor of what we were asking for. But
until we look at the details and until we see
what the legislation is, until we see what actually ends
up passing through Parliament, that I sort of hold my
breath a little bit. But given what we've reviewed of
(28:54):
what was introduced to parliament today, I.
Speaker 7 (28:57):
Think they've got it right.
Speaker 6 (29:01):
We are on the way to pick up doctor Billy
Garvey flying in from Melbourne. He's ready for a big down.
Speaker 7 (29:06):
Oh shoot, Greg, I'm doing it in tro.
Speaker 1 (29:10):
Doing their campaign, Thirty six Months also aimed to bring
younger audiences into the conversation about social media.
Speaker 5 (29:18):
I'll never forget the moment. We're in a boys' school
actually and sort of year seven eight nine students, so
sort of within that age we do. And we've a
co founder of thirty six Months. As the room put
your hand up if you would rather not have to
(29:42):
deal with kind of social media in your lives right now,
and pretty.
Speaker 7 (29:47):
Much every hand in our auditorium went up.
Speaker 5 (29:51):
You know, we were never trying to stop young people
from communicating on the Internet or access in entertainment or
educational e. The components of social media that we felt
like qualify the service for more regulation with three things.
One gamify online interaction that makes using the service highly addictive, two.
Speaker 7 (30:15):
An algorithm that.
Speaker 5 (30:18):
Targets vulnerabilities and feeds unhealthy obsessions, and three the ability
to receive and share commentary with a social network, kind
of allowing things like cyberbulling to grow in the shadows
of the service. And so apps like Snapchat, TikTok, Instagram
(30:39):
kind of fulfill that criteria and therefore I think should
be regulated more than they are.
Speaker 7 (30:46):
And it worked. They're changing the laws within two weeks,
and yes there will be implementation issues and all that
kind of stuff, but it's like, do you know what,
this is the right thing to do. We need to
do something to protect our kids, and you know, I'm
just praying to be part of that as well.
Speaker 1 (31:00):
Labor MP and former nurse Emily Savall battled and eating
disorder in her teens and says that a new federal
loss are a good start to protecting young people, but
there's still much more to do.
Speaker 9 (31:12):
Look, firstly, can I say that what CARTI has done
in advocating and sharing her story is really amazing and
something that I think is really incredible, and that's a
credit to her that she's used sort of her experience
to turn something bad into something good. And I think
that's what, you know, we all try and do with
(31:34):
things that we go through.
Speaker 7 (31:35):
In our lives.
Speaker 1 (31:36):
Even with a federal government raising the social media age
limit to sixteen, there's still a long way to go
to help those with eating disorders. In twenty twenty three,
a ten year National Eating Disorders Strategy was developed, highlighting
the need for better care across Australia, but the strategy
hasn't received government funding yet, despite eating disorder is costing
(31:57):
the economy sixty seven billion annually.
Speaker 4 (32:00):
We've got the roadmap of what to do, we just
need to get the funding to actually deliver on that.
And I think for us, the most critical part there
is prevention. We're calling for five percent of the healthcare
funding that goes into eating disorders to be put into prevention,
and we know that for every dollar it's spent in prevention,
it provides so much more long term benefit than therapy.
Speaker 1 (32:22):
How eating disorders are funded in Australia differs from state states.
In twenty twenty three, the federal government's announced it would
provide seventy million in grants for innovative programs to research
and treat mental health and eating disorders, improve services, educate
health professionals, and support patients and their families and cares.
Speaker 10 (32:44):
Emily Suval also thinks prevention is key.
Speaker 9 (32:46):
The right neuge gaps in the research around eating disorders,
and so without that research, knowing how to effectively.
Speaker 8 (32:56):
Prevent is going to be challenging over time.
Speaker 9 (33:00):
It's an area of particularly mental illness that has historically
received low amounts of research investment, and so that's something
that I know our government is aware of and advocating
for more investment. Certainly in terms of the research, prevention
(33:21):
is ky. Absolutely, we are committed to doing whatever we
can to prevent people getting an eating disorder, but knowing
what those steps are and where that money is best spent,
that still you know we need to do more work.
Speaker 8 (33:36):
In that space.
Speaker 1 (33:36):
Doing her own battle with an eating disorder, Emily was
moved to the adult health system at just sixteen years
old and placed in the general psychiatric unit against her will.
Speaker 10 (33:47):
The system deemed her old.
Speaker 1 (33:48):
Enough for medical decisions but too unwell to make them,
leading her to being placed under the Mental Health Act,
with a court appointed guardian to decide for her. Today,
she's been part of New South Wales governments opening a
new facility in Newcastle she helps.
Speaker 10 (34:04):
It will play a key role.
Speaker 1 (34:05):
In treatments in what is currently a gap in treatment
for people in Australia. While there are a range of
rebates for health services under the Medicare Benefit scheme, it
only covers some of the treatments.
Speaker 4 (34:18):
And so, for instance, there are Medicare supports and so
for each visit you can go on a specific plan
and then you get some payments for each visit that
you might need. However, for someone with an eating disorder,
that those plans can be designed with forty sessions involved
over a period of time. And then if you imagine, well,
the practitioner might be reimbursed let's say ninety dollars, but
(34:41):
for them to be able to exist, they might have
to charge one hundred and eighty dollars. And if you've
got forty visits and each one a gap of one
hundred dollars, you've got to take time off work, You've
got to travel even though the government does support, it
is really hard for people to actually get the help
that they need. And I spoke about the intense therapy
(35:02):
that needs to be supplied. We have our residential facility
up in Queensland Winding Narrator, and so Wandy provides support
for people who really need intensive therapy over a long
period of time to turn their life around. That is
incredibly expensive to do for those people that can literally
be life saving.
Speaker 10 (35:21):
So what's next.
Speaker 1 (35:22):
Eating disorders are often misunderstood and surrounded by stigma and
misconceptions that makes it harder for people to seek help.
Many believe these illnesses are a choice, a lack of
willpower or indifference. Understanding the reality of eating disorders and
knowing where to turn for support are crucial steps in
addressing this widespread issue.
Speaker 4 (35:43):
So overcoming that stigma is really a major initial issue.
And then the other problem is knowing where to go.
And because of the lack of awareness around eating disorders,
people don't know should I go to my local GP,
who should I speak to? How should I reach out?
Speaker 1 (36:01):
Eating disorder Recovery Coach nearly also has subvision of better treatments.
Speaker 3 (36:06):
What I would love to see is that recovery coaching
gets recognized under medicare. There are a lot of people
that really benefit from recovery coaching that kind of afford it,
So I think that would be really really important, and
ultimately from a dream, we're going with a dream dream here.
It would be great to have hubs of recovery coaches
in each stake because they know that some states don't
(36:27):
have the ability to have face to face recovery coaching.
Speaker 8 (36:32):
I think the other thing too, that is really really
important is education.
Speaker 3 (36:37):
Medical professionals across the board need to be educated more
when it comes to eating disorders, so that they understand
what to look out for. They understand that it's not
just about wait. They understand that it's not a choice,
so that that person that first touch point that that
person has, when they get the courage to reach out,
they have a positive experience, they don't feel invalidated.
Speaker 8 (36:59):
There is still lots to be done.
Speaker 3 (37:00):
There is a lot that has been done which is amazing,
and I think there's a lot of community support out
there which is wonderful, but we've still got a long
way to go.
Speaker 1 (37:10):
It's almost been the two years since Live passed away
and Rob hasn't missed the beat in his fight for
an improved care system for eating disorders in this country.
This Christmas will be Rob's second without her. On her
birthday and the day she passed, the family honors her
with a special dinner, a toast, and memories of the
good times they shared.
Speaker 7 (37:30):
I find that live has a way of just taking
me to whatever that next thing is. It's like, Okay,
you've done that. She gets on the phone and says, hey,
you know, to go talk to my dad about this.
So then I get a phone call about something else
and say, okay, yeah, this sounds like something's worthwhile. It's
really a complex, complex thing, But I'm grateful for the
(37:54):
people that I get to talk to, and you know,
we keep advocating for change, and hopefully one day I
can be talking to you about how am she's now
the world's number one eating the sort of training facility.
Speaker 1 (38:05):
Rob also carries some of her ashes inside a bracelet.
He cares with him every day.
Speaker 7 (38:10):
Rick kiss every day, and it's important to remain connected.
Just the thought of having her been in a hole
under ground somewhere by herself, and I'll never get those
echoing words out of my head down. I'm scared, and
I'm so scared. I'm scared, so scared. Don't leave me.
Don't leave me. I'll never leave you live, that's okay.
(38:31):
And you know all of this, despite all the pain,
I never ever gave up on her. She said to me,
do you ever wish she didn't have me? I said never,
not like, let me even think really, I said never,
And I said live. I know that you're going to
recover from this. And even when the doctor said that
we haven't in which of her life support, yeah, I
(38:52):
didn't believe it. And I'm like, no, She's going to
be okay.
Speaker 1 (38:55):
Katya is eighteen now, and it's been five years since
she first felt ill. Since then, she's become a passionate
advocate for change, openly sharing her own experience along the way.
She's graduated high school and even help developed an inhume
hospitalization program in Victoria, the same program that once supported her.
As for how her recovery journey has looked like, she's
(39:18):
more cautious about how she uses social media. She found
support in friends and her immediate family, who had learned
over the years about what could be triggering to talk about.
Speaker 2 (39:29):
You know, my Mom is still very cautious. She's so worried.
Bless her, she just does she's so worried about me
sort of going back because of how traumatic it was
for her as well, that if I even mentioning disorder,
she's like, are you feeling okay? Like it's my promise,
are feeling mine? So she's probably more cautious than I
(39:52):
am about what's being discussed. I think it's a very
misunderstood disorder. And I think people they do mean the
best when they say those things, but often comments are like, wow,
you're looking so healthy or wow, you know you're looking
much better. Is kind of like a bit uh, because
(40:18):
because the eating disorder, just because you're in recovery, it
doesn't mean that you're completely better. I kind of think
about it like somebody who is an alcoholic. You can
recover and you can maybe not drink for thirty years,
but you can never pick up another drink again, because
(40:40):
otherwise that is going to trigger your illness and send
you back, potentially into a dark place.
Speaker 8 (40:49):
And I think it's the same.
Speaker 7 (40:50):
Thing with eating disorders. Is I have been recovered.
Speaker 2 (40:53):
For almost two years now, I think, but I don't
think I would ever be able to diet in the
future or things like that, because it just it is
a lifelong sort of illness that you're dealing with. And
(41:14):
even though I'm in a great space mentally, I just
there are always little things that I have to be
cautious of, and I have to be cautious about the
things that I discussed with people because I don't want
it to sort of trigger something that is still very
deep in my brain.
Speaker 1 (41:35):
You have listened to seven Year Spectrum with me Malin Haglund.
This episode was produced by myself and Lucy Hatcher. If
you are someone you know has an eating disorder or
would like some information, referrals, or counseling for eating disorders,
disordered eating, or body image concerns, contact the Butterfly Foundation
on one eight hundred three three three six seven three
(41:58):
or Butterfly dot org. If you need help in a crisis,
call Lifeline on thirteen eleven fourteen. For further information about depression,
contact Beyond Blue on one three hundred two two four
six three six, or talk to a GP local health
professional or someone you trust
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