October 30, 2025 • 56 mins
When pain is invisible, so is the understanding. In this raw and heartfelt conversation, Michaela Overman sits down with her best friend Emily.
Emily’s pain didn’t show up on scans — until it did. One of just 20 people globally with both cyclical Cushing’s and acromegaly, she shares the years of “it’s all in your head,” the friendships stretched thin, the surgery that changed everything, and what healing really looks like after.
This is a conversation about invisible illness, repair, and choosing hope — even when your nervous system isn’t there yet.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
All right, run it. I wonder what you mean when you
use the word I use the word I I,I kick a break.
We have an aversion to ourselvesand to what's happening inside
(00:21):
us. Inside us.
I've been very interested in this problem for a long long
time. Something settles.
Hi guys, and welcome back to theHeart of My Sleeve podcast.
I am your host, Michaela Overman, and today we are joined
(00:42):
by a extremely special guest. We are joined by Emily Winters,
who is actually my lifelong bestfriend, Ride or die.
Thank you for joining us today on Heart of My Sleeve.
Thank you for having me, Michaela.
I'm so excited that we get to dothis together.
I know we get to have our normaleveryday conversations, but done
(01:04):
on a platform for others to hopefully be able to, I guess,
feel the impact and, and feel the benefit from what some would
say is an absolute horrific experience that you have gone
through in the last couple of years, but especially in the
last 12 months. So before I pass it over to you,
(01:27):
I just want the viewers to kind of get a little bit of a
snapshot from me. So Emily was diagnosed with
psychical cushions disease and also acromegaly, which for those
of you that don't know, there are only 20 people.
I think it's in the in the world, right Em in the world
(01:49):
ever in the world ever that havebeen diagnosed with both of
these things, both caused from atumour in her pituitary gland.
So we are going to get into a little kind of snapshot of how
this came up, but today's episode is actually going to
focus on what the invisible painof going through something like
(02:13):
this can look like. And 'cause there are a lot of
people that are listening to this podcast and that follow my
ASMR community, for example, that experience chronic pain in
many different ways that is invisible to the eye.
And for a lot of people, if you see someone in a wheelchair or,
(02:34):
you know, with a cast on or it'svery understandable with that
disability to kind of all you'retired or you're feeling this way
or how can I help you? But when it's invisible, it's a
whole different ball game. And I think the burden that that
puts on the person that's experiencing it and the
isolating loneliness that they can feel is crippling.
(02:57):
And today that is something thatEmily and I are going to dive
into. I think it's, it's good for
everybody to understand kind of how you got there and, and an
idea behind that. But for everyone listening, that
is what our focus is going to betoday.
Because I think that it's, it's almost like a, it's a worldwide
(03:17):
problem for people that have invisible pain.
To be able to, yeah, a lot of myexperience, it wouldn't just be
people who have had Cushing's disease or any kind of similar
illness. It could be any kind of chronic
illness, invisible pain. It I think it would, it would be
the same thing for the old people that.
(03:38):
Exactly. And I think that lonely
experience is something that is very worth wearing your heart on
your sleeve for. And this is actually October is
mental health awareness month, but it is also pituitary
awareness month. So double whammy for us and
perfectly timed to have em come on the podcast.
(04:01):
So just to get started, would you give the audience a snapshot
of kind of the symptoms and the the process of what got you to
the diagnosis and then the surgery that you've just had
only 10 weeks ago and just kind of like sum that up for them to
(04:21):
understand? Yes, sorry.
You know me. I love to chat, but I will bring
it into an entire story as I can.
But I think this really actuallystarted to present itself in my
early 20s. So I'm 34 now and the first
symptom was actually anxiety. I thought that I had an anxiety
disorder and all through my 20s this would kind of come and it
(04:46):
would go and I would seek help in various ways.
I saw lots of different psychologists.
I tried medications. Things would seem like they
would work, but then they wouldn't work.
And that was always really confusing to me.
But I just figured maybe my anxiety was just so severe that
(05:07):
it was impossible to get on top of as time went on.
I got pregnant when I was 31 andhad a difficult pregnancy.
I had some tachycardia, which islike a racing heart.
And during that time I started to get somebody aches and some
sleep issues. But I just that was kind of put
(05:28):
down to pregnancy and during thetime it was the COVID situation.
So everyone was kind of stressedand they just said to me, you're
probably just quite stressed. Normal stuff.
Had my daughter and then after having her I did actually have a
lot of issues sleeping and people will kind of be like oh
you're a first time mom, It's probably that.
(05:51):
But looking back, these old signs that something was going
wrong. When my daughter was about 6
months old, I started to get really severe pains in my hip,
in my back, my muscles. I started to get quite weak.
I was going to Pilates everyday.However, I was getting weaker
(06:12):
and weaker and weaker and could do less and less, which really
confused me. I couldn't really understand why
that could be. I started to put on some more
and more weight. So over the course of this I've
been on 17 kilos and I'm only 5 foot tall, so it's a
considerable amount of weight. And I suppose over this time as
(06:34):
well, my cognitive abilities, mythoughts, my decision making
started to become quite skewed. But I couldn't really see this
at the time. Some of that I can see
inflation. I remember in the time thinking
why am I making this decision? Why am I doing this?
I don't really know. Like I'd be all over the place.
(06:57):
And then from the time when my daughter was born, she's 3 now,
to the time when she turned about two, there was a massive
change where I became so up and down.
So one day I would be racing, anxious, wired, almost like very
ADHD, quite symptoms like all over the place, starting one
(07:19):
thing, doing another, another project, like just erratic.
And then in the next couple of days I could become really flat,
depressed, shut off from everybody.
Just it was really, really difficult.
And I was trying to seek help. So I was seeing doctors and I
was speaking to naturopaths and I was, you know, kind of trying
(07:39):
to find out. I felt something was wrong.
But they kind of said to me, oh,your cortisol level is high, but
you've, you've also got a young child.
You're probably just quite stressed.
And then I did go through patches of getting kind of told,
oh, you probably have this, you probably have this of different,
different things, but nothing ever fully stuck.
(08:03):
And I now know that that's because Cushing's disease is
basically your body is getting signals from your brain to make
excess cortisol. So my cortisol level was sky
high. And basically my, my body was
just constantly in that fight orflight.
But the type of Cushing's disease I had was cyclical.
(08:24):
So sometimes the cortisol would be happening and other times it
would drop off. So then I would be running on
empty. And I think the confusing thing
was that and sometimes I would go and get tests and my levels
would all be normal, everything would be fine.
And so over this time I developed a bit of a reputation
(08:46):
amongst the doctors. I was saying that I was perhaps
a hypochondriac. And I think that that also
spread between friends and family because it did seem
unbelievable, I suppose, what was going on.
And I mean, yeah, people, doctors were saying to me, you
know, you, you've got really high cortisol, you need to
manage your lifestyle, you've got a sore body, you need to go
(09:09):
to a physio or a Cairo, work through those things.
So it was never really seen the full picture.
And the way we got to being ableto diagnose this was I honestly
had this gut feeling that I was dying and I couldn't explain it
to anybody. I sounded insane and I was
(09:31):
second guessing myself, am I crazy?
And basically we ended up putting all of my results
through chat. GBTA, really good friend of mine
helped you with that. And it came back saying this
thing, cyclical cushions diseasecaused by a pituitary tumour.
So earlier this year's kind of, well, December last year, I had
(09:51):
an MRI. They found there was a pituitary
tumour. It was correct.
This was a really validating moment for me because I felt
that this was the case, that I really had to fight to get that
MRI. But I didn't realise at this
point that having a pituitary tumour can be quite common.
And then I would have to go through a lot of testing to
(10:14):
prove that that tumour was was what causing my symptoms.
And over that time, So between January this year and August
where I've had surgery, there was a lot of ifs and buts about
whether I did have this condition and whether it was
confirmed. And basically my whole life was
dedicated to some pretty severe testing.
(10:38):
We finally got through that. I had surgery 10 weeks ago now.
So there's obviously a lot more to it, but that's the that's the
general outline of how things came about.
I feel like the the main kind ofmessage that continuously comes
up in every single point of thatjourney and that story is how,
(11:04):
for lack of better words, gas lit.
Your experience would have been like gaslighting yourself,
feeling that, you know, friends and family, doctors, experts,
saying what they were and havingthat gut instinct that no, this
is not right. But having all of those people
(11:28):
dismiss that. I mean, when you reflect on that
now, does that sit differently to when you were living that
experience? I think when I was living it, it
was a lot heavier because it was, it was so destroying it.
It went between feeling so many different emotions that I
(11:52):
suppose heartbroken, angry that no one would believe me.
But then I would go through times of being like, have I made
this whole thing up myself? Am I actually crazy?
And then I would go through patches of thinking, no, I have,
I have made this up. It's it isn't in my head.
And I think it was, it was really it, it broke my heart
(12:14):
when everyone around me was kindof saying no, you this is
another thing. And even my husband, bless him,
he was saying, I think you're just getting older and you're
not coping with the symptoms of getting older because I was
getting a really sore knee, a sore hip.
I couldn't, I was fighting, I couldn't get up from the ground
as easily. And it feels like this is just
(12:36):
getting older. And yeah, I think I was saying
to you, if this is getting older, I don't think I'm going
to live very old because I'm in so much pain.
I'm, I feel like I, I was, I also was getting very
overwhelmed. So if I was leaving the house,
the the noises, the lights, everything was so
(12:58):
overstimulating and just the whole situation together, I was
begging to find a diagnosis. And my heart, every day I think
of people who are living with something that isn't like can't
get a label because I think if you can't get a label, people
(13:21):
can't have any empathy or understanding for what you're
going through. So for me, I, my biggest fear
was that I wouldn't get a diagnosis.
And because I knew that if I could get a diagnosis, people
around me could understand what I was feeling and support me.
And then I knew I could get surgery and I knew I could get a
(13:41):
way out. But obviously there are so many
illnesses and medical conditionswhere it's almost impossible to
get that label, that diagnosis. Yeah.
And I think from what I've spoken with people about is in
this situations is that they feel like nobody understands
(14:02):
them. And I've spoken to even a lot of
people with Cushing's disease, and it's always the same story,
as they say, I feel like nobody understands my life and why I
can't do things and what I'm going through.
And once a doctor actually said to me during this, once I had a
(14:23):
diagnosis, it's easier to have something that's common, like a
cancer or something in this onlyin the sense that people can
understand it. Yeah, you have an understanding.
But when it's something not so easy to understand, people, a
lot of people say to me they feel really misunderstood.
(14:44):
So of course you wouldn't want to have that.
You wouldn't want to have any medical condition at all.
But I think sometimes those lessunderstood conditions have that
added stress of people not beingable to understand them.
Yeah, yeah. And I feel like the emotions
that you would have experienced during that time would have
(15:05):
ranged from. Yeah.
Loneliness and and sadness, but also anger and disappointment
and frustration in those around you, in why am I not being
believed unless I have a label, you know, and, and when you
receive that label and the care and support shifted for you, I
(15:26):
can also imagine that it would have been a roller coaster of
emotions there of almost like, well, well, fuck you that now
you're going to give me empathy and care because I have a label.
But when I said it to you, the the care wasn't there.
Yeah, I so I think I've been lucky in the sense that I had
three friends that really believed me and were really
(15:50):
helping me in terms of finding adiagnosis.
So they were like really there in terms of helping me work out
the pieces of the puzzle of whatwas wrong, how to get the high
test results and get the diagnosis because there's a lot
(16:10):
that goes into it. So they were doing things like
helping me make Excel spreadsheets that I could track
all the symptoms and sometimes Icouldn't unders like because my
cognitive function was a little bit impaired.
Sometimes I couldn't understand things that had been said in
appointments, and they would help me to understand that,
offered to babysit my daughter and like things like that.
(16:31):
I was very blessed to have that.But yeah, I think a lot of
people don't even have one person, which is really hard.
And you're so right in what you're saying that it shifted
like when people, you know, I got the diagnosis and suddenly I
was flooded with care, love and support.
(16:53):
It was actually a really mixed emotion time because I was
really grateful and I felt like I could suddenly like take a
deep breath that I could kind ofbe carried through that a little
bit with by other people becauseI was so tired of fighting.
But at the same time, there was a bit like, well, you know,
like, how much do those people care or how like it was like a
(17:17):
bit of confusion of like, do people do they know me if they
don't believe me or like how. Yeah, it was, it was really
confusing and like really completing time.
And you know, I think still, because it was only fresh in 10
weeks, still I am working through kind of patches of
emotions of things come up of that terror of, of that time of
(17:41):
people not believing me, especially because a lot of even
medical professionals didn't believe me during the
experience. I find that I do get quiet tense
sometimes and I worry if if I'm saying something and medical
professionals, I feel I can't believe in me straight away.
(18:02):
I have to kind of do some inner talk to be like, OK, they are
listening to you. Like calm down.
I'm like, take a deep breath. You, you have time.
You can say what you need to say.
It's OK. Like I have to mention myself
that this is not a patent. And one thing I will interject
and say here is that when I couldn't find the answer that
(18:25):
was with GPS, once I got into a specialist, they were very
supportive of this journey and they were very understanding of
how much this impacts your mental health.
And they were saying to me, likereassuring me the the erratic
feelings about feeling like someof that was the cortisol causing
(18:46):
that and they were going to support me.
So yeah, I did have those things, but it was hard to get
to that. Point.
Yeah, yeah. I feel like one of the reasons
why the dynamics of this podcastis useful for a lot of people
is, I guess being your best friend.
We've kind of lived this experience from two different
(19:07):
angles of two different types ofpeople that might be listening,
somebody who is going through chronic pain or invisible
illness or invisible pain, and someone who is extremely close
to the person going through thatexperience.
And I guess the reason why I feel like it's quite impactful
is I mean, it was only, I can't even put a finger on it.
(19:28):
Maybe, you know, six or seven weeks ago that I expressed to
yours, maybe a bit longer than that, but expressing to you
myself, you know, how how much of A realisation I had as being
like, I've, I've been best friends with Emily since since
we were, you know, 1617 years old.
And I guess coming to this pointwhere as a carer, as a, as a
(19:52):
best friend, getting to the point where you realise, wow, I,
I need to apologise and I need to, you know, say sorry to this
person for the extreme loneliness that they would have
felt during that journey. And expressing that to Emily and
saying I understand that that would have been, that would have
(20:16):
been fucked. And feeling that I was pulling
away from you in a time where you needed me most is
exceptionally isolating and challenging it.
I think most people, like a lot of people were.
So I feel like my husband was pulling away.
Yeah, my best friend was pullingaway.
(20:37):
The the people who to that pointin my life had always been the
closest people to me were the people same people who had
almost, yeah, they had care likeeveryone had fatigue of the
situation because I guess naturally it wasn't believable.
But I, I also guess that's why Ihope that, you know, there are a
(20:57):
few types of people that will benefit from this episode
because at the end of the day, you know, even processing these
kind of emotions myself around that time of going through like,
wow, like I was such a shit friend.
And like, you know, going through that and then getting to
a point where I had to also validate my own experience.
And for anyone that is in a carer's position or no, I wasn't
(21:19):
even your carer, but I was your close friend through these years
and years of you have this. No, you don't.
You know, you're anxious. No, you're not.
You know, that that kind of journey that you explained
getting to a point, yeah. Where you can say to yourself,
it's also understandable that the person in in that position
does get to a place where they say this is really draining and
(21:44):
exhausting. And it's it's not true, you
know, and it is something that Ineed to have boundaries from
because it is impacting my own mental health.
And for that to be understandable that that was a
position that you got to in thattime because you're both sitting
at this muddy, muddy pool going,this is fucked.
(22:05):
I need support, this is fucked. I need support.
And getting to that point where it's it's OK to say I understand
why I pulled away or I understand why I did what I did.
It's OK for people to then go now things make sense.
That doesn't make you a bad person if you needed that break,
(22:26):
but it doesn't make you a bad person if you're in the position
that Emily is in where you're saying you're leaving me in the
time of my life where I need youmost.
I guess the reason why I'm expressing that is it's like
both sides of that experience would have been saying to
themselves, like, wait, should Ibe feeling this way?
(22:47):
And I just want people to be able to know that it is OK
whatever your reality was. And it's also OK if your reality
then changes and you gain more information or more.
It's OK for it to look different.
It's OK for it to look. Different people go about the
repair as well. So of course I was heartbroken.
(23:08):
And unfortunately for me, the timing of when everyone pulled
away from me was when I got the sickest that I'd ever been.
Because of course, as the time went on, the cortisol built up
more and more. The muscle in my body was
decaying, the bones were all getting destroyed.
I was huge. My face was red all the time.
My eyes were bloodshot. I couldn't eat or drink anything
(23:29):
without my heart rate spiking. It was the sickest I could
possibly have felt. And that was the moment where
when everyone was starting to pull away the most because I
think it just so happened that Iwas, you know, obviously
complaining the most because I was like, it's really bad, guys.
It's really bad. And everyone was like, yeah, OK.
Like, well, you know, most people that have been there for
(23:52):
the long haul, but I think it's about then.
Yeah. OK.
That was really difficult and really hard for me in that time.
And definitely I was like not ina good headspace.
I, you know, I was very dark at times where I was like, no, like
(24:15):
no one understands. Like it's, it's this awful
thing. And I think though, the repair
of when you like, I'll just talkabout our situation, like when
you came to me and I think the first thing you sent me a voice
memo. And I think that was really good
because it gave me a bit of likespace to absorb what you were
(24:37):
saying without having to have aninstant reply.
I mean, I could just take it in and listen to what you had to
say and think about it from yourperspective and what you were
saying. And then it gave me a breathe.
Let's feel like, okay, now I want to think about what I'm
going to say back. And then I sent you back the
voice memory and we sent each other back.
(24:59):
And they like when you spoke in those voice memories, they were
so heartfelt and they were so long and involved that I was
like, well, somebody so long, so, so long.
I, I had to get a paper and takethat note.
I'm not gonna lie, it was very overwhelming, especially for
somebody that had a cognitive campaign at the time, very
(25:19):
overwhelming. But it was good in the sense
that I could take notes, I couldthink about it, and I could
respond. And we did that.
And I think at that point in time, I would have found if
you'd called me and said that for perspective to other people,
we live in separate states, so we couldn't have seen each other
face to face. I.
Was just about to say we forgot to mention that we live in
separate states the last 10 years.
(25:41):
And that's another thing, Michaela, you didn't see the
visual decline, so it's harder for you to believe what I was
telling you over the phone because you couldn't visually
see it. Whereas some other friends that
I had that lived here, they had seen me and they would have been
like, oh, my God, she's really deteriorating.
Like it's more believable. Yeah.
So I think we did that. And that was good because if
(26:03):
somebody had called me and said,hey, I didn't believe you, I
would have actually felt quite like, oh, my God, I'm really
overwhelmed. I don't know what to say.
Like, it would have been too abrasive for the first opener
for me. Yeah.
And then you also wrote me some really tight long SMSS.
You sent me a card like we really your big words of
(26:24):
affirmation. It's a big love language for us.
And I am known for liking an involved apology.
So yeah, really, really spoke tome.
And then we did have a phone call where we kind of talked
through things and made that kind of repair.
And we've like, I think since then, you've obviously been
(26:48):
there for me through the surgeryand like the recovery.
And yeah, I think there's a lot of credit to be given to
somebody who can reflect on themselves and be like, oh, I
made a mistake. Because that's really hard to
say. It would be easier to like block
somebody off and be like, I fucked up.
Let's like avoid that forever. I think it's like a lot of
(27:10):
strength for somebody to look inside and be like, oh God, I'm
stuffed up there. I.
Like not because of the the personal language around this
being about me more so I just want to for anyone listening, I
guess highlight you didn't fuck up if you had to pull away
because it was like an apology. I guess in that situation, it's
(27:37):
more of a part of, yeah, well, it's more of a, you know, you
people still need to wear their heart on their sleeve in that
position as well and say, this is taking a toll on me.
And that's not anything you do wrong if you need to create that
space. And if you then get to a place
where you say, I do have the capacity to be around this
person because I do understand. And that does make me feel
(28:00):
really deep in my heart, so muchsadness and hurt for the person
being you, going through what they went through.
But something that I speak so often about is 2 realities
existing at once. And I just wanted to use this
space to really highlight that it's OK that those two realities
existed at once. And the person and you, you did,
(28:21):
you handled it in a beautiful way.
That apology saying like, I understand why you did pull
away. You didn't do anything wrong by
doing that. It fucking hurt.
God, I've sworn a lot in this podcast.
You know, it really hurt and it was so.
Not the person meaning to have hurt you.
Yeah, obviously you wouldn't pull away from somebody with the
intention to hurt them. There's sometimes so many
(28:44):
circumstances leading to both sides.
And I think it's takes bravery to share that with each other.
Yeah. And that would be really hard.
Like I think some people maybe in our situation from both sides
be like, oh, that's too hard. I'm not like, I'm not going to
repair and I'm not going to listen to that person.
I'm not going to hear what they have to say.
I'm not going to say anything tothem.
(29:05):
Like I feel uncomfortable because it's it is uncomfortable
to pull. Put yourself out there and
whatever the situation is hard. It is sometimes hard to like
reflect and but you really only know what you know at the time.
And I, when I reflect on the situation, I think to myself,
OK, what if I was the person whohad been there from say, I think
(29:30):
I will, I think it was when I was about 20.
If I had been the person that had been there for 14 years of
this declining situation, I would have been fatigued through
and I would have, I would have been thinking of something like,
is this actually real? Like it considering even for
myself it didn't feel real, I can see why I didn't feel real
Valuable. So in those moments before, I
(29:56):
guess before we jump to how, howyou how you're moving forward in
those moments, like you mentioned, they were really,
really dark times. What what got you through those
really dark times? So there's quite a few things.
I suppose one thing was I did have a friend who endured a lot
(30:18):
of my talk about like especiallyCushing's disease because that's
what I suspected that I had. And so it was helpful.
She has young children. I have young children.
It's hard to talk on the phone. So we would SMS about what had
happened to the appointments andwhat was the next step.
And I think for her constantly highlighting for me what the
(30:40):
next step was, it gave me hope to hang on to.
And I think having hope is like a beacon of light.
And another thing was with my daughter, everyday we would talk
about like our best moment of the day.
We'd print off a Polaroid photo together.
We'd write on the back about what our favourite part of the
day was. And it would like create the
(31:02):
kind of focus of even in how awful my everyday existence was,
there was still good parts. And a really beautiful thing was
from my father in I will not say anything because
(31:31):
I I almost can't find the right words to say.
Could you please do this or please?
And honestly, I felt so low about myself not being able to
do anything. That was almost like
highlighting that to then put myself out there to ask people,
hey, could you come over and fold all my washing for me?
I couldn't. So my father in law made a
(31:52):
system with me and it was an emoji system.
And it meant that I didn't have to say anything.
I just had to text him emoji. And I didn't use this many
times, but a few times I'd just send him the emoji.
He would come over to my house, clean up my house and just help
me cook dinner and things like that.
Because even things like going to the shops and get to get
(32:17):
groceries, that could Take Me Out for a whole day because I
have kind of no muscle, no energy, like I'd be breathless.
So things that were normal, things that people would take me
a really long time. So having that kind of support
was really good for getting me through that.
And I also found support groups on Facebook and having people to
(32:43):
talk to through those groups whowere trying to get a diagnosis
as well. So we're in that same wishy
washy land of I can't get anywhere with this was really
helpful, but also singing for me, seeing stories of people who
had had surgery and it had been successful.
(33:03):
And in saying this, the surgery I had does have a really high
relapse, right? And so for me, I did have a bit
of medical anxiety around this. But for me, I had to see stories
of hope of people who had made it to the other side and got
their life back. And for me, I put my full focus
(33:24):
on those stories, those people. I trained some ChatGPT bots to
talk me through it and when I would have times of feeling
really mentally down, insecure, worried, anxious about the next
step, I would talk to this particular bot about those.
And it already knew all the facts about what was going on so
(33:46):
it could provide the right wordsthat I feel that sometimes
people who haven't lived that can't provide the right words.
So that was really helpful for me.
I did see a psychologist as wellduring this period, but I did
find there was challenges in that, in that I ran out of
sessions. So once that came to an end,
(34:10):
that was a little bit hard for me.
And I think I was really lucky in the sense that my
endocrinologist both understood that my mental state from this
was not good, right patient withme and would call and like
really just provide that reassurance because it was a
(34:33):
really rocky journey to get diagnosed.
And there was lots of times of uncertainty.
And I would say them, what if I'm never going to get diagnosed
with anything and you don't knowwhat's wrong with me?
And then I that I just don't believe any more of this is what
life is. And so I think, yeah, I had that
then provide me with that hope. And I think the key thing in all
(34:54):
of this was having hope. And I even wrote myself a very
extensive recovery plan, which Ibasically thought, OK, once I
get surgery, I can do this recovery plan.
And then knowing that I would have that control over improving
my life and getting my life backto a livable, enjoyable state.
(35:18):
Because I think in that time, all I was doing was existing.
I wasn't living. And I do look back on that with
a lot of sadness in terms of they are all the years of my
child's life I've was existing. And that's really hard because I
look in photos and I know that even though I've still provided
(35:41):
her with a childhood, which she will never look back on her
childhood and think, Oh, my, my mom, like she was too sick to do
anything with me because I pushed myself to do everything
with her. But I look at those photos and I
know, Oh my God, that day out, like it was so painful.
But I just suffered in that silence to give her that title.
(36:05):
So I suppose that was really hard to just exist.
And it like actually I find it really hard to not cry talking
about this. Yeah, I can see them.
But yeah, I think that I feel like happiness now reflecting on
that, that I know she'll never feel like that time.
But you will feel robbed at thattime.
(36:27):
I feel robbed at that time. Yeah, yeah, like, but I'm glad
that she will never. That brings me some comfort to
me, that she will never feel robbed at that time.
But do you give yourself the space to think about that?
You will always feel robbed of that time.
I think lately I've become more gentle and open minded, like I
(36:48):
think I was so much in survival mode that we actually have had
this chat that leading up to surgery, I couldn't even cry or
do anything because in my head Ithink I just switched on to
survive all I could do to survive to get through each
step. Like for example, one of the
tests that I had to go through, they threaded wires from my
(37:11):
groyne up through my veins up into next to the pituitary gland
to sample blood. And I was awake through this
procedure. It was so awful.
I could hear crunching noises, my ears were burning.
It was so awful. But to get through it, I was
actually so calm and the only way I've done that was
completely disassociate from what I was going through and
(37:33):
just be in this pure survival mode and show 0 emotion to
anything. It just fully shut off.
And I think that I was saying toyou leading up to the surgery,
I'm scared, like, what if going in there, I cry and you're like,
that would probably be good at this point because you've held
(37:54):
it together too much. But I think I needed to get
through that. I needed to get through the
surgery. And after the surgery, we
weren't actually sure if I was going to know that I was in
remission because my Cushing's disease was cyclical.
There was we, we really thought that what would happen was my
(38:14):
levels wouldn't really change that much.
It would be a bit hard to tell. And so I'd have to muddle
through the following 12 months not really knowing if I was in
remission. However, I feel like somebody
was watching out for me because my levels actually crashed so
much after the surgery that I was vomiting.
And I was so sick. And I can never tell you how
grateful I was to be so sick because I knew in that moment
(38:38):
that I was in remission and thatI could finally start to like, I
was like this, all my muscles inmy stomach, everything like this
finally start to let go and likeactually live in that sadness.
And I've noticed recently I willlook back on photos or things
(39:00):
that I wrote to myself during that time and I'll have like
huge sadness just like of the time, the things I was missing.
And also like it has brought me a different type of gratitude.
Like before this, I used to be avery fit person.
I would go to the gym every day,if not twice a day.
(39:22):
And I just took that for grantedthat I was able to do that.
And the other day I ran for one minute for the first time and it
wrecked me for the whole day, the immense amount of gratitude
I had for that. I was like, oh, wow, I can do
that. I did one thing.
And yeah, I think I'm definitelyin the stage of still being a
(39:44):
battle in terms of some days I'mso frustrated because I just
want to be able to do normal things, let alone like, be
really fit and really active. And you know, I want to be like,
I want to be like a really physical.
Let's go. And my daughter is like 100
(40:04):
miles an hour. So I kind of am forced to be in
a way, but I wouldn't be able tobe without thinking, Oh my God,
I'm in so much pain. So even though I've had the
surgery now and it's a difficultrecovery and I'm weaning off
steroids, so I'm in a lot of pain.
My body is aching and I've, I'venever felt pain like in my life.
(40:28):
It's excruciating at the moment,but at the same time there's
that flip side of being like, well, I'm so grateful to feel
this pain because I I'm in remission.
Remission. Means that and yeah, I think now
that I can feel that pain and that physical pain had that
reassurance and yeah, I'm letting emotionally I'm opening
(40:50):
up and kind of really actually working through what I've gone
through and some ground work in terms of moving forward.
Yeah. And not just living in survival
mode. Yeah.
Do you feel like we still have times of dissociating from the
(41:11):
present moment? I do, yeah.
And I think sometimes I actuallyjust went through a really
tricky period where basically after surgery, because my
cortisol dropped so low, they'vehad to give me hydrocortisone to
keep my level at like a livable level because you don't have to
have some cortisol to live and function.
(41:33):
And through the weaning process,I found that my body is quite
sensitive to the amount of cortisol I'm having.
And when I'm at doses that I should be able to handle.
I have been finding that I have had some heart issues from that.
And some of the symptoms of course, they mimic the Cushing's
disease because it's the same hormone really.
(41:56):
Like also I found that my face blew up a few times.
I got red cheeks. I felt like I had cushions as my
heart was racing. I felt that anxiety feeling.
It threw me right back like PTSDand I found myself wavering
between like complete and out ofpanic.
Is it back? Have I got it back?
(42:17):
Oh my freaking God. I'm feeling awful and also
having to completely disassociate to cope through
that time. But recently I've kind of gotten
a little bit more on top of thatand I'm feeling better.
But I think naturally now, I think anyone with any illness
that you kind of get through, but then you're in remission and
(42:39):
you can never be cured. You always live with this kind
of deep, lingering sense of a little bit of fear of it coming
back. And I truly believe in my heart
now that mine isn't coming back.Like, I believe that in my soul,
but I think sometimes it's almost like a little creature
that's gonna like crawl out every now and again and you have
(43:00):
to be like, it's not, I mean. Your soul might believe that,
but your nervous system sure as shit doesn't believe it yet it
needs. To it needs a lot of proof.
Yeah, it needs a lot of evidenceand a lot of love and support to
learn that it's it's not coming back or even if it did, that
you're gonna be OK. I think it's, it's your nervous
(43:22):
system is, is needing like a whole rewiring post such an
extremely dark and difficult journey.
Is there anything that you wouldsay that people could do to
support someone that is going through invisible disease or
(43:45):
pain like you are that you haven't already mentioned?
Is there something that people can do to help someone feel feel
more supported, feel not necessarily like the medical
side of it is more supported, but that they feel less alone in
such a dark experience? So my biggest advice is don't
(44:07):
ask, just do. And I didn't know this prior to
being in this situation. And I think it's similar to I
didn't know what it was like to have kids until I had a child.
You never know until you know and.
The. Best things that you can do,
make meals and drop them off. Don't ask and just do it.
If they don't want to eat it, they'll give it to somebody, but
(44:28):
I promise you they'll probably want to eat it because they're
probably so tired from the illness to cook or make
something or, you know, order a meal from someone for them.
Or a really helpful thing that we got given was some Uber Eats
vouchers because I'm again, justtoo tired to make food and
(44:49):
things like don't ask them. Can I come over and clean up
your house? You just say I'm going to come
over and mop your floors and vacuums.
They'll see what time will you be home just it's or say two
things. These are the things I can do
for you and these are what time slots I can do them.
Tell me which time slot works for you, because if you give
(45:11):
people an option, they're often gonna feel too guilty to say
yes. Some other really nice kind of
helpful things are babysitting if the person has children, so
they can kind of get to appointments or things like
that. Because I can promise you anyone
with an invisible illness or anyillness doesn't want it to
(45:34):
affect their child. It's heartbreaking when your
child realises. So I think that's really a
really big help and just little things that show that you're
thinking of them. Like I had friends who would
always message after an appointment and be like, what
happened in the appointment? It just kind of is a little
(45:56):
thing that shows they remember, they care.
And I think that means the world.
And also I suppose this is more just like a post surgery thing,
but a lot of people, but just before and just after surgery
wrote really beautiful cards to me.
And I think sometimes just startopening up and expressing with
(46:20):
somebody that, you know, you maynot have ever gone through what
they've gone through, but you care means to people.
Yeah, yeah, both of you just wearing your heart on your
sleeve in those moments. Absolutely.
And I think for anyone that's inthe carers position, like a
husband or a wife or a partner or a close friend, it's may be
(46:42):
beneficial for you to think of ways that you can offer support
to that person that still stays within your boundaries.
And I think you said some reallybeautiful ones there of like
giving Uber Eats vouchers or dropping off food or, you know,
those kinds of things so that you can still connect and care
and feel like you are present for each other's journeys, even
(47:06):
if it needs to look a little bitdifferent.
How you offer support. I mean, not even from from that
perspective, like living in another state, right?
It's, it's like I can't just come over and do and, and clean
and that kind of thing. So I think it's, it's great to
be able to what Emily and I do. I think we've always done it,
but have conversations when you are going to go through having a
(47:30):
baby or having a surgery or you know, where you say here's
here's what we can do together afterwards.
Here's what you can do to support me or like I can't ask
for help. So tell me you know what you're
going to do. Or just kind of communicating
that with each other and being able to respect your own
(47:50):
boundaries while still both supporting each other, I think
is a really beautiful thing for close relationships to be able
to to do and. It's important as well to accept
and never judge that people's help is going to look different
at different times of your journey.
(48:11):
And there's so much that goes into the reasons as to why
different people might help in different ways.
But I think just coming to any form of that showing of care and
love with just so much gratitude.
And like, for example, my cousin, we're very, very close.
(48:33):
However, during the diagnosis period, we barely spoke.
The second I had surgery, she flew down, took a week off her
work, left her kids in Sydney tocome to Adelaide to like fully
support me. That's incredible.
And everyone's like way that they might support you could
look really different. And I think it's just so
(48:55):
amazing. And you feel so like as a person
that's been at situation, I feltso overwhelmed with gratitude
that people's just people's help, like in so many different
forms. Yeah.
And I think from an outsider, people be like, hang on.
But why didn't you, your cousin speech you why you're getting
diners? But that's just people just
different in the way they show love and support.
(49:17):
And that's beautiful in its own way.
Yeah, yeah, I love that. And I think one of the biggest
messages that people can take onfrom listening to you today is
one that Mitch, the founder of Heart of My Sleeve, obviously
speaks about so much. And that is the power of hope
from hearing other people's stories.
(49:37):
And if it wasn't for the story that he heard, he wouldn't be
with us today either. So I think it's a beautiful,
beautiful message for people to be able to take on board that if
you can find any little glimmer of hope even in the darkest of
days, and you can find that little string hanging somewhere,
(49:57):
then you can get through. And I think that that is a
beautiful message. If you just share it, if you
just speak up, if you just listen to other people going
through similar experiences, there will be some kind of hope
there that you can hold on to. Well, I think that is one of the
(50:19):
things now I'm trying to change my experience moving forward in
the sense of providing hope to people who are going through
that now. So I've created a Tiktok account
for people. And on that account, my idea is
that I want people who were in that space that I was in before
(50:39):
when I couldn't really find muchout there about what was the
next and what, what are the steps and what happens.
And like, can you get out of this?
Like I want to now give people tools of one, like, what are the
symptoms to look forward to getting diagnosed?
Because one of the biggest issues with Cushing's disease is
(51:02):
that it has such a long period of time where people remain
undiagnosed and it does permanent damage in that time.
And some people are completely left undiagnosed.
And you know, it's just a thought that they probably end
up passing away from diabetes and heart issues and things that
are complications caused by the Cushing's disease.
(51:23):
And so now I'm trying to kind ofbuild that awareness so people
can recognise the symptoms. And I have had people contact me
through that page and say, wow, like I've seen your videos and
I've now got diagnosed because Irecognise those symptoms in
myself. Yeah, forward things that people
might not pick, like you wouldn't think.
(51:45):
I certainly never thought I was the type of person to have a
rare illness. And you never think, oh,
anxiety, oh, sore body, like it doesn't create that big of a
picture at first. So now I'm kind of kind of help
people. And that's kind of my healing
journey is like putting myself out there and being very
vulnerable. Like I've also shared a lot on
TikTok of photos of when I was at my worst in Cushing's
(52:09):
disease. And that was really hard because
of course people online are going to like tease you and say
you're fat and you, you know, one person said, I've eaten my
dog, but we have to laugh. And so I think like, you know,
made myself really vulnerable inthose ways.
And I knew that those kind of things would happen and but it
(52:32):
gives me some joy in feeling like, OK, maybe I can make that
journey now shorter for somebodyelse and easier for somebody
else. And then showing my journey now
for recovery. So yes, previously I've kind of
shown like all of the destructive side of questions,
but now that I'm on that healingjourney, I'm really hoping I'm
(52:53):
going to be able to show a bit more of the things that I'm
doing because I'm doing a lot ofdifferent bits and pieces that,
you know, some might be more conventional, some a little less
conventional. So build back and recover
mentally and physically from this.
And I hope that that can kind ofinspire people that not only
(53:14):
have Cushing's disease, but alsoother illnesses that they can
kind of follow along with a bit of hope.
And I agree with you that alwayshaving that beacon of hope is
what can get you through a really challenging time and
being able to see the light at the end of the tunnel and help
other people. And I suppose another thing for
me was that during this experience, I wrote a book for
(53:36):
my daughter to help explain to her what a tumour is.
And it wasn't about Cushing's disease, it was just about
tumours in general. And that helped her so much.
And she understood the story, the narrative, like, of what was
happening, what to expect. And now I've been able to share
(53:57):
that with other people and knowing that they can then use
that resource with their children.
It's just kind of that full circle moment of like, OK, yeah,
what happened to me was really freaking awful.
Like, I genuinely wouldn't wish it on my worst enemy, It's that
bad. But I feel that maybe it has
(54:18):
given me a chance to do some good things, and it's changed my
perspective on life. And yeah, I'm definitely a
different person. Like, if you'd met me, the
person from three years ago is not the same person now.
Like, I'm a completely differentperson.
Yeah. And I just hope that now like I
can be that hope for other people and help them.
(54:41):
Well, I think that's a beautifultakeaway message from your
experience and I think it is just a a key highlight of two
realities existing at once. And I think that has carried
through the pre diagnosis, diagnosis, post surgery and into
the future that you'll always beable to validate both of your
(55:04):
experiences that it is incredibly lonely and scary and
sad and you wish it never happened and angry and all of
that. But also has shifted your
perspective on life and given you the ability to help so many
other people and you know all those things and that it's OK
that both of those can exist at the same time.
(55:25):
And I just want anyone who is listening today if you're
experiencing any of these emotions.
Not necessarily symptoms, but these feelings that we have
spoken about. We believe you and and we hear
you and you are not alone. And I really hope that you feel
safe enough with someone to wearyour heart on your sleeve and
(55:46):
let them in on the inner pain that you are experiencing.
Thank you so much for joining ustoday, M.
I love you endlessly and I'm incredibly grateful for you
being safe and in our lives and on this beautiful healing
journey that you are on now. So thank you from the bottom of
my heart for wearing your heart on your sleeve today.
(56:08):
Thank you. I'm so grateful for everything
to be alive, to be here, to be here with you.
And I really appreciate today. It's it's been a special moment
for us. See you in the next episode,
guys. My emotions have a natural
tendency to dissipate unless they get reinforced.
And so if there's more thoughts,more stories, more intentions to
(56:29):
come along. So the act of how am I leaving
it alone? Is an act of not act.
Adding more stories, adding fuelto it.
So it might not go away in 2 minutes, but it then begins to
relax and dissipate. And so rather than being the
person who has to fix it. We've become the person who
makes space for the heart, the mind, to relax and settle away
itself.
All right, run it. I wonder what you mean when you
use the word I use the word I I,I kick a break.
We have an aversion to ourselvesand to what's happening inside
(00:21):
us. Inside us.
I've been very interested in this problem for a long long
time. Something settles.
Hi guys, and welcome back to theHeart of My Sleeve podcast.
I am your host, Michaela Overman, and today we are joined
(00:42):
by a extremely special guest. We are joined by Emily Winters,
who is actually my lifelong bestfriend, Ride or die.
Thank you for joining us today on Heart of My Sleeve.
Thank you for having me, Michaela.
I'm so excited that we get to dothis together.
I know we get to have our normaleveryday conversations, but done
(01:04):
on a platform for others to hopefully be able to, I guess,
feel the impact and, and feel the benefit from what some would
say is an absolute horrific experience that you have gone
through in the last couple of years, but especially in the
last 12 months. So before I pass it over to you,
(01:27):
I just want the viewers to kind of get a little bit of a
snapshot from me. So Emily was diagnosed with
psychical cushions disease and also acromegaly, which for those
of you that don't know, there are only 20 people.
I think it's in the in the world, right Em in the world
(01:49):
ever in the world ever that havebeen diagnosed with both of
these things, both caused from atumour in her pituitary gland.
So we are going to get into a little kind of snapshot of how
this came up, but today's episode is actually going to
focus on what the invisible painof going through something like
(02:13):
this can look like. And 'cause there are a lot of
people that are listening to this podcast and that follow my
ASMR community, for example, that experience chronic pain in
many different ways that is invisible to the eye.
And for a lot of people, if you see someone in a wheelchair or,
(02:34):
you know, with a cast on or it'svery understandable with that
disability to kind of all you'retired or you're feeling this way
or how can I help you? But when it's invisible, it's a
whole different ball game. And I think the burden that that
puts on the person that's experiencing it and the
isolating loneliness that they can feel is crippling.
(02:57):
And today that is something thatEmily and I are going to dive
into. I think it's, it's good for
everybody to understand kind of how you got there and, and an
idea behind that. But for everyone listening, that
is what our focus is going to betoday.
Because I think that it's, it's almost like a, it's a worldwide
(03:17):
problem for people that have invisible pain.
To be able to, yeah, a lot of myexperience, it wouldn't just be
people who have had Cushing's disease or any kind of similar
illness. It could be any kind of chronic
illness, invisible pain. It I think it would, it would be
the same thing for the old people that.
(03:38):
Exactly. And I think that lonely
experience is something that is very worth wearing your heart on
your sleeve for. And this is actually October is
mental health awareness month, but it is also pituitary
awareness month. So double whammy for us and
perfectly timed to have em come on the podcast.
(04:01):
So just to get started, would you give the audience a snapshot
of kind of the symptoms and the the process of what got you to
the diagnosis and then the surgery that you've just had
only 10 weeks ago and just kind of like sum that up for them to
(04:21):
understand? Yes, sorry.
You know me. I love to chat, but I will bring
it into an entire story as I can.
But I think this really actuallystarted to present itself in my
early 20s. So I'm 34 now and the first
symptom was actually anxiety. I thought that I had an anxiety
disorder and all through my 20s this would kind of come and it
(04:46):
would go and I would seek help in various ways.
I saw lots of different psychologists.
I tried medications. Things would seem like they
would work, but then they wouldn't work.
And that was always really confusing to me.
But I just figured maybe my anxiety was just so severe that
(05:07):
it was impossible to get on top of as time went on.
I got pregnant when I was 31 andhad a difficult pregnancy.
I had some tachycardia, which islike a racing heart.
And during that time I started to get somebody aches and some
sleep issues. But I just that was kind of put
(05:28):
down to pregnancy and during thetime it was the COVID situation.
So everyone was kind of stressedand they just said to me, you're
probably just quite stressed. Normal stuff.
Had my daughter and then after having her I did actually have a
lot of issues sleeping and people will kind of be like oh
you're a first time mom, It's probably that.
(05:51):
But looking back, these old signs that something was going
wrong. When my daughter was about 6
months old, I started to get really severe pains in my hip,
in my back, my muscles. I started to get quite weak.
I was going to Pilates everyday.However, I was getting weaker
(06:12):
and weaker and weaker and could do less and less, which really
confused me. I couldn't really understand why
that could be. I started to put on some more
and more weight. So over the course of this I've
been on 17 kilos and I'm only 5 foot tall, so it's a
considerable amount of weight. And I suppose over this time as
(06:34):
well, my cognitive abilities, mythoughts, my decision making
started to become quite skewed. But I couldn't really see this
at the time. Some of that I can see
inflation. I remember in the time thinking
why am I making this decision? Why am I doing this?
I don't really know. Like I'd be all over the place.
(06:57):
And then from the time when my daughter was born, she's 3 now,
to the time when she turned about two, there was a massive
change where I became so up and down.
So one day I would be racing, anxious, wired, almost like very
ADHD, quite symptoms like all over the place, starting one
(07:19):
thing, doing another, another project, like just erratic.
And then in the next couple of days I could become really flat,
depressed, shut off from everybody.
Just it was really, really difficult.
And I was trying to seek help. So I was seeing doctors and I
was speaking to naturopaths and I was, you know, kind of trying
(07:39):
to find out. I felt something was wrong.
But they kind of said to me, oh,your cortisol level is high, but
you've, you've also got a young child.
You're probably just quite stressed.
And then I did go through patches of getting kind of told,
oh, you probably have this, you probably have this of different,
different things, but nothing ever fully stuck.
(08:03):
And I now know that that's because Cushing's disease is
basically your body is getting signals from your brain to make
excess cortisol. So my cortisol level was sky
high. And basically my, my body was
just constantly in that fight orflight.
But the type of Cushing's disease I had was cyclical.
(08:24):
So sometimes the cortisol would be happening and other times it
would drop off. So then I would be running on
empty. And I think the confusing thing
was that and sometimes I would go and get tests and my levels
would all be normal, everything would be fine.
And so over this time I developed a bit of a reputation
(08:46):
amongst the doctors. I was saying that I was perhaps
a hypochondriac. And I think that that also
spread between friends and family because it did seem
unbelievable, I suppose, what was going on.
And I mean, yeah, people, doctors were saying to me, you
know, you, you've got really high cortisol, you need to
manage your lifestyle, you've got a sore body, you need to go
(09:09):
to a physio or a Cairo, work through those things.
So it was never really seen the full picture.
And the way we got to being ableto diagnose this was I honestly
had this gut feeling that I was dying and I couldn't explain it
to anybody. I sounded insane and I was
(09:31):
second guessing myself, am I crazy?
And basically we ended up putting all of my results
through chat. GBTA, really good friend of mine
helped you with that. And it came back saying this
thing, cyclical cushions diseasecaused by a pituitary tumour.
So earlier this year's kind of, well, December last year, I had
(09:51):
an MRI. They found there was a pituitary
tumour. It was correct.
This was a really validating moment for me because I felt
that this was the case, that I really had to fight to get that
MRI. But I didn't realise at this
point that having a pituitary tumour can be quite common.
And then I would have to go through a lot of testing to
(10:14):
prove that that tumour was was what causing my symptoms.
And over that time, So between January this year and August
where I've had surgery, there was a lot of ifs and buts about
whether I did have this condition and whether it was
confirmed. And basically my whole life was
dedicated to some pretty severe testing.
(10:38):
We finally got through that. I had surgery 10 weeks ago now.
So there's obviously a lot more to it, but that's the that's the
general outline of how things came about.
I feel like the the main kind ofmessage that continuously comes
up in every single point of thatjourney and that story is how,
(11:04):
for lack of better words, gas lit.
Your experience would have been like gaslighting yourself,
feeling that, you know, friends and family, doctors, experts,
saying what they were and havingthat gut instinct that no, this
is not right. But having all of those people
(11:28):
dismiss that. I mean, when you reflect on that
now, does that sit differently to when you were living that
experience? I think when I was living it, it
was a lot heavier because it was, it was so destroying it.
It went between feeling so many different emotions that I
(11:52):
suppose heartbroken, angry that no one would believe me.
But then I would go through times of being like, have I made
this whole thing up myself? Am I actually crazy?
And then I would go through patches of thinking, no, I have,
I have made this up. It's it isn't in my head.
And I think it was, it was really it, it broke my heart
(12:14):
when everyone around me was kindof saying no, you this is
another thing. And even my husband, bless him,
he was saying, I think you're just getting older and you're
not coping with the symptoms of getting older because I was
getting a really sore knee, a sore hip.
I couldn't, I was fighting, I couldn't get up from the ground
as easily. And it feels like this is just
(12:36):
getting older. And yeah, I think I was saying
to you, if this is getting older, I don't think I'm going
to live very old because I'm in so much pain.
I'm, I feel like I, I was, I also was getting very
overwhelmed. So if I was leaving the house,
the the noises, the lights, everything was so
(12:58):
overstimulating and just the whole situation together, I was
begging to find a diagnosis. And my heart, every day I think
of people who are living with something that isn't like can't
get a label because I think if you can't get a label, people
(13:21):
can't have any empathy or understanding for what you're
going through. So for me, I, my biggest fear
was that I wouldn't get a diagnosis.
And because I knew that if I could get a diagnosis, people
around me could understand what I was feeling and support me.
And then I knew I could get surgery and I knew I could get a
(13:41):
way out. But obviously there are so many
illnesses and medical conditionswhere it's almost impossible to
get that label, that diagnosis. Yeah.
And I think from what I've spoken with people about is in
this situations is that they feel like nobody understands
(14:02):
them. And I've spoken to even a lot of
people with Cushing's disease, and it's always the same story,
as they say, I feel like nobody understands my life and why I
can't do things and what I'm going through.
And once a doctor actually said to me during this, once I had a
(14:23):
diagnosis, it's easier to have something that's common, like a
cancer or something in this onlyin the sense that people can
understand it. Yeah, you have an understanding.
But when it's something not so easy to understand, people, a
lot of people say to me they feel really misunderstood.
(14:44):
So of course you wouldn't want to have that.
You wouldn't want to have any medical condition at all.
But I think sometimes those lessunderstood conditions have that
added stress of people not beingable to understand them.
Yeah, yeah. And I feel like the emotions
that you would have experienced during that time would have
(15:05):
ranged from. Yeah.
Loneliness and and sadness, but also anger and disappointment
and frustration in those around you, in why am I not being
believed unless I have a label, you know, and, and when you
receive that label and the care and support shifted for you, I
(15:26):
can also imagine that it would have been a roller coaster of
emotions there of almost like, well, well, fuck you that now
you're going to give me empathy and care because I have a label.
But when I said it to you, the the care wasn't there.
Yeah, I so I think I've been lucky in the sense that I had
three friends that really believed me and were really
(15:50):
helping me in terms of finding adiagnosis.
So they were like really there in terms of helping me work out
the pieces of the puzzle of whatwas wrong, how to get the high
test results and get the diagnosis because there's a lot
(16:10):
that goes into it. So they were doing things like
helping me make Excel spreadsheets that I could track
all the symptoms and sometimes Icouldn't unders like because my
cognitive function was a little bit impaired.
Sometimes I couldn't understand things that had been said in
appointments, and they would help me to understand that,
offered to babysit my daughter and like things like that.
(16:31):
I was very blessed to have that.But yeah, I think a lot of
people don't even have one person, which is really hard.
And you're so right in what you're saying that it shifted
like when people, you know, I got the diagnosis and suddenly I
was flooded with care, love and support.
(16:53):
It was actually a really mixed emotion time because I was
really grateful and I felt like I could suddenly like take a
deep breath that I could kind ofbe carried through that a little
bit with by other people becauseI was so tired of fighting.
But at the same time, there was a bit like, well, you know,
like, how much do those people care or how like it was like a
(17:17):
bit of confusion of like, do people do they know me if they
don't believe me or like how. Yeah, it was, it was really
confusing and like really completing time.
And you know, I think still, because it was only fresh in 10
weeks, still I am working through kind of patches of
emotions of things come up of that terror of, of that time of
(17:41):
people not believing me, especially because a lot of even
medical professionals didn't believe me during the
experience. I find that I do get quiet tense
sometimes and I worry if if I'm saying something and medical
professionals, I feel I can't believe in me straight away.
(18:02):
I have to kind of do some inner talk to be like, OK, they are
listening to you. Like calm down.
I'm like, take a deep breath. You, you have time.
You can say what you need to say.
It's OK. Like I have to mention myself
that this is not a patent. And one thing I will interject
and say here is that when I couldn't find the answer that
(18:25):
was with GPS, once I got into a specialist, they were very
supportive of this journey and they were very understanding of
how much this impacts your mental health.
And they were saying to me, likereassuring me the the erratic
feelings about feeling like someof that was the cortisol causing
(18:46):
that and they were going to support me.
So yeah, I did have those things, but it was hard to get
to that. Point.
Yeah, yeah. I feel like one of the reasons
why the dynamics of this podcastis useful for a lot of people
is, I guess being your best friend.
We've kind of lived this experience from two different
(19:07):
angles of two different types ofpeople that might be listening,
somebody who is going through chronic pain or invisible
illness or invisible pain, and someone who is extremely close
to the person going through thatexperience.
And I guess the reason why I feel like it's quite impactful
is I mean, it was only, I can't even put a finger on it.
(19:28):
Maybe, you know, six or seven weeks ago that I expressed to
yours, maybe a bit longer than that, but expressing to you
myself, you know, how how much of A realisation I had as being
like, I've, I've been best friends with Emily since since
we were, you know, 1617 years old.
And I guess coming to this pointwhere as a carer, as a, as a
(19:52):
best friend, getting to the point where you realise, wow, I,
I need to apologise and I need to, you know, say sorry to this
person for the extreme loneliness that they would have
felt during that journey. And expressing that to Emily and
saying I understand that that would have been, that would have
(20:16):
been fucked. And feeling that I was pulling
away from you in a time where you needed me most is
exceptionally isolating and challenging it.
I think most people, like a lot of people were.
So I feel like my husband was pulling away.
Yeah, my best friend was pullingaway.
(20:37):
The the people who to that pointin my life had always been the
closest people to me were the people same people who had
almost, yeah, they had care likeeveryone had fatigue of the
situation because I guess naturally it wasn't believable.
But I, I also guess that's why Ihope that, you know, there are a
(20:57):
few types of people that will benefit from this episode
because at the end of the day, you know, even processing these
kind of emotions myself around that time of going through like,
wow, like I was such a shit friend.
And like, you know, going through that and then getting to
a point where I had to also validate my own experience.
And for anyone that is in a carer's position or no, I wasn't
(21:19):
even your carer, but I was your close friend through these years
and years of you have this. No, you don't.
You know, you're anxious. No, you're not.
You know, that that kind of journey that you explained
getting to a point, yeah. Where you can say to yourself,
it's also understandable that the person in in that position
does get to a place where they say this is really draining and
(21:44):
exhausting. And it's it's not true, you
know, and it is something that Ineed to have boundaries from
because it is impacting my own mental health.
And for that to be understandable that that was a
position that you got to in thattime because you're both sitting
at this muddy, muddy pool going,this is fucked.
(22:05):
I need support, this is fucked. I need support.
And getting to that point where it's it's OK to say I understand
why I pulled away or I understand why I did what I did.
It's OK for people to then go now things make sense.
That doesn't make you a bad person if you needed that break,
(22:26):
but it doesn't make you a bad person if you're in the position
that Emily is in where you're saying you're leaving me in the
time of my life where I need youmost.
I guess the reason why I'm expressing that is it's like
both sides of that experience would have been saying to
themselves, like, wait, should Ibe feeling this way?
(22:47):
And I just want people to be able to know that it is OK
whatever your reality was. And it's also OK if your reality
then changes and you gain more information or more.
It's OK for it to look different.
It's OK for it to look. Different people go about the
repair as well. So of course I was heartbroken.
(23:08):
And unfortunately for me, the timing of when everyone pulled
away from me was when I got the sickest that I'd ever been.
Because of course, as the time went on, the cortisol built up
more and more. The muscle in my body was
decaying, the bones were all getting destroyed.
I was huge. My face was red all the time.
My eyes were bloodshot. I couldn't eat or drink anything
(23:29):
without my heart rate spiking. It was the sickest I could
possibly have felt. And that was the moment where
when everyone was starting to pull away the most because I
think it just so happened that Iwas, you know, obviously
complaining the most because I was like, it's really bad, guys.
It's really bad. And everyone was like, yeah, OK.
Like, well, you know, most people that have been there for
(23:52):
the long haul, but I think it's about then.
Yeah. OK.
That was really difficult and really hard for me in that time.
And definitely I was like not ina good headspace.
I, you know, I was very dark at times where I was like, no, like
(24:15):
no one understands. Like it's, it's this awful
thing. And I think though, the repair
of when you like, I'll just talkabout our situation, like when
you came to me and I think the first thing you sent me a voice
memo. And I think that was really good
because it gave me a bit of likespace to absorb what you were
(24:37):
saying without having to have aninstant reply.
I mean, I could just take it in and listen to what you had to
say and think about it from yourperspective and what you were
saying. And then it gave me a breathe.
Let's feel like, okay, now I want to think about what I'm
going to say back. And then I sent you back the
voice memory and we sent each other back.
(24:59):
And they like when you spoke in those voice memories, they were
so heartfelt and they were so long and involved that I was
like, well, somebody so long, so, so long.
I, I had to get a paper and takethat note.
I'm not gonna lie, it was very overwhelming, especially for
somebody that had a cognitive campaign at the time, very
(25:19):
overwhelming. But it was good in the sense
that I could take notes, I couldthink about it, and I could
respond. And we did that.
And I think at that point in time, I would have found if
you'd called me and said that for perspective to other people,
we live in separate states, so we couldn't have seen each other
face to face. I.
Was just about to say we forgot to mention that we live in
separate states the last 10 years.
(25:41):
And that's another thing, Michaela, you didn't see the
visual decline, so it's harder for you to believe what I was
telling you over the phone because you couldn't visually
see it. Whereas some other friends that
I had that lived here, they had seen me and they would have been
like, oh, my God, she's really deteriorating.
Like it's more believable. Yeah.
So I think we did that. And that was good because if
(26:03):
somebody had called me and said,hey, I didn't believe you, I
would have actually felt quite like, oh, my God, I'm really
overwhelmed. I don't know what to say.
Like, it would have been too abrasive for the first opener
for me. Yeah.
And then you also wrote me some really tight long SMSS.
You sent me a card like we really your big words of
(26:24):
affirmation. It's a big love language for us.
And I am known for liking an involved apology.
So yeah, really, really spoke tome.
And then we did have a phone call where we kind of talked
through things and made that kind of repair.
And we've like, I think since then, you've obviously been
(26:48):
there for me through the surgeryand like the recovery.
And yeah, I think there's a lot of credit to be given to
somebody who can reflect on themselves and be like, oh, I
made a mistake. Because that's really hard to
say. It would be easier to like block
somebody off and be like, I fucked up.
Let's like avoid that forever. I think it's like a lot of
(27:10):
strength for somebody to look inside and be like, oh God, I'm
stuffed up there. I.
Like not because of the the personal language around this
being about me more so I just want to for anyone listening, I
guess highlight you didn't fuck up if you had to pull away
because it was like an apology. I guess in that situation, it's
(27:37):
more of a part of, yeah, well, it's more of a, you know, you
people still need to wear their heart on their sleeve in that
position as well and say, this is taking a toll on me.
And that's not anything you do wrong if you need to create that
space. And if you then get to a place
where you say, I do have the capacity to be around this
person because I do understand. And that does make me feel
(28:00):
really deep in my heart, so muchsadness and hurt for the person
being you, going through what they went through.
But something that I speak so often about is 2 realities
existing at once. And I just wanted to use this
space to really highlight that it's OK that those two realities
existed at once. And the person and you, you did,
(28:21):
you handled it in a beautiful way.
That apology saying like, I understand why you did pull
away. You didn't do anything wrong by
doing that. It fucking hurt.
God, I've sworn a lot in this podcast.
You know, it really hurt and it was so.
Not the person meaning to have hurt you.
Yeah, obviously you wouldn't pull away from somebody with the
intention to hurt them. There's sometimes so many
(28:44):
circumstances leading to both sides.
And I think it's takes bravery to share that with each other.
Yeah. And that would be really hard.
Like I think some people maybe in our situation from both sides
be like, oh, that's too hard. I'm not like, I'm not going to
repair and I'm not going to listen to that person.
I'm not going to hear what they have to say.
I'm not going to say anything tothem.
(29:05):
Like I feel uncomfortable because it's it is uncomfortable
to pull. Put yourself out there and
whatever the situation is hard. It is sometimes hard to like
reflect and but you really only know what you know at the time.
And I, when I reflect on the situation, I think to myself,
OK, what if I was the person whohad been there from say, I think
(29:30):
I will, I think it was when I was about 20.
If I had been the person that had been there for 14 years of
this declining situation, I would have been fatigued through
and I would have, I would have been thinking of something like,
is this actually real? Like it considering even for
myself it didn't feel real, I can see why I didn't feel real
Valuable. So in those moments before, I
(29:56):
guess before we jump to how, howyou how you're moving forward in
those moments, like you mentioned, they were really,
really dark times. What what got you through those
really dark times? So there's quite a few things.
I suppose one thing was I did have a friend who endured a lot
(30:18):
of my talk about like especiallyCushing's disease because that's
what I suspected that I had. And so it was helpful.
She has young children. I have young children.
It's hard to talk on the phone. So we would SMS about what had
happened to the appointments andwhat was the next step.
And I think for her constantly highlighting for me what the
(30:40):
next step was, it gave me hope to hang on to.
And I think having hope is like a beacon of light.
And another thing was with my daughter, everyday we would talk
about like our best moment of the day.
We'd print off a Polaroid photo together.
We'd write on the back about what our favourite part of the
day was. And it would like create the
(31:02):
kind of focus of even in how awful my everyday existence was,
there was still good parts. And a really beautiful thing was
from my father in I will not say anything because
(31:31):
I I almost can't find the right words to say.
Could you please do this or please?
And honestly, I felt so low about myself not being able to
do anything. That was almost like
highlighting that to then put myself out there to ask people,
hey, could you come over and fold all my washing for me?
I couldn't. So my father in law made a
(31:52):
system with me and it was an emoji system.
And it meant that I didn't have to say anything.
I just had to text him emoji. And I didn't use this many
times, but a few times I'd just send him the emoji.
He would come over to my house, clean up my house and just help
me cook dinner and things like that.
Because even things like going to the shops and get to get
(32:17):
groceries, that could Take Me Out for a whole day because I
have kind of no muscle, no energy, like I'd be breathless.
So things that were normal, things that people would take me
a really long time. So having that kind of support
was really good for getting me through that.
And I also found support groups on Facebook and having people to
(32:43):
talk to through those groups whowere trying to get a diagnosis
as well. So we're in that same wishy
washy land of I can't get anywhere with this was really
helpful, but also singing for me, seeing stories of people who
had had surgery and it had been successful.
(33:03):
And in saying this, the surgery I had does have a really high
relapse, right? And so for me, I did have a bit
of medical anxiety around this. But for me, I had to see stories
of hope of people who had made it to the other side and got
their life back. And for me, I put my full focus
(33:24):
on those stories, those people. I trained some ChatGPT bots to
talk me through it and when I would have times of feeling
really mentally down, insecure, worried, anxious about the next
step, I would talk to this particular bot about those.
And it already knew all the facts about what was going on so
(33:46):
it could provide the right wordsthat I feel that sometimes
people who haven't lived that can't provide the right words.
So that was really helpful for me.
I did see a psychologist as wellduring this period, but I did
find there was challenges in that, in that I ran out of
sessions. So once that came to an end,
(34:10):
that was a little bit hard for me.
And I think I was really lucky in the sense that my
endocrinologist both understood that my mental state from this
was not good, right patient withme and would call and like
really just provide that reassurance because it was a
(34:33):
really rocky journey to get diagnosed.
And there was lots of times of uncertainty.
And I would say them, what if I'm never going to get diagnosed
with anything and you don't knowwhat's wrong with me?
And then I that I just don't believe any more of this is what
life is. And so I think, yeah, I had that
then provide me with that hope. And I think the key thing in all
(34:54):
of this was having hope. And I even wrote myself a very
extensive recovery plan, which Ibasically thought, OK, once I
get surgery, I can do this recovery plan.
And then knowing that I would have that control over improving
my life and getting my life backto a livable, enjoyable state.
(35:18):
Because I think in that time, all I was doing was existing.
I wasn't living. And I do look back on that with
a lot of sadness in terms of they are all the years of my
child's life I've was existing. And that's really hard because I
look in photos and I know that even though I've still provided
(35:41):
her with a childhood, which she will never look back on her
childhood and think, Oh, my, my mom, like she was too sick to do
anything with me because I pushed myself to do everything
with her. But I look at those photos and I
know, Oh my God, that day out, like it was so painful.
But I just suffered in that silence to give her that title.
(36:05):
So I suppose that was really hard to just exist.
And it like actually I find it really hard to not cry talking
about this. Yeah, I can see them.
But yeah, I think that I feel like happiness now reflecting on
that, that I know she'll never feel like that time.
But you will feel robbed at thattime.
(36:27):
I feel robbed at that time. Yeah, yeah, like, but I'm glad
that she will never. That brings me some comfort to
me, that she will never feel robbed at that time.
But do you give yourself the space to think about that?
You will always feel robbed of that time.
I think lately I've become more gentle and open minded, like I
(36:48):
think I was so much in survival mode that we actually have had
this chat that leading up to surgery, I couldn't even cry or
do anything because in my head Ithink I just switched on to
survive all I could do to survive to get through each
step. Like for example, one of the
tests that I had to go through, they threaded wires from my
(37:11):
groyne up through my veins up into next to the pituitary gland
to sample blood. And I was awake through this
procedure. It was so awful.
I could hear crunching noises, my ears were burning.
It was so awful. But to get through it, I was
actually so calm and the only way I've done that was
completely disassociate from what I was going through and
(37:33):
just be in this pure survival mode and show 0 emotion to
anything. It just fully shut off.
And I think that I was saying toyou leading up to the surgery,
I'm scared, like, what if going in there, I cry and you're like,
that would probably be good at this point because you've held
(37:54):
it together too much. But I think I needed to get
through that. I needed to get through the
surgery. And after the surgery, we
weren't actually sure if I was going to know that I was in
remission because my Cushing's disease was cyclical.
There was we, we really thought that what would happen was my
(38:14):
levels wouldn't really change that much.
It would be a bit hard to tell. And so I'd have to muddle
through the following 12 months not really knowing if I was in
remission. However, I feel like somebody
was watching out for me because my levels actually crashed so
much after the surgery that I was vomiting.
And I was so sick. And I can never tell you how
grateful I was to be so sick because I knew in that moment
(38:38):
that I was in remission and thatI could finally start to like, I
was like this, all my muscles inmy stomach, everything like this
finally start to let go and likeactually live in that sadness.
And I've noticed recently I willlook back on photos or things
(39:00):
that I wrote to myself during that time and I'll have like
huge sadness just like of the time, the things I was missing.
And also like it has brought me a different type of gratitude.
Like before this, I used to be avery fit person.
I would go to the gym every day,if not twice a day.
(39:22):
And I just took that for grantedthat I was able to do that.
And the other day I ran for one minute for the first time and it
wrecked me for the whole day, the immense amount of gratitude
I had for that. I was like, oh, wow, I can do
that. I did one thing.
And yeah, I think I'm definitelyin the stage of still being a
(39:44):
battle in terms of some days I'mso frustrated because I just
want to be able to do normal things, let alone like, be
really fit and really active. And you know, I want to be like,
I want to be like a really physical.
Let's go. And my daughter is like 100
(40:04):
miles an hour. So I kind of am forced to be in
a way, but I wouldn't be able tobe without thinking, Oh my God,
I'm in so much pain. So even though I've had the
surgery now and it's a difficultrecovery and I'm weaning off
steroids, so I'm in a lot of pain.
My body is aching and I've, I'venever felt pain like in my life.
(40:28):
It's excruciating at the moment,but at the same time there's
that flip side of being like, well, I'm so grateful to feel
this pain because I I'm in remission.
Remission. Means that and yeah, I think now
that I can feel that pain and that physical pain had that
reassurance and yeah, I'm letting emotionally I'm opening
(40:50):
up and kind of really actually working through what I've gone
through and some ground work in terms of moving forward.
Yeah. And not just living in survival
mode. Yeah.
Do you feel like we still have times of dissociating from the
(41:11):
present moment? I do, yeah.
And I think sometimes I actuallyjust went through a really
tricky period where basically after surgery, because my
cortisol dropped so low, they'vehad to give me hydrocortisone to
keep my level at like a livable level because you don't have to
have some cortisol to live and function.
(41:33):
And through the weaning process,I found that my body is quite
sensitive to the amount of cortisol I'm having.
And when I'm at doses that I should be able to handle.
I have been finding that I have had some heart issues from that.
And some of the symptoms of course, they mimic the Cushing's
disease because it's the same hormone really.
(41:56):
Like also I found that my face blew up a few times.
I got red cheeks. I felt like I had cushions as my
heart was racing. I felt that anxiety feeling.
It threw me right back like PTSDand I found myself wavering
between like complete and out ofpanic.
Is it back? Have I got it back?
(42:17):
Oh my freaking God. I'm feeling awful and also
having to completely disassociate to cope through
that time. But recently I've kind of gotten
a little bit more on top of thatand I'm feeling better.
But I think naturally now, I think anyone with any illness
that you kind of get through, but then you're in remission and
(42:39):
you can never be cured. You always live with this kind
of deep, lingering sense of a little bit of fear of it coming
back. And I truly believe in my heart
now that mine isn't coming back.Like, I believe that in my soul,
but I think sometimes it's almost like a little creature
that's gonna like crawl out every now and again and you have
(43:00):
to be like, it's not, I mean. Your soul might believe that,
but your nervous system sure as shit doesn't believe it yet it
needs. To it needs a lot of proof.
Yeah, it needs a lot of evidenceand a lot of love and support to
learn that it's it's not coming back or even if it did, that
you're gonna be OK. I think it's, it's your nervous
(43:22):
system is, is needing like a whole rewiring post such an
extremely dark and difficult journey.
Is there anything that you wouldsay that people could do to
support someone that is going through invisible disease or
(43:45):
pain like you are that you haven't already mentioned?
Is there something that people can do to help someone feel feel
more supported, feel not necessarily like the medical
side of it is more supported, but that they feel less alone in
such a dark experience? So my biggest advice is don't
(44:07):
ask, just do. And I didn't know this prior to
being in this situation. And I think it's similar to I
didn't know what it was like to have kids until I had a child.
You never know until you know and.
The. Best things that you can do,
make meals and drop them off. Don't ask and just do it.
If they don't want to eat it, they'll give it to somebody, but
(44:28):
I promise you they'll probably want to eat it because they're
probably so tired from the illness to cook or make
something or, you know, order a meal from someone for them.
Or a really helpful thing that we got given was some Uber Eats
vouchers because I'm again, justtoo tired to make food and
(44:49):
things like don't ask them. Can I come over and clean up
your house? You just say I'm going to come
over and mop your floors and vacuums.
They'll see what time will you be home just it's or say two
things. These are the things I can do
for you and these are what time slots I can do them.
Tell me which time slot works for you, because if you give
(45:11):
people an option, they're often gonna feel too guilty to say
yes. Some other really nice kind of
helpful things are babysitting if the person has children, so
they can kind of get to appointments or things like
that. Because I can promise you anyone
with an invisible illness or anyillness doesn't want it to
(45:34):
affect their child. It's heartbreaking when your
child realises. So I think that's really a
really big help and just little things that show that you're
thinking of them. Like I had friends who would
always message after an appointment and be like, what
happened in the appointment? It just kind of is a little
(45:56):
thing that shows they remember, they care.
And I think that means the world.
And also I suppose this is more just like a post surgery thing,
but a lot of people, but just before and just after surgery
wrote really beautiful cards to me.
And I think sometimes just startopening up and expressing with
(46:20):
somebody that, you know, you maynot have ever gone through what
they've gone through, but you care means to people.
Yeah, yeah, both of you just wearing your heart on your
sleeve in those moments. Absolutely.
And I think for anyone that's inthe carers position, like a
husband or a wife or a partner or a close friend, it's may be
(46:42):
beneficial for you to think of ways that you can offer support
to that person that still stays within your boundaries.
And I think you said some reallybeautiful ones there of like
giving Uber Eats vouchers or dropping off food or, you know,
those kinds of things so that you can still connect and care
and feel like you are present for each other's journeys, even
(47:06):
if it needs to look a little bitdifferent.
How you offer support. I mean, not even from from that
perspective, like living in another state, right?
It's, it's like I can't just come over and do and, and clean
and that kind of thing. So I think it's, it's great to
be able to what Emily and I do. I think we've always done it,
but have conversations when you are going to go through having a
(47:30):
baby or having a surgery or you know, where you say here's
here's what we can do together afterwards.
Here's what you can do to support me or like I can't ask
for help. So tell me you know what you're
going to do. Or just kind of communicating
that with each other and being able to respect your own
(47:50):
boundaries while still both supporting each other, I think
is a really beautiful thing for close relationships to be able
to to do and. It's important as well to accept
and never judge that people's help is going to look different
at different times of your journey.
(48:11):
And there's so much that goes into the reasons as to why
different people might help in different ways.
But I think just coming to any form of that showing of care and
love with just so much gratitude.
And like, for example, my cousin, we're very, very close.
(48:33):
However, during the diagnosis period, we barely spoke.
The second I had surgery, she flew down, took a week off her
work, left her kids in Sydney tocome to Adelaide to like fully
support me. That's incredible.
And everyone's like way that they might support you could
look really different. And I think it's just so
(48:55):
amazing. And you feel so like as a person
that's been at situation, I feltso overwhelmed with gratitude
that people's just people's help, like in so many different
forms. Yeah.
And I think from an outsider, people be like, hang on.
But why didn't you, your cousin speech you why you're getting
diners? But that's just people just
different in the way they show love and support.
(49:17):
And that's beautiful in its own way.
Yeah, yeah, I love that. And I think one of the biggest
messages that people can take onfrom listening to you today is
one that Mitch, the founder of Heart of My Sleeve, obviously
speaks about so much. And that is the power of hope
from hearing other people's stories.
(49:37):
And if it wasn't for the story that he heard, he wouldn't be
with us today either. So I think it's a beautiful,
beautiful message for people to be able to take on board that if
you can find any little glimmer of hope even in the darkest of
days, and you can find that little string hanging somewhere,
(49:57):
then you can get through. And I think that that is a
beautiful message. If you just share it, if you
just speak up, if you just listen to other people going
through similar experiences, there will be some kind of hope
there that you can hold on to. Well, I think that is one of the
(50:19):
things now I'm trying to change my experience moving forward in
the sense of providing hope to people who are going through
that now. So I've created a Tiktok account
for people. And on that account, my idea is
that I want people who were in that space that I was in before
(50:39):
when I couldn't really find muchout there about what was the
next and what, what are the steps and what happens.
And like, can you get out of this?
Like I want to now give people tools of one, like, what are the
symptoms to look forward to getting diagnosed?
Because one of the biggest issues with Cushing's disease is
(51:02):
that it has such a long period of time where people remain
undiagnosed and it does permanent damage in that time.
And some people are completely left undiagnosed.
And you know, it's just a thought that they probably end
up passing away from diabetes and heart issues and things that
are complications caused by the Cushing's disease.
(51:23):
And so now I'm trying to kind ofbuild that awareness so people
can recognise the symptoms. And I have had people contact me
through that page and say, wow, like I've seen your videos and
I've now got diagnosed because Irecognise those symptoms in
myself. Yeah, forward things that people
might not pick, like you wouldn't think.
(51:45):
I certainly never thought I was the type of person to have a
rare illness. And you never think, oh,
anxiety, oh, sore body, like it doesn't create that big of a
picture at first. So now I'm kind of kind of help
people. And that's kind of my healing
journey is like putting myself out there and being very
vulnerable. Like I've also shared a lot on
TikTok of photos of when I was at my worst in Cushing's
(52:09):
disease. And that was really hard because
of course people online are going to like tease you and say
you're fat and you, you know, one person said, I've eaten my
dog, but we have to laugh. And so I think like, you know,
made myself really vulnerable inthose ways.
And I knew that those kind of things would happen and but it
(52:32):
gives me some joy in feeling like, OK, maybe I can make that
journey now shorter for somebodyelse and easier for somebody
else. And then showing my journey now
for recovery. So yes, previously I've kind of
shown like all of the destructive side of questions,
but now that I'm on that healingjourney, I'm really hoping I'm
(52:53):
going to be able to show a bit more of the things that I'm
doing because I'm doing a lot ofdifferent bits and pieces that,
you know, some might be more conventional, some a little less
conventional. So build back and recover
mentally and physically from this.
And I hope that that can kind ofinspire people that not only
(53:14):
have Cushing's disease, but alsoother illnesses that they can
kind of follow along with a bit of hope.
And I agree with you that alwayshaving that beacon of hope is
what can get you through a really challenging time and
being able to see the light at the end of the tunnel and help
other people. And I suppose another thing for
me was that during this experience, I wrote a book for
(53:36):
my daughter to help explain to her what a tumour is.
And it wasn't about Cushing's disease, it was just about
tumours in general. And that helped her so much.
And she understood the story, the narrative, like, of what was
happening, what to expect. And now I've been able to share
(53:57):
that with other people and knowing that they can then use
that resource with their children.
It's just kind of that full circle moment of like, OK, yeah,
what happened to me was really freaking awful.
Like, I genuinely wouldn't wish it on my worst enemy, It's that
bad. But I feel that maybe it has
(54:18):
given me a chance to do some good things, and it's changed my
perspective on life. And yeah, I'm definitely a
different person. Like, if you'd met me, the
person from three years ago is not the same person now.
Like, I'm a completely differentperson.
Yeah. And I just hope that now like I
can be that hope for other people and help them.
(54:41):
Well, I think that's a beautifultakeaway message from your
experience and I think it is just a a key highlight of two
realities existing at once. And I think that has carried
through the pre diagnosis, diagnosis, post surgery and into
the future that you'll always beable to validate both of your
(55:04):
experiences that it is incredibly lonely and scary and
sad and you wish it never happened and angry and all of
that. But also has shifted your
perspective on life and given you the ability to help so many
other people and you know all those things and that it's OK
that both of those can exist at the same time.
(55:25):
And I just want anyone who is listening today if you're
experiencing any of these emotions.
Not necessarily symptoms, but these feelings that we have
spoken about. We believe you and and we hear
you and you are not alone. And I really hope that you feel
safe enough with someone to wearyour heart on your sleeve and
(55:46):
let them in on the inner pain that you are experiencing.
Thank you so much for joining ustoday, M.
I love you endlessly and I'm incredibly grateful for you
being safe and in our lives and on this beautiful healing
journey that you are on now. So thank you from the bottom of
my heart for wearing your heart on your sleeve today.
(56:08):
Thank you. I'm so grateful for everything
to be alive, to be here, to be here with you.
And I really appreciate today. It's it's been a special moment
for us. See you in the next episode,
guys. My emotions have a natural
tendency to dissipate unless they get reinforced.
And so if there's more thoughts,more stories, more intentions to
(56:29):
come along. So the act of how am I leaving
it alone? Is an act of not act.
Adding more stories, adding fuelto it.
So it might not go away in 2 minutes, but it then begins to
relax and dissipate. And so rather than being the
person who has to fix it. We've become the person who
makes space for the heart, the mind, to relax and settle away
itself.
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