I was doing these headshots and you have to put your body in
such ridiculous positions, like they're like be perfectly up.
She's like taller. I'm already you and I are like
close in height. I think like 5-10, five, 11 in
there. Yeah.
So she's like taller and then she's like neck longer and then
she's like chin forward, but then chin down at the same time.
You can't how do. Anyways, your work involves a
lot of complex body positioning and sustained positions,
especially for shoots, because photographers will be like
they'll find that exact angle that that they love.
Yes. How do you going back to chronic
illness and disability? How do you cope with a job where
you have demands, you are self-employed, you have clients
that expect to get a certain outcome?
Like how do you actually do this?
You definitely have to make quite a lot of sacrifices when
you're at a job because obviously, like, they don't
really care, which is sad to say, but it's the truth.
You know, time is money, so they want efficiency.
And if I'm going, oh, you know, I have to sit down and rest for
a second and not hold this position, I'm costing them
money. So instead, I've found sort of
like methods to navigate photo shoots.
So instead of holding a position for an extended period of time,
I'll just slowly move between positions, like just flow
between positions like a little bit of a dance.
And that sort of like flowing movement actually allows my body
like periods of rest almost. Hey, I'm Hyper Mobile and if
you're listening to this, I'm guessing you might be too.
Hi, my name is Alex and I'm your Hyper Mobile host.
And today we have on Emily. Emily is a model.
She is a patient of mine as well.
If you guys consented to be on here, just to be clear, if
you're here of your own free will.
And we're going to talk about some really important and cool
stuff today. So as you know, kind of like the
theme for the season is about kind of the realities of all.
And we have a lot of different voices and people with different
experiences. There's an episode that I
recorded yesterday, actually, where I'm talking with my coach
or personal trainer about some of like the sportier things I'm
doing. And there are also ways.
Thank you so much. And they're also like people,
though, that are more affected and disabled in ways that affect
them profoundly, you know, on the on different ends of this
spectrum. And I think dynamic disability
and invisible illness are two words that we really need to
talk about. And it's something you've
experienced in your work as a model.
Can you tell me a little bit about you and how this has
affected your career and your life?
Yes, definitely. I guess it all sort of started
back in 2019 when I started having seizures and I went down
a bit of like a medical rabbit hole then and was sort of just
trying to find answers for anything and everything.
And so on that journey I went and saw a rheumatologist who
then introduced me to you and that's when I got my sort of
Ellers Danlos HEDS diagnosis. And I guess like alongside that,
you know, I got diagnosed for things like PCOS as well.
POTS feels like everything under the sun.
It's always. HEDS and friends?
Yeah, you got HEDS and Co occurring conditions.
All of the comorbidities, every single one, we'll add that to
the list. And so I guess like on that
journey that just helped me better understand a lot of like
my childhood where I grew up being very clumsy with like a
lot of growing pains and dislocating a ridiculous amount,
having had sort of knee operations by the time I was 14
and never feeling comfortable or sort of understanding my body.
Did you find standing hard? Oh gosh, so.
Difficult you pick a career that involves like I just want to
level. I think make this clear so you
find standing. Difficult.
It was going to be a dancer. You see, Alex and so.
He's like dancing and kind of fidget or move.
With a Yeah, But then things just dislocate.
So then this is like, oh, where do we go?
I know you know we'll stand religiously and walk on runways
in the smallest pointy estate. There we go there we go and work
and photo shoots always happen at wild times, ridiculous times,
and the positioning is challenging.
So before you came on, I showed you my headshots, Yes.
And because I try my best to be a model in my spare time.
Just kidding, it's for my upcoming book.
But thank you so much. You like you give.
Me model one-on-one from. That's my second career after
this. I'm ready.
But anyways, I was doing these headshots and you have to put
your body in such ridiculous positions, like they're like be
perfectly up. She's like taller.
I'm already you and I are like close in height.
I think like 5-10, five, 11 in there.
Yeah. So she's like taller.
And then she's like neck longer and then she's like chin
forward, but then chin down. Yeah.
So you're at the same time. Time.
Anyways, your work involves a lot of complex body positioning
and sustained positions, especially for shoots, because
photographers will be like they'll find that exact angle
that they love. Yes.
How do you going back to chronic illness and dynamic disability?
How do you cope with a job where you have demands, you are
self-employed, you have clients that expect to get a certain
outcome? Like how do you actually do
this? You definitely have to make
quite a lot of sacrifices when you're at a job because
obviously, like, they don't really care, which is sad to
say, but it's the truth. You know, time is money.
So they want efficiency. And if I'm going, oh, you know,
I have to sit down and rest for a second and not hold this
position, I'm costing them money.
So instead I found sort of like methods to navigate photo
shoots. So instead of holding a position
for an extended period of time, I'll just slowly move between
positions, like just flow between positions like a little
bit of a dance. And that sort of like flowing
movement actually allows my body like periods of rest almost.
It's fidgeting. It's fidgeting.
It's just like you fidgeting. Yeah, You fidget in a beautiful
way. And my mom would joke about me
doing the potty dance when I was, like, 20.
OK, That's me. She's like Alex, like, why are
you moving all the time? And I'm like I'm trying.
To. Yeah, I'm just trying to not be
in so much pain, I have to say. By the way, I we talked to us
before the show a little bit. So I send all my guests like
this little note and I say, you know, we're going to be on
camera. So basic on camera rules, you
know, no stripes, no prints, no large logos.
There's no you come with the hoodie with a large logo.
I love it. And I have to say, having some
of your content the whole movie while posing thing, is that like
a Coco Rocha influenced thing that you definitely.
Influenced by Coco before. Sort of learning from Coco and
going to New York and working with her.
I did AI did a little bit, but it was very abrupt the way I
would just sort of switch between poses.
So instead of flowing kind of in a balladic almost way, I would
move quite sharply between the movements, which honestly
probably injured me more. And then since going to see
Coco, her way of shifting between poses is for aesthetic
reasons, supposedly, but it actually also really helps with
the hypermobility and sort of just allowing my body to fidget
and get its rest between shots, which is just a win win, really.
No, it's really an honestly too, and we touch on scientifics
things throughout this podcast. I try and drop in some
Physiology, you know, in a fun, casual, conversational way.
And I have to say before I go into this, this is not medical
advice, okay? You need to speak to your
appropriately qualified healthcare providers, your
medical doctors, for medical advice that's right for you.
But what you're saying about like moving between poses makes
so much sense to me because you're basically, firstly,
you're keeping your muscles engaged, which is going to help
keep your joints more stable and prevent any abnormal movements
like subluxations or potential dislocation or even just painful
movement that's at that end range.
That's not quite a subluxation, but we still don't want to hang
out there probably. But it's also helping probably
with your autonomic nervous system function and blood flow
around your body in the sense that your muscles are having to
contract a little bit, which is going to help get blood out of
your lung, legs, back to the rest of you in your in your long
arms as well. No, exactly.
And then also I like to go into shoots and like leaving shoots.
I always wear compressive clothing just to try and like
add to that movement of blood throughout my body.
So I live in my compression socks.
I have an extra pair in my bag at all times just so that like
if my legs are pulling really badly then I can just.
Did you try my favorite leggings?
Yes, love them. We can.
Give them a shout out. I don't have a sponsor but if
LNDR wanted to sponsor me they were they should they.
Could. Yeah.
I can't. Think so.
Yeah, I know the LNDR chisel leggings, like I swear by them.
They're not a medical device. Again, if someone's being told
like, look, you need to get your medically, whatever size
specialist bespoke compression garments from your
physiotherapist, do that. Listen to your medical doctor.
Please, please, everyone do that.
But the Ellen Deer chisel leggings, Like, they're so
thick. Yeah, they are.
Like they're expensive. I may or may not have gotten a
few pairs off vented because people buy them and then they're
upset by the level of compression.
Well, because a lot of people find it uncomfortable, yes.
Whereas when you have, I understand loss in old times,
that compression actually like adds to joint support.
So that's why I live in corsets like I'm wearing my corsets a
day I live in them. They are the best.
People question that. They're like, why would you put
yourself through that level of suffering?
I'm like, it's not. It gives me back support, it
gives my hip support, and I feel so much more comfortable.
My ribs, yeah. Everything just feels.
It's like scaffolding, you know, Exactly.
It's no, my mom had this corset dress, like a really cute one.
It was like polka dots, white with teal polka dots and stuff.
And I was obsessed with it when I was a teenager.
It was kind of like almost like, I don't know, 50s style, like a
flared skirt. And it was really, it was really
cute anyways, And I now realize I loved it because it felt so
comfortable, like I was just wearing it to chill at home.
Just like this is the most comfortable thing ever.
And I always remember to going into like Lululemon in different
stores And I would be like, I'm here for your most compressive
leggings. And they're like, oh, what are
they for? And I'd be like studying,
relaxing at home. And they're like, oh, but don't
you want our less compress? And I'm like, no, I'm like, I
like compression. And so if you're someone
listening to us, you like compression.
Like you might want to be thinking about something.
I have to ask you though. So when I wear my thick
leggings, which again, they save me like you've seen me wear them
at clinic even. And I used to be self-conscious
about that because I do. I want to look like a
professional. OK.
But I think good healthcare professionals take care of their
own health. And if that means I sometimes
wear compressive leggings to work, so be it.
Yeah, patients have. I feel like patients are happy.
It's just exactly making good decisions.
But I sometimes get marks on my legs or indentations.
How do you deal with that? Like, do you just not ever shoot
your legs or how do you manage that?
It's a tough one. I mean, my legs are sort of a
sore subject in the industry. They don't like my legs in
general just because like I do have quite bad blood pooling and
so my legs do look quite swollen and discolored regularly.
So clients sort of know what they're signing up with, like
what they're signing up for whenever they book me.
So either we wear clothes that hide my legs or we don't shoot
my legs, or they just have to accept that that's something
that's going to be featured and fix it in Photoshop, which is a
wonderful tool. But like, I think sort of being
aware of how sensitive my skin is, my skin is, is definitely
something that weighs on my mind.
Like even I have some marks on my shoulders where I was wearing
a dress maybe two or three weeks ago and this dress cut my
shoulders and it was for a shoot so I couldn't remove the dress
and I was only in it for maybe five hours.
But I still have like cut marks. The soft skin thing is so
annoying so I find with shoes that they will rub the skin off
my feet like I have like a scar from a wound.
I got because I bought this pair of sandals loved them they were
so comfortable. I wore them for three days and
on the third day I just started like bleeding.
But again, this is like a normal thing.
And I knew because this is my whole life and this is all I do
is think about this stuff. I was like, oh, this makes sense
because I have done the forbidden thing of wear a
comfortable shoe for too many days in a row.
And what I really need is a bigger shoe collection with a
different sandal for every day of the week.
Yeah. Do you do that?
I do, I try and switch as often as I can so one day I wear my
boots which I love but for some reason being in like elevated
shoes really helps with hip pain for me.
You're not the only one. I did a video once, OK, so I did
a video once. It was an Olivia Rodrigo, like I
don't know, one of those song lyrics or whatever.
And I talked about the pot, like wearing heels like as well.
How like sometimes I do bad things like wear heels.
That's what I said because I love, I don't know when you're a
tall person, like there's nothing better than wearing A6
inch heel. So I like to assert my dominance
through high. OK, I was like, hello.
It's very like it's kind of fun. It's fun.
You feel just like it's. Super model and life is for
having fun. We need to look at the benefits
and the risks, but fun is, I think, even more important when
you have chronic health issues. I'm just going to say that.
It's mental health in that way. Exactly.
But someone in that video, they're like, what are you
talking about? Heels really helped me and I was
like, Oh my gosh, that's so interesting.
And what they said, which I think kind of makes sense, is
that when you're in a heeled shoe, you have to have your
calves a little bit more engaged.
There's kind of this muscular engagement because you're
balancing a bit more that you have to have.
And I think for some people, it really helps them probably a
little bit with blood pulling so you have more attention in the
calves and maybe with general stability in the the foot.
Again, I don't really get it. It's not my experience, but
that's the only thing I can do to make sense of it.
It definitely depends on the heel I find and it's like a
chunky. Give me heel taps.
If it's a chunky heel or like a wedge then I find it really is
great, but if it's a stiletto and like the shoe was just not
comfortable then I don't want them off the road out the
window. Do you?
But do you like the aesthetics of a skinny?
Of course. I have, like so many and I need
to invest in my chunky heel shoe wardrobe and Dave needs to deal
with this. So yes.
Yeah. It's Doc Martin Heels Doc
Martin. Oh my gosh, the boots.
Who was it? Sabrina Carpenter?
Is it her? She had those like lace up Doc
Martens. I should get them.
They're so cool. Do you have a pair?
I don't have the lace up ones. I have the boots.
OK, like the heeled boots? You know the knee high lace up
ones? Yes, I love them.
That's what I want, but I worry they have like.
Yeah, this is the yeah, cuz it's blood pooling.
Emily, one day please make a hypermobility friendly fashion
line. I am like I'll try waiting for
this OK cuz I'll try them on. We'll see if they fit.
Maybe you'll see me at them at the book launch, who knows?
But going back to your legs, because we've talked to us a lot
and it's been part of your journey almost from very early
on. I, I kind of knew you pre the
legs being an issue and post yes.
How do you feel about them? Because you talked about how
photographers or the, you know, the campaigns you're doing,
they'll, they might edit them or they might avoid shooting them.
You know, I, I love the long pretty dresses.
I know you do too. So sometimes they'll just cover
them up and if that's the shoot, you know, that's OK.
But is anyone ever just chill about them like they're your
legs? Occasionally it's actually quite
rare, which is really sad to say, but you might just have a
stylist or someone who like, because it's become a default of
mine now to apologize for my legs before anyone says anything
just because I'm so used to getting criticism for them.
So then like I'll go up to a stylist and be like, oh, I'm so
sorry. Like these boots don't fit my
calves. I have massive calves.
And then he'll be like, oh, amazing, you were just really
muscular. Love that.
I'm like. Who are you, Squeeze?
There are these animals like we. They're so rare, but when they
like come you away, you're just like, I wanna like take you and
put you in my pocket and like bring you with me everywhere.
You need to give me their names so we can have like some HESHST
stylist. I'm being dead serious like I'm
going to. I have two in mind.
OK, please, 'cause I need one as well.
No, I'm, I'm trying to do like a glow up or I don't like the idea
of looks Max, but you know what I mean.
I'm trying to do a refresh. So yeah, I could do some help
going back to your your legs, like how do you feel about them
though 'cause you apologize for that.
Yes. And you're.
Yeah. An insecurity of mine, which is
sad to say, but it's the truth. And yeah, we, you know, we all
have our insecurities. And my legs have become one of
mine. Yeah.
Just because I'm never sure sort of how swollen they're gonna be
on any given day, what color they're gonna be.
Will they be solid color or model?
Yeah, half the time they're just speckles and you're like, oh,
Easter egg hunt, Yeah. How many bruises or hives?
So many bruises as well. As hives.
Yeah, constantly. And so yeah, I I get a little
bit self-conscious about them, but it's something that I'm
slowly learning to accept. And I also tend to cover them,
which is not necessarily great, but it's my way of managing and
my way of coping. And then also like covering them
with compressive fabrics helps deal with the blood pooling,
which then makes me not be in as much pain.
So just like you know, there's a win lose scenario going on, but.
And I think body neutrality is a really important thing to talk
about because we kind of went through like I am a bit older
than you. So I surrounded like the early
days of like, you know, the skinny mini cocaine chic,
whatever they call it, which which?
Is back. Why do all the horrors have to
be happening now? Why?
Why do we do not need to see people's underwear above their
Gee, it's like we went through this.
No. The fashion trends have now done
some sort of like resurgence and we've now got the like heroin
sheet era back. And I'm just like, can we not?
No. I'm actually writing an article
on this at the moment and it's talking about like the
resurgence of heroin chic and how in 2023 we actually hit like
the peak of inclusivity in fashion weeks and how it's all
just gone downhill from there. And it's gone down fast.
It's. Gone.
It's like it's changed fast. When are we going to get like
this is going to age me, but like, you know, like the Jetsons
or like the future, you know, the like comics are like we're
in the future and it's nice and fun and cool and you know how
they're all wearing like compressive garments.
When do you predict that trends going to happen?
Because I'm I want a full body compressive Catwoman suit.
I want to be able to wear it and not look weird.
I think it's going to be a why? I think this sort of movement,
this fashion trend is here to stay for a while.
Unfortunately I'm not enjoying it at all and Fashion Week was
last week in London and so I just was having a nightmare of a
time. The thing is, though, if you're
like, I would have trend long enough, you become avant-garde.
Exactly. Do you know, like I was wearing
belt bags or we call them Fanny packs in Canada.
I go, yeah, but yeah, everyone calls them different things.
Whatever you're going to call them.
I was, I was wearing those like my whole life because purses
really injure me. So I could never.
Yeah, they're just. Yeah, nicely useful.
Dude, I wear to it once sometimes, like front and back.
So look, I am because of my really bad shoulder neck pain.
I would do anything to avoid having weight on my neck and and
Ross have been an issue for me as well.
So yeah, a bum bag. And then I had this like fabric
loop that would go on my underwear, which sounds chaotic,
but I was, I was a very like safety conscious, like teenager
and I was worried about someone, you know, pickpocketing me like
when I was backpacking and stuff.
So I would literally hide it under my, you know, trouser.
It's a short. And I thought, oh, I'm doing
this from like a safety perspective, but then I would
just start like only using this when I go with my friends
because it meant I didn't have any weight on my body.
So I would just have like one bank card, a little bit of cash,
but every time I wanted to pay. For something.
I'd be like one second, just like raging down slightly.
So yeah, that was awkward. But guess what was in fashion in
2020? Belt bags.
And my mom's 80 and one from the 80s, I still had it.
I know going back to like, I guess dealing with bodies that
don't do what we want them to sometimes, how do you manage
when you have a shoot scheduled and you wake up and your body's
not doing what you want it to do?
Because I had a lot of anxiety, and I still do sometimes when I
make plans and then I have to cancel them because I feel
ashamed, you know, a little bit. So, yeah.
How do you manage that when you have people you know paying to
work with you? It's definitely a difficult 1
and I have been guilty of sort of having to cancel in the past
and I sort of just hope and pray that people understand why.
So I'm very upfront from the get go about my conditions and about
like what symptoms could look like and what a bad day could
look like. So people are prepared, but then
also obviously you have to work through those days sometimes
because, yeah, we need to earn money.
We've got to pay bills. Unfortunately got to pay bill.
There are days I've not felt so hot, but I have like again, I
will never come in if I have something where I'm worried
about, you know, infecting someone or doing significant
harm to myself. But if I'm having a day where
just my blood pulling symptoms are bad, like, you know, that
throbbing heavy like pill feeling where everything just
aches, I need to pay bills. So I will work through it.
I'll put on my little compression leggings, you know,
cross my fingers be like, let's just not feel worse after seeing
patients and then try to get through the day.
Yes. So sometimes I, I know the
narrative out there and we see some content creators in this
space who are like, you need to like prioritize your health
above everything else always. And it's like.
I can't, yeah. I wish I could.
Literally cannot because otherwise bills are going to be
paid. I won't have a roof over my
head. I won't have any friends.
Like and then your health will get worse.
Exactly, because then your mental health takes a toll as
well, and that's not going to help anyone.
No. And so not having money and
having health issues is worse than being in pain.
But being able to pay your rent, Yeah, that's.
Like. Exactly, that is how we do that.
So thank you for sharing some real talk on this because like
even sometimes I'm like, Oh my gosh, like I'm working so much.
I'm not doing what I should be doing.
But it's a sacrifice we have to make sometimes, and that's a
hard one to sort of navigate to sort of working out how much you
can work so that you can pay your bills and sort of have
money to put away for rainy day, Yeah.
Especially when you're self-employed because it's
different than we can't. I can't take a sick day and get
paid as well. No, if you take a sick day,
that's it. Yeah, and even sometimes you
just need like, you know, those days where obviously of Co
occurring conditions, we have things like people with ADHD and
so it's almost their reasons even just for mental health, say
you don't even have that, but you just deal with chronic pain.
Sometimes you just need a day for like a mental health day.
Yes, but I can't like I can't take that and either you can't
be like I'm just not feeling. No, I'm just not feeling hot
today. So yeah.
I wish we could. So I'd say like that's one of
the hard things about seeing is being self-employed.
One of the good things, kind of if you can afford it.
Flexibility. Yeah.
Do you schedule recovery days after?
I try to, but then I feel guilty of like a shoot comes my way and
I'm like, oh, OK, I don't need to recover.
And then like this month I've been so guilty of that, which is
why I think I sort of have been sick the last week.
No, because I had one maybe 2 days off the entire month.
That's only on weekends. Thank you for being here by the
way. I know we did talk about this
and I just want to clear like I was like, if you cannot make it,
the show will survive. No, exactly.
The listeners and viewers will just have to hear me talk.
I want to come. No, they're happy you're here
because people, I. Find them down the line.
I have done two seasons of the Alex Show and like, it's a lot
and then it's just me talking and it's not you talking, but
it's hard to talk to yourself. Hi, Alex, How are you today?
Oh, not well, it is difficult. Emily, can we pivot a little bit
to talk about like dating if you're OK with?
That of. Course, So firstly, we're in
London. London is chaos absolutely.
You're doing with chronic health issues which are also chaos.
That's when I would describe HES and HSD as and everything else.
How? How are things going?
That's a tough question as a like 25 year old now 25, I know
distinguished I know. I feel like an out sort of
navigating life even is a little bit tricky because I'm tired all
the time. I'm exhausted.
I go to work knackered. I don't want to then go out
clubbing and partying. Oh my God, most 25 year olds are
doing. Are they really?
I thought they were staying home.
They're not. But the newspapers say that
people are drinking on their sleep.
They're. Not drinking and they're not
smoking, but they're still going out and like dancing.
So OK, like I know so I don't know how to navigate.
This. I'm not sure how they do on
that. I saw this video where someone
had a stool like a collapsible stools, a disability aid.
Have you seen these fishermen strolls?
Yeah. So I turned to Dave because I've
never been clubbing in London. Maybe for the book launch or the
main event. Maybe.
OK, I was gonna actually do like
a brunch. Can we do a daytime event then?
I was. Gonna do daytime.
That's good. One person.
Wants to do evening. Maybe I will just go out with
them and then collapse the next day.
But I saw this video with this collapsible stool and I look at
Dave and I was like, Oh, my God, I can take this with me to a
club and then I have a seat and I don't have to, like, sit with
weird or sorry, I shouldn't say weird people.
They're gonna get invited to be like people, all these people.
But yeah, then I don't have to, like, make friends to be able to
have a seat because that's always like, I just want to sit.
I don't want to really talk to you.
Strangers I don't want to talk to.
You stranger Danger. But then Dave said that the
bouncers probably wouldn't like me bringing a stool in because
it's like a weapon. Yes, they have an issue with it.
Have you tried? I've tried sort of bringing
different things like mobility aids, exactly like pain and
they're like you look young and able bodied.
They won't say that like they're young and healthy.
Like why? Why do you feel?
Like you're plotting? Yeah, exactly.
You look like there's a. Coming into here to like attack
people. I promise.
I'm just using it to like walk. It's like.
It's like, are they not aware of how standing?
Hurts. I don't think so.
So we were just talking about how people's like fitness levels
can be so different and what they're doing when it comes to
dating and health issues. And kind of like it's hard
because you'll have days where you kind of, I don't know if you
have a role play as like a normal, yes, I love it.
It's so fun. Yeah.
Can this, is this what it's like to be a normal?
I love it. It's like some days you just get
tired of dealing stuff. Like I like to role play as like
I pretend I'm like a professional athlete, like I'm
not. But I'm just like, I have to
focus on my recovery. I have to, you know, I have to
recover this afternoon after my very challenging workout.
Exactly. I'm like, feet up, you know,
compression garments on. And it makes all the health
things I have to do for my body just more fun.
Like, I could be like, there's nothing wrong with being like,
yeah, I have a chronic illness, and I need to treat my body this
way. I just find it more fun to
sometimes like mentally take a break from them.
Checking out, yeah. So like like a mental vacation?
I've got to take a nap. I'm I'm have a serious workout
plans in place, but in terms of like kind of like role-playing.
Do you ever find it like it's important if you just to take a
step back from mentally just the the pressure almost because
there's not a break. No, there isn't.
No, you sort of switch between working and then life and life
is taxing as well. So they're trying to like
navigate relationships with friends as well as then.
Friendships are hard. Friendships are so difficult
because obviously like you have to cancel plans occasionally and
that can take a toll on a relationship of any sorts.
Tentative plans. Yes, exactly.
I'm always just like, well, soft pencil then.
The best friends are the people who also have HD or HSD or
undiagnosed symptomatic hypermobility or something or
another related condition, whatever.
Just very understanding. Yeah.
Because then like, you can, Oh my gosh, I've been relieved so
many times when my friends with HD or HSD have been like, Alex,
I'm not feeling great. And I'm just like, that's
fantastic. So happy.
Thank you. Let's just post for counseling.
You were in my thoughts. I'm in your thoughts.
We shall do this friendship long distance and I'll see you like
once a year. And that's great.
Exactly. When it comes to dating, how do
you handle it? So this is something I actually
don't know the right answer for. My guess is that there's not
one. Yeah.
But it's hard when you can have a, a good day and you, you could
kind of like almost mask things in a way because you, you look
well. Exactly.
Yes, you. Do so do you kind of like keep
that stuff private or do you tell people really early on?
I'm just curious. You know, I sort of go the right
off the bat. I'm going to disclose route.
Most of my younger patients do that, by the way.
Yeah, I do not have a study yet done on this, but I do like it
comes up sometimes. And most people are just like,
yeah, I just tell people straight.
Up. Yeah, I'm just like, this is
what you're going to have to deal with.
Because my diagnosis is all the acronyms.
Good luck. Exactly, because I know if I
don't tell them right off the bat, then if I tell them say 4
weeks then or whatever and I'm starting to get invested and
then I tell them all of this and they're like, that's too much.
I'm going to have my heart broken.
I'm going to feel sad, you know? So like if I tell them off the
bat, they know what they're signing up for.
And also then they can like work out within themselves if that's
something they're willing to take on.
Because as much as I like to think I'm quite independent and
can handle my conditions by myself, the people in my life do
also have to sort of take that on because they have to deal
with me having like bad health days.
They have to deal with me when I go into the hospital.
You know they have to yell at me to eat food occasionally when I
forget. And.
Then like there are little things that they sort of have to
learn to do and accept doing. And I don't want to sort of
throw that into the mix way down the line when there are feelings
and involved. Yeah.
So I want sort of people to have the the option to check out.
Yeah. And I I think that's fair.
And have you ever seen the Lapu Bell guy on TikTok?
No at all. Oh, he's great.
I'll send you. I should know his name.
I'm really sorry, Lapu Bell man, I don't know your name, but he
like lists qualities in her partner that like just aren't
cool. And if they have it just like
Lapu Bell and yeah, in the bin. Yeah, like in the trash and like
that. I've had a chaotic dating in a
relationship. Like we won't go to details on
it, but it's the one opportunity you have in your life where the
trash will take itself out. And again, these might just be
people. I'm not saying they're all
trash, but like, just to go with the analogy, yeah, they might
just not be the right fit for you for whatever reason.
I think you're amazing. So I think they'll suck, but
they might not be the right fit for you.
And it's like it just, it sorts itself.
It does. As someone in their 30s, I did
it all wrong. If you're a young person in
listening to this, this is a one time in your life.
You don't have to do anything. No you know other than protect
your emotional well-being and safety and everything else it
goes obtaining. But like, they will just like,
see themselves as the door. On into the van.
Just, like, grease that slide and just, like, nudge them off,
let them go. Goodbye.
Yeah. No, I have to say, like, so we
won't get into Dave's details. I wanted him on the season of
the podcast but he's all busy playing lacrosse and doing
lawyer things and stuff. But he will be on an episode so
excited. He has to be because he lives
with me so. Exactly.
First hand experience. He has, well, he has no choice.
I meant like, I will physically, like, drag this man, like from
my home to here, Like he has no option.
That This is why I do all my fitness stuff is to make.
Yeah. And to make things like this
happen. But Dave has some chronic health
things going on, which means that he, like, there's this
really unique understanding you get when both of you.
Yeah, affected. And I just say that cuz I know I
have some younger patients who are like when they're dating
people, they are like making them do the bait and scale.
They're like if he is hyper mobile or she or they or
whatever, they're like I'm not going on a date with them.
They're this. Yeah, yeah.
This happens because I think they get worried about having
two people with health issues in the relationship, which I get.
Yeah, you can understand the concern, but also then surely
enjoys someone who understands what you're going through a bit
more. When it comes to your, I guess,
like if we talk about health issues and invisibility in
general, I think there's like, I think of it as the D word in my
head sometimes and it shouldn't be.
But disability is like a hard word and it's it's not that it
should be. And I feel like the weight of
ableism like so heavily on me and within me all the time.
So if I say something that's like influenced by the ableism
within me, I'm trying to address that, OK, but it's it's hard.
How do you ask for help? Like do you ever need to ask for
help? Or all the time?
OK, all the time. But I'm not very good at it.
No. I'm so stubborn.
Have you gotten better at like asking for help over the years
or identifying? Definitely slowly, I think just
through friends sort of making me ask for help.
They're like, Emily, how am I going to know that you need help
and what to do? You ask.
And I was like, you know what? That makes sense.
They're not. Psychic.
Exactly. I sort of expected people to be
a mind reader before, but I think kind of because I wasn't
necessarily sure what I needed either.
And slowly as I've started to learn the things that help me
and the things that I need, then I've been able to ask for it.
But when you just feel so out of sorts in your body, you don't
know what you need. You're like, I feel
uncomfortable and I feel like something's wrong, but I can't
pinpoint what and why. Yes.
And it's just like, OK, well now what do I do?
And it's so disorienting, like everything to do with HDSHSD Co
occurring conditions. It's like you'll wake up one day
and you're OK. You'll wake up the next day and
you're bad. You'll ask for help and then
you'll be told it's in your head.
Yes. You'll have like in your
experience, just going back to your, your legs again, you'll
have the stylist who's like, Oh my gosh, like, yeah, your legs
are a little bit bigger. Let me help the good ones.
We the angels, the Queens. Plus we're like, let me help you
with that. And then we'll also have like
healthcare provider, there's like maybe a medical doctor be
like, oh, your legs, like what are you talking about?
They're normal. It's it's in your head.
And you're like, well, I can promise they're not.
Yeah, no, they're dude, I've seen you before.
I've seen you after like. I'm this is not normal.
But like, it's almost like this whiplash.
So it's so hard. Forget about even the and again,
people should not be embarrassed to have disabilities or to need
to ask for help or to need to use a disability aid or
whatever. But it's already difficult
enough to have to be different. But then when your body has
changing needs every day, every hour of every day, it's.
Hard. It's so difficult.
And then sort of like understanding how to navigate
that yourself with like the dynamic disability, that whole
nugget of disabled community, Like navigating that within
yourself is really challenging because you're like, I can't
understand how yesterday I could literally go and climb a
mountain and today I can't even get up to make myself a cup of
tea. And it's just like the duality
of that messes with your mind. And so then trying to get
someone else to understand that is so difficult.
It's hard, especially when they don't have stuff going on
Exactly. Again, some of my patients and I
disagree with me, but like I, I obviously I'm very happy in my
relationship. But like, I rate being with
someone who gets it because then, like, Dave will just bring
me like a blank or he'll be like Alex, do you want to play some
video games or whatever? He will just like, yeah.
Or he'll be like, Alex, you need to like take a rest.
Yeah. And he is like, so because he's
been there and he gets it. So like I am.
It does help having that partner sometimes to be able to like in
that ideal situation. No, exactly.
Be able to support you in that, in that way.
Certainly in terms of things that kind of help you, is there,
you mentioned compression garments.
Is there anything else that you like, swear by or anything?
I'm a bake electrolytes or like salt in my butter girl just
because of the pots and so as much salt as I can have I will
have. It yeah, we've been like safe.
Parameters. Oh yes, I'm not like just having
a bucket of salt do. I remember I made like my salt
supplement PDF. I remember if I gave you that or
the electrolyte guy, but it's like no, I realized quickly
early on. Tell me, if you did this in
childhood, I'm curious. Would you go to the sink and
fill up a large glass of water and chug it and then fill it up
again? Yes.
Yeah, you'd always do 2. Right.
Two of the pint sized glasses okay again so everyone should
know by now I'm not a medical doctor should be clear but you
care. Should Osteophath okay, and I
cannot diagnose people with any cardiovascular things, but if
your child or teenager is doing that all the time and they
haven't just run like a 10K or something, they're just like
waking up and they've got to like have my 2 liters of water.
Yeah, that is a sign they are trying to up their blood
pressure. They are trying to exist.
Yes. No, I have to say, like,
learning about electrolytes for me has made a huge difference.
It's one of the cheapest and easiest things you can do.
And we want to be careful. People need to speak to their
medical doctors and make sure doing what's safe for them.
Yes. But yeah, I totally agree.
That's been a game change. Sure, so good.
Anything else you found helpful? I mean, I do have sort of like a
little an, an array, let's say of mobility, a yeah, like a box.
Thanks. I gotcha.
I want like a big. Of my bed, I have like one of
those beds that lift up sweet the entirety of my like under
the bed, amazing. I've got crutches, we've got
canes, we've got like knee braces, we've got neck braces,
back support, fantastic. Anything finger splints because
I just look at my fingers so often, like there's so many
little Nuggets of joy in. There, Yeah.
And sometimes you don't know what you're gonna need.
No, but like, having it is helpful.
You know, for me, I right now, I don't need too many braces.
Funnily enough, I did wear a brace for my wrist from the age
like 11 to 20 every night. Yeah, So I am fractured my wrist
when I was about age like, I don't know, 10-11, something
like that. And then the fracture healed.
But I kept having this horrible, horrible aching pain and they
imaged it. They're like, Alex, it's in your
head, there's nothing wrong, blah, blah, blah.
I went to the hospital and then to get rid of me, they're just
like, you have to wear this brace the rest of your life
basically every time you sleep because it would be at night.
I'd get this achy pain. I also had it during the day.
But I think you know, you have chronic pain.
You come so good at blocking it. Out and then at night because
you're trying to shut down, yeah, you just feel everything
100 times more. Oh yeah, 100% So I am.
Yeah, you. You run out of energy and the
whole process of sleep requires that your brain stops
distracting itself. So I had this like really bad
nighttime pain. And they were like, wear this
brace. It was this really pointless
metal, uncomfortable Velcro. Scratch, I know the.
One, you know the one, I swear we all got this one.
OK, But the hospital was like, go my child.
They're like, you're just going to.
And they told me they're like, you will have pain here the rest
of your life. So I was basically told I'd have
chronic pain and arthritis from the age of 11.
I was told this from about the age of 11 and 12 as well.
And they're like, yeah, you're just, you've got early onset
arthritis. I'm like at 11 years old.
It's grim too, and they just send these children away.
Just like that does not sound right.
OK. Yeah, that I felt so happy I was
able, luckily to be able to sort out that injury.
It's part of like kind of my origin story.
It was the thing that gave me hope that manual therapy and
exercise can actually do something as I'd written off
this entire industry, quite frankly.
Which is why if you told me that I'd be working in this field,
I'd be shocked if you told me like age 18, like Alex, you're
going to be an osteopath and help people with muscle and
joint pain through manual therapy and exercise.
I'd be like, no, you're joking. Absolutely.
Telling lies. Take it, it is.
I don't like this field, but I have to say that being able to,
you know, have that brace when I needed it, firstly, I'm happy
that I was given something. Option.
Exactly. And I wish I had a bit more
support, but at least it was something.
And being able to then, you know, be like, I have outgrown
this. I don't need this.
But also through my learning about dynamic disability and
chronic illness and health, you know, my own journey and that of
my patients being like, you know what, when my fingers are
hurting, it can help to wear a finger splint sometimes or just
having that confidence to kind of build this, this box.
Yes, exactly. Because I think a lot of people
question it just in day-to-day life again, because the average
person doesn't know what a dynamic disability is.
So seeing you one day walking in on like crutches or using a
cane, the next day you're running in just like, how does
this work? Yeah, they get, they get
confused and I I do get that because growing up especially
like again, I was growing up kind of in the 90s and so on and
things have improved. People always think like when we
get older, you're like, oh, things must have improved much.
They haven't, I know, not improved, OK, to be clear.
But like, when I was little, I would have been very surprised
if I'd seen someone in a wheelchair stand up.
Yeah. Just because I didn't have that
education. No, exactly.
But the concept of dynamic disability is so important for
this field. It's been important for my own
journey as well. Can you explain to our listeners
and viewers a little bit about how you define dynamic
disability? Just like a conversational,
casual tone. I guess it's just like a
disability in which every day you require something different
and your body presents differently.
So I see disabilities in general as like a spectrum.
One day you might be on sort of the extreme end of the spectrum
and you might require mobility aids.
You might not be able to get out of bed.
You might have sort of limited mobility, like mobility function
and then on another day you might be great.
You might not feel any pain, you might not need any support, and
you might just be able to go out run the 10K if you wanted to.
If you want to. You don't have to, but if you
wanted to, you could. And so understanding that you
can shift between either end any second of every day.
So that's sort of how I view it, dynamic and it's.
Every second of every day is so important because you can feel
fine. Yes, until you don't.
Because I think sometimes people think, oh, I'll wake up on a
certain day and I'll know how I feel and it's.
Like a good day. And it's just like, well, that's
not necessarily the case. Sometimes those are the worst
days because you get your hopes up.
You're like, I'm gonna do this, I'm gonna do this.
And then you just, like, crash. Yeah.
So it's just like, it's like constant whiplash basically.
And you wake up and you're like, I've got unlimited spoons today.
I'm just gonna use all of them. And then by the time sometimes
like 10 AM, you're like, Oh no, I'm out.
Whether it's spoons, whether it's like any other way that you
kind of like ration or visualize your.
Energy. It's like sometimes the power
bar analogy on a phone works really well.
Also, I think there's a little bit of a lack of knowledge
within the medical industry regarding HEDSHSD elders,
analysts in general, because they still sort of see it as
this, oh, you're just hyper mobile.
Like that's not a thing to acknowledge.
That's not a condition. Like you're just a little bit
flexible. Yeah.
And so whenever I go into the hospital for like one of my
other conditions and that like anytime I have a flare up
regarding any of them and I say like, oh, I have HEDS.
Yeah. And they're like, oh, OK.
And, and I'm like, well, you have to understand that the way
you treat me now has to change because if you use things like
anesthetics, I'm not going to react well.
Like I have really bad reactions to anesthetics.
I never wake up like, Oh no. Well, no.
None of that. This got dark real fast.
No, but like it takes me a long long time to wake.
Up and you have safe medical support for this right like
you've talked with medical I'm going to kick you out of this OK
fine you've talked to your medical doctors they're
supervising yes thank you Emily's medical doctors OK
continue so so yeah they it but it permeates every single aspect
only of your existence and of your healthcare because earlier
we were talking about relationships and you're like
yeah it's just like it's little things around the house and I I
wanted to interrupt and I try real hard to not interrupt
people on here but I was like no it's not little it's like
everything yes like Oh my gosh the weight of the plates that
Dave and I get like no. You have to make sure you assess
it. Yeah, the weight of the pans.
Yeah, I want to use the. Pans injure me so madly because
I have like cast iron. Why?
Because I love to cook and like I trained as a chef for a while.
Stainless steel. I know, but it's not quite the
same chef aspect. Really good stainless steel is
nice. Yes, it is.
I know it's not the same. It doesn't retain heat.
I know, I know, I know. I don't.
Know and then I hope there's like someone in my house that I
can be like, hey you can you? Yeah, This is.
This is what we need. We need to be some friends for.
Exactly. Yeah.
No. It's like it impacts every
single aspect of my existence. Like, one of my saddest memories
is it was the last time I ever got to go shopping with my mom
before she died, Which is why I like clothing is hard for me
because it does make me sad. And we were in the mall and I
just had this itchiness on my inner thigh like by the seam of
a pair of jeans. And I, this is when you know,
you think you're losing your mind.
And now I know that I was having a weird just nerve reaction of
some type. I'm not diagnosed with MCAS.
And again, I'm like, I'm not going to say I have that, but I
do have some weird skin sensitivity symptoms to be
updated maybe in future. But I was like just walking
around the mall living my best life and this intense itching
pain sensation. I thought it was like a piece of
plastic thread that was stabbing thigh.
So I ruined that whole last time ever shopping with my mom and a
mom being normal by having to go to the bathroom pulling my jeans
down. I bought a new pair of jeans.
Just to like, get out of the sensation.
And I didn't realize now I think it was probably a small fiber
neuropathy because all of patches of skin that feel like
they're just burnings were going weird.
And I used to think I was getting cleaning like product on
my skin. Yes.
And I would just like try throw out stuff in the house and be
like, no, this is what it is. Now I know I wasn't losing my
mind. It was my body being stupid in
some ways, which is just like it's it's hard, the
psychological management. 100% no.
I had similar things happen in school with clothing, like with
clothing and I would be wearing like a jumper which would have
like a zip or something that would just like not work well
with my skin. And it got to the point where I
was having such, like, visceral reactions that, like, it felt
like someone was either, like, hitting me with something or
like, throwing something at me. So I would turn around in class
in school, and I'd be like, oh, who's doing that?
Yeah, there'd be no one behind me because, like, no one was
doing anything. It was just my clothes.
And so then I thought I was losing my mind.
And only sort of through time have I realized that it was just
my clothes that were just causing this reaction.
And it's such a weird thing to sort of then have to think about
when you're looking at clothing to buy.
You're like, oh, how will this make me feel like 5 hours into
the day, will I be fine? Or will I then suddenly have a
reaction to the seam or the zip? Or will it suddenly just like
get uncomfortable because it's like digging into my shoulders
because it's got straps and I hate.
Straps or to be comfortable for one day until it gives you a
wound and then it's longer comfortable.
No, none of this is easy. That's why you've seen me kind
of go through the journey of my book.
You're one of the few people who's been here from before the
book. Maybe you'll be active in the
book. I've still seen me, who knows?
But with the book, like that's why I've been so passionate
about this book because I'll never get like that shopping
trip back with my mom. And I wish that I had just known
in my head that it was just my skin being silly.
It wouldn't have made the sensation go away, but it would
have helped me not be so, like, upset and confused by it.
And there's something to be said.
I always say, like, you know, we want to know the knowable and
manage the manageable, treat the treatable.
But by at least knowing the stuff even that can't be treated
or can't be managed, particularly just knowing that
gives you this weird sense of like, peace.
Yes. Can I call it that?
And. Yes, I think, I think so,
because I I definitely was very confused growing up about my
body because I had no idea what was going on.
Like, I would see my sisters and they would be very active, never
have pain, never get injured really, never get sick.
Really. Yeah.
They were superheroes. Like superhuman, Are they?
Hypermobile. I don't think it's No.
No, they're not. Dude, my brother's not
hypermobile. Weirdest thing of my life.
Well, both my sisters are adopted as well, so OK,
different genetics. So you know, they they have
superior genetics. Yeah, my brother, I'm like, I
question things now, but yeah. But yeah, they would just be
going about living their best. Lives and then I'd be there with
back pain and neck pain and nine years old and my mom and dad
would just think I was like making things up.
They were like, you know, you're a nine year old, Like how bad
can your back and neck pain be? And I'd be in agony, like crying
and screaming some days because I was in so much pain.
And then I developed migraines at nine years old and then would
be in pain for like 25 days a month.
Did you find some of your childhood pain worse or as
intense as some of the pain you found in.
Definitely, definitely OK me. Too, It's always like really
good if someone was like, Alex, do you want to be 9 again or 16
or 21? I'm like do God no like we are
not avoid those years Friday for that.
Like some of those years were just horrific and it's just
like, I'd rather not go back to that.
Thank you very much. My guess, I don't know if
there's an explanation for it. Growing pains firstly do not
exist people. Again, if you want to fight me
in the comments, I guess we can do this.
There's a really good systematic review on this, so I will just
be linking you to that. Yeah, growing.
There is no clear consensus on the usage of growing pains as a
diagnosis and what they actually are.
Yes as well. Again, people sometimes when
they experience growing pains, they will be in direct conflict
with, I think it's the NICE guidelines or the NHS page on
growing pains. They're like, oh, it has to be
like within like the muscles, not the joint there.
There's certain things. And it's like when you have that
deep ache deep inside your knees, that's a classic place
that that's something that should be taken seriously
according to the NHS page, according to my personal views
of like not just subjecting children to chronic pain and
basically gaslighting them. So, you know, being, having that
type of health experience, it really affects your life and it
certainly makes things strange with your siblings.
Because I am, I talked with my brother.
So as far as I know, we are biologically related.
We look quite similar to I was talking with George, and George
is a mathematician, so he's like a very thoughtful person.
I love that. Have you spoken with many
mathematicians? I have a few friends who are
sort of mathematicians or work in finance.
Yeah. They just love numbers and love
logic, Yeah. And so that's how their minds
work. And obviously like.
Is a very different, very different from the other type of
situation. But my brother 11 events, I
asked him, I said, like George, I just want to confirm this and
I have asked him this before and I'm probably going to ask him
this like 100 more times in our lifetime.
I was like, I just want to confirm.
Did you have any pain as a child that didn't make sense to you?
Like that didn't occur as a consequence of, you know, an
injury at a playing soccer or something like this?
And in typical mathematics fashion, he just sat there, gave
it a little thought, you know, like a mathematician.
Yeah. Yeah.
Literally, he's a very thoughtful person.
And he he literally said, and I quote, I've never had any pain
that didn't make sense from a cause and effect perspective.
My jolly cut the floor like I was just like, what?
Like because I know it's possible.
Yes. But obviously we don't have that
experience. Like I can't imagine like that
life like and I was like, did you have pain at night as a
child? Are you Are you sure you did
have agonizing pain? I just want to double check.
Like you can tell me. You can trust me, George.
And he was just like, no. And he was just chilling.
It's so weird. No, I mean, I shared a room with
my sisters growing up like this. That was just the house we were
in. Yeah.
And. And so, like, at night, I would
spend the entire night tossing and turning, trying to get
comfortable because I'd be in so much pain.
And they'd just be there. Did you get nervous to go to
sleep too because of the pain? So nervous.
I never wanted to go to bed. Yeah.
And then I'd be up first thing in the morning because I was
like, finally, I don't have to be in bed.
So I was just always exhausted. And I was the same way really
up. I'm like, we're getting out of
bed because bed is like a bad. Place that is evil, I avoid bed.
But standing hurts too. Yes.
So that's like, yeah, everything hurts.
It's difficult. Emily, it has been such a
delight to have you on today. I have to say, I hope we can do
this again today. We've talked about so many, like
so many things I have to say. The question I want to ask you,
if you don't mind, is, is there anything that you wish you could
go back into little like 9 year old Emily or little 16 year old
Emily? Is there anything?
Oh, that is a good question. I think actually it's probably
something a friend said to me quite recently.
And I don't know if it's something that necessarily I'd
be saying to little Emily or maybe it's just current Emily
and needs to hear it. But a friend told me recently
that I'm never too much because I get in my head a lot and I'm
like, all of this is too much for me to handle, so it's got to
be too much for someone else to handle.
And she said that, like, the people who are willing to accept
you on your bad days are the only people who are worthy of
accepting you on your good days. And I was like, that makes so
much sense. And yeah, I think little Emily
hearing that would just, it would make her feel a little bit
more seen, a little bit more welcome in the world because I
felt crazy as a kid. I was just always in pain,
always getting injured and just sick and not being in school.
And I never had like the typical childhood because I was an adult
having to navigate health issues from 9.
Not a typical person. No, exactly.
It was just like I felt like I had to be an adult and I never
really got a childhood because of that.
So I think, yeah, just knowing that I'm OK as I am and that
it's not all in my head and that things get better and then maybe
worse and then better and, you know.
We're looking for that upward trend.
So there's some, there's some. My brother can do the
terminology better than there's gonna be ups and downs in this.
And I, I spoke with another episode.
It's. It's hard riding.
Sorry. It's hard riding those ups and
downs because when I have downs, sometimes I had one this summer.
Yeah. And it's scary because you don't
know if there's gonna be another up after like I'm gonna just
keep believing there will be because otherwise I can't.
You have to hold that hope. Yeah.
You just have to like commit to that kind of.
But sometimes, absolutely, there will be situations where people
have it down and it it goes down basically.
And that sucks. But no defining ways to ride
that out and deal with the uncertainty.
I I think is critical. Yeah.
There's this quote from this poet Keats that he talks about
the idea of negative capability and being able to just kind of
deal in situations where there's a lot of uncertainty.
I'm really like, I'm really shoving this code in here.
But it's just that the phrase negative capability always
really resonated with me because it's like it's just dealing with
uncertainty and kind of this acceptance of how things are,
but still ideally trying to find those moments of joy and that
brightness. We have to.
You have to. You have to, you have to.
No matter how difficult it is, some days you.
Flying unicorns with sparkles and rainbows like you have to.
And I think I was trying not to get teary when you're talking
about being, you didn't say being an extra, you talked about
not being too much. But this idea, and I think it
happens to a lot of young people where they get told as children,
you know, you're too sensitive, you're being a drama queen and
so on. And that's from early childhood.
From Yeah, yeah. They then get older and they're
in relationships. And they still believe this.
Yep, and these are people who, in my opinion, this is a topic
I'm very passionate about and we won't get into it now, but these
are people who end up being more vulnerable to abusive
relationships 100% because they're they believe that
they're too much and that they should be grateful for anyone to
put up with them. And I say that because that was
how I felt in my life. And I think for some people, you
know, the harmful, I talk about Co occurring conditions and
potential harm. There's harm even from the the
consequences of chronic illness and disability where we know
that people are at greater risk of being in those situations.
So you're, you know, every guest says different things, but your
comment on not being too much, I think it's absolutely one of the
most important things that anyone can hear.
And for me, it was the phrase I read on a card one day back when
I was really struggling. And I'm not good to point in my
life, but it was like, never let anyone dull your sparkle.
Yes. And I think just knowing that
you are a incredible person who's lovable and you know who
deserves everything in the world.
I think having that kind of foundation to who you are as a
person is so important because it too safe and also you're just
awesome. You're awesome too.
Thank you, Emily. Emily, I'll have you back one
day. But for now, we'll wrap up and I
hope to see how my book launched.
It's called I always. I don't like to do promotion
stuff, but I'm supposed to mention the book.
Like a few times in season. OK, I'll mention the book real
quick. It's help.
I'm hyper mobile your how to guide to HEDSHST and life in a
hyper mobile body. I say guide like it's a guide,
like this episode has been a guide this, but that way, unlike
this episode, I do get really detailed on factual research.
It is heavily referenced. Perfect.
It is like I wanted to kind of make it like something people
can hold up when they're dealing with unpleasant nonsense
situations in healthcare contacts.
So it is heavily referenced. Again, I know I'm not a medical
doctor, but I can read research. I can work with research
assistants and different people in different fields and we can
write an incredible non fiction book that's factual,
informational and reasonably fun to read as someone who
definitely, you know, needs things in a concise and
accessible way. I have tried to make it
lightweight to not injure hands, accessible, fun.
And also we touch on things like, and This is why I have to
have you back on clothing. Like, I don't know, things like,
you know, I have heds. Can I get a tattoo?
It's like, again, it's not medical advice, but there are
certain things that you might want to think of and talk with
your doctor about. So just all the questions I get
on social media, like, and from patients, all their random
questions. I've just tried to put answers
in here. So yeah, if you're excited about
the book, get on my mailing list.
It will be fine. Pardon, I'm already on the
mailing. You are good and I will I will
hopefully see you at the launch and hopefully some of the
listeners and peers here. Anyways, Emily, take care and
thank you to everyone for joining us today.
I will see you next time. Bye.