August 8, 2024 • 36 mins
Activist and Hollywood producer Holly Dillon was diagnosed with psoriasis when she was just 14 years old and, at 20, was told by a doctor that there was no help for her–that her body had “failed.” Devastated but not deterred, Holly launched Get Your Skin Out, a visual campaign and online community of people sharing about their skin disorders, and looking beautiful doing it. As we step back in skin history, we examine the lives of Benjamin Franklin and Elizabeth Siddal, suspected psoriasis patients, who wrote extensively about how their symptoms affected them. We see they faced many of the same challenges people do today.
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Episode Transcript
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Speaker 1 (00:02):
Welcome to Our Skin, a personal discovery podcast. I'm your host,
Holly Fry, and it is wonderful to have you here
with us. Connection is what this show is all about,
specifically connecting about things that we are sometimes afraid to
talk about. Today, we're going to be exploring the ups
and downs, past and present, personal and universal troubles we
(00:22):
have with our skin. Our skin is our most visible organ.
What happens on our skin affects the rest of our lives,
especially when dealing with a chronic condition. Getting diagnosed with
one of these, like psoriasis, can be overwhelming, but you're
not alone. Each episode features a personal story of resilience
and grace, but our personal stories are threads in a
(00:45):
larger tapestry, and there are lessons for us in the
history of how we treat our skin and the progress
we've made together. Caring for our skin is caring for ourselves.
Whether you're seeking inspiration for your own journey or curious
about the history of our skin, you'll find empathetic, transformative
conversations here on Our Skin. Our guest today is Holly Dylan.
(01:10):
She is an executive producer with a rich background in
both Hollywood and activism, and she knows how unforgiving the
industry can be for people with visible skin conditions. She
was diagnosed with siriasis at just fourteen years old, and
at twenty she was told by a dermatologist that there
were no treatments available to her, which would of course
(01:31):
be devastating as her symptoms were really debilitating, and of
course siriasis is a lifelong condition, so Holly set out
to find answers and community on her own terms. For years,
Dylan chronicled her experiences on social media by using the
hashtag get your Skin Out, with the hope of connecting
with others facing similar conditions. Now Get your Skin Out
(01:54):
has grown into a campaign and a support network, followed
by thousands that share photos and tis and uplifting communication
about things like sariasis, viteligo, stretch marks, hyper pigmentation, and scars.
Holly emphasizes the person behind the condition. When we step
back into the history of skin today, we're gonna try
(02:15):
to get to the heart of what two particular people
went through in their times. The writings of Benjamin Franklin
and Victorian painter, poet and model Elizabeth Siddel will show
us that Siasi's stories have an awful lot in common,
even from the distance of hundreds of years. What we
have in common builds community, and that is what is
important to Holly. She has a superpower for creating impactful
(02:39):
stories that drive action and change. Holly, Welcome to our skin.
I am so glad you are here with us today.
Speaker 2 (02:46):
Oh my god, thank you so much for having me
Holley on Honor to speak to you. And I'm so
excited to get the history behind this. It is something
that I am yet to dive into. So let's do
it today.
Speaker 1 (02:58):
We'll brace for impact. So I want to ask you
some questions. I want to know how this all started.
Because you were very very young when your soriasis symptoms emerged.
What did you first notice changing on your skin? And
at an age where everyone is already a little self conscious.
Speaker 2 (03:16):
So I was first diagnosed with crisis and it was
actually located on the bottom of my chin. And you know,
I was fourteen at the time, so very much in
the throes of puberty. And if I'm honest, at that point,
myself or my family, or my kind of wider network
weren't really familiar with crisis. So as a self diagnosis.
We thought this was just a part of everybody's teenage
(03:38):
journey and I had a spot on the end of
my chin, but over a period of time, you know,
visually and physically, it felt very different, which is actually
what led me to go to my GP in the UK,
in London, and that is formally where I first got
my accurate diagnosis of crisis, and particularly gutt eight. Crisis,
(03:58):
which you know, twenty years on is something that I
still live with and sitting here today and speaking to you, Holly,
is all over my body, from my face, my ears,
my genitals, my back, my legs, you name it. I
am truly covered in crisis.
Speaker 1 (04:12):
Psiasis presents with a lot of different symptoms, and one
that a lot of people experience is itching, but that
is not everyone's experience, right.
Speaker 3 (04:21):
I'm glad you brought that up.
Speaker 2 (04:22):
I think the common symptom that people think that we
live with is itchy, flaky, dry skin. But for me,
for example, my skin doesn't actually itch that much, which
if you were to look at me, might sound absolutely crazy,
but for me, mine actually leads more on the dry
side and the flaky side, but it does not present
as an itch. But I know for many people that
(04:42):
I do speak to through Get your Skin Out, that
itchiness is absolutely a common factor. And you know, I
think really needs to be linked to the kind of
mental and physical aspect of living with autoimmune and skin
condition likesorisis that having that constant chronic itch and pain
and dryness is something that people really struggle with, and
You're right, is not acknowledged enough for people's everyday lived experience.
Speaker 1 (05:07):
I'm really glad that you moved into this space of
lived experience because I know for a lot of people,
soiasis kind of keeps them from living. They don't get
out there and do it. And I think people that
don't live with a chronic skin condition probably aren't really
cognizant of just how debilitating soriasis symptoms can be. They're like, oh,
(05:27):
you're itchy, I've got itches before, but that.
Speaker 3 (05:30):
Is not it.
Speaker 1 (05:31):
Can you talk a little bit about that disconnect between
people that live with these conditions and people that do not.
Speaker 2 (05:38):
I think you said it right there that the everyday,
normal lived experience that somebody who is not living with
a skin condition has no context for us that do.
Speaker 3 (05:45):
And that isn't to pit each other against each other.
Speaker 2 (05:47):
It's actually to invite people in for sympathy and understanding
where we're coming from. So for example, an everyday task
like going to get your food shop. Maybe you're a swimmer,
I swim every day, facts size and my kind of
mental health, just wearing maybe a short sleeve top in
the summer or a pair of shorts. You know, these
things that I think on an everyday normal person might
(06:09):
not actually think is going to be a huge step,
but for someone living with a visible skin condition like
me with psoriasis, it is, and it can feel very
debilitating because what happens when you take those steps in
these normal, everyday routines is you are subject to people's perception,
and that perception is often negative. It is often coming
(06:30):
with a lot of shame, and you know, for us
living with it, that can feel like we don't have
a place, and that, unfortunately is the kind of wider
societal impact in and around what we should look like,
what our bodies should be that has really kind of
we've heard this and other kind of body positive movements,
but is absolutely a part of our every day living
(06:50):
with a visible skin condition as well.
Speaker 1 (06:53):
Now, I love that you invite people to get in
the conversation and ask questions and learn. But I wonder
if you've ever had someone who pushes back and minimizes
when you try to explain what's going on.
Speaker 2 (07:06):
Oh absolutely, I mean I think, as I mentioned, I
swim every day, so I kind of always have this
ready to be braced fight or flight response where I
know someone is either going to come up to me
and ask an unsolicited question or I'm going to get
the megastare down from you know, everybody that's already swimming.
The position that I have taken, and this is very
much echoed in the person that who I am and
(07:27):
through the campaign is really taking an educator active response
to educate people and invite them in and instead of
meeting them with I guess, aggression or mass frustration, which
although I feel it, I contain, I contain myself.
Speaker 3 (07:44):
I take a deep breath.
Speaker 2 (07:45):
So yes, there's pushback, but for me, I try and
meet it with accurate information, educational as a response and
hoping that that person would leave with a more informed
understanding view of a skin condition like sir, and in
the meantime reshape or repivot their perceptions of what actually
living with a skin condition is like.
Speaker 1 (08:08):
I want to talk a little bit more about the
early days of your diagnosis, because here you are as
an adolescent with this thing that you know is not
just a pimple or something going on. Did it help
once you actually had a doctor's diagnosis to contextualize what
was going on? Like, did that help you as a
fourteen year old or was it all just this sucks?
(08:28):
There's no way around.
Speaker 2 (08:29):
It getting a diagnosis at fourteen. I think whilst I
couldn't really register the wider impact that living with a
chronic condition would have on my life, I think the
first step always is understanding actually what the hell it is?
So do you actually have a qualified doctor be able
to distinguish and say this isn't just you know, pubescent acne,
this is actually prisis in my case, really allowed me
(08:53):
to have an informed journey of how.
Speaker 3 (08:57):
I could live with a skin condition.
Speaker 2 (08:58):
So it's very important to get your diagnosis if you
have access to that healthcare system. But you know, social
media when I started Get your Skin Out and now
has also become a wonderful route for people to have
visual representation and identification to go, hey, I think that
looks like me. I haven't actually gone to the doctors yet.
I haven't had this access, but I'm going to take
(09:21):
these images of all of these people and say, I
think I have this thing.
Speaker 3 (09:24):
What do you think, doctor? So I think yes.
Speaker 2 (09:26):
Step one if you can is get an accurate diagnosis
of what you are living with, so then you can
feel informed and have choices about how you live your life.
Speaker 1 (09:36):
I'm so glad that you brought up social media because
community is such an important thing for people that deal
with any chronic condition, but especially something that shows up
on your skin like psoriasis, feels very isolating and sometimes
people feel like they need to hide and that there
isn't someone else to reach out to you. And this
is what brought you to the twenty twenty three campaign
(09:56):
Forget your Skin Out. There were no people hiding in
those pictures out there and showing off, So you really
took over in New York. Will you talk about that
a little bit?
Speaker 3 (10:06):
Yeah?
Speaker 2 (10:06):
Absolutely, I mean I think rewinding, you know, at fourteen
and then through that kind of doctor route, I never
met anybody with crisis. All I was shown in these
seven minute dermatology appointments were these stick figures where they'd
get out a pencil and you know kind of do
this frantic dotting and go does this look like you
with crisis?
Speaker 3 (10:25):
So I think for me.
Speaker 2 (10:26):
Get Your Skin Out was born out of a need,
a need to create, a need to meet people who
understood my lived experience and could really relate to me
When I said, isn't it a pain in the ass
when you shave your legs covered with crisis and then
it's a bloody massacre? Or you know, how do you
feel about being intimate with crisis or vitiligo at acne.
(10:46):
So I think social media at that time, which was
ten years ago now when I started Get Your Skin
Out and now has been instrumental to people living with
visible skin conditions to feel connected, to really move what
feel very isolating and as I said, have that visual
representation and identification where people can see themselves. And so
(11:07):
New York last year for World Crisis Day, I used
Get your Skin Out and really cast community members and
I said, I have this wonderful opportunity to put us
in the middle of New York and I'm talking from
you know, Times Square, in the middle of the theaters, all
the way to Prospect Park to Brooklyn to Chelsea. We
were everywhere, and I did a month long activation where
(11:30):
we took over these digital screens and I think having
us as a community, very proud, very present, owning our
bodies with our conditions, which that year was just psiasis
was very meaningful to people to know that they had
a place that they could feel seen and that we
could belong. Really and having it prominent in New York
(11:51):
was life changing, It really was.
Speaker 1 (11:53):
That is such a huge activation that I am sure
that it brought a lot of new people to your community.
And I'm wondering if you were surprised by one the
reaction and the rush to this great community, but two,
I suspect that people who are being seen for the
(12:14):
first time by someone that they know understands what they're
living with, are very capable of opening up in a
way they maybe have it before. What has that been
like for you, and how candid do people get with
you about their personal lives.
Speaker 2 (12:27):
Hearing from the community directly, be that a message through
get your Skin out, or you know, sharing their images
to be used in an activation like New York last
year is something that I find constantly very moving and
deeply touching.
Speaker 3 (12:41):
And I think what.
Speaker 2 (12:43):
That really has shone a light on is that because
of this community connection and space to exist unapologetically. This
isn't about being fixed, this isn't about here's what you
need to do. It's just holding space. Really, That's what
Get Your Skin Out is has allowed people to be
really open and vulnerable with me. And that over the
(13:04):
years has really been this archive and catalog, if you will,
of people's stories and they can be anecdotal of going
to the shop and something happening, or just that they
know that they have something like Get your Skin Out
as a resource that they can go, wow, I'm not alone.
Speaker 3 (13:20):
And so to answer your question, it is profound.
Speaker 2 (13:23):
How much people share and it always shocks me that
they trust me with that. So I think you know
that trust is something that is always there, and I
work to really foster and grow.
Speaker 1 (13:35):
I'm going to shift a little bit here because you
mentioned earlier this is of course an ongoing thing. It's
part of your day to day life. What are your
flare ups like, how are you dealing with it on
a daily basis, What is your kind of day to
day ethos like about it?
Speaker 2 (13:50):
I think over twenty years that has changed, I think,
and that is not a fault of my own. I
think it's our access point when we are diagnosed first
and foremost, as we say, do you know, it's very
much a visual looking aesthetically at your skin. So the journey,
initially for me anyways, started as how do I do
things so my skin is not flaring and my crisis
is not showing. But over this twenty year period of
(14:13):
living with crisis, I think that has moved into viewing
myself and my body as more holistically. So now actually
I don't measure myself or where I am by how
my crisis looks on my skin. I measure it by
where am I mentally, how am I feeling? And I
think for me that took a long long time to
(14:34):
really bring in the mental health aspect and an emotional first,
which for a very rigid producer who lives their life
and excel was a hard journey. So to apply that
to my skin condition. And so what that really means
now is making sure that I'm living a balance life
and for me that means exercising every day. It does
mean avoiding food groups that you know are triggers. I
(14:55):
think that's a word that we use in the community.
So yes, I love carbohydrate, and I love pasta and
bread and all the good things, but you know, they
actually really don't agree with my body. And for me,
it's making a wider connection in my body beyond my skin.
It's going how does my gut feel? How does my
brain feel? Do I have brain fog? Do I feel
(15:15):
really sluggish? And so again, removing it just from kind
of topically what's on the skin to this kind of
full body picture is what has allowed me to live
well with psoriasis. And that is a learning every day
and I mess up all the time, but you know,
I have to be really kind to myself and feel
balanced and know that it's a journey.
Speaker 1 (15:37):
Holly, I want to thank you so much for sharing
your story with us, and when we come back, I'm
going to share some history with you. So hold tight
because after this break, Ben Franklin and Lizzie Siddel, you
may be surprised with how much they share with modern
psoriasis patience so more. In just a minute, welcome back
(16:10):
to our Skin. Today, we are going to delve into
a topic that might make you want to scratch an
itch just thinking about it. It's something that is one
of the most uncomfortable and common symptoms for people who
have chronic conditions that affect the skin, like psoriasis, And
that is right. We're going to talk about itchiness a
little bit. We have discussed a lot already on the
(16:31):
show how visible symptoms can take a real toll on
people's mental health, but there are also unseen symptoms like
itch that really affect people's quality of life as well
as their mental health too. So first we're going to
talk about what itching even is. Is it a physical sensation,
is it something more psychological? Sometimes it seems like itching
(16:53):
is in itself contagious in its own way, like yawning.
If you see someone itching, you will suddenly have an itch.
Happens to me all the time. And there's actually a
lot of really cool research on these things that we'll
get into. And we're also going to peek into the
private writings of two historical figures who likely had psoriasis.
(17:13):
Benjamin Franklin I think we all know that guy right,
good and bad. And Elizabeth Siddell. She was the Victorian
era's biggest supermodel before that term even existed. Today we
share stuff all the time on social media, but of
course in the past people had to put their thoughts
and their day to day inklings down in a journal.
So we're going to consider this like a dip into
(17:35):
Ben and Lizz's Instagram feeds history style. So first we're
going to talk about what itch is. There is a
technical term which is protis. That is a medical term
that describes a chronic, irritating sensation on the skin that
makes you want to scratch, and that can be localized
to one area or it can spread throughout the body.
I know I have definitely had itches that are just
(17:56):
intense and felt painful, and in fact it have a
lot of physiological similarities to pain response. So sensations for
itching and pain are both carried over unmilinated nerve fibers.
That is the type of nerve fiber that transmits signals
from our extremities to the central nervous system, and those
nerve fibers originate in the skin and they bring those
(18:18):
signals to the brain. So both pain and itch are
similar usually unpleasant sensory experiences, but their behavior response patterns
are different. Pain creates a withdrawal reflex, whereas itches lead
to you guessed it, a scratch reflex. Clinically, itching is
basically treated as a very mild form of pain. Its
(18:40):
severity is only accessible through patient self reporting, and like
chronic pain, chronic itching can be very easily dismissed by others,
including medical professionals, because listen, it's complicated. There are, of
course physical reasons for an itch, but a two thousand
and eight review of studies of itch also revealed that
their psychological origins of some itches. Even seeing a picture
(19:03):
of itchy things like bugs produces a scratch response in
some study participants. Do you find yourself noting that you
have an itch response when you see like something that
just looks scratchy on TV? Mine is always if I
watch a home improvement show and I see the sandpaper,
I just want to I want to scratch my entire body.
Speaker 2 (19:24):
Oh yeah, absolutely, I'm sitting here going yeah, what about
that one thing that always makes me itch?
Speaker 3 (19:29):
Absolutely? I mean I really relate to that.
Speaker 2 (19:32):
In terms of having this physical response that you just
want to go, oh and scratch everywhere and kind of
attack the source. But I really relate, you know, even
though mine on a day to day is an itchy,
I think when it has been actually, particularly if I
have a neck flare of my crisis.
Speaker 3 (19:48):
It is insatiable.
Speaker 1 (19:49):
I mean, I know, even sitting here talking about it,
I'm like, does my ear itches? I think also of
my head itches? And I think does my hipitch? Is
that going on? I was thinking about recording this show
last night as I fell asleep, and I was like,
my side itch is like everything that I thought about.
I would be like, oh, yes, that is also itchy.
What's really interesting in all of this is that we
(20:10):
really tend to underestimate how serious itch can be, right
because chronic itch also has associations with increased stress, anxiety,
other mood disorders, and stress and anxiety can exacerbate an itch.
And if there's a condition that causes it, like having
a psoriasis flare up at a stressful time, then you
(20:30):
are in the vicious cycle where you have wanted to
scratch and you have given into that impulse, and then
it can actually damage your skin and create a longer
cycle of healing, and then you just itch more. It's
the cruelest impulse we maybe have as humans. The other
thing that is interesting is that it's a non visible
(20:51):
symptom unless it shows up in daily life by scratching
it right, somebody can't look at you and say, I
bet they're itchy. You're doing some some thing physically that
shows that, And it has been the object of medical
and scientific curiosity literally centuries. People have been trying to
figure it out. But it is only more recent that
medical research has taken itch actually seriously as a symptom. So,
(21:14):
as I'm sure you can imagine, it's hard to design
a study that measures a subjective symptom. Yeah, what is that, right?
My itch is different than your itch. So because it's
self reported, it's always really hard to draw any conclusions
about any historical understanding and retroactively apply what we learn
about itch from anecdotal evidence. Because what somebody wrote about
(21:36):
what they felt, we don't have a way to measure
that in an objective controlled way. But thankfully, since the
establishment of dermatology as an independent discipline of medicine that
happened not until the middle of the nineteenth century, itch
has gotten a lot more attention as a subject of
rigorous scientific investigation. And as we've seen with psoriasis and
other skin conditions, generally, right back in the day, when
(22:00):
people even reported, oh, I haven't itch, it was often
perceived as them having a moral lapse, a lack of hygiene,
social issues, impulse control issues. It was always seen as
the patient's fault. So I want to know what you
have seen in your own activism and in the modern
(22:22):
day where those kind of problems still persist, because they
do absolutely.
Speaker 2 (22:27):
I mean, I think viewing something like psoriasis or any
other skin condition that visually appears on your skin, I
think the first thing that people come to is this
idea of disgust and shame and therefore that it is
your fault that you just said, Holly, right, So taking
that step further to go why is this happening? Why
is this a body response to actually scratch your skin?
(22:50):
Is something that people struggle with every single day. Being
able to say, am I stressed because I haven't slept
because I've been itching all night?
Speaker 3 (22:59):
Is that the cycle? Or you know what is it?
Speaker 2 (23:02):
And getting Clarency on that I really encourage people to
do so that people can take these symptoms like the
itch seriously.
Speaker 1 (23:08):
I think too, there's an interesting side benefit of that too, right,
where if people are reporting accurately and openly to their
medical professional about itch, that's giving us more information so
we can develop a better database of understanding so that
in another eighty years people will be like, can you
believe in the early twenty twenties people were only just
(23:30):
then starting to report itch and that's where we got
our data from. So it's important you're helping the cause
if you are open and honest about it. I mean,
there's also that thing right where. I mean, even today,
if you are in a public place, like you are
on the train or the subway, or riding a bus
or whatever, even in a crowded restaurant and you start scratching,
(23:51):
people's initial tendency is to lean away or to step away,
so like we are still dealing with us. It gets
a lot of side eye in public, but it's also
really torturous sometimes not to scratch. And by the way,
as I said a little while ago, you might as
a listener feel a little itchy just listening to us
talk about itching. That's backed up by research. In twenty
(24:13):
twenty two, researchers in Saint Louis identified a pathway in
mice brains that is activated when one mouse sees another
mouse scratching. So this itchy feeling that you might be
having right now has a physical biological basis, just as
much as if you brushed off a leaf or a fly,
and that might result in you scratching at your arm.
(24:34):
So we said earlier, one of the challenges in researching
itch is that it's hard to standardize, right. How could
anybody tell if two people in their study both mean
the exact same thing when they talk about itching, even
if they describe it in almost the exact same way.
It's really hard, and self reporting is currently the main
way that most people communicate about this symptom. That has
(24:56):
not changed over the hundreds of years we've been trying
to learn more. So, so one way to get at
what itch felt like way back when is to look
at some primary sources. And this is where we are
going to talk about good old Ben Franklin, because yes,
it is very likely that he had psoriasis. He wrote
about something that he called the scurf, although he varied
(25:16):
in writing about it. It wasn't consistent. Sometimes he would
write it with one f, sometimes with two. And it's
very clear that he really went through it when the
scurf reared its ugly head. So this is a quote
from October seventeenth of seventeen seventy seven. And this is
actually interesting because it's written in the third person, because
he was writing this to give to a friend who
(25:37):
was taking it to London to get an expert opinion
about treatment. So he wrote quote, in November seventeen seventy six,
he made a long sea voyage in which the disorder
sensibly increased part of each arm and of each side,
the small of his back, and parts of his thighs
and legs became covered with the scurf, which became very troublesome,
(25:59):
itching sometimes extremely so to contextualize when this is going on,
this is October of seventeen seventy seven, some big stuff
going on in Ben Franklin's life at that tasting right,
So we're talking about the Revolutionary War, which was in
its second year. It's interesting because obviously that would have
been stressful, which can be its own trigger. But also
(26:21):
how much must it have been bothering Ben Franklin for
him to stop and be like, I got to get
medical advice about this whole situation.
Speaker 3 (26:29):
I love that, But you know, I'm sure people really
relate to.
Speaker 2 (26:32):
Them, because, as we've discussed on the show, it is
a part of everyday life. So Ben Franklin Wool and
everything that he did, you know, freeing America. But you
know you still have bloody cis or the scuff, which
I just I think we should bring that back. I
think we should decide on one f or two.
Speaker 3 (26:48):
And bring it back.
Speaker 1 (26:49):
I like it with too.
Speaker 3 (26:50):
I don't know why. Yeah. Same.
Speaker 1 (26:51):
So in seventeen seventy seven when he did this, he
was serving on a commission to France charged with, you know,
getting French financial support or for American independence. He was
in the middle of very important stuff. But what is
great and I think is a good model for behavior,
is that he felt very comfortable recounting his symptoms very candidly.
(27:11):
He didn't hold back. He talked about everywhere it was. So,
you know, we have been talking him a lot about
people feeling judged or otherwise misunderstood and how that can
lead to avoidance of medical treatment. Do you still see
that today? I know you want people to see past that,
and you've talked about this being an important initial step,
But I feel like there are probably people that are
(27:33):
out there that know something's going on with their skin,
but they're also really scared to have open conversations with
doctors or other medical professionals. Do you encounter that in
any of your activism. Yeah.
Speaker 3 (27:46):
Absolutely.
Speaker 2 (27:46):
I mean, first, I think we should just say for
the show, Ben Franklin was an original get your Skin
Out person, which I just saw that. Let's just have
that as a statement number one. But I think ull
jexu aside. Yes, when people here get your Skin Out
or come to it, I think they get really thrown off.
And this is some of the feedback that I've had,
which is I don't want to get my skin out.
Speaker 3 (28:08):
I'm not ready.
Speaker 2 (28:09):
That is okay, But I think it's about knowing that
if you ever do come to that or you need it,
that you have choice. And I think sometimes the medical
system really makes us feel that we don't have that
choice because that's the only route in to really get
something that is solidified and medical diagnosis.
Speaker 1 (28:26):
Right.
Speaker 2 (28:26):
But through community support like get your Skin Out or
many other people that are sharing, you can still feel connected,
you can still feel informed, you can still have information.
Generating something like get your Skin Out and many kind
of community avenues is really about saying there are many options,
and we see you and you can be held.
Speaker 1 (28:46):
I want to jump back into some interesting studies that
have been done. And then I really want to talk
about Elizabeth Siddel because she's quite fascinating. Yes, there has
been debate in medical literature about whether psychiatric factors are
act actually the cause or the consequence of chronic itchiness.
The latter explanation seems to be gaining actually a little
bit of traction in medical literature. There was a recent,
(29:09):
though pretty small study that suggested that half of the
patients that deal with chronic itchiness had at least some
psychological fallout. Most commonly they also had anxiety. And back
in the eighteen hundreds, when our next historical figure lived,
there was so little knowledge about skin disorders and treatments
were so rudimentary that patients added emotional distress was not
(29:30):
even considered at all. It just was not part of
the equation. So treating psychological symptoms was not even a thought.
And Elizabeth Siddel had some mental health issues unfortunately, that
are tied to all of this. So Elizabeth Siddel is
this really, as I said, fascinating creature. She was an
English artist, a poet. She was a model associated with
(29:51):
the pre Raphaelite brotherhood. If you have ever seen that
painting of Ophelia lying in a stream by John Everett Malay.
She is the mod for it. Oh, no way she is.
He floated her in a bathtub so that he could
observe her with that watery effect and paint from that.
That water was, allegedly though, so cold that she later
sued him to get him to pay her medical bills
(30:13):
because she got pneumonia from sitting for him. Elizabeth is
also believed to have had a chronic health condition that
resembled psoriasis, and one of her comorbidities was definitely mental
health issues. Her poetry wasn't published in her lifetime, but
it is full of references to depression and anxiety and
troubled thoughts. And she passed away at just the age
(30:36):
of thirty two in eighteen sixty two from a misuse
of laudanum, which was, for anybody that doesn't know, a
powerful and very addictive mixture of alcohol and morphine. And
when she died, she also had arsenic in her system
that was very likely part of a treatment for her
skin disorder, so a diluted solution of arsenic was often
(30:57):
applied topically to plaques when people present with them. If
arsenic on her skin sounds bananas to you. Here's the thing. Remember,
she was trying to be and she really was the
supermodel of the Victorian era, and their beauty standards were
just as strict as ours, which is very relatable. She
was under a lot of pressure. And then, to top
(31:19):
it off, in the eighteenth and nineteenth centuries, the medical
understanding of skin conditions was very rudimentary. Things like psoriasis
were often misunderstood, they were just as often misdiagnosed. This
led to a variety of treatments that ranged from ineffective
to flat out dangerous. We just talked about arsenic. Ben
Franklin and Elizabeth Siddall's experiences provide insight into the challenges
(31:42):
that were faced by individuals with chronic skin conditions during
these periods. And we've seen through these experiences that chronic
skin conditions have been part of humanity forever, affecting both
physical and mental health, even if people were not cognizant
that those two things were so tightly tied together at
the time. The historical accounts really give us a deeper
understanding of all of these struggles. The same things, Holly,
(32:05):
that you have been educating people about and helping them
with have been problems for a long time. Perhaps they
would have benefited from a hashtag get the scurf out campaign.
Speaker 3 (32:14):
Let's get it trending, let's do it.
Speaker 1 (32:18):
You do so much, Holly, to destigmatize psoriasis, And as
we just saw, that has been a work in progress
for a really long time. People have been trying to
figure this out for hundreds of years. What do you think,
knowing all that you know and having been through all
of this activism, what do you think is the biggest
step that we as a global community could take to
(32:40):
help people who may be diagnosed now or in the
future with that effort of destigmatization.
Speaker 2 (32:46):
Ooh, the million dollar question, Holly, right, we all need
all tomorrow exactly. You know, I think it really is simple.
I think it's educating yourself and doing it through communication.
So you ask me, you know, do people come up
and ask me questions all the time? Yes, and by
way of communicating with them, which is really relatable. It's
(33:08):
not bringing in stats and facts or any kind of science,
but it's saying this is me, I am, Holly, I
live with crisis. This is actually what it is. No,
you can't catch it? Did you know this about it?
And really kind of leaning in and inviting people in,
I do think is the best way. The more that
people know and understand what something like crisis is or
(33:29):
other visible skin conditions, the better off we all are,
because with some of the research that you've shared, you
know this isn't a far fetched thing.
Speaker 3 (33:38):
This is very common.
Speaker 2 (33:40):
You know, if you don't have a skin condition, you
will know someone with one in your immediate circle. So
I have seen the amazing domino effect of just by
me having those conversations or people who are around me
watching me have those conversations and educate people how far
that has gone. And so I think it's about educating
(34:01):
yourself on what visible skin conditions are really about and
how it can affect people's lives with them.
Speaker 1 (34:06):
I'm glad that you brought up that sort of secondary
group of people who know someone who's dealing with a
skin condition, and in addition to getting as much knowledge
as they can, what do you think is the best
advice or suggestion you can give them about just helping
the person in their life that has a skin condition
on their day to day.
Speaker 2 (34:26):
I think ask with a question if the person that
you know is comfortable letting you in saying how does
living with zoriasis affect your everyday life? Is there something
that I don't know? Is there something that you need?
And I think it's really important. Like with anything, we
can't assume that just because you know that you live
with the skin condition, you know what you need. Understanding
(34:48):
what you need and communicating that is a lifelong journey
in any area of our lives, because when you do
live with a skin condition and your every day let
alone kind of the wider public are a part of
it can feel really isolating. So as a support system,
as kind of chosen people is saying I'm here and
I'm willing to learn.
Speaker 1 (35:08):
Holly, you are clearly a powerhouse of a human and
your story is very powerful. If you could send one
message to listeners who might be kind of grappling with
their own diagnosis, what would that.
Speaker 2 (35:19):
Be, ask for help? I would not be where I
am without asking for help. Get your skin out? Was
asking for help? Connecting with people like you, Holly is
asking for help. It is a journey that creates pathways
and it helps this access to information.
Speaker 3 (35:34):
It's wonderful. So asking for help, I love it, Holly.
Speaker 1 (35:38):
You are an absolute delight.
Speaker 3 (35:39):
So are you, Holly. Thank you for giving me my
history lesson.
Speaker 1 (35:43):
I love it, I'm here for it. Thank you so
much for joining me today. I feel so lucky to
have spent this time with you. Likewise, thank you. Our
Skin is hosted by myself, Holly fry An, executive produced
and engineered by Ryan Martz. Our senior producer and writer
is Meredith Barnes. If you enjoy the show, share it
(36:05):
with your friends. You can also listen and follow on
the iHeartRadio app, Apple Podcasts, or wherever you get your
podcasts
Welcome to Our Skin, a personal discovery podcast. I'm your host,
Holly Fry, and it is wonderful to have you here
with us. Connection is what this show is all about,
specifically connecting about things that we are sometimes afraid to
talk about. Today, we're going to be exploring the ups
and downs, past and present, personal and universal troubles we
(00:22):
have with our skin. Our skin is our most visible organ.
What happens on our skin affects the rest of our lives,
especially when dealing with a chronic condition. Getting diagnosed with
one of these, like psoriasis, can be overwhelming, but you're
not alone. Each episode features a personal story of resilience
and grace, but our personal stories are threads in a
(00:45):
larger tapestry, and there are lessons for us in the
history of how we treat our skin and the progress
we've made together. Caring for our skin is caring for ourselves.
Whether you're seeking inspiration for your own journey or curious
about the history of our skin, you'll find empathetic, transformative
conversations here on Our Skin. Our guest today is Holly Dylan.
(01:10):
She is an executive producer with a rich background in
both Hollywood and activism, and she knows how unforgiving the
industry can be for people with visible skin conditions. She
was diagnosed with siriasis at just fourteen years old, and
at twenty she was told by a dermatologist that there
were no treatments available to her, which would of course
(01:31):
be devastating as her symptoms were really debilitating, and of
course siriasis is a lifelong condition, so Holly set out
to find answers and community on her own terms. For years,
Dylan chronicled her experiences on social media by using the
hashtag get your Skin Out, with the hope of connecting
with others facing similar conditions. Now Get your Skin Out
(01:54):
has grown into a campaign and a support network, followed
by thousands that share photos and tis and uplifting communication
about things like sariasis, viteligo, stretch marks, hyper pigmentation, and scars.
Holly emphasizes the person behind the condition. When we step
back into the history of skin today, we're gonna try
(02:15):
to get to the heart of what two particular people
went through in their times. The writings of Benjamin Franklin
and Victorian painter, poet and model Elizabeth Siddel will show
us that Siasi's stories have an awful lot in common,
even from the distance of hundreds of years. What we
have in common builds community, and that is what is
important to Holly. She has a superpower for creating impactful
(02:39):
stories that drive action and change. Holly, Welcome to our skin.
I am so glad you are here with us today.
Speaker 2 (02:46):
Oh my god, thank you so much for having me
Holley on Honor to speak to you. And I'm so
excited to get the history behind this. It is something
that I am yet to dive into. So let's do
it today.
Speaker 1 (02:58):
We'll brace for impact. So I want to ask you
some questions. I want to know how this all started.
Because you were very very young when your soriasis symptoms emerged.
What did you first notice changing on your skin? And
at an age where everyone is already a little self conscious.
Speaker 2 (03:16):
So I was first diagnosed with crisis and it was
actually located on the bottom of my chin. And you know,
I was fourteen at the time, so very much in
the throes of puberty. And if I'm honest, at that point,
myself or my family, or my kind of wider network
weren't really familiar with crisis. So as a self diagnosis.
We thought this was just a part of everybody's teenage
(03:38):
journey and I had a spot on the end of
my chin, but over a period of time, you know,
visually and physically, it felt very different, which is actually
what led me to go to my GP in the UK,
in London, and that is formally where I first got
my accurate diagnosis of crisis, and particularly gutt eight. Crisis,
(03:58):
which you know, twenty years on is something that I
still live with and sitting here today and speaking to you, Holly,
is all over my body, from my face, my ears,
my genitals, my back, my legs, you name it. I
am truly covered in crisis.
Speaker 1 (04:12):
Psiasis presents with a lot of different symptoms, and one
that a lot of people experience is itching, but that
is not everyone's experience, right.
Speaker 3 (04:21):
I'm glad you brought that up.
Speaker 2 (04:22):
I think the common symptom that people think that we
live with is itchy, flaky, dry skin. But for me,
for example, my skin doesn't actually itch that much, which
if you were to look at me, might sound absolutely crazy,
but for me, mine actually leads more on the dry
side and the flaky side, but it does not present
as an itch. But I know for many people that
(04:42):
I do speak to through Get your Skin Out, that
itchiness is absolutely a common factor. And you know, I
think really needs to be linked to the kind of
mental and physical aspect of living with autoimmune and skin
condition likesorisis that having that constant chronic itch and pain
and dryness is something that people really struggle with, and
You're right, is not acknowledged enough for people's everyday lived experience.
Speaker 1 (05:07):
I'm really glad that you moved into this space of
lived experience because I know for a lot of people,
soiasis kind of keeps them from living. They don't get
out there and do it. And I think people that
don't live with a chronic skin condition probably aren't really
cognizant of just how debilitating soriasis symptoms can be. They're like, oh,
(05:27):
you're itchy, I've got itches before, but that.
Speaker 3 (05:30):
Is not it.
Speaker 1 (05:31):
Can you talk a little bit about that disconnect between
people that live with these conditions and people that do not.
Speaker 2 (05:38):
I think you said it right there that the everyday,
normal lived experience that somebody who is not living with
a skin condition has no context for us that do.
Speaker 3 (05:45):
And that isn't to pit each other against each other.
Speaker 2 (05:47):
It's actually to invite people in for sympathy and understanding
where we're coming from. So for example, an everyday task
like going to get your food shop. Maybe you're a swimmer,
I swim every day, facts size and my kind of
mental health, just wearing maybe a short sleeve top in
the summer or a pair of shorts. You know, these
things that I think on an everyday normal person might
(06:09):
not actually think is going to be a huge step,
but for someone living with a visible skin condition like
me with psoriasis, it is, and it can feel very
debilitating because what happens when you take those steps in
these normal, everyday routines is you are subject to people's perception,
and that perception is often negative. It is often coming
(06:30):
with a lot of shame, and you know, for us
living with it, that can feel like we don't have
a place, and that, unfortunately is the kind of wider
societal impact in and around what we should look like,
what our bodies should be that has really kind of
we've heard this and other kind of body positive movements,
but is absolutely a part of our every day living
(06:50):
with a visible skin condition as well.
Speaker 1 (06:53):
Now, I love that you invite people to get in
the conversation and ask questions and learn. But I wonder
if you've ever had someone who pushes back and minimizes
when you try to explain what's going on.
Speaker 2 (07:06):
Oh absolutely, I mean I think, as I mentioned, I
swim every day, so I kind of always have this
ready to be braced fight or flight response where I
know someone is either going to come up to me
and ask an unsolicited question or I'm going to get
the megastare down from you know, everybody that's already swimming.
The position that I have taken, and this is very
much echoed in the person that who I am and
(07:27):
through the campaign is really taking an educator active response
to educate people and invite them in and instead of
meeting them with I guess, aggression or mass frustration, which
although I feel it, I contain, I contain myself.
Speaker 3 (07:44):
I take a deep breath.
Speaker 2 (07:45):
So yes, there's pushback, but for me, I try and
meet it with accurate information, educational as a response and
hoping that that person would leave with a more informed
understanding view of a skin condition like sir, and in
the meantime reshape or repivot their perceptions of what actually
living with a skin condition is like.
Speaker 1 (08:08):
I want to talk a little bit more about the
early days of your diagnosis, because here you are as
an adolescent with this thing that you know is not
just a pimple or something going on. Did it help
once you actually had a doctor's diagnosis to contextualize what
was going on? Like, did that help you as a
fourteen year old or was it all just this sucks?
(08:28):
There's no way around.
Speaker 2 (08:29):
It getting a diagnosis at fourteen. I think whilst I
couldn't really register the wider impact that living with a
chronic condition would have on my life, I think the
first step always is understanding actually what the hell it is?
So do you actually have a qualified doctor be able
to distinguish and say this isn't just you know, pubescent acne,
this is actually prisis in my case, really allowed me
(08:53):
to have an informed journey of how.
Speaker 3 (08:57):
I could live with a skin condition.
Speaker 2 (08:58):
So it's very important to get your diagnosis if you
have access to that healthcare system. But you know, social
media when I started Get your Skin Out and now
has also become a wonderful route for people to have
visual representation and identification to go, hey, I think that
looks like me. I haven't actually gone to the doctors yet.
I haven't had this access, but I'm going to take
(09:21):
these images of all of these people and say, I
think I have this thing.
Speaker 3 (09:24):
What do you think, doctor? So I think yes.
Speaker 2 (09:26):
Step one if you can is get an accurate diagnosis
of what you are living with, so then you can
feel informed and have choices about how you live your life.
Speaker 1 (09:36):
I'm so glad that you brought up social media because
community is such an important thing for people that deal
with any chronic condition, but especially something that shows up
on your skin like psoriasis, feels very isolating and sometimes
people feel like they need to hide and that there
isn't someone else to reach out to you. And this
is what brought you to the twenty twenty three campaign
(09:56):
Forget your Skin Out. There were no people hiding in
those pictures out there and showing off, So you really
took over in New York. Will you talk about that
a little bit?
Speaker 3 (10:06):
Yeah?
Speaker 2 (10:06):
Absolutely, I mean I think rewinding, you know, at fourteen
and then through that kind of doctor route, I never
met anybody with crisis. All I was shown in these
seven minute dermatology appointments were these stick figures where they'd
get out a pencil and you know kind of do
this frantic dotting and go does this look like you
with crisis?
Speaker 3 (10:25):
So I think for me.
Speaker 2 (10:26):
Get Your Skin Out was born out of a need,
a need to create, a need to meet people who
understood my lived experience and could really relate to me
When I said, isn't it a pain in the ass
when you shave your legs covered with crisis and then
it's a bloody massacre? Or you know, how do you
feel about being intimate with crisis or vitiligo at acne.
(10:46):
So I think social media at that time, which was
ten years ago now when I started Get Your Skin
Out and now has been instrumental to people living with
visible skin conditions to feel connected, to really move what
feel very isolating and as I said, have that visual
representation and identification where people can see themselves. And so
(11:07):
New York last year for World Crisis Day, I used
Get your Skin Out and really cast community members and
I said, I have this wonderful opportunity to put us
in the middle of New York and I'm talking from
you know, Times Square, in the middle of the theaters, all
the way to Prospect Park to Brooklyn to Chelsea. We
were everywhere, and I did a month long activation where
(11:30):
we took over these digital screens and I think having
us as a community, very proud, very present, owning our
bodies with our conditions, which that year was just psiasis
was very meaningful to people to know that they had
a place that they could feel seen and that we
could belong. Really and having it prominent in New York
(11:51):
was life changing, It really was.
Speaker 1 (11:53):
That is such a huge activation that I am sure
that it brought a lot of new people to your community.
And I'm wondering if you were surprised by one the
reaction and the rush to this great community, but two,
I suspect that people who are being seen for the
(12:14):
first time by someone that they know understands what they're
living with, are very capable of opening up in a
way they maybe have it before. What has that been
like for you, and how candid do people get with
you about their personal lives.
Speaker 2 (12:27):
Hearing from the community directly, be that a message through
get your Skin out, or you know, sharing their images
to be used in an activation like New York last
year is something that I find constantly very moving and
deeply touching.
Speaker 3 (12:41):
And I think what.
Speaker 2 (12:43):
That really has shone a light on is that because
of this community connection and space to exist unapologetically. This
isn't about being fixed, this isn't about here's what you
need to do. It's just holding space. Really, That's what
Get Your Skin Out is has allowed people to be
really open and vulnerable with me. And that over the
(13:04):
years has really been this archive and catalog, if you will,
of people's stories and they can be anecdotal of going
to the shop and something happening, or just that they
know that they have something like Get your Skin Out
as a resource that they can go, wow, I'm not alone.
Speaker 3 (13:20):
And so to answer your question, it is profound.
Speaker 2 (13:23):
How much people share and it always shocks me that
they trust me with that. So I think you know
that trust is something that is always there, and I
work to really foster and grow.
Speaker 1 (13:35):
I'm going to shift a little bit here because you
mentioned earlier this is of course an ongoing thing. It's
part of your day to day life. What are your
flare ups like, how are you dealing with it on
a daily basis, What is your kind of day to
day ethos like about it?
Speaker 2 (13:50):
I think over twenty years that has changed, I think,
and that is not a fault of my own. I
think it's our access point when we are diagnosed first
and foremost, as we say, do you know, it's very
much a visual looking aesthetically at your skin. So the journey,
initially for me anyways, started as how do I do
things so my skin is not flaring and my crisis
is not showing. But over this twenty year period of
(14:13):
living with crisis, I think that has moved into viewing
myself and my body as more holistically. So now actually
I don't measure myself or where I am by how
my crisis looks on my skin. I measure it by
where am I mentally, how am I feeling? And I
think for me that took a long long time to
(14:34):
really bring in the mental health aspect and an emotional first,
which for a very rigid producer who lives their life
and excel was a hard journey. So to apply that
to my skin condition. And so what that really means
now is making sure that I'm living a balance life
and for me that means exercising every day. It does
mean avoiding food groups that you know are triggers. I
(14:55):
think that's a word that we use in the community.
So yes, I love carbohydrate, and I love pasta and
bread and all the good things, but you know, they
actually really don't agree with my body. And for me,
it's making a wider connection in my body beyond my skin.
It's going how does my gut feel? How does my
brain feel? Do I have brain fog? Do I feel
(15:15):
really sluggish? And so again, removing it just from kind
of topically what's on the skin to this kind of
full body picture is what has allowed me to live
well with psoriasis. And that is a learning every day
and I mess up all the time, but you know,
I have to be really kind to myself and feel
balanced and know that it's a journey.
Speaker 1 (15:37):
Holly, I want to thank you so much for sharing
your story with us, and when we come back, I'm
going to share some history with you. So hold tight
because after this break, Ben Franklin and Lizzie Siddel, you
may be surprised with how much they share with modern
psoriasis patience so more. In just a minute, welcome back
(16:10):
to our Skin. Today, we are going to delve into
a topic that might make you want to scratch an
itch just thinking about it. It's something that is one
of the most uncomfortable and common symptoms for people who
have chronic conditions that affect the skin, like psoriasis, And
that is right. We're going to talk about itchiness a
little bit. We have discussed a lot already on the
(16:31):
show how visible symptoms can take a real toll on
people's mental health, but there are also unseen symptoms like
itch that really affect people's quality of life as well
as their mental health too. So first we're going to
talk about what itching even is. Is it a physical sensation,
is it something more psychological? Sometimes it seems like itching
(16:53):
is in itself contagious in its own way, like yawning.
If you see someone itching, you will suddenly have an itch.
Happens to me all the time. And there's actually a
lot of really cool research on these things that we'll
get into. And we're also going to peek into the
private writings of two historical figures who likely had psoriasis.
(17:13):
Benjamin Franklin I think we all know that guy right,
good and bad. And Elizabeth Siddell. She was the Victorian
era's biggest supermodel before that term even existed. Today we
share stuff all the time on social media, but of
course in the past people had to put their thoughts
and their day to day inklings down in a journal.
So we're going to consider this like a dip into
(17:35):
Ben and Lizz's Instagram feeds history style. So first we're
going to talk about what itch is. There is a
technical term which is protis. That is a medical term
that describes a chronic, irritating sensation on the skin that
makes you want to scratch, and that can be localized
to one area or it can spread throughout the body.
I know I have definitely had itches that are just
(17:56):
intense and felt painful, and in fact it have a
lot of physiological similarities to pain response. So sensations for
itching and pain are both carried over unmilinated nerve fibers.
That is the type of nerve fiber that transmits signals
from our extremities to the central nervous system, and those
nerve fibers originate in the skin and they bring those
(18:18):
signals to the brain. So both pain and itch are
similar usually unpleasant sensory experiences, but their behavior response patterns
are different. Pain creates a withdrawal reflex, whereas itches lead
to you guessed it, a scratch reflex. Clinically, itching is
basically treated as a very mild form of pain. Its
(18:40):
severity is only accessible through patient self reporting, and like
chronic pain, chronic itching can be very easily dismissed by others,
including medical professionals, because listen, it's complicated. There are, of
course physical reasons for an itch, but a two thousand
and eight review of studies of itch also revealed that
their psychological origins of some itches. Even seeing a picture
(19:03):
of itchy things like bugs produces a scratch response in
some study participants. Do you find yourself noting that you
have an itch response when you see like something that
just looks scratchy on TV? Mine is always if I
watch a home improvement show and I see the sandpaper,
I just want to I want to scratch my entire body.
Speaker 2 (19:24):
Oh yeah, absolutely, I'm sitting here going yeah, what about
that one thing that always makes me itch?
Speaker 3 (19:29):
Absolutely? I mean I really relate to that.
Speaker 2 (19:32):
In terms of having this physical response that you just
want to go, oh and scratch everywhere and kind of
attack the source. But I really relate, you know, even
though mine on a day to day is an itchy,
I think when it has been actually, particularly if I
have a neck flare of my crisis.
Speaker 3 (19:48):
It is insatiable.
Speaker 1 (19:49):
I mean, I know, even sitting here talking about it,
I'm like, does my ear itches? I think also of
my head itches? And I think does my hipitch? Is
that going on? I was thinking about recording this show
last night as I fell asleep, and I was like,
my side itch is like everything that I thought about.
I would be like, oh, yes, that is also itchy.
What's really interesting in all of this is that we
(20:10):
really tend to underestimate how serious itch can be, right
because chronic itch also has associations with increased stress, anxiety,
other mood disorders, and stress and anxiety can exacerbate an itch.
And if there's a condition that causes it, like having
a psoriasis flare up at a stressful time, then you
(20:30):
are in the vicious cycle where you have wanted to
scratch and you have given into that impulse, and then
it can actually damage your skin and create a longer
cycle of healing, and then you just itch more. It's
the cruelest impulse we maybe have as humans. The other
thing that is interesting is that it's a non visible
(20:51):
symptom unless it shows up in daily life by scratching
it right, somebody can't look at you and say, I
bet they're itchy. You're doing some some thing physically that
shows that, And it has been the object of medical
and scientific curiosity literally centuries. People have been trying to
figure it out. But it is only more recent that
medical research has taken itch actually seriously as a symptom. So,
(21:14):
as I'm sure you can imagine, it's hard to design
a study that measures a subjective symptom. Yeah, what is that, right?
My itch is different than your itch. So because it's
self reported, it's always really hard to draw any conclusions
about any historical understanding and retroactively apply what we learn
about itch from anecdotal evidence. Because what somebody wrote about
(21:36):
what they felt, we don't have a way to measure
that in an objective controlled way. But thankfully, since the
establishment of dermatology as an independent discipline of medicine that
happened not until the middle of the nineteenth century, itch
has gotten a lot more attention as a subject of
rigorous scientific investigation. And as we've seen with psoriasis and
other skin conditions, generally, right back in the day, when
(22:00):
people even reported, oh, I haven't itch, it was often
perceived as them having a moral lapse, a lack of hygiene,
social issues, impulse control issues. It was always seen as
the patient's fault. So I want to know what you
have seen in your own activism and in the modern
(22:22):
day where those kind of problems still persist, because they
do absolutely.
Speaker 2 (22:27):
I mean, I think viewing something like psoriasis or any
other skin condition that visually appears on your skin, I
think the first thing that people come to is this
idea of disgust and shame and therefore that it is
your fault that you just said, Holly, right, So taking
that step further to go why is this happening? Why
is this a body response to actually scratch your skin?
(22:50):
Is something that people struggle with every single day. Being
able to say, am I stressed because I haven't slept
because I've been itching all night?
Speaker 3 (22:59):
Is that the cycle? Or you know what is it?
Speaker 2 (23:02):
And getting Clarency on that I really encourage people to
do so that people can take these symptoms like the
itch seriously.
Speaker 1 (23:08):
I think too, there's an interesting side benefit of that too, right,
where if people are reporting accurately and openly to their
medical professional about itch, that's giving us more information so
we can develop a better database of understanding so that
in another eighty years people will be like, can you
believe in the early twenty twenties people were only just
(23:30):
then starting to report itch and that's where we got
our data from. So it's important you're helping the cause
if you are open and honest about it. I mean,
there's also that thing right where. I mean, even today,
if you are in a public place, like you are
on the train or the subway, or riding a bus
or whatever, even in a crowded restaurant and you start scratching,
(23:51):
people's initial tendency is to lean away or to step away,
so like we are still dealing with us. It gets
a lot of side eye in public, but it's also
really torturous sometimes not to scratch. And by the way,
as I said a little while ago, you might as
a listener feel a little itchy just listening to us
talk about itching. That's backed up by research. In twenty
(24:13):
twenty two, researchers in Saint Louis identified a pathway in
mice brains that is activated when one mouse sees another
mouse scratching. So this itchy feeling that you might be
having right now has a physical biological basis, just as
much as if you brushed off a leaf or a fly,
and that might result in you scratching at your arm.
(24:34):
So we said earlier, one of the challenges in researching
itch is that it's hard to standardize, right. How could
anybody tell if two people in their study both mean
the exact same thing when they talk about itching, even
if they describe it in almost the exact same way.
It's really hard, and self reporting is currently the main
way that most people communicate about this symptom. That has
(24:56):
not changed over the hundreds of years we've been trying
to learn more. So, so one way to get at
what itch felt like way back when is to look
at some primary sources. And this is where we are
going to talk about good old Ben Franklin, because yes,
it is very likely that he had psoriasis. He wrote
about something that he called the scurf, although he varied
(25:16):
in writing about it. It wasn't consistent. Sometimes he would
write it with one f, sometimes with two. And it's
very clear that he really went through it when the
scurf reared its ugly head. So this is a quote
from October seventeenth of seventeen seventy seven. And this is
actually interesting because it's written in the third person, because
he was writing this to give to a friend who
(25:37):
was taking it to London to get an expert opinion
about treatment. So he wrote quote, in November seventeen seventy six,
he made a long sea voyage in which the disorder
sensibly increased part of each arm and of each side,
the small of his back, and parts of his thighs
and legs became covered with the scurf, which became very troublesome,
(25:59):
itching sometimes extremely so to contextualize when this is going on,
this is October of seventeen seventy seven, some big stuff
going on in Ben Franklin's life at that tasting right,
So we're talking about the Revolutionary War, which was in
its second year. It's interesting because obviously that would have
been stressful, which can be its own trigger. But also
(26:21):
how much must it have been bothering Ben Franklin for
him to stop and be like, I got to get
medical advice about this whole situation.
Speaker 3 (26:29):
I love that, But you know, I'm sure people really
relate to.
Speaker 2 (26:32):
Them, because, as we've discussed on the show, it is
a part of everyday life. So Ben Franklin Wool and
everything that he did, you know, freeing America. But you
know you still have bloody cis or the scuff, which
I just I think we should bring that back. I
think we should decide on one f or two.
Speaker 3 (26:48):
And bring it back.
Speaker 1 (26:49):
I like it with too.
Speaker 3 (26:50):
I don't know why. Yeah. Same.
Speaker 1 (26:51):
So in seventeen seventy seven when he did this, he
was serving on a commission to France charged with, you know,
getting French financial support or for American independence. He was
in the middle of very important stuff. But what is
great and I think is a good model for behavior,
is that he felt very comfortable recounting his symptoms very candidly.
(27:11):
He didn't hold back. He talked about everywhere it was. So,
you know, we have been talking him a lot about
people feeling judged or otherwise misunderstood and how that can
lead to avoidance of medical treatment. Do you still see
that today? I know you want people to see past that,
and you've talked about this being an important initial step,
But I feel like there are probably people that are
(27:33):
out there that know something's going on with their skin,
but they're also really scared to have open conversations with
doctors or other medical professionals. Do you encounter that in
any of your activism. Yeah.
Speaker 3 (27:46):
Absolutely.
Speaker 2 (27:46):
I mean, first, I think we should just say for
the show, Ben Franklin was an original get your Skin
Out person, which I just saw that. Let's just have
that as a statement number one. But I think ull
jexu aside. Yes, when people here get your Skin Out
or come to it, I think they get really thrown off.
And this is some of the feedback that I've had,
which is I don't want to get my skin out.
Speaker 3 (28:08):
I'm not ready.
Speaker 2 (28:09):
That is okay, But I think it's about knowing that
if you ever do come to that or you need it,
that you have choice. And I think sometimes the medical
system really makes us feel that we don't have that
choice because that's the only route in to really get
something that is solidified and medical diagnosis.
Speaker 1 (28:26):
Right.
Speaker 2 (28:26):
But through community support like get your Skin Out or
many other people that are sharing, you can still feel connected,
you can still feel informed, you can still have information.
Generating something like get your Skin Out and many kind
of community avenues is really about saying there are many options,
and we see you and you can be held.
Speaker 1 (28:46):
I want to jump back into some interesting studies that
have been done. And then I really want to talk
about Elizabeth Siddel because she's quite fascinating. Yes, there has
been debate in medical literature about whether psychiatric factors are
act actually the cause or the consequence of chronic itchiness.
The latter explanation seems to be gaining actually a little
bit of traction in medical literature. There was a recent,
(29:09):
though pretty small study that suggested that half of the
patients that deal with chronic itchiness had at least some
psychological fallout. Most commonly they also had anxiety. And back
in the eighteen hundreds, when our next historical figure lived,
there was so little knowledge about skin disorders and treatments
were so rudimentary that patients added emotional distress was not
(29:30):
even considered at all. It just was not part of
the equation. So treating psychological symptoms was not even a thought.
And Elizabeth Siddel had some mental health issues unfortunately, that
are tied to all of this. So Elizabeth Siddel is
this really, as I said, fascinating creature. She was an
English artist, a poet. She was a model associated with
(29:51):
the pre Raphaelite brotherhood. If you have ever seen that
painting of Ophelia lying in a stream by John Everett Malay.
She is the mod for it. Oh, no way she is.
He floated her in a bathtub so that he could
observe her with that watery effect and paint from that.
That water was, allegedly though, so cold that she later
sued him to get him to pay her medical bills
(30:13):
because she got pneumonia from sitting for him. Elizabeth is
also believed to have had a chronic health condition that
resembled psoriasis, and one of her comorbidities was definitely mental
health issues. Her poetry wasn't published in her lifetime, but
it is full of references to depression and anxiety and
troubled thoughts. And she passed away at just the age
(30:36):
of thirty two in eighteen sixty two from a misuse
of laudanum, which was, for anybody that doesn't know, a
powerful and very addictive mixture of alcohol and morphine. And
when she died, she also had arsenic in her system
that was very likely part of a treatment for her
skin disorder, so a diluted solution of arsenic was often
(30:57):
applied topically to plaques when people present with them. If
arsenic on her skin sounds bananas to you. Here's the thing. Remember,
she was trying to be and she really was the
supermodel of the Victorian era, and their beauty standards were
just as strict as ours, which is very relatable. She
was under a lot of pressure. And then, to top
(31:19):
it off, in the eighteenth and nineteenth centuries, the medical
understanding of skin conditions was very rudimentary. Things like psoriasis
were often misunderstood, they were just as often misdiagnosed. This
led to a variety of treatments that ranged from ineffective
to flat out dangerous. We just talked about arsenic. Ben
Franklin and Elizabeth Siddall's experiences provide insight into the challenges
(31:42):
that were faced by individuals with chronic skin conditions during
these periods. And we've seen through these experiences that chronic
skin conditions have been part of humanity forever, affecting both
physical and mental health, even if people were not cognizant
that those two things were so tightly tied together at
the time. The historical accounts really give us a deeper
understanding of all of these struggles. The same things, Holly,
(32:05):
that you have been educating people about and helping them
with have been problems for a long time. Perhaps they
would have benefited from a hashtag get the scurf out campaign.
Speaker 3 (32:14):
Let's get it trending, let's do it.
Speaker 1 (32:18):
You do so much, Holly, to destigmatize psoriasis, And as
we just saw, that has been a work in progress
for a really long time. People have been trying to
figure this out for hundreds of years. What do you think,
knowing all that you know and having been through all
of this activism, what do you think is the biggest
step that we as a global community could take to
(32:40):
help people who may be diagnosed now or in the
future with that effort of destigmatization.
Speaker 2 (32:46):
Ooh, the million dollar question, Holly, right, we all need
all tomorrow exactly. You know, I think it really is simple.
I think it's educating yourself and doing it through communication.
So you ask me, you know, do people come up
and ask me questions all the time? Yes, and by
way of communicating with them, which is really relatable. It's
(33:08):
not bringing in stats and facts or any kind of science,
but it's saying this is me, I am, Holly, I
live with crisis. This is actually what it is. No,
you can't catch it? Did you know this about it?
And really kind of leaning in and inviting people in,
I do think is the best way. The more that
people know and understand what something like crisis is or
(33:29):
other visible skin conditions, the better off we all are,
because with some of the research that you've shared, you
know this isn't a far fetched thing.
Speaker 3 (33:38):
This is very common.
Speaker 2 (33:40):
You know, if you don't have a skin condition, you
will know someone with one in your immediate circle. So
I have seen the amazing domino effect of just by
me having those conversations or people who are around me
watching me have those conversations and educate people how far
that has gone. And so I think it's about educating
(34:01):
yourself on what visible skin conditions are really about and
how it can affect people's lives with them.
Speaker 1 (34:06):
I'm glad that you brought up that sort of secondary
group of people who know someone who's dealing with a
skin condition, and in addition to getting as much knowledge
as they can, what do you think is the best
advice or suggestion you can give them about just helping
the person in their life that has a skin condition
on their day to day.
Speaker 2 (34:26):
I think ask with a question if the person that
you know is comfortable letting you in saying how does
living with zoriasis affect your everyday life? Is there something
that I don't know? Is there something that you need?
And I think it's really important. Like with anything, we
can't assume that just because you know that you live
with the skin condition, you know what you need. Understanding
(34:48):
what you need and communicating that is a lifelong journey
in any area of our lives, because when you do
live with a skin condition and your every day let
alone kind of the wider public are a part of
it can feel really isolating. So as a support system,
as kind of chosen people is saying I'm here and
I'm willing to learn.
Speaker 1 (35:08):
Holly, you are clearly a powerhouse of a human and
your story is very powerful. If you could send one
message to listeners who might be kind of grappling with
their own diagnosis, what would that.
Speaker 2 (35:19):
Be, ask for help? I would not be where I
am without asking for help. Get your skin out? Was
asking for help? Connecting with people like you, Holly is
asking for help. It is a journey that creates pathways
and it helps this access to information.
Speaker 3 (35:34):
It's wonderful. So asking for help, I love it, Holly.
Speaker 1 (35:38):
You are an absolute delight.
Speaker 3 (35:39):
So are you, Holly. Thank you for giving me my
history lesson.
Speaker 1 (35:43):
I love it, I'm here for it. Thank you so
much for joining me today. I feel so lucky to
have spent this time with you. Likewise, thank you. Our
Skin is hosted by myself, Holly fry An, executive produced
and engineered by Ryan Martz. Our senior producer and writer
is Meredith Barnes. If you enjoy the show, share it
(36:05):
with your friends. You can also listen and follow on
the iHeartRadio app, Apple Podcasts, or wherever you get your
podcasts
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