August 22, 2024 • 30 mins
When Jen Weaver was diagnosed with psoriasis in 2017 (after five years handling rheumatoid arthritis), she was 36 years old and had three busy kids. Her plaques were very visible–she said they covered her “from head to toe”--and very painful. Psoriasis meant a step into a world where people noticed her auto-immune condition for the first time, and the reaction was far from comforting. So Jen found her people, and now runs a community and resource bank called “My Spoonie Sisters” (Why spoons? Listen to find out!). In our step into history, we trace the origins of the stigma against psoriasis and the key figures in dispelling that stigma. History, and Jen, show us that education busts stigma.
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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 histay of our skin, you'll find empathetic, transformative
conversations here on Our Skin. My guest today is Jen Weaver.
(01:10):
She was diagnosed with rheumatoid arthritis in twenty twelve and
then psyriasis in twenty seventeen, and she found that her
diagnoses made her feel really stigmatized and alone. It is
of course overwhelming to handle any new chronic diagnosis, but
then one that shows up on your skin can be
especially hard, and Jen's symptoms were really affecting her life.
(01:34):
Her doctors worried about infection because of the severity of
her plaques, which she said covered her head to toe.
She really had to dial into the right medical help.
Even specialists like dermatologists prescribed things that didn't help at
all and in fact made things worse. This trial and
error treatment is unfortunately something that a lot ofsrias's patients
(01:56):
go through. But lucky for us, Jeno Action she got
herself hooked into the online support community and she now
runs her own community and podcast called My Spooney Sisters,
and that podcast and community provides resources, a listening ear,
and understanding to people coping with a chronic diagnosis of illness.
(02:18):
In our step back into history today, we're going to
trace the legacy of medical investigation into syriasis. There are
a few doctors along the way from ancient Greece all
the way up to the present who have made major
contributions to our knowledge and understanding of psoriasis. And as
we know, education busts stigma. So if anyone is the
right person to talk to about destigmatizing life with psoriasis,
(02:41):
it is Jen. Any chronic condition that affects our skin
leaves us vulnerable to feelings of embarrassment or social stigma.
That is completely understandable, but it is not the way
it has to be, and Jen is part of leading
the way to a future where self consciousness and ignorance
around psoriasis are things of the past. Jen, I am
so glad to have you here with me today.
Speaker 2 (03:03):
Thank you so much for having me.
Speaker 1 (03:05):
How are you doing.
Speaker 2 (03:07):
I'm doing well.
Speaker 1 (03:08):
How are you I'm great. Welcome to our skin. I
want to talk to you about your story a little
bit in detail. So first of all, how old were
you when you started noticing or discovering changes in your skin?
Speaker 2 (03:24):
I was actually thirty six years old and a mom
of three early high school kids.
Speaker 1 (03:31):
Oh my goodness. Were you diagnosed right away or were
you left sort of wondering what was going on and
pondering what was happening.
Speaker 2 (03:39):
It was actually kind of funny because one day I
started noticing sores down on my right ankle and going
up my calf. I showed my husband and he was
worried I was getting an infection, and so we went
off to Urgent Care to get it checked out. And
Urgent Care thought that I had caught some kind of
infection from either the hot tub or the pool at
(04:01):
my gym, and so they prescribed some ointments for me.
No improvement. I did go in to see my family doctor,
like they asked me to family doctor said the same thing.
The following month, I went in for my monthly infusion
with my roomatologist and I showed her what was going on,
and I said, hey, you know, do we need to
(04:21):
skip this month's infusion. And as soon as she took
a look, she said, you know what, I need to
go consult with a colleague. I will be right back,
but this is not an infection. You did not get
this from a pool. And as soon as she left
the room, my jow just went to the ground and
I'm like, well, crap, right, Like now what does this mean?
(04:42):
This does not sound good.
Speaker 1 (04:44):
This is so fascinating to me because you are, as
she said, you are a mom, you have three kids,
you're already dealing with a family and taking care of that.
You already have a chronic illness that you're managing, and
now you have another complete whammo that came. It sounds
like out of the blue, since no one else thought
that this was something in terms of chronic illness, but
like a one off, treatable situation. How did you deal
(05:08):
with that mentally?
Speaker 2 (05:10):
You know, mentally, it was really difficult, and I was
a little freaked out. Of course, when she came back
in the room, she brought two more rheumatologists with her,
and so all the red flags, the bells, the whistles,
everything are going off, and I want to flee that
very moment. They explained to me that I was in
the one percent group of people that have an allergic
(05:31):
reaction to TNF inhibitors. It's a biologic confusion, and that
one percent of people get postular psoriasis. And so they
explained that this was no infection. This was actually a
form of psoriasis that is super rare and painful, and
they describe it kind of like a burn from the
(05:51):
inside out.
Speaker 1 (05:53):
I have to imagine dealing with your already heavy responsibility
load and then getting this whole new die nosis had
to have felt a little bit isolating in addition to
just having a thing on your skin that you probably
felt weird about. Can you tell us about how dealing
with that and then living with psoriasis as you've learned
(06:13):
more about your unique situation has played out, and how again,
because you are a mom that takes care of other people,
how others around you have dealt with your skin issues.
Speaker 2 (06:24):
So first of all, you know, like I said, it
started down on my ankle, in my calf, and it
quickly spread. And so as they're trying to figure out
what medications to treat me with, they send me to
a dermatologist and I'm seeing more and more of these
plaques pop up. And now they're all up and down
my legs, they're on the bottom of my feet, they're
on the palms of my hands. They hadn't hit my
scalp yet. The dermatologist gives me some kind of spray.
(06:48):
It felt like pouring acid on my skin. It was horrible.
I don't recommend this to anyone, and he just kept
recommending more and more things, and every single time it's like,
this is not working, this is not helping. So I
talked to my rooms again, and at this point it's like,
how do I even go to a hairdresser. I don't
want them looking at me. I don't want people looking
at me like I'm some lepper and disgusting. That was
(07:09):
the biggest thing, is that you get in your own
head about what everyone is going to say, and you
start making up all these thoughts of what everyone's going
to be thinking of you, and then you go out
in the public, and you know, you get some weird looks.
The nel salon was definitely hard because a lot of
them they want you to put on hand sanitizer before
they touch you, and I'm like, no, this is gonna
(07:31):
hurt me. No, thank you, I promise you. I don't
have anything I'm going to give to you. It's all
I can do to even be here seeing in front
of you right now. So it's just it was that
it was a lot of that everywhere you go. The
poor me looks that I'm getting from everyone, the people
reaching out, oh is there anything I can do to help?
Is there anything that helps you? And just the sad
pity looks. I just couldn't handle that.
Speaker 1 (07:53):
Right. This is interesting because we've been talking about you know,
kind of the outward things that you were doing to cope.
But I'm really curious what your internal monologue was, Like,
what sort of self talk were you using. Obviously a
lot of people talk about feeling outcast, and you already
mentioned like knowing people are looking at you and forming
their own opinions about what's going on. What was that
(08:16):
mental journey in the beginning, like for.
Speaker 2 (08:17):
You, Oh gosh, I think the mental journey was all
over the place. Lucky for me that I had friends
and family that were so close to me that they
would just really sit down and remind me that, like,
I didn't ask for this, I didn't choose this. My
immune system hates me. It's attacking me. There's not much
you could do about that. You just have to remind
yourself that you're doing all the right things, and whatever
(08:39):
people are thinking in their head about you, it's all
on them. It's not my business what they're thinking of me. Anyway,
as long as it's not my business, then I don't hurt.
Speaker 1 (08:47):
I think that's probably the healthiest way you can consider
the whole thing. And what I love is that you
then turned this really into a positive because you now
run this online community and podcast my Spooney Sisters. So
just in case our listeners have never heard this particular thing,
can you explain why spoons are in the name.
Speaker 2 (09:07):
Of course, I don't know when this actually started, but
there was a famous in our world blogger named Christine Meiserndino,
and she was a patient with lupus. She was out
to lunch with a friend. Wanted to explain to her
friend what it was like living with a chronic illness.
So she went and gathered up a bunch of spoons
off of the nearby tables, and she said, these represent
(09:30):
my energy for the day. And on a typical day,
I'm not sure how many spoons I'm going to start
out with. It depends on what I maybe ate the
day before or how I slept, but all of these
represent that and each task that I do is going
to take some of that energy. So you know, she's
holding up ten spoons. She's saying, Okay, I took a
shower today. That's a spoon. That kind of brought in
(09:52):
the term spoon theory, and now people use the word
spoony all the time for different things, and I think, Okay,
this is my community of spoonies, and I want to
talk to my sisters about what they're going through. So
my spoony sisters, I love it.
Speaker 1 (10:08):
I also want to know how this community developed, because
it's grown very quickly, and I'm curious how people found you.
Were these mostly people that were recently diagnosed and were
on the hunt for resources. What were the avenues that
got people to gen?
Speaker 2 (10:24):
Okay, So a few years ago I met this amazing girl.
Her name is Chelsea, and she had started a podcast
called Miammune System Hates Me and I was a guest
on her podcast. Well, two years later, she decided, you
know what, I'm going to get back to my dancing
career and my life and I'm I'm going to cancel
this podcast. And I kind of went into, oh, no,
you know, all these new people out there, they need something,
(10:46):
and that's kind of what sparked the interest and the desire.
And I'd already been doing a lot of fun, silly
things with her and the other people in our support group.
I would have them send me little clips of them
tossing spoons, and so we'd put this together and always
look like we were tossing spoons to each other for
like a reel or a TikTok, and so we just
decided to keep on doing that and then I started
(11:08):
the podcast. Next thing, I know, more and more people
are referring people to me or somehow finding me, and
this whole community is born. And we still do spoon
toss reels. We even do walking reels to show that, like,
you need to get out there and move. You need
to move that body because you need to lubricate those
joints and it's super important. And yeah, people just come
out of the woodwork and find me. I don't know
(11:30):
if they find me through the podcast or what, but
somehow they do if they find me.
Speaker 1 (11:35):
Obviously, people who have been diagnosed are seeking out this information.
I'm curious. Do you also find that you get a
lot of friends and families of patients that are seeking
you out for help as well?
Speaker 2 (11:46):
Not necessarily friends and families, but definitely newly diagnosed or
even friends of my own. You know, I've had people
reach out to me recently saying, you know, I'm on
the path of getting diagnosed with POTS or soriatic arthritis.
What kind of information do you happen to know or
who can you put me in touch with? And that's
what I do. Recently, I partnered up with a friend
of mine and we created what's called the Spoony Directory,
(12:09):
and I reached out and I said, Okay, if you
are a spoony professional, if you offer services of any
kind or even content creation teaching people about things, I
want you in our spoony directory because I want people
to be able to find you for what they're looking for.
If it's a certain diagnosis or a thing they need,
I want them to be able to find you.
Speaker 1 (12:28):
We are going to talk in just a little bit
about the history of stigma aroundsiasis in particular, and one
thing that history makes clear is that education is really
what shifts the needle in terms of de stigmatization. You
offer all of these amazing resources with my spoony sisters.
How have you seen, because I'm sure it gets back
(12:48):
to you how this is helping people. Education and the
resources you offer help people in that community.
Speaker 2 (12:54):
Yeah. Absolutely, you know. I've received cards from people or
what we call happy mail. Happy mail is when you
get something that's not a bill and not junk, which
is wonderful. We all love that. And even just people
direct messaging me and I tell you they always like
to make my eyes sweat. I love all the wonderful things.
I mean, it could be something as simple as I
(13:14):
tell people my favorite lotion that I recommend for anyone
with psoriasis or even just any kind of skin issue
is called Utterbalm of all Things. I find it on Amazalt. Yeah,
it's wonderful. I get it on Amazon. It's like six bucks.
It's wonderful. It's soothing, it doesn't hurt. And so, you know,
I get people all the time replying and saying I
(13:35):
finally tried this and it's helping, and it works so much,
and my hands are on fire anymore. I mean as
things like that that always they make my eyes wet.
Speaker 1 (13:42):
I love it. We have seen. It's no secret a
lot of people will be sometimes when they're dealing with something,
particularly on their skin, something that's visible, a little slow
to go get it checked out and diagnosed. It sounds
like you were pretty quick on the ball about it.
Speaker 2 (13:57):
It was pretty quick, and a lot of it is,
you know, when you're on infusion medications. These are big, powerful,
strong ones. You know, some people are on like low
dose chemos or whatever, and the doctors always tell you
they want they want to know, because if you have
any kind of infection whatsoever, you can't have it. You're
already lowering your immune system as it is, and so
we have to monitor that stuff heavily. And so that's
(14:20):
part of why I went in. I think if I
wouldn't have been on infusions at the time, I probably
would have like just blown it off and thought, you know,
I got a bug bite or something.
Speaker 1 (14:29):
Do you run into that with people in your community
where people show up and they're like, well, I think
I might have this, but I'm not sure, And how
do you deal with those situations?
Speaker 2 (14:38):
Every single time I tell people, you know, I'm not
a doctor, I'm not a professional, but I will give
you my personal opinion if you're open to it. And
my personal opinion is go seek out the doctor that
you need or the specialists that you need immediately, because
when you don't take it seriously, that's a scary thing.
It could be very serious.
Speaker 1 (14:56):
Jim, I'm so grateful for you for sharing your story
with us, and that when we come back after we
have a little break, we are going to meet the
very earliest pioneers in dermatology who debunked some very misguided
beliefs about skin disorders and started us on a journey
to really understand what happens on our skin. Hang tight
because we have more in a minute, welcome back to
(15:33):
our skin. So how do we know what we know
about psoriasis? There was a time when there was no
way to differentiate among different skin conditions. As long as
symptoms look the same, people just sort of assumed what
was going on. But just because something presents the same
way as another condition does, just because the symptoms might match,
(15:54):
that doesn't mean it's the same condition. It certainly doesn't
mean they should be medically treated in the way. Yet
that is exactly what happened for hundreds of years until
the doctors that we'll talk about today made their contributions.
So this topic is incredibly important as chronic skin conditions
affect millions of people worldwide, and the social implications are
(16:15):
as we've heard in talking to Jen profound soriasis is
not just a physical condition. It impacts social interactions, it
impacts mental health. There have been a lot of misconceptions
about the cause of psoriasis over the years. In a
previous episode of this podcast, we spoke with Olympian Mandy
Marquart about her experiences, and she opened up about the
(16:36):
isolation she felt being on the world stage with pariasis
because it's a visible illness and it often leads to stigmatization.
People once believe that syriasis was caused by things like
blood disorders, allergies, poor hygiene, or no joke, just straight
up being a bad person. Jen, It is not uncommon
(16:58):
for some of those stigmas about the causes of psoriasis
to persist today, right.
Speaker 2 (17:03):
Yeah, absolutely, apparently I'm just bad to the bone.
Speaker 1 (17:06):
You've thrown a very evil vibe already.
Speaker 2 (17:08):
I have to tell you, Oh you don't you know it?
Speaker 1 (17:12):
I mean, can you imagine had you been in that
doctor's office with a bunch of specialists showing up and
them going, we think you might be morally corrupt, and
this is what's happened.
Speaker 2 (17:21):
Oh my gosh, I think I would be waiting to
be on some kind of exorcist movie at that point.
Speaker 1 (17:26):
Right, You're like, where are the punked cameras? What's going on?
Thankfully we have moved beyond it, but those misconceptions have
very deep historical roots. In that same episode I just
mentioned with Mandy Marquart, we covered the inhumane ways that
people with chronic skin conditions like pariasis have been treated
throughout history. Sometimes people with skin conditions were forced to
(17:47):
carry around a bell to announce their presence so people
knew they were coming and to get away, and to
wear special clothing to distinguish them in public. This is
because people often vary incorrectly assumed that basis was contagious,
but it also reflected the beliefs of the day that
illness was the result of the patient's failing or of
(18:07):
being a bad person. That's something you mentioned as your
friends and family supporting you, that they were like, you
didn't ask for this. This is just a thing that
your body has decided. So thank you for making that
a very present aspect of this story. Some psoriasis patients
in history were forced, or if you want to be
very kind about it, encouraged, to move away from their
(18:28):
family and friends into communities where everyone had a chronic illness.
Exactly what you need when you're ill is to have
your support system taken away. I think any of us
can imagine the level of isolation and shame that would
be associated with that. As you'll notice, I mentioned that
a lot of people with lots of different visible conditions
suffered this exact same treatment. Generally, particularly in the fifteen
(18:49):
hundreds or sixteen hundreds, people did not distinguish between conditions
like psoriasis and conditions that actually might have been contagious
and potentially would have needed some sort of quarantine to
get them under control. I'm sure everyone is thinking the
first thing, leprosy. Yes, that might have merited that behavior.
Back then, when medicine was really just starting to become professionalized,
(19:10):
doctors made a whole lot of assumptions about people's conditions
just based on site. And of course, the assumption that
a skin condition was linked to a sinful soul definitely,
definitely would have been a huge barrier to compassionate treatment.
But since medicine began, some doctors were trying to take
an evidence based and scientific approach to treating skin conditions.
(19:32):
The efforts were still very rudimentary by today's standards, but
at least they weren't just advocating for making people isolate
themselves if they had even a minor skin condition. We're
going to talk about Maman Hippocrates, who lived in the
third and fourth centuries BCE, and he's widely recognized as
the first medical professional to separate different types of skin
(19:53):
conditions into categories. Those categories were sora such as psoriasis,
Those were any conditions that we itchy lepra, which referred
to symptoms that made the skin scaly, and lichen, which
described skin growths. A couple of hundred years later, in
about two hundred BCE, Dalen of Pergamon, another Greek physician,
(20:14):
surgeon and philosopher, coined the term psoriasis. So we'll get
into the treatment of psoriasis in those ancient times in
another episode, but suffice it to say they were real experimental.
There was a lot of slathering on of various tars,
laying out in the sun for long periods of time,
and literal snake oil pretty gnarly. So that is basically
(20:37):
where things stood for hundreds and hundreds of years. Ify
invasive treatments with just a ton of side effects in
addition to the social stigmatization that was already part of
the problem. It was rough, and the journey to begin
destigmatizing psoriasis, studying the illness scientifically and distinguishing it from
other more contagious skin conditions really gained Listen I'm not
(21:01):
a pun person, but it was with industrialization, so that
was actually purposeful. In the early nineteenth century, in the
early eighteen hundreds, likely eighteen o eight or eighteen oh nine,
there was a British physician named doctor Robert Willin who
published a book on cutaneous diseases, which was a huge
leap forward in distinguishing siasis from other similar skin disorders.
(21:25):
He actually wanted to distinguish and catalog these illnesses so
that they could be treated in ways that were specific
to the needs of different patients. Everybody was not getting
the same thing. Willin was one of the first doctors
to specialize in treating skin conditions, making him one of
the fathers of the modern specialty of dermatology. So, Jen,
(21:46):
having taken in all of this somewhat wacky history, does
it surprise you that it took from two hundred BCE
to the nineteenth century, so more than two thousand years
to get an understanding of what priasis actually is.
Speaker 2 (22:01):
It's not surprising and as surprising. Does that make sense? Yes,
you know, I mean we look back and I mean
look at the crazy things they did and the chopping
of the heads that they did back then. I'm surprised
that we even got to keep our skin.
Speaker 1 (22:14):
We're just gonna try full body flailing and see what happens.
We're just gonna do that. Yeah, it's pretty fascinating to
consider that during that time, how many scores of people
suffered because no one in the medical community was like, wait,
I think, do you remember how hippocrites thought these might
be different things? He wasn't quite onto what was the
(22:37):
correct way to delineate them. But it took that long
for anybody to go back to the idea. Fascinating.
Speaker 2 (22:42):
Yeah, to go from his point to where we are now,
I can't believe it took so long.
Speaker 1 (22:47):
Thank goodness, somebody finally got the message. There is another
major figure in the development of dermatology I want to
talk about that is a contemporary of Villains. That was
an Austrian dermatologist named von Hebra And he made several
important discoveries. But for our purposes as we look at
stigma against skin conditions, his most important discovery may have
(23:10):
been definitively classifying sariasis as a condition that was separate
and different from leprosy. And this was a crucial step
in changing public perception because these two illnesses had, as
we've been saying, been confused for each other basically since
the beginning of time, even though that we know now
that their treatment and their level of contagion completely different.
(23:33):
Von Hebra founded the Vienna School of Dermatology when he
was still a very young man in his thirties, and
his efforts trained lots of other doctors to think more
methodically about skin conditions. So understanding of psoriasis and social
acceptance have indeed thankfully improved over time, but there's still
a lot of lingering social stigma, especially the misconception that
(23:55):
sariasis is contagious. I love that you mentioned that when
you went to get your name done you had to
reassure them repeatedly that this was not a contagious thing,
because it just shows we still have a ways to go.
It is important also to emphasize that soriasis is an
autoimmune disorder, so just by nature, not contagious. It was
not though for another one hundred years or so after
(24:17):
von Hebra in the nineteen sixties, when a doctor named E. J.
Van Scott identified one of the ways that psoriasis actually functions,
that skin cells in people with psoriasis multiplied much faster
than in people without pariasis. This is a process called
epidermal hyperplasia, and it's caused by the immune system, as
(24:38):
Jen has been sharing with us, mistakingly attacking healthy skin cells,
leading to rapid skin cell turnover, and that's what actually
characterizes pariasis. Van Scott worked for the National Institutes for
Health here in the US, and his discoveries led to
an understanding that syriasis is an autoimmune condition for the
very first time, so that is last century, not that
(25:00):
long ago, and that revolutionized treatment, and that was huge
because it really pushed the idea that psoriasis was contagious
to bed at least for dermatologists. We know the general
public still catching up. But keep in mind we are
battling a century's long stigma here, so education remains key
for doctors as well as lay people. And the point
(25:21):
of all of this is that we can't come from
a place of fear if we want to understand and
treat skin conditions like pariasis. So in ancient times, it
was fear of the unknown or the different that led
to that tragic treatment of people with visible skin conditions.
And by treatment, I obviously don't just be social treatment.
Medical treatments were definitely not getting better because doctors were
(25:44):
assuming that a skin condition was caused by the patient
being sinful or having bad hygiene. As the distinguished American
dermatologist Paul Ebashe wrote in nineteen thirty six, quote, syriasis
is an antidote for dermatologist's ego, perhaps an antidote to
all of our egos. Just because we don't understand something
(26:04):
doesn't mean we have to be afraid of it, and
a lack of understanding should drive us to learn more instead. So, Jen,
what I take away from this history is that it
is all about education and that that is what is
going to kill stigma. And I know that that's a
big part of what you do with Spooney Sisters. Absolutely,
how have you seen that you know, good information improving
(26:27):
the lives of the members of your community.
Speaker 2 (26:29):
I've definitely seen where they feel more confident in themselves
and in their treatments by the information coming out in
a manner that is not only correct but understandable. I
think a lot of times, you know, when you're seeing
a rheumatologist or even a dermatologist, it can be scary
to ask all the questions and to tell them that
you don't understand what they're talking about. And so I
(26:49):
think empowering people to understand and to ask for, you know,
a dumbed down version of what you're wanting to understand. Yeah,
I think that's really helped you.
Speaker 1 (27:00):
Also, I think represent this really beautiful transitional arc because
you spoke to us earlier about this being painful and
embarrassing and having social stigma when you first were experiencing it.
But now you are very outspoken about your diagnosis and
you talk with other people and encourage them to share
their stories. How do you feel about that transition?
Speaker 2 (27:23):
It was definitely hard. I think once I started to
notice my skin healing, and once I also started to
notice that people weren't judging me the way that I
thought they were going to judge me, I think it
made it a lot easier. You know, I definitely have
scars now. I do not like wearing shorts or skirts, dresses,
any of that. But you know what, to be honest,
no one's ever asked me about my legs. They don't
(27:45):
pay that much attention. It's what it boils down to,
is more in our heads than it is everybody else's.
They're consumed by themselves.
Speaker 1 (27:53):
They're worrying about their own scars, other issues that they're
self conscious about. You have met your family and your
friends and their support so much that I wonder what
kind of advice you might have for people that maybe
don't have a skin condition themselves, but live with or
love someone with a skin condition. What's the best thing
they can do to help?
Speaker 2 (28:14):
Ask them what they need, do your own research, find
what you can to help them feel better. I think
that's one thing I super appreciate about my own husband
is he will go out on a rough date where
I'm having a flare or a skin breakout, and he
will find me anything he can to try to help,
if it's an EPs and salt, a save, whatever it is,
(28:35):
He'll come home with a whole box of stuff. And
so that's what I would recommend to people, is find
the things or talk to somebody that knows the things
to recommend. I even have an Amazon list that I
share with people, and I've named it Spoonies, And the
entire thing is revolving around what I can recommend to
people that I've tried that I love. And so if
you have something like that, or you know somebody that
(28:56):
does ask for it because that's how you can help them.
Speaker 1 (29:01):
That's nice because you kind of get a double dose.
They get the actual things that will help them, and
just like the benefit of knowing that they're loved and
cared about exactly. Your story is so powerful because you
did turn this into something that not only has been
a way you cope with it, but that impacts and
empowers a lot of other people to cope with similar issues.
(29:22):
If you could send one message to anybody listening who
might be grappling with their own diagnosis, what would it be.
Speaker 2 (29:28):
It's okay to grieve. It's okay to grieve the life
and the body that you once have. But put a
time limit on it, because, like I've said before, this
is one life that you have and there's so much
out there and so much that you have to offer.
So put a time limit on that grief. And if
it needs to come out once in a while, that's okay,
but always pull out that timer because you need to
(29:51):
get out there and live.
Speaker 1 (29:53):
I love it, Jen, Thank you so so much for
being with me today.
Speaker 2 (29:57):
Thank you so much for having me.
Speaker 1 (30:02):
Our skin is hosted by myself Holly Frye and executive
produced and engineered by Ryan Martz. Our senior producer and
writer is Meredith Barnes. If you enjoy the show, share
it 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 histay of our skin, you'll find empathetic, transformative
conversations here on Our Skin. My guest today is Jen Weaver.
(01:10):
She was diagnosed with rheumatoid arthritis in twenty twelve and
then psyriasis in twenty seventeen, and she found that her
diagnoses made her feel really stigmatized and alone. It is
of course overwhelming to handle any new chronic diagnosis, but
then one that shows up on your skin can be
especially hard, and Jen's symptoms were really affecting her life.
(01:34):
Her doctors worried about infection because of the severity of
her plaques, which she said covered her head to toe.
She really had to dial into the right medical help.
Even specialists like dermatologists prescribed things that didn't help at
all and in fact made things worse. This trial and
error treatment is unfortunately something that a lot ofsrias's patients
(01:56):
go through. But lucky for us, Jeno Action she got
herself hooked into the online support community and she now
runs her own community and podcast called My Spooney Sisters,
and that podcast and community provides resources, a listening ear,
and understanding to people coping with a chronic diagnosis of illness.
(02:18):
In our step back into history today, we're going to
trace the legacy of medical investigation into syriasis. There are
a few doctors along the way from ancient Greece all
the way up to the present who have made major
contributions to our knowledge and understanding of psoriasis. And as
we know, education busts stigma. So if anyone is the
right person to talk to about destigmatizing life with psoriasis,
(02:41):
it is Jen. Any chronic condition that affects our skin
leaves us vulnerable to feelings of embarrassment or social stigma.
That is completely understandable, but it is not the way
it has to be, and Jen is part of leading
the way to a future where self consciousness and ignorance
around psoriasis are things of the past. Jen, I am
so glad to have you here with me today.
Speaker 2 (03:03):
Thank you so much for having me.
Speaker 1 (03:05):
How are you doing.
Speaker 2 (03:07):
I'm doing well.
Speaker 1 (03:08):
How are you I'm great. Welcome to our skin. I
want to talk to you about your story a little
bit in detail. So first of all, how old were
you when you started noticing or discovering changes in your skin?
Speaker 2 (03:24):
I was actually thirty six years old and a mom
of three early high school kids.
Speaker 1 (03:31):
Oh my goodness. Were you diagnosed right away or were
you left sort of wondering what was going on and
pondering what was happening.
Speaker 2 (03:39):
It was actually kind of funny because one day I
started noticing sores down on my right ankle and going
up my calf. I showed my husband and he was
worried I was getting an infection, and so we went
off to Urgent Care to get it checked out. And
Urgent Care thought that I had caught some kind of
infection from either the hot tub or the pool at
(04:01):
my gym, and so they prescribed some ointments for me.
No improvement. I did go in to see my family doctor,
like they asked me to family doctor said the same thing.
The following month, I went in for my monthly infusion
with my roomatologist and I showed her what was going on,
and I said, hey, you know, do we need to
(04:21):
skip this month's infusion. And as soon as she took
a look, she said, you know what, I need to
go consult with a colleague. I will be right back,
but this is not an infection. You did not get
this from a pool. And as soon as she left
the room, my jow just went to the ground and
I'm like, well, crap, right, Like now what does this mean?
(04:42):
This does not sound good.
Speaker 1 (04:44):
This is so fascinating to me because you are, as
she said, you are a mom, you have three kids,
you're already dealing with a family and taking care of that.
You already have a chronic illness that you're managing, and
now you have another complete whammo that came. It sounds
like out of the blue, since no one else thought
that this was something in terms of chronic illness, but
like a one off, treatable situation. How did you deal
(05:08):
with that mentally?
Speaker 2 (05:10):
You know, mentally, it was really difficult, and I was
a little freaked out. Of course, when she came back
in the room, she brought two more rheumatologists with her,
and so all the red flags, the bells, the whistles,
everything are going off, and I want to flee that
very moment. They explained to me that I was in
the one percent group of people that have an allergic
(05:31):
reaction to TNF inhibitors. It's a biologic confusion, and that
one percent of people get postular psoriasis. And so they
explained that this was no infection. This was actually a
form of psoriasis that is super rare and painful, and
they describe it kind of like a burn from the
(05:51):
inside out.
Speaker 1 (05:53):
I have to imagine dealing with your already heavy responsibility
load and then getting this whole new die nosis had
to have felt a little bit isolating in addition to
just having a thing on your skin that you probably
felt weird about. Can you tell us about how dealing
with that and then living with psoriasis as you've learned
(06:13):
more about your unique situation has played out, and how again,
because you are a mom that takes care of other people,
how others around you have dealt with your skin issues.
Speaker 2 (06:24):
So first of all, you know, like I said, it
started down on my ankle, in my calf, and it
quickly spread. And so as they're trying to figure out
what medications to treat me with, they send me to
a dermatologist and I'm seeing more and more of these
plaques pop up. And now they're all up and down
my legs, they're on the bottom of my feet, they're
on the palms of my hands. They hadn't hit my
scalp yet. The dermatologist gives me some kind of spray.
(06:48):
It felt like pouring acid on my skin. It was horrible.
I don't recommend this to anyone, and he just kept
recommending more and more things, and every single time it's like,
this is not working, this is not helping. So I
talked to my rooms again, and at this point it's like,
how do I even go to a hairdresser. I don't
want them looking at me. I don't want people looking
at me like I'm some lepper and disgusting. That was
(07:09):
the biggest thing, is that you get in your own
head about what everyone is going to say, and you
start making up all these thoughts of what everyone's going
to be thinking of you, and then you go out
in the public, and you know, you get some weird looks.
The nel salon was definitely hard because a lot of
them they want you to put on hand sanitizer before
they touch you, and I'm like, no, this is gonna
(07:31):
hurt me. No, thank you, I promise you. I don't
have anything I'm going to give to you. It's all
I can do to even be here seeing in front
of you right now. So it's just it was that
it was a lot of that everywhere you go. The
poor me looks that I'm getting from everyone, the people
reaching out, oh is there anything I can do to help?
Is there anything that helps you? And just the sad
pity looks. I just couldn't handle that.
Speaker 1 (07:53):
Right. This is interesting because we've been talking about you know,
kind of the outward things that you were doing to cope.
But I'm really curious what your internal monologue was, Like,
what sort of self talk were you using. Obviously a
lot of people talk about feeling outcast, and you already
mentioned like knowing people are looking at you and forming
their own opinions about what's going on. What was that
(08:16):
mental journey in the beginning, like for.
Speaker 2 (08:17):
You, Oh gosh, I think the mental journey was all
over the place. Lucky for me that I had friends
and family that were so close to me that they
would just really sit down and remind me that, like,
I didn't ask for this, I didn't choose this. My
immune system hates me. It's attacking me. There's not much
you could do about that. You just have to remind
yourself that you're doing all the right things, and whatever
(08:39):
people are thinking in their head about you, it's all
on them. It's not my business what they're thinking of me. Anyway,
as long as it's not my business, then I don't hurt.
Speaker 1 (08:47):
I think that's probably the healthiest way you can consider
the whole thing. And what I love is that you
then turned this really into a positive because you now
run this online community and podcast my Spooney Sisters. So
just in case our listeners have never heard this particular thing,
can you explain why spoons are in the name.
Speaker 2 (09:07):
Of course, I don't know when this actually started, but
there was a famous in our world blogger named Christine Meiserndino,
and she was a patient with lupus. She was out
to lunch with a friend. Wanted to explain to her
friend what it was like living with a chronic illness.
So she went and gathered up a bunch of spoons
off of the nearby tables, and she said, these represent
(09:30):
my energy for the day. And on a typical day,
I'm not sure how many spoons I'm going to start
out with. It depends on what I maybe ate the
day before or how I slept, but all of these
represent that and each task that I do is going
to take some of that energy. So you know, she's
holding up ten spoons. She's saying, Okay, I took a
shower today. That's a spoon. That kind of brought in
(09:52):
the term spoon theory, and now people use the word
spoony all the time for different things, and I think, Okay,
this is my community of spoonies, and I want to
talk to my sisters about what they're going through. So
my spoony sisters, I love it.
Speaker 1 (10:08):
I also want to know how this community developed, because
it's grown very quickly, and I'm curious how people found you.
Were these mostly people that were recently diagnosed and were
on the hunt for resources. What were the avenues that
got people to gen?
Speaker 2 (10:24):
Okay, So a few years ago I met this amazing girl.
Her name is Chelsea, and she had started a podcast
called Miammune System Hates Me and I was a guest
on her podcast. Well, two years later, she decided, you
know what, I'm going to get back to my dancing
career and my life and I'm I'm going to cancel
this podcast. And I kind of went into, oh, no,
you know, all these new people out there, they need something,
(10:46):
and that's kind of what sparked the interest and the desire.
And I'd already been doing a lot of fun, silly
things with her and the other people in our support group.
I would have them send me little clips of them
tossing spoons, and so we'd put this together and always
look like we were tossing spoons to each other for
like a reel or a TikTok, and so we just
decided to keep on doing that and then I started
(11:08):
the podcast. Next thing, I know, more and more people
are referring people to me or somehow finding me, and
this whole community is born. And we still do spoon
toss reels. We even do walking reels to show that, like,
you need to get out there and move. You need
to move that body because you need to lubricate those
joints and it's super important. And yeah, people just come
out of the woodwork and find me. I don't know
(11:30):
if they find me through the podcast or what, but
somehow they do if they find me.
Speaker 1 (11:35):
Obviously, people who have been diagnosed are seeking out this information.
I'm curious. Do you also find that you get a
lot of friends and families of patients that are seeking
you out for help as well?
Speaker 2 (11:46):
Not necessarily friends and families, but definitely newly diagnosed or
even friends of my own. You know, I've had people
reach out to me recently saying, you know, I'm on
the path of getting diagnosed with POTS or soriatic arthritis.
What kind of information do you happen to know or
who can you put me in touch with? And that's
what I do. Recently, I partnered up with a friend
of mine and we created what's called the Spoony Directory,
(12:09):
and I reached out and I said, Okay, if you
are a spoony professional, if you offer services of any
kind or even content creation teaching people about things, I
want you in our spoony directory because I want people
to be able to find you for what they're looking for.
If it's a certain diagnosis or a thing they need,
I want them to be able to find you.
Speaker 1 (12:28):
We are going to talk in just a little bit
about the history of stigma aroundsiasis in particular, and one
thing that history makes clear is that education is really
what shifts the needle in terms of de stigmatization. You
offer all of these amazing resources with my spoony sisters.
How have you seen, because I'm sure it gets back
(12:48):
to you how this is helping people. Education and the
resources you offer help people in that community.
Speaker 2 (12:54):
Yeah. Absolutely, you know. I've received cards from people or
what we call happy mail. Happy mail is when you
get something that's not a bill and not junk, which
is wonderful. We all love that. And even just people
direct messaging me and I tell you they always like
to make my eyes sweat. I love all the wonderful things.
I mean, it could be something as simple as I
(13:14):
tell people my favorite lotion that I recommend for anyone
with psoriasis or even just any kind of skin issue
is called Utterbalm of all Things. I find it on Amazalt. Yeah,
it's wonderful. I get it on Amazon. It's like six bucks.
It's wonderful. It's soothing, it doesn't hurt. And so, you know,
I get people all the time replying and saying I
(13:35):
finally tried this and it's helping, and it works so much,
and my hands are on fire anymore. I mean as
things like that that always they make my eyes wet.
Speaker 1 (13:42):
I love it. We have seen. It's no secret a
lot of people will be sometimes when they're dealing with something,
particularly on their skin, something that's visible, a little slow
to go get it checked out and diagnosed. It sounds
like you were pretty quick on the ball about it.
Speaker 2 (13:57):
It was pretty quick, and a lot of it is,
you know, when you're on infusion medications. These are big, powerful,
strong ones. You know, some people are on like low
dose chemos or whatever, and the doctors always tell you
they want they want to know, because if you have
any kind of infection whatsoever, you can't have it. You're
already lowering your immune system as it is, and so
we have to monitor that stuff heavily. And so that's
(14:20):
part of why I went in. I think if I
wouldn't have been on infusions at the time, I probably
would have like just blown it off and thought, you know,
I got a bug bite or something.
Speaker 1 (14:29):
Do you run into that with people in your community
where people show up and they're like, well, I think
I might have this, but I'm not sure, And how
do you deal with those situations?
Speaker 2 (14:38):
Every single time I tell people, you know, I'm not
a doctor, I'm not a professional, but I will give
you my personal opinion if you're open to it. And
my personal opinion is go seek out the doctor that
you need or the specialists that you need immediately, because
when you don't take it seriously, that's a scary thing.
It could be very serious.
Speaker 1 (14:56):
Jim, I'm so grateful for you for sharing your story
with us, and that when we come back after we
have a little break, we are going to meet the
very earliest pioneers in dermatology who debunked some very misguided
beliefs about skin disorders and started us on a journey
to really understand what happens on our skin. Hang tight
because we have more in a minute, welcome back to
(15:33):
our skin. So how do we know what we know
about psoriasis? There was a time when there was no
way to differentiate among different skin conditions. As long as
symptoms look the same, people just sort of assumed what
was going on. But just because something presents the same
way as another condition does, just because the symptoms might match,
(15:54):
that doesn't mean it's the same condition. It certainly doesn't
mean they should be medically treated in the way. Yet
that is exactly what happened for hundreds of years until
the doctors that we'll talk about today made their contributions.
So this topic is incredibly important as chronic skin conditions
affect millions of people worldwide, and the social implications are
(16:15):
as we've heard in talking to Jen profound soriasis is
not just a physical condition. It impacts social interactions, it
impacts mental health. There have been a lot of misconceptions
about the cause of psoriasis over the years. In a
previous episode of this podcast, we spoke with Olympian Mandy
Marquart about her experiences, and she opened up about the
(16:36):
isolation she felt being on the world stage with pariasis
because it's a visible illness and it often leads to stigmatization.
People once believe that syriasis was caused by things like
blood disorders, allergies, poor hygiene, or no joke, just straight
up being a bad person. Jen, It is not uncommon
(16:58):
for some of those stigmas about the causes of psoriasis
to persist today, right.
Speaker 2 (17:03):
Yeah, absolutely, apparently I'm just bad to the bone.
Speaker 1 (17:06):
You've thrown a very evil vibe already.
Speaker 2 (17:08):
I have to tell you, Oh you don't you know it?
Speaker 1 (17:12):
I mean, can you imagine had you been in that
doctor's office with a bunch of specialists showing up and
them going, we think you might be morally corrupt, and
this is what's happened.
Speaker 2 (17:21):
Oh my gosh, I think I would be waiting to
be on some kind of exorcist movie at that point.
Speaker 1 (17:26):
Right, You're like, where are the punked cameras? What's going on?
Thankfully we have moved beyond it, but those misconceptions have
very deep historical roots. In that same episode I just
mentioned with Mandy Marquart, we covered the inhumane ways that
people with chronic skin conditions like pariasis have been treated
throughout history. Sometimes people with skin conditions were forced to
(17:47):
carry around a bell to announce their presence so people
knew they were coming and to get away, and to
wear special clothing to distinguish them in public. This is
because people often vary incorrectly assumed that basis was contagious,
but it also reflected the beliefs of the day that
illness was the result of the patient's failing or of
(18:07):
being a bad person. That's something you mentioned as your
friends and family supporting you, that they were like, you
didn't ask for this. This is just a thing that
your body has decided. So thank you for making that
a very present aspect of this story. Some psoriasis patients
in history were forced, or if you want to be
very kind about it, encouraged, to move away from their
(18:28):
family and friends into communities where everyone had a chronic illness.
Exactly what you need when you're ill is to have
your support system taken away. I think any of us
can imagine the level of isolation and shame that would
be associated with that. As you'll notice, I mentioned that
a lot of people with lots of different visible conditions
suffered this exact same treatment. Generally, particularly in the fifteen
(18:49):
hundreds or sixteen hundreds, people did not distinguish between conditions
like psoriasis and conditions that actually might have been contagious
and potentially would have needed some sort of quarantine to
get them under control. I'm sure everyone is thinking the
first thing, leprosy. Yes, that might have merited that behavior.
Back then, when medicine was really just starting to become professionalized,
(19:10):
doctors made a whole lot of assumptions about people's conditions
just based on site. And of course, the assumption that
a skin condition was linked to a sinful soul definitely,
definitely would have been a huge barrier to compassionate treatment.
But since medicine began, some doctors were trying to take
an evidence based and scientific approach to treating skin conditions.
(19:32):
The efforts were still very rudimentary by today's standards, but
at least they weren't just advocating for making people isolate
themselves if they had even a minor skin condition. We're
going to talk about Maman Hippocrates, who lived in the
third and fourth centuries BCE, and he's widely recognized as
the first medical professional to separate different types of skin
(19:53):
conditions into categories. Those categories were sora such as psoriasis,
Those were any conditions that we itchy lepra, which referred
to symptoms that made the skin scaly, and lichen, which
described skin growths. A couple of hundred years later, in
about two hundred BCE, Dalen of Pergamon, another Greek physician,
(20:14):
surgeon and philosopher, coined the term psoriasis. So we'll get
into the treatment of psoriasis in those ancient times in
another episode, but suffice it to say they were real experimental.
There was a lot of slathering on of various tars,
laying out in the sun for long periods of time,
and literal snake oil pretty gnarly. So that is basically
(20:37):
where things stood for hundreds and hundreds of years. Ify
invasive treatments with just a ton of side effects in
addition to the social stigmatization that was already part of
the problem. It was rough, and the journey to begin
destigmatizing psoriasis, studying the illness scientifically and distinguishing it from
other more contagious skin conditions really gained Listen I'm not
(21:01):
a pun person, but it was with industrialization, so that
was actually purposeful. In the early nineteenth century, in the
early eighteen hundreds, likely eighteen o eight or eighteen oh nine,
there was a British physician named doctor Robert Willin who
published a book on cutaneous diseases, which was a huge
leap forward in distinguishing siasis from other similar skin disorders.
(21:25):
He actually wanted to distinguish and catalog these illnesses so
that they could be treated in ways that were specific
to the needs of different patients. Everybody was not getting
the same thing. Willin was one of the first doctors
to specialize in treating skin conditions, making him one of
the fathers of the modern specialty of dermatology. So, Jen,
(21:46):
having taken in all of this somewhat wacky history, does
it surprise you that it took from two hundred BCE
to the nineteenth century, so more than two thousand years
to get an understanding of what priasis actually is.
Speaker 2 (22:01):
It's not surprising and as surprising. Does that make sense? Yes,
you know, I mean we look back and I mean
look at the crazy things they did and the chopping
of the heads that they did back then. I'm surprised
that we even got to keep our skin.
Speaker 1 (22:14):
We're just gonna try full body flailing and see what happens.
We're just gonna do that. Yeah, it's pretty fascinating to
consider that during that time, how many scores of people
suffered because no one in the medical community was like, wait,
I think, do you remember how hippocrites thought these might
be different things? He wasn't quite onto what was the
(22:37):
correct way to delineate them. But it took that long
for anybody to go back to the idea. Fascinating.
Speaker 2 (22:42):
Yeah, to go from his point to where we are now,
I can't believe it took so long.
Speaker 1 (22:47):
Thank goodness, somebody finally got the message. There is another
major figure in the development of dermatology I want to
talk about that is a contemporary of Villains. That was
an Austrian dermatologist named von Hebra And he made several
important discoveries. But for our purposes as we look at
stigma against skin conditions, his most important discovery may have
(23:10):
been definitively classifying sariasis as a condition that was separate
and different from leprosy. And this was a crucial step
in changing public perception because these two illnesses had, as
we've been saying, been confused for each other basically since
the beginning of time, even though that we know now
that their treatment and their level of contagion completely different.
(23:33):
Von Hebra founded the Vienna School of Dermatology when he
was still a very young man in his thirties, and
his efforts trained lots of other doctors to think more
methodically about skin conditions. So understanding of psoriasis and social
acceptance have indeed thankfully improved over time, but there's still
a lot of lingering social stigma, especially the misconception that
(23:55):
sariasis is contagious. I love that you mentioned that when
you went to get your name done you had to
reassure them repeatedly that this was not a contagious thing,
because it just shows we still have a ways to go.
It is important also to emphasize that soriasis is an
autoimmune disorder, so just by nature, not contagious. It was
not though for another one hundred years or so after
(24:17):
von Hebra in the nineteen sixties, when a doctor named E. J.
Van Scott identified one of the ways that psoriasis actually functions,
that skin cells in people with psoriasis multiplied much faster
than in people without pariasis. This is a process called
epidermal hyperplasia, and it's caused by the immune system, as
(24:38):
Jen has been sharing with us, mistakingly attacking healthy skin cells,
leading to rapid skin cell turnover, and that's what actually
characterizes pariasis. Van Scott worked for the National Institutes for
Health here in the US, and his discoveries led to
an understanding that syriasis is an autoimmune condition for the
very first time, so that is last century, not that
(25:00):
long ago, and that revolutionized treatment, and that was huge
because it really pushed the idea that psoriasis was contagious
to bed at least for dermatologists. We know the general
public still catching up. But keep in mind we are
battling a century's long stigma here, so education remains key
for doctors as well as lay people. And the point
(25:21):
of all of this is that we can't come from
a place of fear if we want to understand and
treat skin conditions like pariasis. So in ancient times, it
was fear of the unknown or the different that led
to that tragic treatment of people with visible skin conditions.
And by treatment, I obviously don't just be social treatment.
Medical treatments were definitely not getting better because doctors were
(25:44):
assuming that a skin condition was caused by the patient
being sinful or having bad hygiene. As the distinguished American
dermatologist Paul Ebashe wrote in nineteen thirty six, quote, syriasis
is an antidote for dermatologist's ego, perhaps an antidote to
all of our egos. Just because we don't understand something
(26:04):
doesn't mean we have to be afraid of it, and
a lack of understanding should drive us to learn more instead. So, Jen,
what I take away from this history is that it
is all about education and that that is what is
going to kill stigma. And I know that that's a
big part of what you do with Spooney Sisters. Absolutely,
how have you seen that you know, good information improving
(26:27):
the lives of the members of your community.
Speaker 2 (26:29):
I've definitely seen where they feel more confident in themselves
and in their treatments by the information coming out in
a manner that is not only correct but understandable. I
think a lot of times, you know, when you're seeing
a rheumatologist or even a dermatologist, it can be scary
to ask all the questions and to tell them that
you don't understand what they're talking about. And so I
(26:49):
think empowering people to understand and to ask for, you know,
a dumbed down version of what you're wanting to understand. Yeah,
I think that's really helped you.
Speaker 1 (27:00):
Also, I think represent this really beautiful transitional arc because
you spoke to us earlier about this being painful and
embarrassing and having social stigma when you first were experiencing it.
But now you are very outspoken about your diagnosis and
you talk with other people and encourage them to share
their stories. How do you feel about that transition?
Speaker 2 (27:23):
It was definitely hard. I think once I started to
notice my skin healing, and once I also started to
notice that people weren't judging me the way that I
thought they were going to judge me, I think it
made it a lot easier. You know, I definitely have
scars now. I do not like wearing shorts or skirts, dresses,
any of that. But you know what, to be honest,
no one's ever asked me about my legs. They don't
(27:45):
pay that much attention. It's what it boils down to,
is more in our heads than it is everybody else's.
They're consumed by themselves.
Speaker 1 (27:53):
They're worrying about their own scars, other issues that they're
self conscious about. You have met your family and your
friends and their support so much that I wonder what
kind of advice you might have for people that maybe
don't have a skin condition themselves, but live with or
love someone with a skin condition. What's the best thing
they can do to help?
Speaker 2 (28:14):
Ask them what they need, do your own research, find
what you can to help them feel better. I think
that's one thing I super appreciate about my own husband
is he will go out on a rough date where
I'm having a flare or a skin breakout, and he
will find me anything he can to try to help,
if it's an EPs and salt, a save, whatever it is,
(28:35):
He'll come home with a whole box of stuff. And
so that's what I would recommend to people, is find
the things or talk to somebody that knows the things
to recommend. I even have an Amazon list that I
share with people, and I've named it Spoonies, And the
entire thing is revolving around what I can recommend to
people that I've tried that I love. And so if
you have something like that, or you know somebody that
(28:56):
does ask for it because that's how you can help them.
Speaker 1 (29:01):
That's nice because you kind of get a double dose.
They get the actual things that will help them, and
just like the benefit of knowing that they're loved and
cared about exactly. Your story is so powerful because you
did turn this into something that not only has been
a way you cope with it, but that impacts and
empowers a lot of other people to cope with similar issues.
(29:22):
If you could send one message to anybody listening who
might be grappling with their own diagnosis, what would it be.
Speaker 2 (29:28):
It's okay to grieve. It's okay to grieve the life
and the body that you once have. But put a
time limit on it, because, like I've said before, this
is one life that you have and there's so much
out there and so much that you have to offer.
So put a time limit on that grief. And if
it needs to come out once in a while, that's okay,
but always pull out that timer because you need to
(29:51):
get out there and live.
Speaker 1 (29:53):
I love it, Jen, Thank you so so much for
being with me today.
Speaker 2 (29:57):
Thank you so much for having me.
Speaker 1 (30:02):
Our skin is hosted by myself Holly Frye and executive
produced and engineered by Ryan Martz. Our senior producer and
writer is Meredith Barnes. If you enjoy the show, share
it 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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