January 14, 2025 • 37 mins
In this personal episode of Hot Couple Chronicles, Ashley delves into her journey with Hidradenitis Suppurativa (HS), a chronic skin disease that affects her physically and emotionally. She discusses the challenges and misconceptions related to HS, emphasizing the importance of body confidence and self-acceptance.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Welcome to Hot Couple Chronicles, a podcast exploring the singing lifestyle.
(00:04):
Our discussions may contain explicit content and adult themes intended for mature audiences.
While we strive to offer valuable insights and entertainment, please be aware that the
views expressed are based on personal experiences and opinions. We encourage listeners to approach
the content with an open mind and to prioritize communication, consent, and respect in their
(00:25):
relationships. Remember everyone's journey is unique, so take what resonates with you and leave
what doesn't. Thank you for joining us on our adventure.
Hey there and welcome back to Hot Couple Chronicles.
(00:58):
Today's episode will be a little bit different. It's just me Ashley.
This is more of a personal one and this is a chance for me to share part of my journey
that has shaped who I am and how I engage in the lifestyle. It's not always easy to talk about,
but I've come to realize that the things that I struggle with and we struggle with often hold
the power to connect us and not separate us. It's been a crazy wild ride and I have learned so
(01:20):
much about myself and my illness navigating this lifestyle. And so today I'm going to open up
about my experience with hydrotidus superativa or HS, which is a chronic skin disease. And it has had
a profound impact on my life, both physically and emotionally, and an impact on the lifestyle.
(01:42):
It's a condition that has shaped the way that I see myself, my body, and how I engage with
relationships. This episode isn't just about HS though. It's about embracing imperfections
and body confidence and the importance of self-acceptance. So if you're dealing with
an illness or flaws or anything that makes you feel different, I want you to know that you're not
(02:04):
alone. Let's talk about managing these challenges, finding support, and ultimately realizing that our
worth isn't in what we struggle with. I am so excited to share it with you. Let's dive in.
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(02:27):
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next favorite piece. Before we begin, I want to talk more about what HS is. It's a skin condition
and it's characterized by painful lumps, abscesses, and scarring, primarily in areas where you sweat,
(02:50):
and you have a lot of rubbing together. So armpits, groin, buttocks, under the breasts, those are super
common. I have had them randomly other places. Some people have them on their faces, their necks,
their backs. Those are just more common places. It affects 1% of the population, but it's estimated
(03:11):
that up to 4% of people have it. And it's a disease that holds a lot of shame. So there's a lot of
people that have never been diagnosed, a lot of people who have never been to the doctor about it.
And it's often seen in adolescents as your hormones change. It is more common in women than men.
The female to male ratio is about three to one. And that's because a lot of people's HS is hormone
(03:37):
related, including mine. Common symptoms are painful nodules, abscesses, cysts, and they drain,
and they lead to extreme pain and discomfort, and usually have an odor to them as well.
As well as scarring, they tunnel, they make all sorts of tunnels everywhere, which leads to horrible
(03:59):
scarring that usually doesn't go away. It is often misunderstood, sometimes misdiagnosed.
It takes a long time, unfortunately, to get diagnosed with HS. They usually diagnose it with
acne, with cysts, with all sorts of things before you actually get to what it is. I had no idea
(04:22):
what I had until I was 30 years old. I had no clue. It's a very misunderstood. Unfortunately,
a lot of doctors don't know much about HS, and there is no cure. So there's no cure. You just
have to manage your symptoms. Fortunately, there is more research being done and more treatment
(04:42):
is becoming available. We have Humira now is really useful for a lot of people, and that was huge
because we had nothing at all. Most of our stuff is at-home remedies and things you can do to help
and manage pain. While there is no cure, you can go into remission, especially if it's not hormone
(05:03):
related. But the psychological impact of HS is way deeper and bigger than anything. Studies indicate
that patients may experience higher rates of anxiety and depression due to the condition.
It is definitely, for me, more of a mental journey than a physical journey. Even though it is
(05:26):
extremely painful and extremely hard to deal with, I get sometimes baseball-sized lumps on my skin,
but the psychological part of HS is way harder for me to deal with. The number one cause of death
with HS, unfortunately, is suicide. The psychological impacts that it has are way harder to deal with
(05:48):
than the physical. I know me and most people can deal with the physical pain. You know,
deal with the physical pain, even though it's absolutely excruciating. But the mental part of
it is unbearable, especially when you're doing it alone. And most people that have HS are doing it
alone. It's extremely embarrassing. It's hard to walk, to move, to go to the bathroom. It's hard
(06:16):
to breathe some days, and it gets to you. It really does. And then the other cause is sepsis.
So sepsis is a very big risk in having HS because as soon as the infection goes into your bloodstream,
you're done. Super terrifying, so scary, but there are ways to manage it. There are ways to deal with
(06:38):
that. And, yeah, we're going to share some more of that. Looking for a fresh way to connect in the
lifestyle? Welcome to the Playground, a modern space where open-minded adults meet, explore,
and create unforgettable connections. Built for the lifestyle community, the Playground is where
curiosity meets connection. Ready to join the fun? Click the link below and start your adventure
with the Playground today. So I had HS since I was about 10 years old. Pretty much right when I got
(07:09):
my period, I would get pimples, which I thought were pimples, all over my thighs. And I always
was just so ashamed of them. I never said anything to anyone. I always, and often people, associate
it with bad hygiene. So I would just shower obsessively, which is actually worse for HS
(07:32):
because you want your natural body oils and everything. You don't want to strip all of that.
You don't want to irritate anything. You have to be very careful what you put on your skin
and you have to be really careful with how you wash your skin and all of that. But I was so
embarrassed. I thought that I had something wrong with me. I thought I wasn't cleaning enough. I
(07:53):
thought I wasn't cleaning the right way. And so I obsessed over it. And that's usually one of the
first thing people that jump to, that see it, is that you're dirty or that, or you have a sexually
transmitted disease. And as you can imagine in the lifestyle, having something that kind of mimics
that and looks like that, even though this is not contagious whatsoever. And I always try to tell
(08:17):
everyone a million times, this is not a contagious disease. This is a hundred percent genetic. This
is hormones. This is all of inside stuff, but it's hard. People see it and immediately it's,
they're grossed out. And unfortunately there is a smell that comes with a lot of it. There is,
it's just not, it's not cute. And most thighs, you don't see stuff like that. And especially as a kid,
(08:44):
I never saw anyone else's legs look like mine. Or when I had my first daughter, I had her and right
afterwards, I ended up, I looked down at my breast and there was a ginormous hole and it scared me
so bad, but I still never said anything because I thought I had caused it somehow. I was embarrassed
(09:08):
at that point. I never showed my body. I never told anyone what was going on with me physically.
I kept it to myself and I thought maybe it had to be some kind of infection, some kind of something,
but I didn't know. So I just kept taking care of it on my own. And I continued to do that until I
was 30 years old. Up until that point, I really thought I just had to reoccurring cysts. Doctors
(09:32):
would tell me I have cystic acne and I am just prone to cysts and abscesses, but clean better,
make sure you're taking lots of showers, make sure you're drying well, make sure your clothes
aren't too tight, all of that stuff. And I was doing all of that stuff. And so it was very
it was very frustrating and isolating and embarrassing. And I had boyfriends and I'm really good at
(09:58):
hiding, positioning, wearing things they didn't know. And my previous boyfriend had just, again,
just would make fun of me and would associate it with being nasty and dirty. And he was, it was not
a good relationship. And now my husband, he would take care of them for me. We just we assumed it
(10:19):
was cysts and acne and some weird abscesses. And that was just what it was, just like the doctors
had told me. And so he learned quickly how to drain them, how to bandage them, how to treat them.
We would look up that stuff all the time. And then I was a part of a makeup group on Facebook
and I was looking on there and they had a picture of someone had a lump on their thighs and someone
(10:45):
in the comments that said, look into HS. And so I googled it and the more I researched and the more
groups I joined, and the more I started talking to people, I realized that's what I have. And so
that's how I pretty much diagnosed myself and went with that. And turns out that's exactly what I
have. And it was so relieving when I found out it was nothing that I did. I didn't cause this.
(11:12):
It was nothing to be ashamed about. It has nothing to do with hygiene. There was a reason why I was,
my energy was depleted. I was nauseous. I had fevers. I was just full of infection and I finally
understood why. And so I can finally start doing something about it. And as I was saying earlier,
(11:33):
there is no cure. So you have to just eliminate things from your diet and hope that works.
Nothing, especially on my weight loss journey, I would narrow my foods down and try to eliminate
things and figure out exactly what it was. And then I realized that diet wasn't triggering my HS.
And so then I would try different soaps and different shampoos and make sure I was using
(11:58):
certain things. And at this point, it's not the best it's ever been, but it has been worse before.
And unfortunately, my scarring is really deep and really bad. And so that part of it will probably
never go away. But it's a constant trial and error, always all the time. What has helped me the most
(12:20):
is I'm a part of a lot of groups and it's just a whole bunch of people with HS and it is trial and
error. So and some stuff that will work for me won't work for other people. And so everyone just
gets advice and tries out different ways. And so when I'm getting a flare up, I have to really be
(12:40):
careful with what I'm wearing. Anything tight, anything that's going to cause friction, anything
that's going to make me sweat is definitely going to irritate and cause a flare up. Shaving is a big
one for me. If I get an ingrown hair, it's really bad, really bad. And then right before I get my
cycle, all of my spots that I have will flare really bad and it can go super bad and infection
(13:05):
can start and they can get even bigger and cause a really big ruckus. I've had baseball size. I just
recently last year had one. I don't know if anyone saw pictures of me with bandages on the back of
my thigh. I had never had any cysts there at all. And I got one right on the back of my thigh,
which is not a place that I've ever gotten them before. And the only thing I can think of is that
(13:30):
I probably cut myself shaving and that's all it took. And that one I suffered for about,
I want to say six months or so. That was one of the worst ones I've ever had in my entire life.
I had to navigate the lifestyle and social media and content creating and having my spicy pages
(13:50):
and stuff. And normally I'm very ashamed by my illness. And so I edit out my bandages or my spots
and stuff. And I've really been navigating that and trying to figure out what to do there. But
around that time was when I was like, I'm not, I'm done with editing it out. It is a part of who I
am, a part of what I am. And I've been incorporating that into more of my videos and introducing
(14:13):
people to that and talking more about my disease and hopefully touching more people with that. But
it has been a constant trial and error and it really depends on what I'm like emotionally.
Cause not like I was saying, it's not only physical pain of not being able to walk or sit
(14:34):
or breathe. Some of them it's hard to even breathe. It's a constant throbbing and painful stabbing.
And it causes me to sweat and shake and I get fevers depending on my, on how bad the infection
is. And it's just excruciatingly painful, but then it's also embarrassing. And when I have events
(14:57):
and when you're, you want to play with people, there's been so many times when I've had to sit
out and I've had to not participate because I can't physically do it. It drains your energy.
You have no energy. You're just exhausted. And then you're in physical pain and just the touch
of anything on your skin will make you fall to your knees and cry. And so it's been a wild,
(15:20):
crazy journey. And yeah, I've learned you have to be open and you have to just not be afraid to
not be afraid to tell people that you're going through something. You don't have to get into
detail if you don't want to, but if you're physically unable to, you have to speak up
and you have to say something. And so it's been a wild ride of just learning to be honest with
(15:43):
people on this journey with my HS in the lifestyle. Since I was 10 years old, every time you look at
a picture on a magazine or a famous person's thighs, I fantasize about having a normal person's thighs
or breasts or armpits or butt. And my skin never looked like that. My skin doesn't look like that.
(16:05):
It's never going to look like that. Unfortunately, once you have the cysts, tunneling starts
beginning. Our pores are just, our body is fighting itself and it's trying to push out anything
strange and abnormal. And our pores just don't work the same way as other people's and they're
just deformed and they're not good. And so your body rejects everything and it doesn't know what
(16:29):
to do with it. And because the pores don't work, you get these tunnels and everything will tunnel
in and out. And so you'll have infection that'll tunnel on both sides and you'll have these little
holes and you'll have these little gaps where stuff will get stuck. And that's what starts
causing an issue. And the scarring is horrible. The scarring is bad. And it's in intimate places
(16:51):
that you don't want to have imperfections. I got really good at the very beginning. I
was losing weight and I had managed my HS enough where I still wouldn't let anyone see my thighs,
but I was getting more comfortable with wearing lingerie. I was slowly getting more comfortable
with people seeing the front of my thighs. Before the lifestyle, I never wore shorts.
(17:17):
I would never wear shorts ever because you can see my thighs, my inner thighs and, or my butt,
or the bottom of my butt or the back of my thighs. I refuse to wear shorts. I refuse to wear short
dresses. You'd see me in long dresses, pants, year round all the time. And so the lifestyle really,
the more I've got to look at people's skin and people's thighs. And I mean, there's a lot of
(17:42):
perfect. There's a lot of smooth, beautiful, perfectly smooth thighs and butts and all of that.
But the more I got to looking at people's bodies, the more I realized that we all have scars. We
all have bumps and we all have hair. We all have things in places around these intimate areas. And
(18:04):
I wasn't alone. And the more I got to see that, the more it helped me open up and realize that
it's okay. And I found that taking and embracing and saying, I have HS, I have a reason for this,
being the first one to go to a partner, people that I'm playing with and saying, I have
Hidren Tidus Super Ativa and explaining what it is. It's not contagious. I think most people
(18:29):
are just worried that it's contagious. And once I reassured them of that, most people were like,
most people were like, it's not, you made it seem nine times out of 10. I make it sound way worse
than what it actually looks like. And what it is to me, it's absolutely horrible, gross, disgusting.
I hate it with every fiber of my being, but a lot of the times I will be intimate with someone or
(18:52):
I'll be around other girls and I'll be more vulnerable and be with lingerie and have lingerie
on and stuff. And everyone's like, it's not that bad. Anytime I've gotten any waxes or spray tans
that's the first thing I do. I warned them, I'm sorry. And I apologize. And I've spent my whole
life apologizing for something that I have no control over. And so just letting that go and
just embracing it and teaching people, educating people and reassuring that, you know, they're not
(19:17):
going to catch it. It's not something that you can catch. It's not something that you're going to get
from me. That has helped me on this journey a ton, a ton and just embracing it and just being the
first one to approach people with it, not hiding and then having people ask questions and guess
and wonder what that is. I know I have a few girlies and guys that deal with HS on here.
(19:43):
We were at, I believe, Pigeon Forge event with Eye Candy. I believe that's where it was. Yes.
And we were in the pool and this man came over to me and he was like, I heard you talk about HS and
I told my wife and she has HS and she couldn't believe that you have it. And I know I probably
(20:05):
have a lot more people on here than I even know that have it as well. And so I just wanted to
share maybe a few tips that maybe could help you on this journey and navigating being in the lifestyle
with this, or if you have similar disease, I know there's a lot of other skin diseases and illnesses
and stuff that maybe could help you along the way that I've picked up and learned and help me feel
(20:31):
better about having it and about myself. Hey everyone. If you ever wondered where we get
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(20:52):
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Different stuff is going to work for different people. I don't do any medical treatment.
Nothing has worked for me and I have pretty much given up on that avenue. I deal with it at home
(21:17):
and I manage it on my own. It's just not worth it for me personally, but a lot of people have a lot
of success with Humira. That's like pretty much one of the only things that you can really take
for it. Other than antibiotic, doctors usually are throwing stuff at you and hoping that something
(21:37):
helps. And unfortunately, when it's stuff like hormones, you really can't do much except for
just manage it. I do find if I shower as soon as I get home from the gym, stuff that kind of helps,
I think helps. Sometimes it doesn't help. Some months I'll do the same exact thing I did the
month before and it'll be horrible and worse. And that's just because of stress and hormones,
(22:00):
but showering as soon as you're done playing or sweating or partying, dancing, I always make sure
that as soon as we're done dancing or at like secrets, when we're in the pool and stuff,
the first thing you'll see me do is go take a shower. I have just found recently, I don't
know if this could help anyone, but I have found head and shoulders. So zinc, I'm hoping, I'm really
(22:21):
hopeful with this one that is finally going to be a treatment that will help me. I've been taking
zinc supplements here lately and I used to take a little bit and I have quadrupled that amount.
I've read a lot and I have a lot of friends that have had really good success with high amounts of
zinc and so far still have flare ups, but they are just so much less worse than they have been
(22:46):
over the last year. And because this last year has been hard and so hard to navigate and to handle.
And so I have been desperate and I've been looking for every little thing that might help.
Nothing seems to matter because hormones are a bitch to fight and to deal with. But I have
(23:06):
recently started showering with head and shoulders and that's got zinc in it. And I do think it is
helping. I just, it's been about a month or so, so I want to give it some more time. I overdid it
with the zinc at first and I didn't take it with a full stomach and I got violently ill for like a
week straight afterwards until it was to the point where I can't, I can't keep doing this to myself.
(23:30):
So I cut that in half and now we're on this. And so far it hasn't made me sick, but I'm not really
sure the effect on my HS. So it is a constant trial and error all the time, seeing what works,
seeing what doesn't work. And then yeah, make sure you're taking care of yourself more than anything.
(23:51):
Self care, mindfulness, emotional support, make sure you have a good support system. I was lost
and I was so ashamed and I kept it to myself and I was so isolated and depressed and anxious and
sad all of the time. I would flare up and I didn't understand it. And I didn't have my husband.
(24:14):
If it wasn't for my husband, I don't know where I would be. I can't handle the blood and the
draining and all of that. And thankfully he does not mind it at all. And he takes care of me so
well and he actually enjoys it. He's weird like that. He actually loves taking care of my abscesses
and he bandages me. He gives me heat packs or ice packs, my ibuprofen. He makes sure that I'm taking
(24:40):
ibuprofen or whatever antibiotic I might be on, or he makes sure that I'm on schedule, makes sure that
I'm drinking lots of water and flushing my system. And he has been an absolute wonderful, amazing
angel through all of this. And he understands and he gets it and he doesn't judge me. And
(25:01):
I don't know how he finds me attractive some days. Honestly, I really don't down there. It's not cute.
It's not. And everyone can say otherwise, but it's not, it's not cute. It doesn't look good.
And you have all of these girls surrounding you with perfectly amazing butts and vaginas,
(25:22):
because I do have some on my vagina. And I always question all the time why he would choose
something that looks like that compared to 99% of the population. And he doesn't care.
He really doesn't care. And most all of my lifestyle friends I have been open with and I've
(25:44):
told them about my waxer, my spray tanner, all of the people that I have been open with,
they reassure me all the time that it's way worse in my head and it's way worse than what it looks
to me. It's, I am the harshest on myself and I see it just like body dysmorphia. It's just another
thing like that where I, that's all I can focus on. That's all I can see some days. And then some days
(26:07):
I don't mind it as much. It really depends on where I'm at emotionally, where my anxiety,
my depression's at. And so I have to be very careful with myself and gentle with myself and
just be proud of how amazing my body is for dealing with this. My body is constantly
fighting itself. So I do not need my brain and my mind to be also fighting itself.
(26:32):
As hard as that is to actually do and to actually follow through with, it is so crucial. Take time
to meditate, take time to sit with yourself, practice breathing exercises. Cause a lot of
the times you just need to bring your stress down because that can trigger this. And a lot of other
chronic diseases, stress and anxiety triggers it, which seems like a constant cycle because
(26:58):
it's what usually is causing it. So definitely spend every morning talking about the beautiful
things about your body and the amazing stuff that your body is doing and how hard it is working
always all the time to try and fight off all of these things that it thinks is wrong.
And how long you've made it, how strong you are, how resilient your mind and your body are.
(27:23):
Just keep that in mind. And I try to wake up and tell myself what I love about my body,
stop focusing on so much about what I hate about my body. I finally now
will wear lingerie with my thighs out. I used to only, if I did wear lingerie that wasn't shorts,
usually I was wearing baby dolls. That's how I started getting comfortable with wearing lingerie
(27:44):
around people because I'd never even wore shorts. So I navigated that very, very, very slowly
because it's right there and everyone can see it. And my worst fear is what if they think I have
an STI or an STD and I don't want anyone to ever think that I'm lying to them or that I'm not being
honest. And I also just don't like the way that it looks. Again, it just does not look cute. And so
(28:11):
I don't want to turn people off. I'm trying to turn them on. Why would I want to? And so I slowly
would put on lingerie without shorts or without the baby doll skirt or the long skirts. And I would
wear fishnets and tights and thigh highs. And I slowly progressively just got more comfortable.
And like I said earlier, I realized that I am not alone. Everyone has something going on. Everyone
(28:37):
has some kind of imperfection. We're not all perfect. Some people are dang close. And so it's
harder to see on them, but they all are sitting there with something that they are obsessing about,
that they're worrying about, that they're trying to hide. And the more people that I spent time
with, especially women that I spent time with, and I realized that we're all struggling with
(28:59):
something. It's my HS and my varicose veins that I'm super, super self-conscious about. It's their
noses or their chin or their eczema or their psoriasis that they've got going on or acne.
All of us, men and women, but especially women I've found, at least personally, are just
(29:20):
constantly critiquing themselves. And they're not worried about your imperfections because they are
too busy tearing themselves down most all of the time. And so no one's noticing these spots on the
back of your thigh or the scar that you have or the bruising that you have because they're so worried
worrying about theirs. And so I guess just the more you talk to people, the more open you are
(29:47):
about your issues and about things that you deal with. Don't keep it inside. Just be honest, say it
out loud, and you're going to be amazed with how many people come back at you with, that's nothing.
Did you ever see this on me? Or I didn't even notice that. I didn't even see that. And the more
(30:08):
that you just are around humans and people and you realized how imperfect we are, the more comfortable
you will become, I promise. And the fact that the lifestyle is full of so many people that are just
embracing their sexuality, their bodies, open-minded human beings that just love people and don't care
(30:29):
what you look like. Obviously, you're going to run into people who are more into quote unquote
perfect and they want this ideal image and body. But most every single person that I have met
in this journey doesn't care. They don't care. What's really important is your confidence and
(30:51):
your personality. Those two things can trump looks any day. And that's what's important. That's what
people care about. And sexy is that being confident and owning what you are, even if it's not perfect,
that's what people care about. And that's what makes you sexy. In this lifestyle, no one is going
to notice your little piece of hair, your little scar or your little bruising. No one cares as much
(31:20):
as you do. I promise you. And as you go through the lifestyle, and if you do have something like a
chronic illness or disease or imperfection, take it as a chance to embrace it and educate people,
raise awareness for that illness or disease or whatever it is that you're going through and talk
more about it. The more educated people are, the easier it's going to be. I promise. I have taught
(31:45):
so many people that were uneducated about H.S. and what it is that I have. And now they can walk away.
Next time they see it, they'll know exactly what that is. And it won't be as scary the more people
know about it. And if you're the one educating people, you have the narrative. You can tell people
all of the information that you would like them to know. And don't be afraid to tell them how they
(32:07):
can make you more comfortable. And don't be afraid to tell them when it's just too much or you just
can't embrace compassion. Compassion is so important and understanding and openness and no matter what
it is that you're going through and your story can help others feel less isolated and more empowered.
You have no idea what it can do just to be a listening ear, just to be compassionate and
(32:34):
thoughtful and just to be there. And for those of you that are dealing with H.S., I have a few
different educational resources, places that have helped me. Hope for H.S. is a nonprofit and they
provide support and education about H.S. It's hopeforhs.org. I will put all of this stuff down in
the notes and always feel free to reach out to me on social media too and I can give you any of these
(32:58):
links. The H.S. Foundation, it offers information and awareness for H.S. and that's hsfoundation.org.
The Mighty is a platform and there you can share stories and find other people and talk about chronic
illness and that's the mighty.com. And then patientslikeme.com, you can connect with other
(33:19):
people that are managing chronic illnesses and conditions. Chronic Illness Alliance advocates for
those living with chronic illnesses and provides resources for you. Chronicillnessalliance.org and
hscommunity.org is a big one that has helped me and they help with resources and navigating living
with H.S. And as much as I just like Facebook, one of the only reasons that I keep it around are my
(33:46):
groups that I am in. I am in so many H.S. groups now with tens of thousands of people and it's so
real and it's so honest, especially for days where you're just like, I hate it here. I hate this
disease. I can't do it anymore and you'll see that and there will be so many people there just
(34:07):
supporting you that understand and feel the same way that you have felt. And there are pictures of
real life human being bodies and real life scenarios and stuff that's going on and they will say
different things you might be able to try. Stuff that you wouldn't have thought of. Stuff you can
bring to your doctor. Different resources and websites and places to get answers. And so highly
(34:31):
highly recommend Facebook groups for sure. Try it out. I know it's not for everybody but I do feel
like it's more personal and you can connect with other people that are going through the same thing.
And before we wrap up, I want to touch base and really drive home again on something that is even
more important than the physical aspect of chronic illness and that is your mental health. And living
(34:57):
with a condition like HS or any other chronic illness can take a toll on your mental health.
Resources like BetterHelp, they've got NAMI, which is the National Alliance on Mental Health.
They offer support for those of you that go through these things and the emotional aspects of chronic
(35:18):
illness, anxiety, depression, isolation. They provide therapy, counseling, community support,
and help you navigate the challenges that come along with it. If you're feeling alone or
overwhelmed, I encourage you to seek out these resources and do not face it alone. There are
people and communities out there including the lifestyle that are ready to support you and more
(35:45):
than happy to be there for you. And then now that we've covered all of that and some tools,
support systems, all of the things, hopefully have educated you a little bit more about HS
and dealing with the lifestyle and all of the fun things in between and not so fun things in between.
I guess it's time to wrap this up. It went so quickly as it always does. But I hope this
(36:11):
episode resonated with you and it reminded you that your imperfections don't define you.
They're a part of your story and they help shape who you are and who you become. Take a moment to
reflect on what we've talked about today. Let's embrace our journey. Seek support when we need it
and celebrate the strength that comes from within. Thank you for tuning in and for your openness and
(36:35):
for being a part of our community. We love you. We appreciate you. And if you have any thoughts or
questions or stories or if you too have HS or chronic illness, please share and feel free to
reach out. I'd love to hear from you. That would be so amazing. Stay strong, stay connected and
remember it's all a part of the journey. And with that, I'll leave you with my final thought.
(36:59):
It's not that serious. Don't make it weird. I love you guys and I will talk to you next week. Bye.
Welcome to Hot Couple Chronicles, a podcast exploring the singing lifestyle.
(00:04):
Our discussions may contain explicit content and adult themes intended for mature audiences.
While we strive to offer valuable insights and entertainment, please be aware that the
views expressed are based on personal experiences and opinions. We encourage listeners to approach
the content with an open mind and to prioritize communication, consent, and respect in their
(00:25):
relationships. Remember everyone's journey is unique, so take what resonates with you and leave
what doesn't. Thank you for joining us on our adventure.
Hey there and welcome back to Hot Couple Chronicles.
(00:58):
Today's episode will be a little bit different. It's just me Ashley.
This is more of a personal one and this is a chance for me to share part of my journey
that has shaped who I am and how I engage in the lifestyle. It's not always easy to talk about,
but I've come to realize that the things that I struggle with and we struggle with often hold
the power to connect us and not separate us. It's been a crazy wild ride and I have learned so
(01:20):
much about myself and my illness navigating this lifestyle. And so today I'm going to open up
about my experience with hydrotidus superativa or HS, which is a chronic skin disease. And it has had
a profound impact on my life, both physically and emotionally, and an impact on the lifestyle.
(01:42):
It's a condition that has shaped the way that I see myself, my body, and how I engage with
relationships. This episode isn't just about HS though. It's about embracing imperfections
and body confidence and the importance of self-acceptance. So if you're dealing with
an illness or flaws or anything that makes you feel different, I want you to know that you're not
(02:04):
alone. Let's talk about managing these challenges, finding support, and ultimately realizing that our
worth isn't in what we struggle with. I am so excited to share it with you. Let's dive in.
Hey, beautiful. If you're looking to feel confident and sexy, Veluptuous Fixin has got you covered with
stunning lingerie and outfits that fit every curve. And for our listeners, you can snag 10% off your
(02:27):
order with code hotcoupleinGA at checkout. Don't miss out. Check out the link below and find your
next favorite piece. Before we begin, I want to talk more about what HS is. It's a skin condition
and it's characterized by painful lumps, abscesses, and scarring, primarily in areas where you sweat,
(02:50):
and you have a lot of rubbing together. So armpits, groin, buttocks, under the breasts, those are super
common. I have had them randomly other places. Some people have them on their faces, their necks,
their backs. Those are just more common places. It affects 1% of the population, but it's estimated
(03:11):
that up to 4% of people have it. And it's a disease that holds a lot of shame. So there's a lot of
people that have never been diagnosed, a lot of people who have never been to the doctor about it.
And it's often seen in adolescents as your hormones change. It is more common in women than men.
The female to male ratio is about three to one. And that's because a lot of people's HS is hormone
(03:37):
related, including mine. Common symptoms are painful nodules, abscesses, cysts, and they drain,
and they lead to extreme pain and discomfort, and usually have an odor to them as well.
As well as scarring, they tunnel, they make all sorts of tunnels everywhere, which leads to horrible
(03:59):
scarring that usually doesn't go away. It is often misunderstood, sometimes misdiagnosed.
It takes a long time, unfortunately, to get diagnosed with HS. They usually diagnose it with
acne, with cysts, with all sorts of things before you actually get to what it is. I had no idea
(04:22):
what I had until I was 30 years old. I had no clue. It's a very misunderstood. Unfortunately,
a lot of doctors don't know much about HS, and there is no cure. So there's no cure. You just
have to manage your symptoms. Fortunately, there is more research being done and more treatment
(04:42):
is becoming available. We have Humira now is really useful for a lot of people, and that was huge
because we had nothing at all. Most of our stuff is at-home remedies and things you can do to help
and manage pain. While there is no cure, you can go into remission, especially if it's not hormone
(05:03):
related. But the psychological impact of HS is way deeper and bigger than anything. Studies indicate
that patients may experience higher rates of anxiety and depression due to the condition.
It is definitely, for me, more of a mental journey than a physical journey. Even though it is
(05:26):
extremely painful and extremely hard to deal with, I get sometimes baseball-sized lumps on my skin,
but the psychological part of HS is way harder for me to deal with. The number one cause of death
with HS, unfortunately, is suicide. The psychological impacts that it has are way harder to deal with
(05:48):
than the physical. I know me and most people can deal with the physical pain. You know,
deal with the physical pain, even though it's absolutely excruciating. But the mental part of
it is unbearable, especially when you're doing it alone. And most people that have HS are doing it
alone. It's extremely embarrassing. It's hard to walk, to move, to go to the bathroom. It's hard
(06:16):
to breathe some days, and it gets to you. It really does. And then the other cause is sepsis.
So sepsis is a very big risk in having HS because as soon as the infection goes into your bloodstream,
you're done. Super terrifying, so scary, but there are ways to manage it. There are ways to deal with
(06:38):
that. And, yeah, we're going to share some more of that. Looking for a fresh way to connect in the
lifestyle? Welcome to the Playground, a modern space where open-minded adults meet, explore,
and create unforgettable connections. Built for the lifestyle community, the Playground is where
curiosity meets connection. Ready to join the fun? Click the link below and start your adventure
with the Playground today. So I had HS since I was about 10 years old. Pretty much right when I got
(07:09):
my period, I would get pimples, which I thought were pimples, all over my thighs. And I always
was just so ashamed of them. I never said anything to anyone. I always, and often people, associate
it with bad hygiene. So I would just shower obsessively, which is actually worse for HS
(07:32):
because you want your natural body oils and everything. You don't want to strip all of that.
You don't want to irritate anything. You have to be very careful what you put on your skin
and you have to be really careful with how you wash your skin and all of that. But I was so
embarrassed. I thought that I had something wrong with me. I thought I wasn't cleaning enough. I
(07:53):
thought I wasn't cleaning the right way. And so I obsessed over it. And that's usually one of the
first thing people that jump to, that see it, is that you're dirty or that, or you have a sexually
transmitted disease. And as you can imagine in the lifestyle, having something that kind of mimics
that and looks like that, even though this is not contagious whatsoever. And I always try to tell
(08:17):
everyone a million times, this is not a contagious disease. This is a hundred percent genetic. This
is hormones. This is all of inside stuff, but it's hard. People see it and immediately it's,
they're grossed out. And unfortunately there is a smell that comes with a lot of it. There is,
it's just not, it's not cute. And most thighs, you don't see stuff like that. And especially as a kid,
(08:44):
I never saw anyone else's legs look like mine. Or when I had my first daughter, I had her and right
afterwards, I ended up, I looked down at my breast and there was a ginormous hole and it scared me
so bad, but I still never said anything because I thought I had caused it somehow. I was embarrassed
(09:08):
at that point. I never showed my body. I never told anyone what was going on with me physically.
I kept it to myself and I thought maybe it had to be some kind of infection, some kind of something,
but I didn't know. So I just kept taking care of it on my own. And I continued to do that until I
was 30 years old. Up until that point, I really thought I just had to reoccurring cysts. Doctors
(09:32):
would tell me I have cystic acne and I am just prone to cysts and abscesses, but clean better,
make sure you're taking lots of showers, make sure you're drying well, make sure your clothes
aren't too tight, all of that stuff. And I was doing all of that stuff. And so it was very
it was very frustrating and isolating and embarrassing. And I had boyfriends and I'm really good at
(09:58):
hiding, positioning, wearing things they didn't know. And my previous boyfriend had just, again,
just would make fun of me and would associate it with being nasty and dirty. And he was, it was not
a good relationship. And now my husband, he would take care of them for me. We just we assumed it
(10:19):
was cysts and acne and some weird abscesses. And that was just what it was, just like the doctors
had told me. And so he learned quickly how to drain them, how to bandage them, how to treat them.
We would look up that stuff all the time. And then I was a part of a makeup group on Facebook
and I was looking on there and they had a picture of someone had a lump on their thighs and someone
(10:45):
in the comments that said, look into HS. And so I googled it and the more I researched and the more
groups I joined, and the more I started talking to people, I realized that's what I have. And so
that's how I pretty much diagnosed myself and went with that. And turns out that's exactly what I
have. And it was so relieving when I found out it was nothing that I did. I didn't cause this.
(11:12):
It was nothing to be ashamed about. It has nothing to do with hygiene. There was a reason why I was,
my energy was depleted. I was nauseous. I had fevers. I was just full of infection and I finally
understood why. And so I can finally start doing something about it. And as I was saying earlier,
(11:33):
there is no cure. So you have to just eliminate things from your diet and hope that works.
Nothing, especially on my weight loss journey, I would narrow my foods down and try to eliminate
things and figure out exactly what it was. And then I realized that diet wasn't triggering my HS.
And so then I would try different soaps and different shampoos and make sure I was using
(11:58):
certain things. And at this point, it's not the best it's ever been, but it has been worse before.
And unfortunately, my scarring is really deep and really bad. And so that part of it will probably
never go away. But it's a constant trial and error, always all the time. What has helped me the most
(12:20):
is I'm a part of a lot of groups and it's just a whole bunch of people with HS and it is trial and
error. So and some stuff that will work for me won't work for other people. And so everyone just
gets advice and tries out different ways. And so when I'm getting a flare up, I have to really be
(12:40):
careful with what I'm wearing. Anything tight, anything that's going to cause friction, anything
that's going to make me sweat is definitely going to irritate and cause a flare up. Shaving is a big
one for me. If I get an ingrown hair, it's really bad, really bad. And then right before I get my
cycle, all of my spots that I have will flare really bad and it can go super bad and infection
(13:05):
can start and they can get even bigger and cause a really big ruckus. I've had baseball size. I just
recently last year had one. I don't know if anyone saw pictures of me with bandages on the back of
my thigh. I had never had any cysts there at all. And I got one right on the back of my thigh,
which is not a place that I've ever gotten them before. And the only thing I can think of is that
(13:30):
I probably cut myself shaving and that's all it took. And that one I suffered for about,
I want to say six months or so. That was one of the worst ones I've ever had in my entire life.
I had to navigate the lifestyle and social media and content creating and having my spicy pages
(13:50):
and stuff. And normally I'm very ashamed by my illness. And so I edit out my bandages or my spots
and stuff. And I've really been navigating that and trying to figure out what to do there. But
around that time was when I was like, I'm not, I'm done with editing it out. It is a part of who I
am, a part of what I am. And I've been incorporating that into more of my videos and introducing
(14:13):
people to that and talking more about my disease and hopefully touching more people with that. But
it has been a constant trial and error and it really depends on what I'm like emotionally.
Cause not like I was saying, it's not only physical pain of not being able to walk or sit
(14:34):
or breathe. Some of them it's hard to even breathe. It's a constant throbbing and painful stabbing.
And it causes me to sweat and shake and I get fevers depending on my, on how bad the infection
is. And it's just excruciatingly painful, but then it's also embarrassing. And when I have events
(14:57):
and when you're, you want to play with people, there's been so many times when I've had to sit
out and I've had to not participate because I can't physically do it. It drains your energy.
You have no energy. You're just exhausted. And then you're in physical pain and just the touch
of anything on your skin will make you fall to your knees and cry. And so it's been a wild,
(15:20):
crazy journey. And yeah, I've learned you have to be open and you have to just not be afraid to
not be afraid to tell people that you're going through something. You don't have to get into
detail if you don't want to, but if you're physically unable to, you have to speak up
and you have to say something. And so it's been a wild ride of just learning to be honest with
(15:43):
people on this journey with my HS in the lifestyle. Since I was 10 years old, every time you look at
a picture on a magazine or a famous person's thighs, I fantasize about having a normal person's thighs
or breasts or armpits or butt. And my skin never looked like that. My skin doesn't look like that.
(16:05):
It's never going to look like that. Unfortunately, once you have the cysts, tunneling starts
beginning. Our pores are just, our body is fighting itself and it's trying to push out anything
strange and abnormal. And our pores just don't work the same way as other people's and they're
just deformed and they're not good. And so your body rejects everything and it doesn't know what
(16:29):
to do with it. And because the pores don't work, you get these tunnels and everything will tunnel
in and out. And so you'll have infection that'll tunnel on both sides and you'll have these little
holes and you'll have these little gaps where stuff will get stuck. And that's what starts
causing an issue. And the scarring is horrible. The scarring is bad. And it's in intimate places
(16:51):
that you don't want to have imperfections. I got really good at the very beginning. I
was losing weight and I had managed my HS enough where I still wouldn't let anyone see my thighs,
but I was getting more comfortable with wearing lingerie. I was slowly getting more comfortable
with people seeing the front of my thighs. Before the lifestyle, I never wore shorts.
(17:17):
I would never wear shorts ever because you can see my thighs, my inner thighs and, or my butt,
or the bottom of my butt or the back of my thighs. I refuse to wear shorts. I refuse to wear short
dresses. You'd see me in long dresses, pants, year round all the time. And so the lifestyle really,
the more I've got to look at people's skin and people's thighs. And I mean, there's a lot of
(17:42):
perfect. There's a lot of smooth, beautiful, perfectly smooth thighs and butts and all of that.
But the more I got to looking at people's bodies, the more I realized that we all have scars. We
all have bumps and we all have hair. We all have things in places around these intimate areas. And
(18:04):
I wasn't alone. And the more I got to see that, the more it helped me open up and realize that
it's okay. And I found that taking and embracing and saying, I have HS, I have a reason for this,
being the first one to go to a partner, people that I'm playing with and saying, I have
Hidren Tidus Super Ativa and explaining what it is. It's not contagious. I think most people
(18:29):
are just worried that it's contagious. And once I reassured them of that, most people were like,
most people were like, it's not, you made it seem nine times out of 10. I make it sound way worse
than what it actually looks like. And what it is to me, it's absolutely horrible, gross, disgusting.
I hate it with every fiber of my being, but a lot of the times I will be intimate with someone or
(18:52):
I'll be around other girls and I'll be more vulnerable and be with lingerie and have lingerie
on and stuff. And everyone's like, it's not that bad. Anytime I've gotten any waxes or spray tans
that's the first thing I do. I warned them, I'm sorry. And I apologize. And I've spent my whole
life apologizing for something that I have no control over. And so just letting that go and
just embracing it and teaching people, educating people and reassuring that, you know, they're not
(19:17):
going to catch it. It's not something that you can catch. It's not something that you're going to get
from me. That has helped me on this journey a ton, a ton and just embracing it and just being the
first one to approach people with it, not hiding and then having people ask questions and guess
and wonder what that is. I know I have a few girlies and guys that deal with HS on here.
(19:43):
We were at, I believe, Pigeon Forge event with Eye Candy. I believe that's where it was. Yes.
And we were in the pool and this man came over to me and he was like, I heard you talk about HS and
I told my wife and she has HS and she couldn't believe that you have it. And I know I probably
(20:05):
have a lot more people on here than I even know that have it as well. And so I just wanted to
share maybe a few tips that maybe could help you on this journey and navigating being in the lifestyle
with this, or if you have similar disease, I know there's a lot of other skin diseases and illnesses
and stuff that maybe could help you along the way that I've picked up and learned and help me feel
(20:31):
better about having it and about myself. Hey everyone. If you ever wondered where we get
our outfits, accessories, and even some of the cool decor that you see in our content, look no
further. We've got all linked in our Amazon storefront from stylish fits, fun accessories
to the decor that sets the vibe. We've handpicked our favorites just for you. Head over to our
(20:52):
Amazon storefront and to check it out. And you might just find something that fits your style.
Shopping our picks helps support the show. So thank you for all the love.
Different stuff is going to work for different people. I don't do any medical treatment.
Nothing has worked for me and I have pretty much given up on that avenue. I deal with it at home
(21:17):
and I manage it on my own. It's just not worth it for me personally, but a lot of people have a lot
of success with Humira. That's like pretty much one of the only things that you can really take
for it. Other than antibiotic, doctors usually are throwing stuff at you and hoping that something
(21:37):
helps. And unfortunately, when it's stuff like hormones, you really can't do much except for
just manage it. I do find if I shower as soon as I get home from the gym, stuff that kind of helps,
I think helps. Sometimes it doesn't help. Some months I'll do the same exact thing I did the
month before and it'll be horrible and worse. And that's just because of stress and hormones,
(22:00):
but showering as soon as you're done playing or sweating or partying, dancing, I always make sure
that as soon as we're done dancing or at like secrets, when we're in the pool and stuff,
the first thing you'll see me do is go take a shower. I have just found recently, I don't
know if this could help anyone, but I have found head and shoulders. So zinc, I'm hoping, I'm really
(22:21):
hopeful with this one that is finally going to be a treatment that will help me. I've been taking
zinc supplements here lately and I used to take a little bit and I have quadrupled that amount.
I've read a lot and I have a lot of friends that have had really good success with high amounts of
zinc and so far still have flare ups, but they are just so much less worse than they have been
(22:46):
over the last year. And because this last year has been hard and so hard to navigate and to handle.
And so I have been desperate and I've been looking for every little thing that might help.
Nothing seems to matter because hormones are a bitch to fight and to deal with. But I have
(23:06):
recently started showering with head and shoulders and that's got zinc in it. And I do think it is
helping. I just, it's been about a month or so, so I want to give it some more time. I overdid it
with the zinc at first and I didn't take it with a full stomach and I got violently ill for like a
week straight afterwards until it was to the point where I can't, I can't keep doing this to myself.
(23:30):
So I cut that in half and now we're on this. And so far it hasn't made me sick, but I'm not really
sure the effect on my HS. So it is a constant trial and error all the time, seeing what works,
seeing what doesn't work. And then yeah, make sure you're taking care of yourself more than anything.
(23:51):
Self care, mindfulness, emotional support, make sure you have a good support system. I was lost
and I was so ashamed and I kept it to myself and I was so isolated and depressed and anxious and
sad all of the time. I would flare up and I didn't understand it. And I didn't have my husband.
(24:14):
If it wasn't for my husband, I don't know where I would be. I can't handle the blood and the
draining and all of that. And thankfully he does not mind it at all. And he takes care of me so
well and he actually enjoys it. He's weird like that. He actually loves taking care of my abscesses
and he bandages me. He gives me heat packs or ice packs, my ibuprofen. He makes sure that I'm taking
(24:40):
ibuprofen or whatever antibiotic I might be on, or he makes sure that I'm on schedule, makes sure that
I'm drinking lots of water and flushing my system. And he has been an absolute wonderful, amazing
angel through all of this. And he understands and he gets it and he doesn't judge me. And
(25:01):
I don't know how he finds me attractive some days. Honestly, I really don't down there. It's not cute.
It's not. And everyone can say otherwise, but it's not, it's not cute. It doesn't look good.
And you have all of these girls surrounding you with perfectly amazing butts and vaginas,
(25:22):
because I do have some on my vagina. And I always question all the time why he would choose
something that looks like that compared to 99% of the population. And he doesn't care.
He really doesn't care. And most all of my lifestyle friends I have been open with and I've
(25:44):
told them about my waxer, my spray tanner, all of the people that I have been open with,
they reassure me all the time that it's way worse in my head and it's way worse than what it looks
to me. It's, I am the harshest on myself and I see it just like body dysmorphia. It's just another
thing like that where I, that's all I can focus on. That's all I can see some days. And then some days
(26:07):
I don't mind it as much. It really depends on where I'm at emotionally, where my anxiety,
my depression's at. And so I have to be very careful with myself and gentle with myself and
just be proud of how amazing my body is for dealing with this. My body is constantly
fighting itself. So I do not need my brain and my mind to be also fighting itself.
(26:32):
As hard as that is to actually do and to actually follow through with, it is so crucial. Take time
to meditate, take time to sit with yourself, practice breathing exercises. Cause a lot of
the times you just need to bring your stress down because that can trigger this. And a lot of other
chronic diseases, stress and anxiety triggers it, which seems like a constant cycle because
(26:58):
it's what usually is causing it. So definitely spend every morning talking about the beautiful
things about your body and the amazing stuff that your body is doing and how hard it is working
always all the time to try and fight off all of these things that it thinks is wrong.
And how long you've made it, how strong you are, how resilient your mind and your body are.
(27:23):
Just keep that in mind. And I try to wake up and tell myself what I love about my body,
stop focusing on so much about what I hate about my body. I finally now
will wear lingerie with my thighs out. I used to only, if I did wear lingerie that wasn't shorts,
usually I was wearing baby dolls. That's how I started getting comfortable with wearing lingerie
(27:44):
around people because I'd never even wore shorts. So I navigated that very, very, very slowly
because it's right there and everyone can see it. And my worst fear is what if they think I have
an STI or an STD and I don't want anyone to ever think that I'm lying to them or that I'm not being
honest. And I also just don't like the way that it looks. Again, it just does not look cute. And so
(28:11):
I don't want to turn people off. I'm trying to turn them on. Why would I want to? And so I slowly
would put on lingerie without shorts or without the baby doll skirt or the long skirts. And I would
wear fishnets and tights and thigh highs. And I slowly progressively just got more comfortable.
And like I said earlier, I realized that I am not alone. Everyone has something going on. Everyone
(28:37):
has some kind of imperfection. We're not all perfect. Some people are dang close. And so it's
harder to see on them, but they all are sitting there with something that they are obsessing about,
that they're worrying about, that they're trying to hide. And the more people that I spent time
with, especially women that I spent time with, and I realized that we're all struggling with
(28:59):
something. It's my HS and my varicose veins that I'm super, super self-conscious about. It's their
noses or their chin or their eczema or their psoriasis that they've got going on or acne.
All of us, men and women, but especially women I've found, at least personally, are just
(29:20):
constantly critiquing themselves. And they're not worried about your imperfections because they are
too busy tearing themselves down most all of the time. And so no one's noticing these spots on the
back of your thigh or the scar that you have or the bruising that you have because they're so worried
worrying about theirs. And so I guess just the more you talk to people, the more open you are
(29:47):
about your issues and about things that you deal with. Don't keep it inside. Just be honest, say it
out loud, and you're going to be amazed with how many people come back at you with, that's nothing.
Did you ever see this on me? Or I didn't even notice that. I didn't even see that. And the more
(30:08):
that you just are around humans and people and you realized how imperfect we are, the more comfortable
you will become, I promise. And the fact that the lifestyle is full of so many people that are just
embracing their sexuality, their bodies, open-minded human beings that just love people and don't care
(30:29):
what you look like. Obviously, you're going to run into people who are more into quote unquote
perfect and they want this ideal image and body. But most every single person that I have met
in this journey doesn't care. They don't care. What's really important is your confidence and
(30:51):
your personality. Those two things can trump looks any day. And that's what's important. That's what
people care about. And sexy is that being confident and owning what you are, even if it's not perfect,
that's what people care about. And that's what makes you sexy. In this lifestyle, no one is going
to notice your little piece of hair, your little scar or your little bruising. No one cares as much
(31:20):
as you do. I promise you. And as you go through the lifestyle, and if you do have something like a
chronic illness or disease or imperfection, take it as a chance to embrace it and educate people,
raise awareness for that illness or disease or whatever it is that you're going through and talk
more about it. The more educated people are, the easier it's going to be. I promise. I have taught
(31:45):
so many people that were uneducated about H.S. and what it is that I have. And now they can walk away.
Next time they see it, they'll know exactly what that is. And it won't be as scary the more people
know about it. And if you're the one educating people, you have the narrative. You can tell people
all of the information that you would like them to know. And don't be afraid to tell them how they
(32:07):
can make you more comfortable. And don't be afraid to tell them when it's just too much or you just
can't embrace compassion. Compassion is so important and understanding and openness and no matter what
it is that you're going through and your story can help others feel less isolated and more empowered.
You have no idea what it can do just to be a listening ear, just to be compassionate and
(32:34):
thoughtful and just to be there. And for those of you that are dealing with H.S., I have a few
different educational resources, places that have helped me. Hope for H.S. is a nonprofit and they
provide support and education about H.S. It's hopeforhs.org. I will put all of this stuff down in
the notes and always feel free to reach out to me on social media too and I can give you any of these
(32:58):
links. The H.S. Foundation, it offers information and awareness for H.S. and that's hsfoundation.org.
The Mighty is a platform and there you can share stories and find other people and talk about chronic
illness and that's the mighty.com. And then patientslikeme.com, you can connect with other
(33:19):
people that are managing chronic illnesses and conditions. Chronic Illness Alliance advocates for
those living with chronic illnesses and provides resources for you. Chronicillnessalliance.org and
hscommunity.org is a big one that has helped me and they help with resources and navigating living
with H.S. And as much as I just like Facebook, one of the only reasons that I keep it around are my
(33:46):
groups that I am in. I am in so many H.S. groups now with tens of thousands of people and it's so
real and it's so honest, especially for days where you're just like, I hate it here. I hate this
disease. I can't do it anymore and you'll see that and there will be so many people there just
(34:07):
supporting you that understand and feel the same way that you have felt. And there are pictures of
real life human being bodies and real life scenarios and stuff that's going on and they will say
different things you might be able to try. Stuff that you wouldn't have thought of. Stuff you can
bring to your doctor. Different resources and websites and places to get answers. And so highly
(34:31):
highly recommend Facebook groups for sure. Try it out. I know it's not for everybody but I do feel
like it's more personal and you can connect with other people that are going through the same thing.
And before we wrap up, I want to touch base and really drive home again on something that is even
more important than the physical aspect of chronic illness and that is your mental health. And living
(34:57):
with a condition like HS or any other chronic illness can take a toll on your mental health.
Resources like BetterHelp, they've got NAMI, which is the National Alliance on Mental Health.
They offer support for those of you that go through these things and the emotional aspects of chronic
(35:18):
illness, anxiety, depression, isolation. They provide therapy, counseling, community support,
and help you navigate the challenges that come along with it. If you're feeling alone or
overwhelmed, I encourage you to seek out these resources and do not face it alone. There are
people and communities out there including the lifestyle that are ready to support you and more
(35:45):
than happy to be there for you. And then now that we've covered all of that and some tools,
support systems, all of the things, hopefully have educated you a little bit more about HS
and dealing with the lifestyle and all of the fun things in between and not so fun things in between.
I guess it's time to wrap this up. It went so quickly as it always does. But I hope this
(36:11):
episode resonated with you and it reminded you that your imperfections don't define you.
They're a part of your story and they help shape who you are and who you become. Take a moment to
reflect on what we've talked about today. Let's embrace our journey. Seek support when we need it
and celebrate the strength that comes from within. Thank you for tuning in and for your openness and
(36:35):
for being a part of our community. We love you. We appreciate you. And if you have any thoughts or
questions or stories or if you too have HS or chronic illness, please share and feel free to
reach out. I'd love to hear from you. That would be so amazing. Stay strong, stay connected and
remember it's all a part of the journey. And with that, I'll leave you with my final thought.
(36:59):
It's not that serious. Don't make it weird. I love you guys and I will talk to you next week. Bye.
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