January 25, 2024 • 45 mins
Have you ever met someone whose strength and passion turned their personal struggle into a beacon of hope for others? Susan O'Hara did exactly that. Battling the often-misunderstood condition of lipedema, Susan transformed her life from a government manager to a social media influencer, author, and businesswoman with her own footwear collection. Throughout our conversation, she shares her incredible journey of diagnosis, surgeries, and the creation of her supportive platform, legslikemine.com, which has become a sanctuary for those facing similar challenges.
Susan's lipedema journey serves as a powerful reminder of the importance of community, understanding, and the celebration of diverse life experiences that go beyond mere appearances. Her story, punctuated by anecdotes of swimsuit confidence and online support networks, invites us to listen, learn, and re-evaluate our own perceptions, while empowering those affected by lipedema to live their lives with joy and acceptance.
Connect with Susan!
https://legslikemine.com/
YouTube.com/c/legslikemine
https://www.instagram.com/legs_likemine/
Let's Connect:
https://www.facebook.com/DanielleNicoleLaRose/
https://www.instagram.com/danielle_nicole_larose/
https://www.daniellenicolelarose.com/
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Danielle La Rose (00:00):
Susan O'Hara is an author, a social media
influencer, a model and footwearcollection owner.
Everything she does is to helpwomen.
Yes, with rarely diagnosed,Help me here.
Susan O'Hara (00:13):
Lippidema.
Danielle La Rose (00:14):
Lippidema.
It affects only 11%, which isstill a big percent of women,
and can be debilitatingphysically and mentally.
Susan has changed.
The women with Lippidemia seethemselves by sharing her
outfits and activities onlegslikeminecom and homegirl you
are.
When I see your pictures, youare just so full of energy.
(00:37):
I just want to be surrounded byyou, and I've never even met
you before, but your outfits andyour smile, just everything
about you just exudes joy and,just you know, really like a
safe space.
So tell us more, susan, abouthow you got here, absolutely.
Susan O'Hara (00:54):
So before I started doing legslikemine and
all that kind of stuff, Iactually was a government
manager for a long time, like 28years, right.
I worked for the FAA.
I loved being able to helppeople and being in a position
where if somebody needed help,like mentoring and stuff like
that that I could do that.
(01:15):
You know well, a few years agoI started having problems with
my legs and they had developed.
The Lippidemia had actuallydeveloped 22 years ago after I
had my son, and I just thoughtthat's how it is.
You know, that's just how it is, and I had a foot problem.
I'm a Girl Scout leader.
I've been in Girl Scoutsforever and stuff, and I was
taken by Girls to New York City.
(01:35):
This is a really long story.
Sorry about that.
Danielle La Rose (01:38):
I love.
No, we are here for this.
Tell us the story.
Susan O'Hara (01:41):
I was taken by Girls to New York City and I was
like man, I've got to getsomething done about this leg
because it's killing me.
And you know how, when you'rein New York, you just walk and
walk and walk right.
So I went to a foot bracespecialist and she looked at my
foot and she goes who's treatingyour lymphedema?
And I was like my what?
I'd never heard the term before, right, and so I got the brace.
(02:02):
I went back home and I startedgetting on the internet like
crazy.
I took some pictures of my legsand, yes, I did have lymphedema
.
One leg is bigger than theother.
But I was posting on someforums and stuff and a lady was
like check this out, your legslook just like mine.
Do you have a lipidema?
You need to go find somebodythat can treat your lipidema.
(02:22):
And I was like bingo and thankgoodness for the internet.
So once I got that word, evenheard the word for the first
time, I went out and did allthis research and it was really
really hard to find informationabout it right.
So I went and switched myinsurances, I went and had
surgery and stuff.
And as I'm coming out ofsurgery, literally you know how,
(02:43):
when you get out of surgery andyou're clutching onto your cell
phone for dear life becauseit's the only comfort you have
when you come out, I was like Ishould video this and share with
other women what I'm goingthrough.
And so that morning, literallythey're wheeling me from the
surgery center to like thenursing facility where they're
going to keep me for a couple ofdays.
I turn on my phone and I'm like, hey guys, this is Susan, I
(03:09):
like that.
And so if you go back to myYouTube channel, you'll see the
very first videos are of merecovering from the first three
surgeries that I had, and it'slike the good, the bad and the
ugly.
Like that first one, my eyesare all swollen up and
everything you know and I'mtalking about like what it's
like to go through all thissurgery and everything and the
post care, and then like themental things that are going on
(03:31):
with me too, as the first time Isaw my legs after they had been
reduced quite a bit and stuff,because it was a big deal, you
know.
So I decided after I oh, Iforgot to tell you this when I
was in the, in the recoverycenter, I was getting a thousand
DMs and emails a day a thousand.
I did not rest the entire time.
(03:54):
I was in recovery.
I went off to a hotel by myselffor a few days and I spent the
whole time just helping people,right.
And so I was like I have to dothis, because the reason I found
out about my situation isbecause someone was gracious
enough to share a picture of herlegs with me, right, and it
literally was the first time.
I was like I'm not a freak, I'mnot a freak of nature, right,
(04:16):
and I as I dug into it.
So I started legslikeminecom.
I just started logging all mystuff and sharing everything and
what.
I was able to reduce thethousand messages a day by
answering frequently askedquestions.
So if people would ask me aquestion, I'd be like boom,
here's a blog, boom, here's ablog, you know.
And it helped me out a wholelot.
(04:36):
So that's why I started all ofmy stuff is because women are
desperate for information aboutthis.
This disease is so freaky andweird and you really do.
You feel like not a real womanwhenever you're going around
alone all this time, and thenall of a sudden, they see
somebody like me.
My legs do look just like them.
(04:56):
I'm a bigger girl still and allthat stuff, and I'm like I am.
I am living my life.
I'm going to go do all thethings that my body allows me to
do and I'm going to show youthat you should be getting your
butt out of bed or off therecliner or whatever, and doing
all of it because you've onlygot the one go do the things
right.
So, anyway, that's the longstory.
That's how I got here.
Danielle La Rose (05:17):
Yeah, it's, oh my gosh.
I literally have goosebumpsright now on my arms just
thinking about the power Because, like you said, you know it's
about living your life.
You know, that's the messagethat I hope I put out into the
world as often as possible,right Like, regardless of our
bodies if our bodies areallowing us to move like that is
what is most important.
(05:37):
Right Like doing the things sookay, so tell us a little bit
for those of us listening,because you know, like you said,
11% of women have this.
So can you share with us, thoseof us who aren't familiar, so
we're aware of what this is?
Susan O'Hara (05:52):
Yeah, absolutely so.
Lipidema is a fat disease.
It's painful, so a lot ofpeople realize they have it.
Whenever their cat walks acrosstheir legs, they might be
laying in bed or whatever, andyou're like, wow, why does it
hurt when my cat is walkingacross my legs?
Even ladies who are smaller, soit can affect anybody, any
woman of any size, and it startsin either like times of
(06:16):
hormonal change, like puberty,pregnancy for me that's when it
happened menopause, that's whenit triggers its ugly rears, its
ugly head, right.
So they feel this pain in theirlegs and their arms and
sometimes in their bellies.
It can affect all over yourbody, right, but legs are the
most normal place for it to hitEasy bruising.
So there have been so manytimes.
(06:38):
I traveled for my career for 25years, right, and I always said
I had mystery bruises when I gotoff of the plane, like I don't
know what happened, but I've gotthis monkey bruise on my leg
and oh, by the way, it lastedfor four weeks, right, wow, and
so that.
But then.
So those are some of the othersymptoms, but what you see is a
lot of the ladies who aresmaller up top and then bigger
down bottom, and they try andtry and try.
(07:00):
They've had lap vambi-aryatricsurgery, they've been on all the
diets.
You see them at the gym.
They just aren't losing thatweight that's in the bottom part
of them.
So and then, as it progresses,what ends up happening is we
form these like nodulesunderneath our skin, just
subcutaneous, and for me I hadthem behind my knees and in the
(07:20):
middle part of my knees thatfelt like golf balls, like you
could actually feel the fatcells that had gotten so
inflamed that they felt likegolf balls.
And then, as it, if itprogresses even further, it can
go to where your legs startgetting to be like the size of
barrels.
I mean it gets really, reallybad for people that it
progresses in pretty badly.
So, but we've all seen theladies that are built like me A
(07:43):
lot of times like I don't knowif you can see this or not, but
if you look at the side of myarm you can see where it's kind
of cuffed right here, and a lotof ladies it'll happen at the
bottom of their ankles and theirwrists and it can get really
big right here.
But their hands usually andfeet usually are spared from it
Once it develops into anadvanced stage, a stage three or
four.
(08:03):
Then we start getting lymphedemain our limbs and stuff too, and
that's whenever you startseeing people who have, like
skin issues and you know, reallyloss of mobility because it's
gotten so bad.
So that's what lipidema is.
But I'm talking millions ofpeople.
I have followers in Australia,new Zealand, the UK, canada, I
(08:25):
mean everywhere.
It happens to everyone, youknow, and it only affects women
for the most part.
Danielle La Rose (08:30):
Very interesting.
Thank you so much for sharingthat.
You know, I think I always it'sso interesting to me Our bodies
are the most magical machines,right, like they do so many
crazy cool things, but they alsodo really weird things and
different things and so many ofus never learn, like we're not
learning about how our bodiesactually function and what
(08:51):
different things are.
And, just like you said, youknow needing to find someone on
the internet to say, hey, Ithink you might be experiencing
what I'm experiencing, like howpowerful is that?
You know, and that's exactlywhat now you do for women.
So what are some of the?
You know I love the word power.
So what are some of the mostpowerful?
(09:12):
You know conversations andthings that you've experienced
with some of the women thatyou've worked with, and also
with yourself over the pastseveral years that you've been
doing this.
Susan O'Hara (09:22):
Yeah, I'll tell you so.
Not too long ago I went toPotsdam, germany, on to a
conference that was mostlydoctors, but there were some
patients that had lipidema there.
It was the first lipidema ofWorld Congress.
So the research on this isrelatively new still.
Just to sort of take it back alittle bit, it was discovered in
the early 1900s and then sortof set aside because women's
(09:44):
diseases typically aren't theones that are researched first.
Right, and the last five yearsmore than half of the research
on this disease has happened,and so the doctors worldwide are
just now starting to gettogether and have consensus on
like what the symptoms are, thetreatments, blah, blah, blah.
Right, they still don't knowwhy it happens, but anyway, I
was in Potsdam and every time Igo to a conference now it always
(10:06):
blows my mind, right, becauseI'm just like.
I'm just Susan.
You know you're in your roomwhenever you're doing your
podcast or your work or whatever, and you don't realize that
when I hit submit on that button, especially on Facebook, boom,
250,000 people just saw my post.
Like you, forget about that,right, I'm hearing my jammies or
my big suit or whatever, I'mdoing so anyway.
(10:28):
So I go into Potsdam and there'sthis lady there named Lisa and
she is like high powered CEO ofa big organization and stuff,
and she is fangirling on me sohard Hi, lisa, anyway.
And I'm like so tell me what,tell me your story and stuff.
And she said, susan, I did notknow that as a woman who had
(10:49):
legs that are deformed.
And that she said I just hiddenmyself for so long.
And when I saw that outfitsthat she wear, the beautiful
fabrics and the way that youstill fix your hair and put on
makeup and fake eyelashes andall that stuff, she was like
you're the first person thatever gave me permission to be
beautiful again.
And I was like, oh my God, Imean literally.
(11:11):
There are so many times when Icry.
I'm a crier, me too, I know forsomeone to tell me that, like
you had to get permission tofeel like you could be beautiful
, and I was like that is amazing.
And now, and so I have to tellyou, the whole time we were at
the conference, she was wearingthe most gorgeous clothes, like
really pretty fabrics and allthat stuff, and you could just
(11:31):
tell that she was like damn it,I am going to be pretty, I'm
going to do the best I can withwhat I have right now, and so
that was really powerful for meand it's encouraging for people
like me.
Like you're working in thislittle room, right, and you
forget that people are likepaying attention to how you
project yourself, you know.
But I have to tell you someother ones that have been really
(11:54):
, really powerful for me.
And so I swim.
Swimming is like the bestexercise you can do for this
disease, and I'm always videoing.
You know, if I'm doing anything, I'm videoing.
I pooped, let me take pictures,you know.
So, anyway, I'm not thereswimming.
I'm doing a video for legs likemine, and I get a thing that
pops up and it's like do youhave a second to chat?
(12:15):
And I just had that feelingwhere I was like I should
probably take this.
And I took it and it was a ladywho's a stage four.
So she's at that point whereshe's her weight is too heavy to
be on hospital tables, and sothe doctors really, when you get
to a certain point they're kindof done with you, like there's
nothing they can do, and soyou're kind of just stuck there.
(12:36):
And those are the ladies thatreally speak to my heart too,
because I just feel so terribleand I'm working on trying to fix
that right so that becausethey're the ones that need the
help the most, they're stuck inbed, blah, blah, blah.
So anyway, I take this call andshe is despondent, like she's
one call away from calling 988for suicide support.
And we talked a lot for mywhole swim.
(12:58):
I'm swimming the whole timetalking back and forth, and by
the end of the call she wasfeeling a lot better about her.
You know who she was and whather purpose was in life and all
that stuff.
But those mean a lot to mewhenever you're like you might
be the only person who's willingto just listen to someone, and
it's not.
I mean, obviously it's not notpart of my job to do that, but
(13:20):
it is part of my calling to dothat, to be there for that one
person who just I mean theyliterally feel so, so alone.
So those kinds of callsabsolutely speak to me,
absolutely and I just cannotimagine now my life not doing
this.
You know, it's just so cool.
Danielle La Rose (13:40):
It is so amazing what you're doing and I
appreciate that you say thatyou're a crier, because I don't
know if you saw it, but I starttearing up because you know it
is.
You know, just like you say now, woman with wearing the clothes
and everything.
You know we have this.
Our society is so f'd up, youknow, with identifying what
beauty is right, like we havethis, these beauty standards
(14:01):
that are just such BS that, likeyou know, none of us, no matter
what you look like, no matterwhat you're going through, you
can never achieve that.
And you know we just put thispressure on us that if we don't
look that way, then you know weare supposed to cover up, we are
supposed to hide, we aresupposed to, you know, just wear
.
I love black, so I wear allblack all the time, but we're
supposed to wear all black,right and just and be just.
(14:23):
You know, try to make ourselvesas small as possible.
And so you're giving women thatpermission and not that they
need it, because they don't needpermission, right, like we all
have the permission, but youjust, standing in your power, is
giving them the power to belike okay, if she can do that,
then I can do that, and that isabsolutely remarkable, and you
(14:46):
are making such a huge impact inthe world, and so let me ask
you this so what are some of thethings that you share with
women, right, if they are, youknow, at that really hard time?
What are some of the likethings that you can say to help
them?
You know, not move past it, butget through it.
Susan O'Hara (15:05):
Right, right, I think one of the things that's
interesting, one of thequestions I ask women a lot is
who are you, besides having achronic condition, right, like,
who were you before you retiredon disability or whatever?
And you wouldn't believe thestories.
I mean, it's women from everyclass, every education level.
You know, and I love to hearlike you know, I used to be a
(15:27):
conference planner or I've gotone friend, francine, who she
used to be a costumer onBroadway and she tells these
crazy stories about all of thepeople she's met, all the shows
she's worked on and stuff, andyou would never know it because
the only thing we had inconnection was our lipidema.
You know, there are women nowwho, yes, they were in the
(15:49):
corporate world before andretired for whatever reason,
right, but now they run theseat-home businesses that I didn't
even know about.
Patty Cornute she runslipidemafitnesscom and she is
beautiful and she does theseamazing things that my body just
is like no, I'm not going to dothat, but she's an artist and,
behind the scenes, like I wentand stalked her one day on Etsy
(16:12):
and different websites and stuffand I was like you make amazing
art and I would never know that.
So to just hear like I have morevalue than this lady who's got
these big legs, you know, likeI'm a valued human and here's my
family, here's my, you knowwhat I've done with my kids and
stuff like that, to get women totalk about who they really are,
is just so powerful, you know,because sometimes we, whenever
(16:36):
you see especially somebodywho's in advanced stages and
they're at the mall in thatwheelchair or whatever, that's
all you see and you make theseassumptions like, oh, she
probably is at home eatingbuckets of fried chicken at a
time and that's not the case.
So to know like she's a valuedperson is just so powerful.
And people, all people reallywant is to be heard.
(16:57):
They just want someone tolisten to them.
So asking questions about whothey are is the best thing that
I've ever learned from all ofthis.
Danielle La Rose (17:05):
Mmm, mmm.
So good, because again, womenare just so much more powerful
for lack of better word just sopowerful and everything that
they do.
And again our society justtakes us down to one thing of,
just well, how do you look right?
And so how fun it is to get topull that out of women, to be
like what are your strengths,what are your passions, what are
(17:27):
you doing?
And you know I talk a lot aboutyou know I don't want you to
think about your.
You know body positive is great, but I don't really want you to
think about your body anymore.
I want you to think about itless and I want you to live more
.
And so, like that's what you'redoing is helping them realize
there's so much more you know tolife.
Obviously, this is painful andlots of things happening.
(17:48):
So it's not just about, youknow, appearance but, you know,
just reminding ourselves of thatit is more than just how we
look, that it's all those otherimportant things about us.
I love that.
So what would you tell a womanwho right now perhaps there's
someone listening that's like,oh, wow, like I never thought
that that's what this could befor me.
(18:09):
I've been struggling, I don'tknow what would you tell that
woman?
Like the first few things, liketo help her get moving in the
right direction, to help herwith that.
Susan O'Hara (18:21):
Right.
So I mean, I think one of thethings is, if you think you have
it, don't wait for a diagnosisto start conservative therapies.
So, like 80% of the stuff thatyou can do is the stuff that you
personally have to do, not adoctor, not a surgeon, whatever
Right.
So you can buy off the shelfcompression and it's not going
to harm you unless you have somecontraindicated things, like
(18:42):
around heart disease and youknow vein things and stuff like
that.
So obviously you want to talkto your doctor first.
But what I tell women is, ifyou want to get an actual
diagnosis, you need to come intothe doctor's office prepared to
be sitting with a physician orclinician who has not had
exposure to this before.
So it's not required in medicalschool that doctors learn about
(19:06):
this, and right now in theUnited States only cardiology
and dermatology have questionsabout the Padema on their exams,
so they're not educated aboutit.
So, one, you're going to needto know that you're probably
going to have to educate yourdoctor about it and two, you
need to and you've probablyexperienced this anyway need to
just have the awareness that alot of doctors will diagnose it
(19:29):
as obesity and some doctors havefat phobia, right?
So they don't want to spend thetime that's needed to deal with
a patient that's overweight.
But if you're like me and Iwalked into my doctor's office
with all this information fromthe internet and she was really
open to it and she was like I'venever heard of it.
But let me look it up, let's goahead and send you, you know,
for full blood work to make sureit's not something else.
(19:51):
And she was like I can go aheadand refer you to a lymphoedema
therapist.
So you do want to go to yourdoctor, but just anticipate that
you're probably not going toget that diagnosis.
And I'm going to pause for justa second, because the Lipidema
Foundation did a study not toolong ago, a survey of about
seven or 800 women, and theydiscovered that women start
(20:12):
getting their symptoms reallyearly in life, some at the age
of 12 and some in their 20s and30s, but the average age of
diagnosis isn't for many yearslater, like 47.
So women go with these weirdsymptoms all this time and then
they get this diagnosis and alot of times they have
progressed too far or, you know,really really far.
So that's what you're dealingwith is misdiagnosis for a long
(20:36):
time Right.
So if they can just come inwith that mentality of like I
need to educate my doctor, we'regoing to have to partner on
this that's really good.
But so again, back at home, someof the things that you can do
is really really I hate to sayit because it's a really taboo
subject in the lipidema world iswatch your sugar Intake, your
free sugar intake, and that willhelp reduce the inflammation in
(20:59):
your body and then you can getto what's what the actual
disease tissue is that's left.
If you're able to get down tothat Right.
And I can flame up if I have areally bad flare.
Stress is my trigger and I'vehad times where my leg actually
doubled in size before becauseof a super stressful situation
and then so getting theinflammation out is way harder
(21:21):
than just not getting inflamedRight.
And I tell women all the time tolike if you're traveling and
you're you swell up duringtravel, you need to be wearing
compression, but you also likeget in the pool, get in any body
of water you can, and I wrote abook about aqua therapy for
lipidema and lipidema and I dida ton of research on it, and one
(21:42):
of the things that I learnedwas about hydrostatic pressure.
So the deeper you go in thewater, the more pressure is
pushing down on your body and ithelps to squeeze that fluid up
and out of your body.
So if your feet are at thebottom, they're getting like 87
pounds.
I'm going to really simplifythis 87 pounds of pressure at
the bottom and then like 75, 65,55.
(22:02):
So there's more pressuresqueezing that the evil juices
out of your leg, right?
So get in the pool and that'sreally hard because nobody likes
wearing a bathing suit, right.
But I'm like dude, wearwhatever you want to.
I see women at the YMCA whocome in.
Just, they wear leggings andT-shirts and that's okay.
The pool does not care, itreally doesn't care.
(22:24):
Wear whatever you'recomfortable in, but get in water
as often as you can, because itwill really help get that
inflammation out.
And the reason I'm just going tokeep going for a second here,
the reason inflammation is sobad is because if you get all
inflamed, that means that yourlymphatic fluids and stuff are
just staying down there and yourlymphatics are like the trash
(22:45):
can of the body.
So if you have stagnant fluidthat's been down in the bottom
of your legs for a really longtime.
What happens is it develops, itleaves proteins behind and it
develops into fibrotic tissue,which that is like now, part of
you, right?
So even next time, if you getuninflamed, you've still got
more tissue.
And that's what happened to meis my leg, especially my left
(23:07):
leg, got so large that my calvesand ankles were rubbing
together when I walked.
And when I went into thesurgeon I had this like piece of
calf that was.
It would just move, like oneunit.
It was had been fibrotic andinflamed for so long and he
really worked.
I mean, he came out of theoperating room and he was just,
(23:29):
and he was like I really had towork to get that out and I was
like thank you so much, becausethat stuff hurts, you know.
So anything you can do to getthat inflammation out of your
body is super important and justkeep it out.
So compression, swimming, sugarthose are some of the top three
things that you can do, youknow.
And then take care of your skin, don't it?
Don't like Walk aroundbarefooted outside and do
(23:53):
anything that would like giveyou more Potential of getting an
injury on your leg, like youreally need to make sure your
skin stays moist and cared forand is in good health, and watch
for sores, because If you startgetting a sore, it takes a long
time for stuff to heal.
So yeah, there's a lot that youcan do on your own.
Before you ever see a doctorand many women never see a
(24:13):
doctor about it Because they'vehad so many bad experiences with
fat shaming and stuff they'redone.
They don't go for mammograms,they don't go for pap smears
anymore.
They just don't go to thedoctor.
So take care of yourself,whatever you can do.
Danielle La Rose (24:28):
So good.
Thank you so much for sharingall of that.
Um, oh my gosh, I have so manythings that I just want to talk
to you about.
So, okay, let's do one moreQuestion for you to dig into and
then we'll go to some funquestions.
So, um, you know, you mentioned, obviously we've talked a lot
about physical Right, like howthis has affected you physically
(24:49):
, how it affects other peoplephysically, and obviously we've
talked about the emotional,mental part of it as well.
But for you, what did you findreally helpful For your mental
health going through thisprocess?
Because obviously, like yousaid, there's so much shame
around it, there's so much youknow, just again, like your body
and Appreciation and all thethings.
(25:09):
So how can you, how did you?
And then how can other peoplereally Take care of their mental
health when it comes to this?
Susan O'Hara (25:16):
Yeah, absolutely so.
I think a lot of women I I wantto cite some information first
like suicide attempts are a lothigher with women with lipidema.
Disordered eating is very, veryhigh for women that have
lipidema and obviously formyself too.
I'm, I have been a cycle dieter, you know, and I made up the
decision once I learned aboutthe disease and it made so much
(25:40):
sense for me because I've hadthat van twice, right, I've had,
I've done all the things that'slet.
I mean, you know, you hear thatstory all the time.
I've done all the things, um, Idecided I'm not doing that crap
anymore, like I'm not gonna letmyself feel guilty about eating
food anymore.
So, um, I for me, I made thedecision that, um, I'm gonna
(26:03):
just live, you know, and thathelped me out a lot, because
getting rid of that guilt, justshedding the guilt, help me so
much feel like I deserve to goto this party and have the same
stuff everybody else is havingand not go home and feel like,
oh, I need to do whatever we do,right, that's unhealthy, um, so
(26:25):
, so just changing thatmentality helped me a lot and,
honestly, the first time thatthat lady shared her picture
with me and I started watchingvideos and seeing other women
that had shared their stories.
It Did something mentally forme that just changed me.
I was like, oh my gosh, likeI'm not the only one and I need
(26:46):
to quit hiding my body, you know.
So the support that I got fromthe online community really,
really helped my mental healthand, honestly, now the work that
I'm doing helps my mentalhealth too, because you find out
like You're helping someoneelse get through that same point
that you were.
You know, um, I have a friend,april sleuther.
(27:07):
She runs a facebook page andshe is Really smart in the
psychology area that's what herdegrees and stuff are in and she
has journaling prompts that sheput out there for us and she
asks these insightful questionslike what are you doing to care
for yourself today?
And you know just whatever.
And going through Her workbookand hearing what other women are
saying too, because we shareonline what we're talking about
(27:29):
has been helpful.
So I think the the support fromthe online community has helped
my mental health quite a bit.
And then I'll tell you one otherthing Is and I'm going to show
you a page from my book, becausethis will make more sense here
in a second.
Actually, I'll show you thecover of my book, so can you see
that's me on.
This is my aqua therapy bookand I'm wearing a bathing suit
(27:51):
and I Um, let me see if I canfind one that's got good
pictures, big pictures, in it.
Um, okay, so this is me in thebook.
It's filled with pictures of mein my bathing suit, right?
Yeah, I love that and um, it's alonger bathing suit that goes
down to my almost down to myknees it's called an aquatard.
I went out and bought thesebathing suits and I decided I
(28:14):
love the water, I love the wayit feels to be in the water.
I just it's healing all thatstuff right, and for years I
Kind of like was easing out ofthe water.
I started wearing men's boardshorts and then I had taken my
Girl Scouts to Savannah, georgia, and we were at Tidy Island and
that day I decided I wasn'tgonna get in the water because I
didn't want the girls to see mein my bathing suit.
(28:35):
Oh, I wish I could turn backtime To that, because that
message that I told my girls wasnot the right one to be giving
to preteen women, you know.
So now I wear this bathing suit, I go to white water, I go to
where I go to the beach.
Oh, I go snorkeling.
I've been all over the worldsnorkeling in these paintings,
right, and the second I put iton I decide I'm here to have fun
(28:59):
, I'm never going to see thesepeople again and I'm just doing
it, right.
And what I've noticed?
Last I was in Mexico not toolong ago and I was out there.
I always get questions aboutthe bathing suits, right?
Um, I saw other women who hadbeen covered up over the course
of the day.
It was either the alcohol at mrSanchez beach club or it was
(29:20):
the influence of other women whowere out there just having fun,
you know, taking off thosecover-ups and just going out in
their bathing suits and having agreat day.
So it helps me mentally when Isee other women who were doing
that too, because it's like boom, we're a force to be reckoned
with.
You know, we have a right to bein the water just as much as
everybody else and, believe itor not, I think there are a lot
(29:41):
fewer skinny minis than thereare out there.
Then there are women who aremore curvy and who've had kids
and everything else.
So why not enjoy what the earthhas to offer to us, you know?
So all of those things havehelped my mental health and, um,
honestly, I've been onantidepressants for ages and I'm
not getting off of them becauseI don't want to know.
(30:01):
I mean, that's okay and mentalhealth is health, you know.
Yes, so anything that you cando to to improve your mental
health, do it every single day,do it.
Danielle La Rose (30:13):
Yes, yes, oh my gosh, I wanted to stop so
many times and say, yes, girl,yes, I'm sorry I have all the
snouts, because there's so manygood things there.
It's like, yes, just so much,so much goodness.
And again like the powerfulmessage you know again is take
care of yourself and surroundyourself with people, right.
If you're on social media andyou see people and things that
trigger you, that don't make youfeel qualified and beautiful
(30:38):
and fabulous, then there's anunfollow button right, and
there's communities where peopleare, and there are people you
know that you can follow ingroups, that you can be part of.
You know, and I think it'sreally important also to share
that.
You know you're sharing aboutLebedema, right, and you know
your body and women that looklike you.
(30:59):
But at the same time as you'retalking, I'm like I have felt
those things right.
I've covered up on a beach.
I've been wearing shorts sincesixth grade because I have a lot
of cellulite on my legs and Ithought that was ugly and it was
bad and I should never letanyone see I was on the beach
with a cover up.
Or I went on trips where Ididn't go into the water because
I didn't want anyone to have tosee that right, and I worked
(31:24):
really, really hard on that.
So you know, it's an importantreminder that, regardless of
your body shape, your body size,the disease or whatever your
body you're going through, thatyou pick out as the flaw because
our society has told us it's aflaw.
Like, your feelings are valid,right and we can all relate and
(31:45):
connect to that message.
So I just want to thank youbecause, as you're sharing that,
you know, if I were to see you,you know, at the beach, I'd be
like, yes, girl, right, and thenbe like what am I doing?
Why am I sitting here, notgetting in the pool?
You know, like, if she's doingthat, I can do that right, and
so it's just so powerful,everything that you're doing,
thank you.
(32:05):
And also I want to just alsocall out because a lot of this
is, you know, we're sharing.
You know, if someone it youknow, comes to your social media
and they see your page andthey're like I think I have that
I need support with that.
That's one thing I also want tocall out.
If you are someone who has neverheard of this before like me,
right, and a lot of people andperhaps you're someone who does
(32:28):
you mentioned it before, so I'mgoing to use this as an example
of someone in a wheelchair,right out of store, and you
instantly go to that thought of,like you said, they're at home.
They must be at home all thetime eating their fried chicken.
That's it.
This is a.
This is a time to checkyourself right, that you don't
get to judge the way that peoplelook and assume what is
(32:48):
happening behind the scenes,because we have absolutely no
idea whether someone is verysmall and you're like, oh, they
must be in great shape, youdon't know what, you don't know
what they're going throughbehind closed doors.
And the person who is larger,you don't know what's going on
behind closed doors.
So we all get to take thesecond to say shut up, close,
get those thoughts out andinstantly ask ourselves could it
(33:11):
be something else?
Right, and number one, it'snone of our business.
But also can we choose to havemore empathy and think, oh my
gosh, I heard that podcast aboutthat woman who has that and
it's actually a disease, it'snot actually xyz, right, and I
get to shift those thoughts.
So I just think that's a reallyimportant point to call out to,
(33:31):
because many people have beenin that situation and I think
this is a really important thingto remember and I appreciate
you for for bringing that up andand calling that out.
So, okay, are you ready for somequick, fun questions so we can
get to know you ready?
Yes, okay, because we've doneall this talk, which, again, I
could talk to you for hoursabout this, because I'm obsessed
(33:52):
with learning about bodies andunderstanding people's thoughts
and how they go through things,but, at the same time, we
literally just talked about howwomen are so much more important
than how they look.
So, with that being said, Iwant to know more fun, random
stuff about you.
All right, random, funquestions.
Okay, you can.
I don't believe in cheat meals.
We have meals, so what is?
(34:14):
But what is one of yourfavorite meals that, if you can
only have one for the rest ofyour life, one more meal, what
would it be?
Susan O'Hara (34:20):
Okay, so it's chicken fried steak, mashed
potatoes and gravy, green beans,homemade rolls and probably
some delicious dessert chocolateinvolved.
This is what I'm going to say.
Is that my?
I actually have a blue folderunderneath my desk that says
when I die, it's got great bigletters on it and it's got all
the insurance stuff andeverything, and it has
directions to my family that Idon't want a funeral, I want a
(34:43):
bonfire and everybody there musteat chicken fried steak and
chocolate cake.
Danielle La Rose (34:48):
Oh my gosh, this is the best answer I've
ever had on the podcast.
I'm obsessed with this.
That is genius.
Now I need a folder that tellspeople what to eat after.
And your meal sounds amazing.
I mean, I'm here for that meal.
Um, okay, so I will.
I already know the answer tothat one question we've talked
(35:09):
about a lot.
Okay, you can only watch one TVshow for the rest of your life.
What do you choose?
Susan O'Hara (35:13):
Oh my gosh, you're going to think I'm such a dork.
Probably Ted talks.
Danielle La Rose (35:18):
Okay, not a dork, but it's a different one.
Susan O'Hara (35:23):
I love them.
I know I love any documentaries, anything about other people
and their success and stuff likethat, and I do.
My husband will walk in andhe's like what are you watching?
And I'm like Ted talks.
Okay, bye, I'm out.
Danielle La Rose (35:38):
I love that.
That is so good.
Okay, what?
Who is one powerful woman thathas inspired you in your life?
Susan O'Hara (35:48):
You know Oprah Winfrey, I will tell you and I
know that's such a common answerbut I love where she came from
and what she did with her lifeto get to where she's going.
And then I like how she usesher platform now for good for
all of humanity.
I think it's wonderful.
Also, just as a side note, Icopycat a lot of her outfits.
You know she's paying somestylist a ton of money and I
(36:11):
love the way that she dresses ontop of all that other stuff too
.
I just think she holds herself.
I think she feels aresponsibility to use her life
for the best good, and I lovethat about her.
Danielle La Rose (36:22):
So good.
Okay, so that leads me to mynext question.
What is your favorite piece ofaccessory or an outfit or
something of yours Like yourabsolute favorite?
Susan O'Hara (36:34):
Yeah, so I will tell I wish I had it with me.
My dad died when I was 19 yearsold and he was a big man I get
my size from him and he was sixfoot six.
He had hands that were likethis to my right, and when he
died he had a wedding ring thathad been resized many, many
times over the years and it wasa size 16, white gold.
And whenever he passed away mymom kept the ring for a long
(36:58):
time and then finally I took itfrom her, thinking okay, I'm
going to do something with thisring.
And there were time of course,we all have hard times in life
Whenever I just felt like I needmy daddy and I would take that
ring out of my safe and I wouldsleep with it on my hand just so
that I could feel him beingclose to me.
So a few years ago, my sisterand I took that ring to a
(37:18):
jeweler and we had the gold cutin half and I had a ring that I
bought giant, ridiculous, gaudy,tacky, sparkly mosa knight
stones on top of it, and I hadthe jeweler make me this ring
and I only wear it for specialoccasions because I feel like
it's so treasured, but it's sobig and ridiculous that it might
(37:39):
attract a mugger someday.
And they can have the stones,but they can't have the gold,
because the gold is precious tomy heart.
So that is my absolute favoritething, and when people
compliment me on it because youcan see it from across the room,
it's just ridiculous, right,and I'm like it's mosa knight,
but that's not what's importantabout the ring.
So that's my.
I just feel like it was on mydad's hand for all those years
(38:00):
and I love it so much.
Danielle La Rose (38:01):
Mm, that is so good.
I love that.
What would you say are your toptwo strengths?
Susan O'Hara (38:09):
Courage and confidence.
And, of course, I'm going toget back to Girl Scouts.
Girl Scouts has this themebuilding girls of courage,
confidence and character thatmake the world a better place,
and I truly believe that a lotof the things I learned from
being in Girl Scouts and gettingto lead activities and plan
programs and do all of thesethings that were like really
(38:30):
cool experiences Did give me theconfidence to speak up and then
the courage to be able to belike I'm going to be myself, you
know.
So I definitely think those aretwo of my strengths.
Danielle La Rose (38:43):
I love that.
Okay, what does it mean to youto be pretty powerful?
Susan O'Hara (38:50):
So be pretty powerful.
That's really interesting.
So I will tell you.
If you watch my social mediastuff, you will see days when
I'm not wearing makeup.
I do lots of posts from mypajamas in this chair, where my
hair is jacked up or whatever,and I still feel like that is
pretty powerful because it's sorelatable to other women.
(39:12):
I mean, there are days when youjust can't, I just can't put
foundation on or whatever.
But finding my voice, no matterwhether I'm decked out for
photo shoots or whatever, I'mreal, I'm in the bathing suit,
I'm jumping in the pool.
I have power by my willingnessto share and speak like my real
(39:34):
self right, like who I really am, and I think that that's what
it means for me.
Danielle La Rose (39:42):
So good, yes, okay.
What is one daily or consistenthabit that helps you step into
your confidence and self-love?
Susan O'Hara (39:51):
Wow, that's interesting.
I would think so, learningevery day I read.
I've always got by my deskstacks of books.
I go to the library and I get10 at a time.
So I think that it helps me tofeel like more legitimate and
this is probably some of thesome weakness in here too, right
(40:12):
, but I feel like, with myeducation and what I've learned,
that it helps me to be able tospeak more powerfully and like
with more authority, and so Itry and learn as much as I can
and just have a moment where Ican think through the some of
the things that I've learned andhow I might be able to use them
, and it really does improve myconfidence.
Danielle La Rose (40:32):
So good, yes, I love that.
Okay, so I'll finish with thisone.
If there is one powerful pieceof advice that you could leave
for little girls or women in theworld, what would it be?
Susan O'Hara (40:48):
It would be.
Think about the long term.
A lot of times we get hung upin how I feel right now, and it
really is that.
You know we hear these quotesall the time.
Will this matter in five years?
You know, what really mattersis the love that you share, the
people you spend time with, butthe longer term effects of
(41:12):
things.
So if you're in a funk rightnow, or you're feeling like self
conscious, or you had a bad dayand somebody treated you badly
or whatever, think about whatyour long game is.
And it's so hard to understandthat when you're a child,
because you really are in yourown little world.
But if I could go back tomyself as a little girl and
(41:33):
think through like girl, allthese things are lessons that
you're going to need to helpmake you stronger for a longer
term.
You know it's just think alittle bit further out than
where you are.
You know, don't just focus onthe now and your feelings right
now, because feelings are goingto come and go, you know.
Danielle La Rose (41:52):
So good, all right.
Where?
Because everyone's going to beobsessed with you like I am now.
So where would you like peopleto go find you and hang out with
you to learn more, get supportor just simply just be in your
presence, because it's inspiring?
Susan O'Hara (42:06):
So I'm on legs like minecom.
I've got all the socials and Ireally am having a lot of fun
with my YouTube channel, whichit's, you know, youtubecom slash
, see, slash legs like mine,really easy to find and I have a
getting close to 200 videos outthere that I've been doing for
the last couple of years.
Instagram is a lot of fun rightnow for me and Twitter is
(42:28):
probably slowing down quite abit, but that YouTube channel,
I'm telling you that's where youcan if you want to see the real
Susan YouTube channel, becauseyou'll see what's on this side
of my office that you knowdoesn't ever show one just like
that.
But yeah, legs like minecom.
Absolutely all of my books areon Amazon.
I have four books out thereright now and you know I love
(42:51):
for women to, especially myfirst book, jeans on a beach day
.
It is a book that I am morethan willing to send to doctors.
I write personal notes in themall the time.
It's got links to the standardsof care and diagnostic criteria
and stuff like that.
So if you have a doctor who isjust not hearing it but you want
to continue your relationshipwith that doctor, send me their
(43:13):
address and I will.
It's not a way, it's not a goodthing.
I'm just like hey, you've got apatient who might have this.
She asked me to send this toyou.
I'm marking up the link to thestandard of care so that you can
educate yourself on it.
Feel free to drop me a line andI will be happy to send them
and authors copy at my expense.
Danielle La Rose (43:30):
Oh my gosh, that is amazing.
How brilliant to like reallymake more impact and and just
truly help in a very powerfulway.
That's amazing.
Thank you so much, susan.
That's awesome, so I will.
I will also drop all the linksto all your places in the show
notes so people can just clickand go, so there's no trying to
(43:53):
find stuff and being confused ifit's you or not you.
I got you any last words thatyou have that you want to share
that maybe you haven't yet.
Before we say goodbye.
Susan O'Hara (44:01):
Yeah, absolutely for women who are struggling
with lipidema or anybody issues.
Right, don't give up.
Do not give up.
Don't ever spend one day whereyou're like I'm not getting out
of that bed because the oneturns into two, turns into a
week, a week turns into a year,every single day.
Get up, move in some way.
(44:22):
Do the best you can with whatyou have today.
If it's you know, yesterday youwere Like not even caring for
yourself.
Do one thing to care foryourself today.
Just do one thing so that youcan keep forward progression in
your life.
Danielle La Rose (44:39):
My drop and, with that, my friends.
That is the Susan who is soamazing.
Thank you so much today, susan,for being here and sharing all
of this incredibleness with meand with my friends.
You are simply amazing.
So thank you so much and,friends, I will talk to you on
the next one.
(44:59):
Bye, bye.
Susan O'Hara is an author, a social media
influencer, a model and footwearcollection owner.
Everything she does is to helpwomen.
Yes, with rarely diagnosed,Help me here.
Susan O'Hara (00:13):
Lippidema.
Danielle La Rose (00:14):
Lippidema.
It affects only 11%, which isstill a big percent of women,
and can be debilitatingphysically and mentally.
Susan has changed.
The women with Lippidemia seethemselves by sharing her
outfits and activities onlegslikeminecom and homegirl you
are.
When I see your pictures, youare just so full of energy.
(00:37):
I just want to be surrounded byyou, and I've never even met
you before, but your outfits andyour smile, just everything
about you just exudes joy and,just you know, really like a
safe space.
So tell us more, susan, abouthow you got here, absolutely.
Susan O'Hara (00:54):
So before I started doing legslikemine and
all that kind of stuff, Iactually was a government
manager for a long time, like 28years, right.
I worked for the FAA.
I loved being able to helppeople and being in a position
where if somebody needed help,like mentoring and stuff like
that that I could do that.
(01:15):
You know well, a few years agoI started having problems with
my legs and they had developed.
The Lippidemia had actuallydeveloped 22 years ago after I
had my son, and I just thoughtthat's how it is.
You know, that's just how it is, and I had a foot problem.
I'm a Girl Scout leader.
I've been in Girl Scoutsforever and stuff, and I was
taken by Girls to New York City.
(01:35):
This is a really long story.
Sorry about that.
Danielle La Rose (01:38):
I love.
No, we are here for this.
Tell us the story.
Susan O'Hara (01:41):
I was taken by Girls to New York City and I was
like man, I've got to getsomething done about this leg
because it's killing me.
And you know how, when you'rein New York, you just walk and
walk and walk right.
So I went to a foot bracespecialist and she looked at my
foot and she goes who's treatingyour lymphedema?
And I was like my what?
I'd never heard the term before, right, and so I got the brace.
(02:02):
I went back home and I startedgetting on the internet like
crazy.
I took some pictures of my legsand, yes, I did have lymphedema
.
One leg is bigger than theother.
But I was posting on someforums and stuff and a lady was
like check this out, your legslook just like mine.
Do you have a lipidema?
You need to go find somebodythat can treat your lipidema.
(02:22):
And I was like bingo and thankgoodness for the internet.
So once I got that word, evenheard the word for the first
time, I went out and did allthis research and it was really
really hard to find informationabout it right.
So I went and switched myinsurances, I went and had
surgery and stuff.
And as I'm coming out ofsurgery, literally you know how,
(02:43):
when you get out of surgery andyou're clutching onto your cell
phone for dear life becauseit's the only comfort you have
when you come out, I was like Ishould video this and share with
other women what I'm goingthrough.
And so that morning, literallythey're wheeling me from the
surgery center to like thenursing facility where they're
going to keep me for a couple ofdays.
I turn on my phone and I'm like, hey guys, this is Susan, I
(03:09):
like that.
And so if you go back to myYouTube channel, you'll see the
very first videos are of merecovering from the first three
surgeries that I had, and it'slike the good, the bad and the
ugly.
Like that first one, my eyesare all swollen up and
everything you know and I'mtalking about like what it's
like to go through all thissurgery and everything and the
post care, and then like themental things that are going on
(03:31):
with me too, as the first time Isaw my legs after they had been
reduced quite a bit and stuff,because it was a big deal, you
know.
So I decided after I oh, Iforgot to tell you this when I
was in the, in the recoverycenter, I was getting a thousand
DMs and emails a day a thousand.
I did not rest the entire time.
(03:54):
I was in recovery.
I went off to a hotel by myselffor a few days and I spent the
whole time just helping people,right.
And so I was like I have to dothis, because the reason I found
out about my situation isbecause someone was gracious
enough to share a picture of herlegs with me, right, and it
literally was the first time.
I was like I'm not a freak, I'mnot a freak of nature, right,
(04:16):
and I as I dug into it.
So I started legslikeminecom.
I just started logging all mystuff and sharing everything and
what.
I was able to reduce thethousand messages a day by
answering frequently askedquestions.
So if people would ask me aquestion, I'd be like boom,
here's a blog, boom, here's ablog, you know.
And it helped me out a wholelot.
(04:36):
So that's why I started all ofmy stuff is because women are
desperate for information aboutthis.
This disease is so freaky andweird and you really do.
You feel like not a real womanwhenever you're going around
alone all this time, and thenall of a sudden, they see
somebody like me.
My legs do look just like them.
(04:56):
I'm a bigger girl still and allthat stuff, and I'm like I am.
I am living my life.
I'm going to go do all thethings that my body allows me to
do and I'm going to show youthat you should be getting your
butt out of bed or off therecliner or whatever, and doing
all of it because you've onlygot the one go do the things
right.
So, anyway, that's the longstory.
That's how I got here.
Danielle La Rose (05:17):
Yeah, it's, oh my gosh.
I literally have goosebumpsright now on my arms just
thinking about the power Because, like you said, you know it's
about living your life.
You know, that's the messagethat I hope I put out into the
world as often as possible,right Like, regardless of our
bodies if our bodies areallowing us to move like that is
what is most important.
(05:37):
Right Like doing the things sookay, so tell us a little bit
for those of us listening,because you know, like you said,
11% of women have this.
So can you share with us, thoseof us who aren't familiar, so
we're aware of what this is?
Susan O'Hara (05:52):
Yeah, absolutely so.
Lipidema is a fat disease.
It's painful, so a lot ofpeople realize they have it.
Whenever their cat walks acrosstheir legs, they might be
laying in bed or whatever, andyou're like, wow, why does it
hurt when my cat is walkingacross my legs?
Even ladies who are smaller, soit can affect anybody, any
woman of any size, and it startsin either like times of
(06:16):
hormonal change, like puberty,pregnancy for me that's when it
happened menopause, that's whenit triggers its ugly rears, its
ugly head, right.
So they feel this pain in theirlegs and their arms and
sometimes in their bellies.
It can affect all over yourbody, right, but legs are the
most normal place for it to hitEasy bruising.
So there have been so manytimes.
(06:38):
I traveled for my career for 25years, right, and I always said
I had mystery bruises when I gotoff of the plane, like I don't
know what happened, but I've gotthis monkey bruise on my leg
and oh, by the way, it lastedfor four weeks, right, wow, and
so that.
But then.
So those are some of the othersymptoms, but what you see is a
lot of the ladies who aresmaller up top and then bigger
down bottom, and they try andtry and try.
(07:00):
They've had lap vambi-aryatricsurgery, they've been on all the
diets.
You see them at the gym.
They just aren't losing thatweight that's in the bottom part
of them.
So and then, as it progresses,what ends up happening is we
form these like nodulesunderneath our skin, just
subcutaneous, and for me I hadthem behind my knees and in the
(07:20):
middle part of my knees thatfelt like golf balls, like you
could actually feel the fatcells that had gotten so
inflamed that they felt likegolf balls.
And then, as it, if itprogresses even further, it can
go to where your legs startgetting to be like the size of
barrels.
I mean it gets really, reallybad for people that it
progresses in pretty badly.
So, but we've all seen theladies that are built like me A
(07:43):
lot of times like I don't knowif you can see this or not, but
if you look at the side of myarm you can see where it's kind
of cuffed right here, and a lotof ladies it'll happen at the
bottom of their ankles and theirwrists and it can get really
big right here.
But their hands usually andfeet usually are spared from it
Once it develops into anadvanced stage, a stage three or
four.
(08:03):
Then we start getting lymphedemain our limbs and stuff too, and
that's whenever you startseeing people who have, like
skin issues and you know, reallyloss of mobility because it's
gotten so bad.
So that's what lipidema is.
But I'm talking millions ofpeople.
I have followers in Australia,new Zealand, the UK, canada, I
(08:25):
mean everywhere.
It happens to everyone, youknow, and it only affects women
for the most part.
Danielle La Rose (08:30):
Very interesting.
Thank you so much for sharingthat.
You know, I think I always it'sso interesting to me Our bodies
are the most magical machines,right, like they do so many
crazy cool things, but they alsodo really weird things and
different things and so many ofus never learn, like we're not
learning about how our bodiesactually function and what
(08:51):
different things are.
And, just like you said, youknow needing to find someone on
the internet to say, hey, Ithink you might be experiencing
what I'm experiencing, like howpowerful is that?
You know, and that's exactlywhat now you do for women.
So what are some of the?
You know I love the word power.
So what are some of the mostpowerful?
(09:12):
You know conversations andthings that you've experienced
with some of the women thatyou've worked with, and also
with yourself over the pastseveral years that you've been
doing this.
Susan O'Hara (09:22):
Yeah, I'll tell you so.
Not too long ago I went toPotsdam, germany, on to a
conference that was mostlydoctors, but there were some
patients that had lipidema there.
It was the first lipidema ofWorld Congress.
So the research on this isrelatively new still.
Just to sort of take it back alittle bit, it was discovered in
the early 1900s and then sortof set aside because women's
(09:44):
diseases typically aren't theones that are researched first.
Right, and the last five yearsmore than half of the research
on this disease has happened,and so the doctors worldwide are
just now starting to gettogether and have consensus on
like what the symptoms are, thetreatments, blah, blah, blah.
Right, they still don't knowwhy it happens, but anyway, I
was in Potsdam and every time Igo to a conference now it always
(10:06):
blows my mind, right, becauseI'm just like.
I'm just Susan.
You know you're in your roomwhenever you're doing your
podcast or your work or whatever, and you don't realize that
when I hit submit on that button, especially on Facebook, boom,
250,000 people just saw my post.
Like you, forget about that,right, I'm hearing my jammies or
my big suit or whatever, I'mdoing so anyway.
(10:28):
So I go into Potsdam and there'sthis lady there named Lisa and
she is like high powered CEO ofa big organization and stuff,
and she is fangirling on me sohard Hi, lisa, anyway.
And I'm like so tell me what,tell me your story and stuff.
And she said, susan, I did notknow that as a woman who had
(10:49):
legs that are deformed.
And that she said I just hiddenmyself for so long.
And when I saw that outfitsthat she wear, the beautiful
fabrics and the way that youstill fix your hair and put on
makeup and fake eyelashes andall that stuff, she was like
you're the first person thatever gave me permission to be
beautiful again.
And I was like, oh my God, Imean literally.
(11:11):
There are so many times when Icry.
I'm a crier, me too, I know forsomeone to tell me that, like
you had to get permission tofeel like you could be beautiful
, and I was like that is amazing.
And now, and so I have to tellyou, the whole time we were at
the conference, she was wearingthe most gorgeous clothes, like
really pretty fabrics and allthat stuff, and you could just
(11:31):
tell that she was like damn it,I am going to be pretty, I'm
going to do the best I can withwhat I have right now, and so
that was really powerful for meand it's encouraging for people
like me.
Like you're working in thislittle room, right, and you
forget that people are likepaying attention to how you
project yourself, you know.
But I have to tell you someother ones that have been really
(11:54):
, really powerful for me.
And so I swim.
Swimming is like the bestexercise you can do for this
disease, and I'm always videoing.
You know, if I'm doing anything, I'm videoing.
I pooped, let me take pictures,you know.
So, anyway, I'm not thereswimming.
I'm doing a video for legs likemine, and I get a thing that
pops up and it's like do youhave a second to chat?
(12:15):
And I just had that feelingwhere I was like I should
probably take this.
And I took it and it was a ladywho's a stage four.
So she's at that point whereshe's her weight is too heavy to
be on hospital tables, and sothe doctors really, when you get
to a certain point they're kindof done with you, like there's
nothing they can do, and soyou're kind of just stuck there.
(12:36):
And those are the ladies thatreally speak to my heart too,
because I just feel so terribleand I'm working on trying to fix
that right so that becausethey're the ones that need the
help the most, they're stuck inbed, blah, blah, blah.
So anyway, I take this call andshe is despondent, like she's
one call away from calling 988for suicide support.
And we talked a lot for mywhole swim.
(12:58):
I'm swimming the whole timetalking back and forth, and by
the end of the call she wasfeeling a lot better about her.
You know who she was and whather purpose was in life and all
that stuff.
But those mean a lot to mewhenever you're like you might
be the only person who's willingto just listen to someone, and
it's not.
I mean, obviously it's not notpart of my job to do that, but
(13:20):
it is part of my calling to dothat, to be there for that one
person who just I mean theyliterally feel so, so alone.
So those kinds of callsabsolutely speak to me,
absolutely and I just cannotimagine now my life not doing
this.
You know, it's just so cool.
Danielle La Rose (13:40):
It is so amazing what you're doing and I
appreciate that you say thatyou're a crier, because I don't
know if you saw it, but I starttearing up because you know it
is.
You know, just like you say now, woman with wearing the clothes
and everything.
You know we have this.
Our society is so f'd up, youknow, with identifying what
beauty is right, like we havethis, these beauty standards
(14:01):
that are just such BS that, likeyou know, none of us, no matter
what you look like, no matterwhat you're going through, you
can never achieve that.
And you know we just put thispressure on us that if we don't
look that way, then you know weare supposed to cover up, we are
supposed to hide, we aresupposed to, you know, just wear
.
I love black, so I wear allblack all the time, but we're
supposed to wear all black,right and just and be just.
(14:23):
You know, try to make ourselvesas small as possible.
And so you're giving women thatpermission and not that they
need it, because they don't needpermission, right, like we all
have the permission, but youjust, standing in your power, is
giving them the power to belike okay, if she can do that,
then I can do that, and that isabsolutely remarkable, and you
(14:46):
are making such a huge impact inthe world, and so let me ask
you this so what are some of thethings that you share with
women, right, if they are, youknow, at that really hard time?
What are some of the likethings that you can say to help
them?
You know, not move past it, butget through it.
Susan O'Hara (15:05):
Right, right, I think one of the things that's
interesting, one of thequestions I ask women a lot is
who are you, besides having achronic condition, right, like,
who were you before you retiredon disability or whatever?
And you wouldn't believe thestories.
I mean, it's women from everyclass, every education level.
You know, and I love to hearlike you know, I used to be a
(15:27):
conference planner or I've gotone friend, francine, who she
used to be a costumer onBroadway and she tells these
crazy stories about all of thepeople she's met, all the shows
she's worked on and stuff, andyou would never know it because
the only thing we had inconnection was our lipidema.
You know, there are women nowwho, yes, they were in the
(15:49):
corporate world before andretired for whatever reason,
right, but now they run theseat-home businesses that I didn't
even know about.
Patty Cornute she runslipidemafitnesscom and she is
beautiful and she does theseamazing things that my body just
is like no, I'm not going to dothat, but she's an artist and,
behind the scenes, like I wentand stalked her one day on Etsy
(16:12):
and different websites and stuffand I was like you make amazing
art and I would never know that.
So to just hear like I have morevalue than this lady who's got
these big legs, you know, likeI'm a valued human and here's my
family, here's my, you knowwhat I've done with my kids and
stuff like that, to get women totalk about who they really are,
is just so powerful, you know,because sometimes we, whenever
(16:36):
you see especially somebodywho's in advanced stages and
they're at the mall in thatwheelchair or whatever, that's
all you see and you make theseassumptions like, oh, she
probably is at home eatingbuckets of fried chicken at a
time and that's not the case.
So to know like she's a valuedperson is just so powerful.
And people, all people reallywant is to be heard.
(16:57):
They just want someone tolisten to them.
So asking questions about whothey are is the best thing that
I've ever learned from all ofthis.
Danielle La Rose (17:05):
Mmm, mmm.
So good, because again, womenare just so much more powerful
for lack of better word just sopowerful and everything that
they do.
And again our society justtakes us down to one thing of,
just well, how do you look right?
And so how fun it is to get topull that out of women, to be
like what are your strengths,what are your passions, what are
(17:27):
you doing?
And you know I talk a lot aboutyou know I don't want you to
think about your.
You know body positive is great, but I don't really want you to
think about your body anymore.
I want you to think about itless and I want you to live more
.
And so, like that's what you'redoing is helping them realize
there's so much more you know tolife.
Obviously, this is painful andlots of things happening.
(17:48):
So it's not just about, youknow, appearance but, you know,
just reminding ourselves of thatit is more than just how we
look, that it's all those otherimportant things about us.
I love that.
So what would you tell a womanwho right now perhaps there's
someone listening that's like,oh, wow, like I never thought
that that's what this could befor me.
(18:09):
I've been struggling, I don'tknow what would you tell that
woman?
Like the first few things, liketo help her get moving in the
right direction, to help herwith that.
Susan O'Hara (18:21):
Right.
So I mean, I think one of thethings is, if you think you have
it, don't wait for a diagnosisto start conservative therapies.
So, like 80% of the stuff thatyou can do is the stuff that you
personally have to do, not adoctor, not a surgeon, whatever
Right.
So you can buy off the shelfcompression and it's not going
to harm you unless you have somecontraindicated things, like
(18:42):
around heart disease and youknow vein things and stuff like
that.
So obviously you want to talkto your doctor first.
But what I tell women is, ifyou want to get an actual
diagnosis, you need to come intothe doctor's office prepared to
be sitting with a physician orclinician who has not had
exposure to this before.
So it's not required in medicalschool that doctors learn about
(19:06):
this, and right now in theUnited States only cardiology
and dermatology have questionsabout the Padema on their exams,
so they're not educated aboutit.
So, one, you're going to needto know that you're probably
going to have to educate yourdoctor about it and two, you
need to and you've probablyexperienced this anyway need to
just have the awareness that alot of doctors will diagnose it
(19:29):
as obesity and some doctors havefat phobia, right?
So they don't want to spend thetime that's needed to deal with
a patient that's overweight.
But if you're like me and Iwalked into my doctor's office
with all this information fromthe internet and she was really
open to it and she was like I'venever heard of it.
But let me look it up, let's goahead and send you, you know,
for full blood work to make sureit's not something else.
(19:51):
And she was like I can go aheadand refer you to a lymphoedema
therapist.
So you do want to go to yourdoctor, but just anticipate that
you're probably not going toget that diagnosis.
And I'm going to pause for justa second, because the Lipidema
Foundation did a study not toolong ago, a survey of about
seven or 800 women, and theydiscovered that women start
(20:12):
getting their symptoms reallyearly in life, some at the age
of 12 and some in their 20s and30s, but the average age of
diagnosis isn't for many yearslater, like 47.
So women go with these weirdsymptoms all this time and then
they get this diagnosis and alot of times they have
progressed too far or, you know,really really far.
So that's what you're dealingwith is misdiagnosis for a long
(20:36):
time Right.
So if they can just come inwith that mentality of like I
need to educate my doctor, we'regoing to have to partner on
this that's really good.
But so again, back at home, someof the things that you can do
is really really I hate to sayit because it's a really taboo
subject in the lipidema world iswatch your sugar Intake, your
free sugar intake, and that willhelp reduce the inflammation in
(20:59):
your body and then you can getto what's what the actual
disease tissue is that's left.
If you're able to get down tothat Right.
And I can flame up if I have areally bad flare.
Stress is my trigger and I'vehad times where my leg actually
doubled in size before becauseof a super stressful situation
and then so getting theinflammation out is way harder
(21:21):
than just not getting inflamedRight.
And I tell women all the time tolike if you're traveling and
you're you swell up duringtravel, you need to be wearing
compression, but you also likeget in the pool, get in any body
of water you can, and I wrote abook about aqua therapy for
lipidema and lipidema and I dida ton of research on it, and one
(21:42):
of the things that I learnedwas about hydrostatic pressure.
So the deeper you go in thewater, the more pressure is
pushing down on your body and ithelps to squeeze that fluid up
and out of your body.
So if your feet are at thebottom, they're getting like 87
pounds.
I'm going to really simplifythis 87 pounds of pressure at
the bottom and then like 75, 65,55.
(22:02):
So there's more pressuresqueezing that the evil juices
out of your leg, right?
So get in the pool and that'sreally hard because nobody likes
wearing a bathing suit, right.
But I'm like dude, wearwhatever you want to.
I see women at the YMCA whocome in.
Just, they wear leggings andT-shirts and that's okay.
The pool does not care, itreally doesn't care.
(22:24):
Wear whatever you'recomfortable in, but get in water
as often as you can, because itwill really help get that
inflammation out.
And the reason I'm just going tokeep going for a second here,
the reason inflammation is sobad is because if you get all
inflamed, that means that yourlymphatic fluids and stuff are
just staying down there and yourlymphatics are like the trash
(22:45):
can of the body.
So if you have stagnant fluidthat's been down in the bottom
of your legs for a really longtime.
What happens is it develops, itleaves proteins behind and it
develops into fibrotic tissue,which that is like now, part of
you, right?
So even next time, if you getuninflamed, you've still got
more tissue.
And that's what happened to meis my leg, especially my left
(23:07):
leg, got so large that my calvesand ankles were rubbing
together when I walked.
And when I went into thesurgeon I had this like piece of
calf that was.
It would just move, like oneunit.
It was had been fibrotic andinflamed for so long and he
really worked.
I mean, he came out of theoperating room and he was just,
(23:29):
and he was like I really had towork to get that out and I was
like thank you so much, becausethat stuff hurts, you know.
So anything you can do to getthat inflammation out of your
body is super important and justkeep it out.
So compression, swimming, sugarthose are some of the top three
things that you can do, youknow.
And then take care of your skin, don't it?
Don't like Walk aroundbarefooted outside and do
(23:53):
anything that would like giveyou more Potential of getting an
injury on your leg, like youreally need to make sure your
skin stays moist and cared forand is in good health, and watch
for sores, because If you startgetting a sore, it takes a long
time for stuff to heal.
So yeah, there's a lot that youcan do on your own.
Before you ever see a doctorand many women never see a
(24:13):
doctor about it Because they'vehad so many bad experiences with
fat shaming and stuff they'redone.
They don't go for mammograms,they don't go for pap smears
anymore.
They just don't go to thedoctor.
So take care of yourself,whatever you can do.
Danielle La Rose (24:28):
So good.
Thank you so much for sharingall of that.
Um, oh my gosh, I have so manythings that I just want to talk
to you about.
So, okay, let's do one moreQuestion for you to dig into and
then we'll go to some funquestions.
So, um, you know, you mentioned, obviously we've talked a lot
about physical Right, like howthis has affected you physically
(24:49):
, how it affects other peoplephysically, and obviously we've
talked about the emotional,mental part of it as well.
But for you, what did you findreally helpful For your mental
health going through thisprocess?
Because obviously, like yousaid, there's so much shame
around it, there's so much youknow, just again, like your body
and Appreciation and all thethings.
(25:09):
So how can you, how did you?
And then how can other peoplereally Take care of their mental
health when it comes to this?
Susan O'Hara (25:16):
Yeah, absolutely so.
I think a lot of women I I wantto cite some information first
like suicide attempts are a lothigher with women with lipidema.
Disordered eating is very, veryhigh for women that have
lipidema and obviously formyself too.
I'm, I have been a cycle dieter, you know, and I made up the
decision once I learned aboutthe disease and it made so much
(25:40):
sense for me because I've hadthat van twice, right, I've had,
I've done all the things that'slet.
I mean, you know, you hear thatstory all the time.
I've done all the things, um, Idecided I'm not doing that crap
anymore, like I'm not gonna letmyself feel guilty about eating
food anymore.
So, um, I for me, I made thedecision that, um, I'm gonna
(26:03):
just live, you know, and thathelped me out a lot, because
getting rid of that guilt, justshedding the guilt, help me so
much feel like I deserve to goto this party and have the same
stuff everybody else is havingand not go home and feel like,
oh, I need to do whatever we do,right, that's unhealthy, um, so
(26:25):
, so just changing thatmentality helped me a lot and,
honestly, the first time thatthat lady shared her picture
with me and I started watchingvideos and seeing other women
that had shared their stories.
It Did something mentally forme that just changed me.
I was like, oh my gosh, likeI'm not the only one and I need
(26:46):
to quit hiding my body, you know.
So the support that I got fromthe online community really,
really helped my mental healthand, honestly, now the work that
I'm doing helps my mentalhealth too, because you find out
like You're helping someoneelse get through that same point
that you were.
You know, um, I have a friend,april sleuther.
(27:07):
She runs a facebook page andshe is Really smart in the
psychology area that's what herdegrees and stuff are in and she
has journaling prompts that sheput out there for us and she
asks these insightful questionslike what are you doing to care
for yourself today?
And you know just whatever.
And going through Her workbookand hearing what other women are
saying too, because we shareonline what we're talking about
(27:29):
has been helpful.
So I think the the support fromthe online community has helped
my mental health quite a bit.
And then I'll tell you one otherthing Is and I'm going to show
you a page from my book, becausethis will make more sense here
in a second.
Actually, I'll show you thecover of my book, so can you see
that's me on.
This is my aqua therapy bookand I'm wearing a bathing suit
(27:51):
and I Um, let me see if I canfind one that's got good
pictures, big pictures, in it.
Um, okay, so this is me in thebook.
It's filled with pictures of mein my bathing suit, right?
Yeah, I love that and um, it's alonger bathing suit that goes
down to my almost down to myknees it's called an aquatard.
I went out and bought thesebathing suits and I decided I
(28:14):
love the water, I love the wayit feels to be in the water.
I just it's healing all thatstuff right, and for years I
Kind of like was easing out ofthe water.
I started wearing men's boardshorts and then I had taken my
Girl Scouts to Savannah, georgia, and we were at Tidy Island and
that day I decided I wasn'tgonna get in the water because I
didn't want the girls to see mein my bathing suit.
(28:35):
Oh, I wish I could turn backtime To that, because that
message that I told my girls wasnot the right one to be giving
to preteen women, you know.
So now I wear this bathing suit, I go to white water, I go to
where I go to the beach.
Oh, I go snorkeling.
I've been all over the worldsnorkeling in these paintings,
right, and the second I put iton I decide I'm here to have fun
(28:59):
, I'm never going to see thesepeople again and I'm just doing
it, right.
And what I've noticed?
Last I was in Mexico not toolong ago and I was out there.
I always get questions aboutthe bathing suits, right?
Um, I saw other women who hadbeen covered up over the course
of the day.
It was either the alcohol at mrSanchez beach club or it was
(29:20):
the influence of other women whowere out there just having fun,
you know, taking off thosecover-ups and just going out in
their bathing suits and having agreat day.
So it helps me mentally when Isee other women who were doing
that too, because it's like boom, we're a force to be reckoned
with.
You know, we have a right to bein the water just as much as
everybody else and, believe itor not, I think there are a lot
(29:41):
fewer skinny minis than thereare out there.
Then there are women who aremore curvy and who've had kids
and everything else.
So why not enjoy what the earthhas to offer to us, you know?
So all of those things havehelped my mental health and, um,
honestly, I've been onantidepressants for ages and I'm
not getting off of them becauseI don't want to know.
(30:01):
I mean, that's okay and mentalhealth is health, you know.
Yes, so anything that you cando to to improve your mental
health, do it every single day,do it.
Danielle La Rose (30:13):
Yes, yes, oh my gosh, I wanted to stop so
many times and say, yes, girl,yes, I'm sorry I have all the
snouts, because there's so manygood things there.
It's like, yes, just so much,so much goodness.
And again like the powerfulmessage you know again is take
care of yourself and surroundyourself with people, right.
If you're on social media andyou see people and things that
trigger you, that don't make youfeel qualified and beautiful
(30:38):
and fabulous, then there's anunfollow button right, and
there's communities where peopleare, and there are people you
know that you can follow ingroups, that you can be part of.
You know, and I think it'sreally important also to share
that.
You know you're sharing aboutLebedema, right, and you know
your body and women that looklike you.
(30:59):
But at the same time as you'retalking, I'm like I have felt
those things right.
I've covered up on a beach.
I've been wearing shorts sincesixth grade because I have a lot
of cellulite on my legs and Ithought that was ugly and it was
bad and I should never letanyone see I was on the beach
with a cover up.
Or I went on trips where Ididn't go into the water because
I didn't want anyone to have tosee that right, and I worked
(31:24):
really, really hard on that.
So you know, it's an importantreminder that, regardless of
your body shape, your body size,the disease or whatever your
body you're going through, thatyou pick out as the flaw because
our society has told us it's aflaw.
Like, your feelings are valid,right and we can all relate and
(31:45):
connect to that message.
So I just want to thank youbecause, as you're sharing that,
you know, if I were to see you,you know, at the beach, I'd be
like, yes, girl, right, and thenbe like what am I doing?
Why am I sitting here, notgetting in the pool?
You know, like, if she's doingthat, I can do that right, and
so it's just so powerful,everything that you're doing,
thank you.
(32:05):
And also I want to just alsocall out because a lot of this
is, you know, we're sharing.
You know, if someone it youknow, comes to your social media
and they see your page andthey're like I think I have that
I need support with that.
That's one thing I also want tocall out.
If you are someone who has neverheard of this before like me,
right, and a lot of people andperhaps you're someone who does
(32:28):
you mentioned it before, so I'mgoing to use this as an example
of someone in a wheelchair,right out of store, and you
instantly go to that thought of,like you said, they're at home.
They must be at home all thetime eating their fried chicken.
That's it.
This is a.
This is a time to checkyourself right, that you don't
get to judge the way that peoplelook and assume what is
(32:48):
happening behind the scenes,because we have absolutely no
idea whether someone is verysmall and you're like, oh, they
must be in great shape, youdon't know what, you don't know
what they're going throughbehind closed doors.
And the person who is larger,you don't know what's going on
behind closed doors.
So we all get to take thesecond to say shut up, close,
get those thoughts out andinstantly ask ourselves could it
(33:11):
be something else?
Right, and number one, it'snone of our business.
But also can we choose to havemore empathy and think, oh my
gosh, I heard that podcast aboutthat woman who has that and
it's actually a disease, it'snot actually xyz, right, and I
get to shift those thoughts.
So I just think that's a reallyimportant point to call out to,
(33:31):
because many people have beenin that situation and I think
this is a really important thingto remember and I appreciate
you for for bringing that up andand calling that out.
So, okay, are you ready for somequick, fun questions so we can
get to know you ready?
Yes, okay, because we've doneall this talk, which, again, I
could talk to you for hoursabout this, because I'm obsessed
(33:52):
with learning about bodies andunderstanding people's thoughts
and how they go through things,but, at the same time, we
literally just talked about howwomen are so much more important
than how they look.
So, with that being said, Iwant to know more fun, random
stuff about you.
All right, random, funquestions.
Okay, you can.
I don't believe in cheat meals.
We have meals, so what is?
(34:14):
But what is one of yourfavorite meals that, if you can
only have one for the rest ofyour life, one more meal, what
would it be?
Susan O'Hara (34:20):
Okay, so it's chicken fried steak, mashed
potatoes and gravy, green beans,homemade rolls and probably
some delicious dessert chocolateinvolved.
This is what I'm going to say.
Is that my?
I actually have a blue folderunderneath my desk that says
when I die, it's got great bigletters on it and it's got all
the insurance stuff andeverything, and it has
directions to my family that Idon't want a funeral, I want a
(34:43):
bonfire and everybody there musteat chicken fried steak and
chocolate cake.
Danielle La Rose (34:48):
Oh my gosh, this is the best answer I've
ever had on the podcast.
I'm obsessed with this.
That is genius.
Now I need a folder that tellspeople what to eat after.
And your meal sounds amazing.
I mean, I'm here for that meal.
Um, okay, so I will.
I already know the answer tothat one question we've talked
(35:09):
about a lot.
Okay, you can only watch one TVshow for the rest of your life.
What do you choose?
Susan O'Hara (35:13):
Oh my gosh, you're going to think I'm such a dork.
Probably Ted talks.
Danielle La Rose (35:18):
Okay, not a dork, but it's a different one.
Susan O'Hara (35:23):
I love them.
I know I love any documentaries, anything about other people
and their success and stuff likethat, and I do.
My husband will walk in andhe's like what are you watching?
And I'm like Ted talks.
Okay, bye, I'm out.
Danielle La Rose (35:38):
I love that.
That is so good.
Okay, what?
Who is one powerful woman thathas inspired you in your life?
Susan O'Hara (35:48):
You know Oprah Winfrey, I will tell you and I
know that's such a common answerbut I love where she came from
and what she did with her lifeto get to where she's going.
And then I like how she usesher platform now for good for
all of humanity.
I think it's wonderful.
Also, just as a side note, Icopycat a lot of her outfits.
You know she's paying somestylist a ton of money and I
(36:11):
love the way that she dresses ontop of all that other stuff too
.
I just think she holds herself.
I think she feels aresponsibility to use her life
for the best good, and I lovethat about her.
Danielle La Rose (36:22):
So good.
Okay, so that leads me to mynext question.
What is your favorite piece ofaccessory or an outfit or
something of yours Like yourabsolute favorite?
Susan O'Hara (36:34):
Yeah, so I will tell I wish I had it with me.
My dad died when I was 19 yearsold and he was a big man I get
my size from him and he was sixfoot six.
He had hands that were likethis to my right, and when he
died he had a wedding ring thathad been resized many, many
times over the years and it wasa size 16, white gold.
And whenever he passed away mymom kept the ring for a long
(36:58):
time and then finally I took itfrom her, thinking okay, I'm
going to do something with thisring.
And there were time of course,we all have hard times in life
Whenever I just felt like I needmy daddy and I would take that
ring out of my safe and I wouldsleep with it on my hand just so
that I could feel him beingclose to me.
So a few years ago, my sisterand I took that ring to a
(37:18):
jeweler and we had the gold cutin half and I had a ring that I
bought giant, ridiculous, gaudy,tacky, sparkly mosa knight
stones on top of it, and I hadthe jeweler make me this ring
and I only wear it for specialoccasions because I feel like
it's so treasured, but it's sobig and ridiculous that it might
(37:39):
attract a mugger someday.
And they can have the stones,but they can't have the gold,
because the gold is precious tomy heart.
So that is my absolute favoritething, and when people
compliment me on it because youcan see it from across the room,
it's just ridiculous, right,and I'm like it's mosa knight,
but that's not what's importantabout the ring.
So that's my.
I just feel like it was on mydad's hand for all those years
(38:00):
and I love it so much.
Danielle La Rose (38:01):
Mm, that is so good.
I love that.
What would you say are your toptwo strengths?
Susan O'Hara (38:09):
Courage and confidence.
And, of course, I'm going toget back to Girl Scouts.
Girl Scouts has this themebuilding girls of courage,
confidence and character thatmake the world a better place,
and I truly believe that a lotof the things I learned from
being in Girl Scouts and gettingto lead activities and plan
programs and do all of thesethings that were like really
(38:30):
cool experiences Did give me theconfidence to speak up and then
the courage to be able to belike I'm going to be myself, you
know.
So I definitely think those aretwo of my strengths.
Danielle La Rose (38:43):
I love that.
Okay, what does it mean to youto be pretty powerful?
Susan O'Hara (38:50):
So be pretty powerful.
That's really interesting.
So I will tell you.
If you watch my social mediastuff, you will see days when
I'm not wearing makeup.
I do lots of posts from mypajamas in this chair, where my
hair is jacked up or whatever,and I still feel like that is
pretty powerful because it's sorelatable to other women.
(39:12):
I mean, there are days when youjust can't, I just can't put
foundation on or whatever.
But finding my voice, no matterwhether I'm decked out for
photo shoots or whatever, I'mreal, I'm in the bathing suit,
I'm jumping in the pool.
I have power by my willingnessto share and speak like my real
(39:34):
self right, like who I really am, and I think that that's what
it means for me.
Danielle La Rose (39:42):
So good, yes, okay.
What is one daily or consistenthabit that helps you step into
your confidence and self-love?
Susan O'Hara (39:51):
Wow, that's interesting.
I would think so, learningevery day I read.
I've always got by my deskstacks of books.
I go to the library and I get10 at a time.
So I think that it helps me tofeel like more legitimate and
this is probably some of thesome weakness in here too, right
(40:12):
, but I feel like, with myeducation and what I've learned,
that it helps me to be able tospeak more powerfully and like
with more authority, and so Itry and learn as much as I can
and just have a moment where Ican think through the some of
the things that I've learned andhow I might be able to use them
, and it really does improve myconfidence.
Danielle La Rose (40:32):
So good, yes, I love that.
Okay, so I'll finish with thisone.
If there is one powerful pieceof advice that you could leave
for little girls or women in theworld, what would it be?
Susan O'Hara (40:48):
It would be.
Think about the long term.
A lot of times we get hung upin how I feel right now, and it
really is that.
You know we hear these quotesall the time.
Will this matter in five years?
You know, what really mattersis the love that you share, the
people you spend time with, butthe longer term effects of
(41:12):
things.
So if you're in a funk rightnow, or you're feeling like self
conscious, or you had a bad dayand somebody treated you badly
or whatever, think about whatyour long game is.
And it's so hard to understandthat when you're a child,
because you really are in yourown little world.
But if I could go back tomyself as a little girl and
(41:33):
think through like girl, allthese things are lessons that
you're going to need to helpmake you stronger for a longer
term.
You know it's just think alittle bit further out than
where you are.
You know, don't just focus onthe now and your feelings right
now, because feelings are goingto come and go, you know.
Danielle La Rose (41:52):
So good, all right.
Where?
Because everyone's going to beobsessed with you like I am now.
So where would you like peopleto go find you and hang out with
you to learn more, get supportor just simply just be in your
presence, because it's inspiring?
Susan O'Hara (42:06):
So I'm on legs like minecom.
I've got all the socials and Ireally am having a lot of fun
with my YouTube channel, whichit's, you know, youtubecom slash
, see, slash legs like mine,really easy to find and I have a
getting close to 200 videos outthere that I've been doing for
the last couple of years.
Instagram is a lot of fun rightnow for me and Twitter is
(42:28):
probably slowing down quite abit, but that YouTube channel,
I'm telling you that's where youcan if you want to see the real
Susan YouTube channel, becauseyou'll see what's on this side
of my office that you knowdoesn't ever show one just like
that.
But yeah, legs like minecom.
Absolutely all of my books areon Amazon.
I have four books out thereright now and you know I love
(42:51):
for women to, especially myfirst book, jeans on a beach day
.
It is a book that I am morethan willing to send to doctors.
I write personal notes in themall the time.
It's got links to the standardsof care and diagnostic criteria
and stuff like that.
So if you have a doctor who isjust not hearing it but you want
to continue your relationshipwith that doctor, send me their
(43:13):
address and I will.
It's not a way, it's not a goodthing.
I'm just like hey, you've got apatient who might have this.
She asked me to send this toyou.
I'm marking up the link to thestandard of care so that you can
educate yourself on it.
Feel free to drop me a line andI will be happy to send them
and authors copy at my expense.
Danielle La Rose (43:30):
Oh my gosh, that is amazing.
How brilliant to like reallymake more impact and and just
truly help in a very powerfulway.
That's amazing.
Thank you so much, susan.
That's awesome, so I will.
I will also drop all the linksto all your places in the show
notes so people can just clickand go, so there's no trying to
(43:53):
find stuff and being confused ifit's you or not you.
I got you any last words thatyou have that you want to share
that maybe you haven't yet.
Before we say goodbye.
Susan O'Hara (44:01):
Yeah, absolutely for women who are struggling
with lipidema or anybody issues.
Right, don't give up.
Do not give up.
Don't ever spend one day whereyou're like I'm not getting out
of that bed because the oneturns into two, turns into a
week, a week turns into a year,every single day.
Get up, move in some way.
(44:22):
Do the best you can with whatyou have today.
If it's you know, yesterday youwere Like not even caring for
yourself.
Do one thing to care foryourself today.
Just do one thing so that youcan keep forward progression in
your life.
Danielle La Rose (44:39):
My drop and, with that, my friends.
That is the Susan who is soamazing.
Thank you so much today, susan,for being here and sharing all
of this incredibleness with meand with my friends.
You are simply amazing.
So thank you so much and,friends, I will talk to you on
the next one.
(44:59):
Bye, bye.
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