April 20, 2025 • 35 mins
What happens when you combine the expertise of a trailblazing dentist with an unwavering commitment to mental health advocacy? Dr. Amee shares her powerful story of living with epilepsy since age eight and how it catalyzed her mission to challenge societal stigma and embrace vulnerability. Her journey from patient to advocate is a beacon of hope for those newly diagnosed, offering insights into balancing a thriving career and personal life while managing an invisible illness. Join us as we uncover the transformative power of sharing one’s story and the strength found in authenticity.
Navigating the complexities of parenting with a chronic illness presents its own unique challenges. In our heartfelt discussion, Dr. Amee reveals the emotional rollercoaster she experiences, from isolation and depression to building resilience and understanding within her family. She emphasizes the importance of community support and open communication with children, allowing them to be active participants in the journey without feeling like a burden. Through personal anecdotes, we explore the significance of age-appropriate transparency, ensuring that the next generation understands and embraces the intricacies of living with chronic conditions.
Embracing vulnerability and fostering a sense of shared humanity are at the heart of our conversation. We celebrate the courage it takes to show up authentically, even in the face of adversity. Through gratitude and support, we delve into the beauty of creating a network that encourages openness and empathy. By highlighting personal stories and the transformative journey from patient to educator, we hope to inspire listeners to find strength in their vulnerabilities and build supportive communities that celebrate genuine connections.
Are you living with a chronic illness and want to make your voice heard? Rare Patient Voice connects patients and caregivers with research opportunities—so you can share your experiences and get paid for your time! Your insights help drive real change in healthcare.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Jen (00:00):
Hello and welcome to my Spoonie Sisters.
Today we are excited tointroduce a genuinely inspiring
guest, dr Ami.
She's a trailblazer in thedental field and a fierce
advocate for mental healthawareness.
Dr Ami navigates the complexworld of managing a high balance
work-life career situationwhile living with epilepsy, and
(00:23):
she's here to share herunfiltered truths about the
realities of invisible illnesses.
Her story isn't just aboutsurvival.
It's about thriving, changingthe stigma and balancing
motherhood, career and self-care, all while battling epilepsy.
Let's dive into her journey andgain powerful insights from her
experiences.
Andi (00:43):
Well, hello, it's so good to see you today.
Amee (00:46):
Thank you for having me, lady.
This should be fun.
Andi (00:48):
Excited to be here, so Ami you've been very open about the
impact of epilepsy on yourmental health.
Can you share what led you tobecome such a vocal advocate for
mental health in the chronicillness community?
Amee (01:03):
Yeah, I went from zero to 100, literally about talking
about it and advocating.
And it was I'm a Scorpio andyou tell me not to do something
and I'm going to do it.
So I've had this conditionsince I was eight.
I am now 44, not that itmatters, but that's many, many,
(01:23):
many years of this being shovedunder the rug.
And as a south asian woman, Ikind of went through and checked
our check boxes, right, becausethere there is a stigma to that
.
I have a graduate degree, havetwo children, blah, blah, blah,
blah.
And the minute I startedtalking about it it was kind
like what are people going tothink if they know this?
(01:46):
And I really stopped and Ithought about it and I'm like
what are people going to thinkif they know this?
And what do I think?
Because it was the first timethat I really had to question it
myself if that makes any sense.
To accept your own invisibleillness takes time and it's a
process and I don't know if thatwas the same for you ladies or
(02:07):
anyone out there listening.
I went through a process myselfand it was only until one.
This forced me to, but two Iwas forced to.
It was changing and it was moreapparent and it was more
affecting my day-to-day life andI couldn't show up in the way
that I'd always been known toshow up for my family, my
friends, my patients, my kidsand everyone, everything we do.
(02:30):
And there was no point in lyingabout it.
I'm like what example am Isetting to everyone around me?
Right, I was going to ascheduled five-day hospital stay
.
Now I could have said, hey, I'mgoing to Mexico, I'm going to
have some margaritas on thebeach, peace, see you in five
days.
But I wasn't going to do that.
I was like you know what?
We're going to start talkingabout this and we're going to
(02:53):
tell people what really is goingon.
And, frankly, this is going tobe beautiful because I'm going
to get the support that I'veneeded maybe this entire time.
I just didn't know.
So that's where my journeystarted, and it was last year
that I was electivelyhospitalized and we started
talking about it right before itwas going to happen, because I
wasn't just going to disappear.
(03:14):
I was like look, look at this.
Jen (03:16):
I think it's not just a Scorpio thing, although Scorpios
are pretty YOLO.
Okay, you guys are pretty.
You're not the boss of me, butI think once we're tired, we're
just tired, and it's 0 to 100for all of us when we're tired.
But Scorpios are definitelyYOLO personality, so I love your
fight.
Amee (03:37):
It's on the table and it's a blessing in disguise.
You can look at it however youwant to, but it is what it is
and I'm going to take it forwhat comes.
Andi (03:44):
And I'm looking at you as an accomplished, stunning woman,
thinking wow, you have nothingto be afraid of.
You really don't?
I mean, it's in our minds, andI don't know how in the world it
gets in our minds that we havesomething to be afraid of.
Amee (03:57):
Yeah, I don't know how it ends up there either, because no
one for me personally no onehas told me that I think I've
kind of self-absorbed that orcreated this self-narrative that
wasn't spoken to me and I hopeanyone else who's newly
diagnosed or listening or isyounger doesn't create that
narrative and we can change thatmoving forward?
Andi (04:20):
Yes, because we are our worst critic and we are far
harder on ourselves than anyoneelse will be Absolutely Now.
Balancing a career as a dentistwhile managing epilepsy is no
small feat.
How have you found ways tomaintain your professional life
while fortunate with the stateof the condition?
Amee (04:39):
and the situation, my support system and everyone
around me, because I can't dothis alone.
I work with my husband and heis also a dentist, doesn't
matter, but we're a team.
The team I work with as well myauxiliary team, my extended
team, is also very supportive,and they actually just found out
(05:01):
last year too, and some of themhave been working with me for
over 10 to 15 years, and sobeing open about that was just
kind of like weight lifted offyour shoulder.
It's like you feel like youhave to carry all of this
pressure to show up and to be acertain way and do and do and do
in this hustle culture and theminute you just let it go and
you're vulnerable and you'rereal with yourself.
(05:22):
There's just something magicalthat happened.
I just embraced it.
It was like I can truly fullybe who I am, every single being
an aspect of me.
You feel lighter.
Yes, you do.
You feel lighter and you'reauthentic, you know it's like
there's nothing under this ruganymore, like here you go, I am
(05:44):
just like you, patient one, justlike you, patient two.
We're all humans and to be ableto take that pressure off of me
and to be able to be vulnerablewith everyone around me, it's
really changed the way I look atthings.
I am more empathetic because ofit, a little more open to the
ideas of fluidity.
(06:06):
I was very rigid in my waysbecause I couldn't be.
It didn't affect me, and therewas, I don't know.
We're kind of type A and youflip that switch.
When you can no longer be thatway, there's beauty and you just
let the mesh cap in, and that'show I've seen it.
Jen (06:21):
Yeah, there is a lot of beauty in the mess.
We don't see it where we'reright in it, but there's so much
beauty in the mess I think wefind a lot of our resilience and
we are forced to sit in ourstrength, the strength that we
didn't know we had because wewere so busy doing and going and
being and showing up that wewere for others in the strong
(06:43):
face that when we had to sit,still we realized that it wasn't
just.
I'm strong on the outside, Ihave to sit with me and I'm
actually pretty dang strong.
Let's navigate this.
Yeah, I could just listen toyou talk all day.
I know, I could just listen toyou talk all day.
Amee (07:00):
I've come a long ways and it's not an overnight process,
trust me.
It just doesn't happen that way.
It's a good start.
Look in the mirror and be likelook this, this is the reality,
and it's not always easy.
I'm not going to paint thepretty picture anymore.
Okay being easy, but it is whatit is.
We're gonna make a lemonade outof lemons.
Jen (07:22):
Yeah, Yep, the best class of lemonade.
Andi (07:27):
Right, that moment of looking in the mirror and
finally saying, okay, I'm done,I'm sick of this, this is who I
am, this is what my life is,this is what it's made me, and
it's made me pretty amazing.
How about I stop talking downto myself and I just share who I
am?
You've talked about how mentalhealth and chronic illness are
often intertwined.
What are some of the key mentalhealth challenges you've faced
(07:48):
throughout your journey withepilepsy man?
Amee (07:51):
I know this can go deep.
I was in hustle culture, right.
I don't think you realizewhat's normal and what's not.
When you're on the hamsterwheel, when you're just go, go,
go.
You don't have that time to sitand even check in with yourself
.
Like what does that even meanwhen I was put on my butt and
taking medications that made mefeel not myself.
(08:15):
It comes with a lot of feels,right, that aren't normal to me
but are normal as part of theprocess, and I had to have gone
through it.
Depression, anxiety, loneliness, isolation.
All of that and you maydisagree with me, but I think
you will agree with me isuniversal.
We can call it epilepsy, butwhether it's any chronic,
(08:39):
invisible illness, it's the same.
The feelings are the same andfor me the process was less
about the condition but moreabout everything else, was
harder to accept.
Everything else came with it,and just talking about it made
that a little bit easier andthat took the weight off of that
.
So I was able to deal withthose feelings and really look
(09:00):
at them straight in the eye andwork through those, and that
allowed me.
Talking about it was one waythat allowed me to move forward.
Andi (09:07):
Did you come to this decision all on your own or were
you in any kind of counseling?
Amee (09:12):
Yeah, I have a coach that I was working with, who I'm
still working with, and we'regoing through the process.
I'm going to get my coachingcertification, because that's
how I passionately and deeplyfeel this is a problem.
I've had the support of thatalong the way, the encouragement
along the way.
It's been beautiful.
Andi (09:31):
I'm excited for you.
Yeah, let's see.
Amee (09:34):
I'm still going to be doing what I do in the capacity
I can do it and this is justkind of a passion project on the
side that I feel like iscalling me.
I've been talking about it foryears.
I love it.
Now is the time.
Andi (09:52):
I think there's a point that we all get to eventually,
where we have to finally come tothe realization that in our own
way, we are the leader, we arethe professional in our illness.
We stand up and Andy's talkingto me about this a lot lately
but we have to stand up andfinally say this is who I am,
this is the skill set and what Ihave to offer, and there's
people out there that need thatsupport.
So that's exciting that you'reworking on that, because I think
(10:15):
there's someone out there thatneeds to hear you.
Yeah.
Amee (10:17):
And you know, I just hope it's helping someone, whether
it's coming and seeking support.
Just know that there's supportout there, yeah support is huge.
Jen (10:26):
I wish I had community, the community I have now early in
my diagnosis journey.
When you said isolation anddepression and anxiety, that
ain't real and it is universal.
It doesn't matter what thecondition is, and it is it ebbs
and flows, and I have momentswhere I think that I am great
and I am super bubbly, and thenI have a flare, and it is it
ebbs and flows, and I havemoments where I think that I am
great and I am super bubbly, andthen I have a flare and it
(10:48):
could get dark and it is verymuch so universal.
But that really resonated.
Thank you for sharing that.
Andi (10:55):
I think it resonates with a lot of people absolutely we
all go through that lonelinessand that pain and the heartache
that comes with it.
Yeah, many listeners aremothers living with invisible
illnesses.
Can you share some of thehardest lessons you've learned
as a mom and how you've managedto balance parenting with your
health as well?
Amee (11:15):
Yeah, for a chronic people pleaser.
I want to do it all.
I can live life by myself, yay,rob.
Um, yeah, threw that out thewindow real quick and it was the
best thing I could have done.
Kids are meant to be raised bytribes.
It takes a village and thatquote saying we've all heard it,
(11:36):
it's not, you know, it's therefor a reason.
It takes a village.
And when you reach out to themand you can just authentically
tell them you know one, youdon't have to explain yourself
why you need them.
That's a whole differentconversation.
But when you take the couragemyself and put my guard down a
little bit and reach out and say, hey, can I get support into
this?
When you ask for help, it'sthere For me.
(11:59):
That was my ace.
I just had to go out of controland say Look, you've got to be
down to the bottom to buildyourself back up.
My husband's amazing and hasdone and still does a lot of our
dynamics.
They're definitely not 50-50.
And some days it's zero hundred.
That's okay.
We're all given a hundred iftoday feels like 50.
(12:21):
And with kids they learnresilience.
Through this I've kind of takenmy shift on how I don't have to
be a quote unquote perfectparent it's okay if I can't make
a basketball game today.
He's going to have 50 othersthat I will be at and when I can
, taking the stress off myself.
I think has been the best thingthat I could have done for me.
(12:44):
And, like I said, they'reresilient and they understand
and my kids are at the age wherethey understand and there's
someone else there.
You know we've got our tribethere.
They're not alone, they'rebeing driven there by somebody
else.
But today Mama's not making itand Mama's accepted that.
Jen (13:01):
Now yeah, there's so much calm in the acceptance portion
of I, just I am there, but Ican't't.
I remember the first time Iallowed myself to tell my
daughter I want to be therephysically but mama does not
have the energy, and to hear hershe took a deep breath and she
held my hand and she said it'sokay, I'll call you before the
(13:22):
start.
And we got to video chat.
We got to do the thing that wasmy.
I get my coming out moment of.
I can't keep doing this, likemy body's not gonna let me.
Like, mommy, we can, I'll callyou and we can do our prayers
before the start and I'll callyou after the race.
And it was great.
And you're right, it does takea village.
It is a community.
Because other parents weresending.
They're like, they asked what'syour mom's phone number?
(13:44):
They were sending me picturesof her along the race and then
it became I just had to reachout, hey.
They would be like hey, mama,are you going to make it to this
meet?
I can't, I don't feel 100%.
Don't worry, we got you, we'llsend you pictures, but that
community is everything, thevillage is everything, and just
being able to go, I can't, Ican't and see their face and
(14:05):
know that they accept it.
I think we put it on ourselvesto go.
They're not going to understandor maybe they'll be
disappointed and reallysometimes all they want to do is
be included in on the decisionof.
I know you don't feel good.
They just want us to stop lying.
I know you don't feel good, butyou're going to try to do this
anyway, you know.
Amee (14:21):
Yeah, it's, it's hard.
I mean, I can't say.
I don't have those momentswhere I'll wonder if you know,
are they not telling me aboutbeing somewhere because they
don't want to be a burden?
Are there you?
know, there's a, it can godeeper than just being at you
know the scheduled activities.
I can do that sometimes and Ido.
I think that's part of theprocess of gosh.
(14:44):
Would she want to be there?
Would he want to be there?
And they're just not asking mebecause they don't want to feel
like it would be too much,because they already know what
I'm doing or I'll never knowthose answers, right, as a mom,
I'll never know that.
But just being able to havethose open discussions and
having that tribe that theycould also go to, I'm hoping, is
(15:05):
all we should do.
Andi (15:08):
Yeah, absolutely, and I think we do our best with
deciding when our kids are readyto hear what they need to hear.
You know, there's probably atime in their life, an age in
their life, that they're readyto know all the dirty ugly of
what's going on.
But it might not be whenthey're five years old and maybe
they know mommy has somethinggoing on.
(15:28):
You know when they're fiveyears old, but maybe when
they're five years old and maybethey know mommy.
Mommy has something going on.
You know when they're fiveyears old, but maybe when
they're 15 they get to hear moreof the details, just to decide
what's appropriate and when andhow to deal with it.
But I think it makes our kidsbetter people.
They are more compassionatedefinitely more compassionate I
say that about myself all thetime.
(15:49):
I tell people I will never takemy illnesses away, and I know
that sounds crazy, but it'sbecause it's made me who I am
today and it's made me morecompassionate.
And I look at what it's donefor my children and it's made
them more compassionate.
So as much as these hard thingsjust suck, there's beauty in it
.
Amee (16:06):
It sucks and I think it really takes time to find the
beauty in it.
And that does come.
It's not easy and you just makethe most of it.
Andi (16:16):
What is your epilepsy like ?
Is it pretty well controlled?
Is it something that you feelyou hardly notice, or what does
that look like?
Amee (16:24):
This is again something I'm very grateful for.
It is not your typicalpresentation.
Now I could ask you, but Idon't want to put anyone on the
spot.
But what I typically knewbefore was you know you hear
someone having a seizure?
It's a tonic-clonic unconsciousthings like that.
And you kind of go through.
There's a protocol for that.
Minding fortunately does notpresent that way and I don't
(16:47):
lose consciousness.
I know it's happening in itsonly motor.
With medications it's onlymotor.
You know, I just kind of feeltingling in my right hand Now,
just sensing that you just kindof know your limitations.
You're like, okay, I'm startingto feel it.
It's just it signs for my bodythat hey, today we're going to
bed and tomorrow we're not goingto commit to this, this and
this.
Fortunately and unfortunately,it's really changed my lifestyle
(17:11):
in the last year.
Just tuning into that, and itseems like she has it great and
I got told this and you guysprobably hear this all the time
oh, you look great and I'm justlike, yeah, I do.
Thanks, you can't explain whatyou feel and what you're going
through.
I'm fortunate I can tell whenit's going to be coming on and
keep myself my schedule, changemy schedule around it, work for
(17:34):
myself, plan for you know peopleto take my kids places they
need to be and plan weekends offand days off accordingly.
Andi (17:43):
Does it affect your entire day, or are there times where
maybe it only bothers you for anhour?
Amee (17:48):
Yeah, no, it usually.
If it flares, it's usually like30 minutes to an hour.
When I'm having a flare up,it's been consistent on the time
of day.
So, like today, I've just been,I'm going to get everything I
need to do in the morningproductive and then I'm going to
allow the evening to progresshow it progresses.
No plans, but again, I'm not.
(18:11):
I don't have that free state ofmind like I used to be, like
meet my girlfriends whenever Iwant to at 7 pm and go have
cocktails whenever I want tolike.
That freedom has been takenaway and that's also been
another part of it.
That has, to me, been agrieving process that's real,
real, that's real.
Jen (18:27):
I don't know that isn't real.
Amee (18:37):
When I could just wake up and make decisions that only
affected three people and Icould do what I wanted to
essentially.
And then I have to do aself-check-in and be like, no,
this isn't going to work for you.
Today it still kind of hurts, Istill get FOMO and I want to be
places, but I know I'm makingthe best decision and I have to
be looking out for myselfbecause nobody else is going to
know when that needs to happenbesides me?
Andi (18:55):
Yeah, you advocate for removing the stigma around
epilepsy and talking about itopenly.
What conversations do you thinkneed to happen to create more
understanding around thiscondition?
Amee (19:09):
So epilepsy is an umbrella term.
I talked about this a littlebit before in some other
podcasts, but there's so manydifferent presentations.
If you don't say the umbrellaterm to somebody, you don't
leave room for a conversation,and just talking about it is
what starts a conversation.
To get somebody to know what itlooks like for you.
(19:29):
I think knowing what someone isgoing through helps you support
it.
And questions just like how canI support you?
What do you need?
Those open-ended questionsleave space for each individual
to express their difficultiesand challenges and even
positives that they've come fromthe experience.
Because it's so individual it'sone term but it's so
(19:52):
individualized.
Andi (19:53):
When we're growing up we always think of.
There's one way that epilepsylooks, and it is far from it.
There's been times in our liveswhere we're looking at someone,
talking to someone, and wedon't even realize they're
having a seizure all the time.
What kind of advice would yougive to others in jobs who are
trying to balance their worklife with their illness and
(20:13):
their family?
Amee (20:14):
Yeah, that's where creating a support system is
essential, and you can't do thatuntil you talk about it, right?
I kind of flipped that.
I did it backwards.
I had an amazing support systemand then I was able to tap into
it.
But having that has been keyfor me being able to do what
I've been able to do for thelast year, which is really just
a lot of self-care.
(20:35):
When it comes to jobs, I wouldsay be open and honest about
your condition, because whatI've learned, whether it's a job
or a friend or a family, ifthey're not willing to accept
you and fully you, then that'snot the place you need to be.
And there are many, many placesthat will accept you for all of
you, all the parts of you.
There's no reason to, and thepeople around you need to be
(20:57):
aware so they can best supportyou.
It's not even about hiding it,it's about gosh.
You've just created a supportsystem, like, how beautiful is
that?
And you don't have to lie aboutwhy you can't come in today or
whatever the reason may be.
It's understood and there'sempathy and you've created space
and you've allowed yourself toaccept that.
Andi (21:17):
What would be great for people to realize is that when
we're keeping this big secretthat we think we have to hide,
once we finally open up and webring it up to the circle we're
in, how many other people startchiming in with what they're
dealing with too, and now theyfeel less alone.
All because we were brave andwe finally talked about it.
Yeah, absolutely.
Amee (21:38):
And so many people reach out.
I mean people I've known sincehigh school and that was a long
time ago for me and I've knownfor 15, 20 years, gone on trips
with every single year, who hadno idea I mean people closest to
me had no idea for them to showup and say what do you need?
How can you be here and tell memore?
And that's it.
(21:58):
And when someone asks you thosequestions, it's just like that
weight.
Let me tell you and yes, thisis what I'm asking and it's okay
to ask for that support andthat help in the way you need it
at the time and by being brave,speaking up and telling
everyone what you're goingthrough.
Andi (22:13):
now that they know you have people come out of the
woodwork.
Oh well, I just got diagnosedwith this.
Or, oh, my child's dealing withit.
Or I have a friend that'sreally struggling.
Can she talk to you?
It's a beautiful thing.
Amee (22:24):
That's been the most rewarding part of this.
Honestly, that's been the mostrewarding part of this, like,
honestly, this journey was theleast about me.
It was what I could create andopen up space for other people
to also feel seen and heard in aplace that I never felt like I
could.
Jen (22:40):
That's beautiful.
My eye is sweating.
So yeah, Thank you for openingspace.
Amee (22:46):
Thank you for that.
Andi (22:47):
It's been such a joy to listen to you, and we still have
more to go.
Mental's been such a joy tolisten to you, and we still have
more to go.
Jen (22:51):
Mental health advocacy is a big part of your mission.
How do you suggest othersliving with chronic conditions
start advocating for their ownmental health like you did.
Amee (22:59):
You can go down and search Dr Dougal all day long, all day
.
We all know we've all been toDr Dougal.
But the most important resourceand support system is going to
be, one, finding the rightprovider and two, talking about
it, to finding other people thathave lived and are currently
living.
What you are, and when you areable to come to terms with it
(23:20):
and speak of it, is when youallow space for everybody else
to come in who didn't knowanything about the condition.
Right now, you're the educator,right?
You've done this deep dive,you're living it, you know what
you're going through and now youbecome from patient to victim
to educator, and there'ssomething so empowering about
that process and that's justfrom talking about it.
(23:42):
And I can't emphasize enougheven epilepsy.
I've learned so much aboutother types of epilepsy.
Yes, I've had this for so long.
I only knew my way.
It was like okay, this is whatit is for me.
Yes, I knew a little bit thatthere were other ways that it
presented and whatnot, but I'vereally got to learn and I became
interested in people and theirstories and when you become
(24:04):
interested in people, it justautomatically comes back and
forth and the energy that youreceive and that gets thrown has
no value.
Andi (24:17):
It's been interesting learning about epilepsy over the
years.
We had a little girl come overto a sleepover at our house and
she was like I don't think mymom packed my medicine You've
just seen how big my eyes gotMedicine, what medicine?
Your mom didn't tell me.
And she's like oh yeah, I haveepilepsy.
My husband and I looked at eachother and I'm like were we
supposed to know this?
(24:38):
Are we supposed to be prepared?
Why didn't she tell us?
It was a girl that I knew herparents very well.
Our daughters did soccertogether and I kind of had a
meltdown.
I called my friend and she saidsoccer together.
And I kind of had a meltdown.
I called my friend and she saidoh yeah, it's fine, she had a
dose before she left, she's fine, I'll have her in the morning.
And I had all kinds ofquestions.
That was the first time it cameinto my life and it was a few
(24:58):
years later.
My niece was born in 2009 andshe was born terminally ill with
a condition called Tay-Sachsdisease, and it takes away their
vision, it takes away theirhearing, they have seizures and
ultimately, in 2012, my niecepassed away in the middle of a
seizure and most of her seizures.
(25:20):
You didn't even know she washaving them, unless you were
family and you knew what itlooked like.
It's been interesting learningmore and more about it from so
many people and what it lookslike for different people.
Interesting learning more andmore about it from so many
people and what it looks likefor different people.
Jen (25:32):
Yeah, my high school best friend we're still best friends
to this day.
She had been having seizuresall through high school, didn't
know, and in her adult life shefound out that she didn't have a
corpus callosum.
That is what.
What is it called?
She has ACC and that was whatwas causing her seizures, but
(25:54):
she gets like super hot.
If they're focal she'll juststare, she'll get super hot.
But it wasn't until she was inher feast where she found out
that she had been havingseizures and that she was
missing her corpus callosum.
I was like the fact that you'redoing anything with
coordination, wow, that's adifferent seizure.
I didn't know that it was somany different variations that
(26:17):
they could present, and I'm anurse Like we're not taught all
of the different ways you cansee it, but we are taught that
the three major that may looklike this, it may look like this
, but not the other ones.
I'm glad we're having thisconversation because even as a
medical professional, I don'tknow all of the ways that it can
manifest or present itself andeven with a best friend and
(26:39):
we've been best friends for 30years had no idea that that was
what she was going through tillabout six years ago.
Amee (26:46):
Yeah, yeah, just opening up about it.
There's something and noteveryone's going to get there at
the same time and the samepoint.
Everyone's journey is going tobattles, depending on what's
going on.
What are some ways?
Andi (27:17):
you stay mentally and emotionally resilient through
these challenges.
Amee (27:22):
Today's just one day.
I live my life by a lot ofpositive affirmations and
today's a day and tomorrow'sanother.
I don't look at long-termnecessarily and I go assess the
morning and say these are mygoals for the day, Give myself
some grace if it happens, andtomorrow's another day if it
doesn't.
And there's a few things Iprioritize and everything else
is extra.
(27:42):
I love my girlfriends, but withthe age my kids are and work
and running my own business andowning my own business, that's
third tier, right, Like mypatients, my work, my kids, my
husband, my marital relationshipand then my you know, my
friends, because that feeds mysoul.
So it actually has beenbeautiful in the sense that you
(28:07):
remove all of the negativity andall of those spaces that were
not serving you because you haveno time and energy for them.
And this year is what I've done.
I mean, I quit drinking, whichisn't the point, but those
places in those environments nolonger served me.
I would never have known thathad I not gone through this
process.
I would have just been doingthe same thing because that's
(28:29):
all I knew.
It wouldn't have allowed metime to be like you know what,
Maybe I didn't really enjoy thatas much as I thought I did.
How does this?
Andi (28:37):
work.
Is this something that isgenetic?
Is this something that can bepassed down to your children?
Is it something you need towatch out for, or is it purely
who knows how?
Amee (28:47):
Don't we love the term idiopathic?
It's not genetic.
There's no known cause.
In my case, again, it'ssituational and it's case-based.
It can be trauma-induced, itcan be genetics.
It's associated as a symptom ofmany, many diseases.
My case is idiopathic, justlucky one in 26, which is the
(29:08):
commonality.
One in 26 people have epilepsyand there is no cure for the
time being, and so we're alljust managing as best we know.
How.
Is there anything you have to becareful about?
There are a few things that Iknow my triggers are, and so I'm
very cognizant of keeping thosein track.
One of them is sleep.
I'm on a really strict sleepschedule now.
Like girlfriends wouldn't goout at 9pm, nope, not happening.
(29:31):
Does someone want to meet atsix?
I'm there, I'll be home by nine.
So, like, structure is reallyimportant.
Sleep is a big one for me, andhormones, I think, are another
one which we just, you know,obviously can't do much about.
So it's different for everyone.
But the triggers once you kindof identify those, if you can
identify those, then that doeshelp with management.
Andi (29:50):
Does your husband notice when you need some sleep or when
you need a break?
Is this something that he comesup to you and he's like honey?
I'm noticing something.
Amee (30:04):
He doesn't have to come up to me, it's just like an
unspoken.
He just knows and just comesright in and it'll be seven.
I'll be like I'm up for thenight.
There's no other conversationthat needs to happen.
He's got the rest taken care of.
That's really good.
There's no.
It's beautiful.
I'm very fortunate to have that.
Andi (30:17):
How do you define thriving with an invisible illness and
what does it look like for you?
Amee (30:22):
now.
Thriving means making the bestof every situation that you're
given and no one chooses.
You know, no one's playingroulette and choosing a chronic
illness and saying this is theone I want.
For me, thriving is being ableto do the things I'm able to do
(30:43):
every single day, and that'sthriving for me absolutely what
is one message you want to leavewith our listeners who may be
battling chronic conditions,whether they're visible or
invisible?
Don't let anybody tell you youcan't.
You define what you can andcannot do, and only you know
your condition and yourlimitations, because I don't
(31:04):
think I would have done what Idid if, as a child, someone told
me I couldn't because of anillness.
Jen (31:10):
What is your 2025 word?
Adaptability, adaptability.
Amee (31:15):
Yeah, that's a great question, because I don't do New
Year's resolutions.
That is my word every singleday is I love it, jenny?
What's yours?
Jen (31:23):
Adventures.
Mine was fearless, fearless andvocal, so this podcast thing is
out of the box for me becauseI'm a very hey kind of person
yeah, so proud of you.
Amee (31:34):
For you, I was just gonna say the same I'm so proud of you
yeah, this is.
Jen (31:38):
This is new this is great.
Andi (31:40):
Andy and I about four years ago, and I was that crazy
white girl that wouldn't leaveher alone yeah, wanted to send
me happy mail and look at at us.
Jen (31:48):
Now I got stickers and stuff, just yeah.
Andi (31:52):
That's funny.
You hear her say this story topeople all the time and it's
true.
Jen (31:56):
She randomly asked me what's your address and I'm like
huh, whatever.
And then I get this envelopeand I'm retired military.
So you start getting randomenvelopes from people you've
never met.
I said well.
I was like, well, what is this?
(32:16):
Well, you know, this reallynice white lady that I met on
the internet sent me happy mailand it was it was the sweetest
card ever and it came like righton time.
So you guys aren't gettinghappy mail from Gracefully Jen I
don't know who are you even,and why not?
Because they're tearjerkersright on time every time.
That's beautiful.
Andi (32:29):
I could say the same about you and many others too, though
you guys for me as well.
Well, this has been a fantasticchat, amy.
It's been wonderful to have youon here.
Undoubtedly, I think ourlisteners are going to resonate
so much with all the incredibleinformation you've shared.
How is the best way for someoneto get in touch with you if
they want to follow you or getto know you more?
Amee (32:52):
Right now I'm just on Instagram.
That's the only place I'mhiding behind the Bindi's and
there's kind of a significanceto that.
If quickly, I'll go through it.
But the Bindi is the third eye,or the dot worn by Indian women
, and this was kind of you knowwhat.
We're gonna take that off andwe're gonna talk about what's's
real, because that's just wherewe're at now.
So that's my handle.
(33:12):
It might not make a lot ofsense if you know from a
different culture or origin, butI'm on Instagram only at the
current time and working ongetting some other
certifications and working onmyself for the time being.
But reach out to me for anytype of support night day
message, don't hesitate.
Jen (33:29):
Thank you for an amazing conversation, thank you for your
vulnerability, thank you foryour fight, just thank you.
Thank you for beingauthentically you.
There's a glow to you.
So thank you for just showingup in the capacity you have, on
the days that you have extracapacity or not, but thank you
for being authentically you andspending some time with us.
Thank you for having me.
Andi (33:50):
I appreciate it, ladies, so listeners until next.
Hello and welcome to my Spoonie Sisters.
Today we are excited tointroduce a genuinely inspiring
guest, dr Ami.
She's a trailblazer in thedental field and a fierce
advocate for mental healthawareness.
Dr Ami navigates the complexworld of managing a high balance
work-life career situationwhile living with epilepsy, and
(00:23):
she's here to share herunfiltered truths about the
realities of invisible illnesses.
Her story isn't just aboutsurvival.
It's about thriving, changingthe stigma and balancing
motherhood, career and self-care, all while battling epilepsy.
Let's dive into her journey andgain powerful insights from her
experiences.
Andi (00:43):
Well, hello, it's so good to see you today.
Amee (00:46):
Thank you for having me, lady.
This should be fun.
Andi (00:48):
Excited to be here, so Ami you've been very open about the
impact of epilepsy on yourmental health.
Can you share what led you tobecome such a vocal advocate for
mental health in the chronicillness community?
Amee (01:03):
Yeah, I went from zero to 100, literally about talking
about it and advocating.
And it was I'm a Scorpio andyou tell me not to do something
and I'm going to do it.
So I've had this conditionsince I was eight.
I am now 44, not that itmatters, but that's many, many,
(01:23):
many years of this being shovedunder the rug.
And as a south asian woman, Ikind of went through and checked
our check boxes, right, becausethere there is a stigma to that
.
I have a graduate degree, havetwo children, blah, blah, blah,
blah.
And the minute I startedtalking about it it was kind
like what are people going tothink if they know this?
(01:46):
And I really stopped and Ithought about it and I'm like
what are people going to thinkif they know this?
And what do I think?
Because it was the first timethat I really had to question it
myself if that makes any sense.
To accept your own invisibleillness takes time and it's a
process and I don't know if thatwas the same for you ladies or
(02:07):
anyone out there listening.
I went through a process myselfand it was only until one.
This forced me to, but two Iwas forced to.
It was changing and it was moreapparent and it was more
affecting my day-to-day life andI couldn't show up in the way
that I'd always been known toshow up for my family, my
friends, my patients, my kidsand everyone, everything we do.
(02:30):
And there was no point in lyingabout it.
I'm like what example am Isetting to everyone around me?
Right, I was going to ascheduled five-day hospital stay
.
Now I could have said, hey, I'mgoing to Mexico, I'm going to
have some margaritas on thebeach, peace, see you in five
days.
But I wasn't going to do that.
I was like you know what?
We're going to start talkingabout this and we're going to
(02:53):
tell people what really is goingon.
And, frankly, this is going tobe beautiful because I'm going
to get the support that I'veneeded maybe this entire time.
I just didn't know.
So that's where my journeystarted, and it was last year
that I was electivelyhospitalized and we started
talking about it right before itwas going to happen, because I
wasn't just going to disappear.
(03:14):
I was like look, look at this.
Jen (03:16):
I think it's not just a Scorpio thing, although Scorpios
are pretty YOLO.
Okay, you guys are pretty.
You're not the boss of me, butI think once we're tired, we're
just tired, and it's 0 to 100for all of us when we're tired.
But Scorpios are definitelyYOLO personality, so I love your
fight.
Amee (03:37):
It's on the table and it's a blessing in disguise.
You can look at it however youwant to, but it is what it is
and I'm going to take it forwhat comes.
Andi (03:44):
And I'm looking at you as an accomplished, stunning woman,
thinking wow, you have nothingto be afraid of.
You really don't?
I mean, it's in our minds, andI don't know how in the world it
gets in our minds that we havesomething to be afraid of.
Amee (03:57):
Yeah, I don't know how it ends up there either, because no
one for me personally no onehas told me that I think I've
kind of self-absorbed that orcreated this self-narrative that
wasn't spoken to me and I hopeanyone else who's newly
diagnosed or listening or isyounger doesn't create that
narrative and we can change thatmoving forward?
Andi (04:20):
Yes, because we are our worst critic and we are far
harder on ourselves than anyoneelse will be Absolutely Now.
Balancing a career as a dentistwhile managing epilepsy is no
small feat.
How have you found ways tomaintain your professional life
while fortunate with the stateof the condition?
Amee (04:39):
and the situation, my support system and everyone
around me, because I can't dothis alone.
I work with my husband and heis also a dentist, doesn't
matter, but we're a team.
The team I work with as well myauxiliary team, my extended
team, is also very supportive,and they actually just found out
(05:01):
last year too, and some of themhave been working with me for
over 10 to 15 years, and sobeing open about that was just
kind of like weight lifted offyour shoulder.
It's like you feel like youhave to carry all of this
pressure to show up and to be acertain way and do and do and do
in this hustle culture and theminute you just let it go and
you're vulnerable and you'rereal with yourself.
(05:22):
There's just something magicalthat happened.
I just embraced it.
It was like I can truly fullybe who I am, every single being
an aspect of me.
You feel lighter.
Yes, you do.
You feel lighter and you'reauthentic, you know it's like
there's nothing under this ruganymore, like here you go, I am
(05:44):
just like you, patient one, justlike you, patient two.
We're all humans and to be ableto take that pressure off of me
and to be able to be vulnerablewith everyone around me, it's
really changed the way I look atthings.
I am more empathetic because ofit, a little more open to the
ideas of fluidity.
(06:06):
I was very rigid in my waysbecause I couldn't be.
It didn't affect me, and therewas, I don't know.
We're kind of type A and youflip that switch.
When you can no longer be thatway, there's beauty and you just
let the mesh cap in, and that'show I've seen it.
Jen (06:21):
Yeah, there is a lot of beauty in the mess.
We don't see it where we'reright in it, but there's so much
beauty in the mess I think wefind a lot of our resilience and
we are forced to sit in ourstrength, the strength that we
didn't know we had because wewere so busy doing and going and
being and showing up that wewere for others in the strong
(06:43):
face that when we had to sit,still we realized that it wasn't
just.
I'm strong on the outside, Ihave to sit with me and I'm
actually pretty dang strong.
Let's navigate this.
Yeah, I could just listen toyou talk all day.
I know, I could just listen toyou talk all day.
Amee (07:00):
I've come a long ways and it's not an overnight process,
trust me.
It just doesn't happen that way.
It's a good start.
Look in the mirror and be likelook this, this is the reality,
and it's not always easy.
I'm not going to paint thepretty picture anymore.
Okay being easy, but it is whatit is.
We're gonna make a lemonade outof lemons.
Jen (07:22):
Yeah, Yep, the best class of lemonade.
Andi (07:27):
Right, that moment of looking in the mirror and
finally saying, okay, I'm done,I'm sick of this, this is who I
am, this is what my life is,this is what it's made me, and
it's made me pretty amazing.
How about I stop talking downto myself and I just share who I
am?
You've talked about how mentalhealth and chronic illness are
often intertwined.
What are some of the key mentalhealth challenges you've faced
(07:48):
throughout your journey withepilepsy man?
Amee (07:51):
I know this can go deep.
I was in hustle culture, right.
I don't think you realizewhat's normal and what's not.
When you're on the hamsterwheel, when you're just go, go,
go.
You don't have that time to sitand even check in with yourself
.
Like what does that even meanwhen I was put on my butt and
taking medications that made mefeel not myself.
(08:15):
It comes with a lot of feels,right, that aren't normal to me
but are normal as part of theprocess, and I had to have gone
through it.
Depression, anxiety, loneliness, isolation.
All of that and you maydisagree with me, but I think
you will agree with me isuniversal.
We can call it epilepsy, butwhether it's any chronic,
(08:39):
invisible illness, it's the same.
The feelings are the same andfor me the process was less
about the condition but moreabout everything else, was
harder to accept.
Everything else came with it,and just talking about it made
that a little bit easier andthat took the weight off of that
.
So I was able to deal withthose feelings and really look
(09:00):
at them straight in the eye andwork through those, and that
allowed me.
Talking about it was one waythat allowed me to move forward.
Andi (09:07):
Did you come to this decision all on your own or were
you in any kind of counseling?
Amee (09:12):
Yeah, I have a coach that I was working with, who I'm
still working with, and we'regoing through the process.
I'm going to get my coachingcertification, because that's
how I passionately and deeplyfeel this is a problem.
I've had the support of thatalong the way, the encouragement
along the way.
It's been beautiful.
Andi (09:31):
I'm excited for you.
Yeah, let's see.
Amee (09:34):
I'm still going to be doing what I do in the capacity
I can do it and this is justkind of a passion project on the
side that I feel like iscalling me.
I've been talking about it foryears.
I love it.
Now is the time.
Andi (09:52):
I think there's a point that we all get to eventually,
where we have to finally come tothe realization that in our own
way, we are the leader, we arethe professional in our illness.
We stand up and Andy's talkingto me about this a lot lately
but we have to stand up andfinally say this is who I am,
this is the skill set and what Ihave to offer, and there's
people out there that need thatsupport.
So that's exciting that you'reworking on that, because I think
(10:15):
there's someone out there thatneeds to hear you.
Yeah.
Amee (10:17):
And you know, I just hope it's helping someone, whether
it's coming and seeking support.
Just know that there's supportout there, yeah support is huge.
Jen (10:26):
I wish I had community, the community I have now early in
my diagnosis journey.
When you said isolation anddepression and anxiety, that
ain't real and it is universal.
It doesn't matter what thecondition is, and it is it ebbs
and flows, and I have momentswhere I think that I am great
and I am super bubbly, and thenI have a flare, and it is it
ebbs and flows, and I havemoments where I think that I am
great and I am super bubbly, andthen I have a flare and it
(10:48):
could get dark and it is verymuch so universal.
But that really resonated.
Thank you for sharing that.
Andi (10:55):
I think it resonates with a lot of people absolutely we
all go through that lonelinessand that pain and the heartache
that comes with it.
Yeah, many listeners aremothers living with invisible
illnesses.
Can you share some of thehardest lessons you've learned
as a mom and how you've managedto balance parenting with your
health as well?
Amee (11:15):
Yeah, for a chronic people pleaser.
I want to do it all.
I can live life by myself, yay,rob.
Um, yeah, threw that out thewindow real quick and it was the
best thing I could have done.
Kids are meant to be raised bytribes.
It takes a village and thatquote saying we've all heard it,
(11:36):
it's not, you know, it's therefor a reason.
It takes a village.
And when you reach out to themand you can just authentically
tell them you know one, youdon't have to explain yourself
why you need them.
That's a whole differentconversation.
But when you take the couragemyself and put my guard down a
little bit and reach out and say, hey, can I get support into
this?
When you ask for help, it'sthere For me.
(11:59):
That was my ace.
I just had to go out of controland say Look, you've got to be
down to the bottom to buildyourself back up.
My husband's amazing and hasdone and still does a lot of our
dynamics.
They're definitely not 50-50.
And some days it's zero hundred.
That's okay.
We're all given a hundred iftoday feels like 50.
(12:21):
And with kids they learnresilience.
Through this I've kind of takenmy shift on how I don't have to
be a quote unquote perfectparent it's okay if I can't make
a basketball game today.
He's going to have 50 othersthat I will be at and when I can
, taking the stress off myself.
I think has been the best thingthat I could have done for me.
(12:44):
And, like I said, they'reresilient and they understand
and my kids are at the age wherethey understand and there's
someone else there.
You know we've got our tribethere.
They're not alone, they'rebeing driven there by somebody
else.
But today Mama's not making itand Mama's accepted that.
Jen (13:01):
Now yeah, there's so much calm in the acceptance portion
of I, just I am there, but Ican't't.
I remember the first time Iallowed myself to tell my
daughter I want to be therephysically but mama does not
have the energy, and to hear hershe took a deep breath and she
held my hand and she said it'sokay, I'll call you before the
(13:22):
start.
And we got to video chat.
We got to do the thing that wasmy.
I get my coming out moment of.
I can't keep doing this, likemy body's not gonna let me.
Like, mommy, we can, I'll callyou and we can do our prayers
before the start and I'll callyou after the race.
And it was great.
And you're right, it does takea village.
It is a community.
Because other parents weresending.
They're like, they asked what'syour mom's phone number?
(13:44):
They were sending me picturesof her along the race and then
it became I just had to reachout, hey.
They would be like hey, mama,are you going to make it to this
meet?
I can't, I don't feel 100%.
Don't worry, we got you, we'llsend you pictures, but that
community is everything, thevillage is everything, and just
being able to go, I can't, Ican't and see their face and
(14:05):
know that they accept it.
I think we put it on ourselvesto go.
They're not going to understandor maybe they'll be
disappointed and reallysometimes all they want to do is
be included in on the decisionof.
I know you don't feel good.
They just want us to stop lying.
I know you don't feel good, butyou're going to try to do this
anyway, you know.
Amee (14:21):
Yeah, it's, it's hard.
I mean, I can't say.
I don't have those momentswhere I'll wonder if you know,
are they not telling me aboutbeing somewhere because they
don't want to be a burden?
Are there you?
know, there's a, it can godeeper than just being at you
know the scheduled activities.
I can do that sometimes and Ido.
I think that's part of theprocess of gosh.
(14:44):
Would she want to be there?
Would he want to be there?
And they're just not asking mebecause they don't want to feel
like it would be too much,because they already know what
I'm doing or I'll never knowthose answers, right, as a mom,
I'll never know that.
But just being able to havethose open discussions and
having that tribe that theycould also go to, I'm hoping, is
(15:05):
all we should do.
Andi (15:08):
Yeah, absolutely, and I think we do our best with
deciding when our kids are readyto hear what they need to hear.
You know, there's probably atime in their life, an age in
their life, that they're readyto know all the dirty ugly of
what's going on.
But it might not be whenthey're five years old and maybe
they know mommy has somethinggoing on.
(15:28):
You know when they're fiveyears old, but maybe when
they're five years old and maybethey know mommy.
Mommy has something going on.
You know when they're fiveyears old, but maybe when
they're 15 they get to hear moreof the details, just to decide
what's appropriate and when andhow to deal with it.
But I think it makes our kidsbetter people.
They are more compassionatedefinitely more compassionate I
say that about myself all thetime.
(15:49):
I tell people I will never takemy illnesses away, and I know
that sounds crazy, but it'sbecause it's made me who I am
today and it's made me morecompassionate.
And I look at what it's donefor my children and it's made
them more compassionate.
So as much as these hard thingsjust suck, there's beauty in it
.
Amee (16:06):
It sucks and I think it really takes time to find the
beauty in it.
And that does come.
It's not easy and you just makethe most of it.
Andi (16:16):
What is your epilepsy like ?
Is it pretty well controlled?
Is it something that you feelyou hardly notice, or what does
that look like?
Amee (16:24):
This is again something I'm very grateful for.
It is not your typicalpresentation.
Now I could ask you, but Idon't want to put anyone on the
spot.
But what I typically knewbefore was you know you hear
someone having a seizure?
It's a tonic-clonic unconsciousthings like that.
And you kind of go through.
There's a protocol for that.
Minding fortunately does notpresent that way and I don't
(16:47):
lose consciousness.
I know it's happening in itsonly motor.
With medications it's onlymotor.
You know, I just kind of feeltingling in my right hand Now,
just sensing that you just kindof know your limitations.
You're like, okay, I'm startingto feel it.
It's just it signs for my bodythat hey, today we're going to
bed and tomorrow we're not goingto commit to this, this and
this.
Fortunately and unfortunately,it's really changed my lifestyle
(17:11):
in the last year.
Just tuning into that, and itseems like she has it great and
I got told this and you guysprobably hear this all the time
oh, you look great and I'm justlike, yeah, I do.
Thanks, you can't explain whatyou feel and what you're going
through.
I'm fortunate I can tell whenit's going to be coming on and
keep myself my schedule, changemy schedule around it, work for
(17:34):
myself, plan for you know peopleto take my kids places they
need to be and plan weekends offand days off accordingly.
Andi (17:43):
Does it affect your entire day, or are there times where
maybe it only bothers you for anhour?
Amee (17:48):
Yeah, no, it usually.
If it flares, it's usually like30 minutes to an hour.
When I'm having a flare up,it's been consistent on the time
of day.
So, like today, I've just been,I'm going to get everything I
need to do in the morningproductive and then I'm going to
allow the evening to progresshow it progresses.
No plans, but again, I'm not.
(18:11):
I don't have that free state ofmind like I used to be, like
meet my girlfriends whenever Iwant to at 7 pm and go have
cocktails whenever I want tolike.
That freedom has been takenaway and that's also been
another part of it.
That has, to me, been agrieving process that's real,
real, that's real.
Jen (18:27):
I don't know that isn't real.
Amee (18:37):
When I could just wake up and make decisions that only
affected three people and Icould do what I wanted to
essentially.
And then I have to do aself-check-in and be like, no,
this isn't going to work for you.
Today it still kind of hurts, Istill get FOMO and I want to be
places, but I know I'm makingthe best decision and I have to
be looking out for myselfbecause nobody else is going to
know when that needs to happenbesides me?
Andi (18:55):
Yeah, you advocate for removing the stigma around
epilepsy and talking about itopenly.
What conversations do you thinkneed to happen to create more
understanding around thiscondition?
Amee (19:09):
So epilepsy is an umbrella term.
I talked about this a littlebit before in some other
podcasts, but there's so manydifferent presentations.
If you don't say the umbrellaterm to somebody, you don't
leave room for a conversation,and just talking about it is
what starts a conversation.
To get somebody to know what itlooks like for you.
(19:29):
I think knowing what someone isgoing through helps you support
it.
And questions just like how canI support you?
What do you need?
Those open-ended questionsleave space for each individual
to express their difficultiesand challenges and even
positives that they've come fromthe experience.
Because it's so individual it'sone term but it's so
(19:52):
individualized.
Andi (19:53):
When we're growing up we always think of.
There's one way that epilepsylooks, and it is far from it.
There's been times in our liveswhere we're looking at someone,
talking to someone, and wedon't even realize they're
having a seizure all the time.
What kind of advice would yougive to others in jobs who are
trying to balance their worklife with their illness and
(20:13):
their family?
Amee (20:14):
Yeah, that's where creating a support system is
essential, and you can't do thatuntil you talk about it, right?
I kind of flipped that.
I did it backwards.
I had an amazing support systemand then I was able to tap into
it.
But having that has been keyfor me being able to do what
I've been able to do for thelast year, which is really just
a lot of self-care.
(20:35):
When it comes to jobs, I wouldsay be open and honest about
your condition, because whatI've learned, whether it's a job
or a friend or a family, ifthey're not willing to accept
you and fully you, then that'snot the place you need to be.
And there are many, many placesthat will accept you for all of
you, all the parts of you.
There's no reason to, and thepeople around you need to be
(20:57):
aware so they can best supportyou.
It's not even about hiding it,it's about gosh.
You've just created a supportsystem, like, how beautiful is
that?
And you don't have to lie aboutwhy you can't come in today or
whatever the reason may be.
It's understood and there'sempathy and you've created space
and you've allowed yourself toaccept that.
Andi (21:17):
What would be great for people to realize is that when
we're keeping this big secretthat we think we have to hide,
once we finally open up and webring it up to the circle we're
in, how many other people startchiming in with what they're
dealing with too, and now theyfeel less alone.
All because we were brave andwe finally talked about it.
Yeah, absolutely.
Amee (21:38):
And so many people reach out.
I mean people I've known sincehigh school and that was a long
time ago for me and I've knownfor 15, 20 years, gone on trips
with every single year, who hadno idea I mean people closest to
me had no idea for them to showup and say what do you need?
How can you be here and tell memore?
And that's it.
(21:58):
And when someone asks you thosequestions, it's just like that
weight.
Let me tell you and yes, thisis what I'm asking and it's okay
to ask for that support andthat help in the way you need it
at the time and by being brave,speaking up and telling
everyone what you're goingthrough.
Andi (22:13):
now that they know you have people come out of the
woodwork.
Oh well, I just got diagnosedwith this.
Or, oh, my child's dealing withit.
Or I have a friend that'sreally struggling.
Can she talk to you?
It's a beautiful thing.
Amee (22:24):
That's been the most rewarding part of this.
Honestly, that's been the mostrewarding part of this, like,
honestly, this journey was theleast about me.
It was what I could create andopen up space for other people
to also feel seen and heard in aplace that I never felt like I
could.
Jen (22:40):
That's beautiful.
My eye is sweating.
So yeah, Thank you for openingspace.
Amee (22:46):
Thank you for that.
Andi (22:47):
It's been such a joy to listen to you, and we still have
more to go.
Mental's been such a joy tolisten to you, and we still have
more to go.
Jen (22:51):
Mental health advocacy is a big part of your mission.
How do you suggest othersliving with chronic conditions
start advocating for their ownmental health like you did.
Amee (22:59):
You can go down and search Dr Dougal all day long, all day
.
We all know we've all been toDr Dougal.
But the most important resourceand support system is going to
be, one, finding the rightprovider and two, talking about
it, to finding other people thathave lived and are currently
living.
What you are, and when you areable to come to terms with it
(23:20):
and speak of it, is when youallow space for everybody else
to come in who didn't knowanything about the condition.
Right now, you're the educator,right?
You've done this deep dive,you're living it, you know what
you're going through and now youbecome from patient to victim
to educator, and there'ssomething so empowering about
that process and that's justfrom talking about it.
(23:42):
And I can't emphasize enougheven epilepsy.
I've learned so much aboutother types of epilepsy.
Yes, I've had this for so long.
I only knew my way.
It was like okay, this is whatit is for me.
Yes, I knew a little bit thatthere were other ways that it
presented and whatnot, but I'vereally got to learn and I became
interested in people and theirstories and when you become
(24:04):
interested in people, it justautomatically comes back and
forth and the energy that youreceive and that gets thrown has
no value.
Andi (24:17):
It's been interesting learning about epilepsy over the
years.
We had a little girl come overto a sleepover at our house and
she was like I don't think mymom packed my medicine You've
just seen how big my eyes gotMedicine, what medicine?
Your mom didn't tell me.
And she's like oh yeah, I haveepilepsy.
My husband and I looked at eachother and I'm like were we
supposed to know this?
(24:38):
Are we supposed to be prepared?
Why didn't she tell us?
It was a girl that I knew herparents very well.
Our daughters did soccertogether and I kind of had a
meltdown.
I called my friend and she saidsoccer together.
And I kind of had a meltdown.
I called my friend and she saidoh yeah, it's fine, she had a
dose before she left, she's fine, I'll have her in the morning.
And I had all kinds ofquestions.
That was the first time it cameinto my life and it was a few
(24:58):
years later.
My niece was born in 2009 andshe was born terminally ill with
a condition called Tay-Sachsdisease, and it takes away their
vision, it takes away theirhearing, they have seizures and
ultimately, in 2012, my niecepassed away in the middle of a
seizure and most of her seizures.
(25:20):
You didn't even know she washaving them, unless you were
family and you knew what itlooked like.
It's been interesting learningmore and more about it from so
many people and what it lookslike for different people.
Interesting learning more andmore about it from so many
people and what it looks likefor different people.
Jen (25:32):
Yeah, my high school best friend we're still best friends
to this day.
She had been having seizuresall through high school, didn't
know, and in her adult life shefound out that she didn't have a
corpus callosum.
That is what.
What is it called?
She has ACC and that was whatwas causing her seizures, but
(25:54):
she gets like super hot.
If they're focal she'll juststare, she'll get super hot.
But it wasn't until she was inher feast where she found out
that she had been havingseizures and that she was
missing her corpus callosum.
I was like the fact that you'redoing anything with
coordination, wow, that's adifferent seizure.
I didn't know that it was somany different variations that
(26:17):
they could present, and I'm anurse Like we're not taught all
of the different ways you cansee it, but we are taught that
the three major that may looklike this, it may look like this
, but not the other ones.
I'm glad we're having thisconversation because even as a
medical professional, I don'tknow all of the ways that it can
manifest or present itself andeven with a best friend and
(26:39):
we've been best friends for 30years had no idea that that was
what she was going through tillabout six years ago.
Amee (26:46):
Yeah, yeah, just opening up about it.
There's something and noteveryone's going to get there at
the same time and the samepoint.
Everyone's journey is going tobattles, depending on what's
going on.
What are some ways?
Andi (27:17):
you stay mentally and emotionally resilient through
these challenges.
Amee (27:22):
Today's just one day.
I live my life by a lot ofpositive affirmations and
today's a day and tomorrow'sanother.
I don't look at long-termnecessarily and I go assess the
morning and say these are mygoals for the day, Give myself
some grace if it happens, andtomorrow's another day if it
doesn't.
And there's a few things Iprioritize and everything else
is extra.
(27:42):
I love my girlfriends, but withthe age my kids are and work
and running my own business andowning my own business, that's
third tier, right, Like mypatients, my work, my kids, my
husband, my marital relationshipand then my you know, my
friends, because that feeds mysoul.
So it actually has beenbeautiful in the sense that you
(28:07):
remove all of the negativity andall of those spaces that were
not serving you because you haveno time and energy for them.
And this year is what I've done.
I mean, I quit drinking, whichisn't the point, but those
places in those environments nolonger served me.
I would never have known thathad I not gone through this
process.
I would have just been doingthe same thing because that's
(28:29):
all I knew.
It wouldn't have allowed metime to be like you know what,
Maybe I didn't really enjoy thatas much as I thought I did.
How does this?
Andi (28:37):
work.
Is this something that isgenetic?
Is this something that can bepassed down to your children?
Is it something you need towatch out for, or is it purely
who knows how?
Amee (28:47):
Don't we love the term idiopathic?
It's not genetic.
There's no known cause.
In my case, again, it'ssituational and it's case-based.
It can be trauma-induced, itcan be genetics.
It's associated as a symptom ofmany, many diseases.
My case is idiopathic, justlucky one in 26, which is the
(29:08):
commonality.
One in 26 people have epilepsyand there is no cure for the
time being, and so we're alljust managing as best we know.
How.
Is there anything you have to becareful about?
There are a few things that Iknow my triggers are, and so I'm
very cognizant of keeping thosein track.
One of them is sleep.
I'm on a really strict sleepschedule now.
Like girlfriends wouldn't goout at 9pm, nope, not happening.
(29:31):
Does someone want to meet atsix?
I'm there, I'll be home by nine.
So, like, structure is reallyimportant.
Sleep is a big one for me, andhormones, I think, are another
one which we just, you know,obviously can't do much about.
So it's different for everyone.
But the triggers once you kindof identify those, if you can
identify those, then that doeshelp with management.
Andi (29:50):
Does your husband notice when you need some sleep or when
you need a break?
Is this something that he comesup to you and he's like honey?
I'm noticing something.
Amee (30:04):
He doesn't have to come up to me, it's just like an
unspoken.
He just knows and just comesright in and it'll be seven.
I'll be like I'm up for thenight.
There's no other conversationthat needs to happen.
He's got the rest taken care of.
That's really good.
There's no.
It's beautiful.
I'm very fortunate to have that.
Andi (30:17):
How do you define thriving with an invisible illness and
what does it look like for you?
Amee (30:22):
now.
Thriving means making the bestof every situation that you're
given and no one chooses.
You know, no one's playingroulette and choosing a chronic
illness and saying this is theone I want.
For me, thriving is being ableto do the things I'm able to do
(30:43):
every single day, and that'sthriving for me absolutely what
is one message you want to leavewith our listeners who may be
battling chronic conditions,whether they're visible or
invisible?
Don't let anybody tell you youcan't.
You define what you can andcannot do, and only you know
your condition and yourlimitations, because I don't
(31:04):
think I would have done what Idid if, as a child, someone told
me I couldn't because of anillness.
Jen (31:10):
What is your 2025 word?
Adaptability, adaptability.
Amee (31:15):
Yeah, that's a great question, because I don't do New
Year's resolutions.
That is my word every singleday is I love it, jenny?
What's yours?
Jen (31:23):
Adventures.
Mine was fearless, fearless andvocal, so this podcast thing is
out of the box for me becauseI'm a very hey kind of person
yeah, so proud of you.
Amee (31:34):
For you, I was just gonna say the same I'm so proud of you
yeah, this is.
Jen (31:38):
This is new this is great.
Andi (31:40):
Andy and I about four years ago, and I was that crazy
white girl that wouldn't leaveher alone yeah, wanted to send
me happy mail and look at at us.
Jen (31:48):
Now I got stickers and stuff, just yeah.
Andi (31:52):
That's funny.
You hear her say this story topeople all the time and it's
true.
Jen (31:56):
She randomly asked me what's your address and I'm like
huh, whatever.
And then I get this envelopeand I'm retired military.
So you start getting randomenvelopes from people you've
never met.
I said well.
I was like, well, what is this?
(32:16):
Well, you know, this reallynice white lady that I met on
the internet sent me happy mailand it was it was the sweetest
card ever and it came like righton time.
So you guys aren't gettinghappy mail from Gracefully Jen I
don't know who are you even,and why not?
Because they're tearjerkersright on time every time.
That's beautiful.
Andi (32:29):
I could say the same about you and many others too, though
you guys for me as well.
Well, this has been a fantasticchat, amy.
It's been wonderful to have youon here.
Undoubtedly, I think ourlisteners are going to resonate
so much with all the incredibleinformation you've shared.
How is the best way for someoneto get in touch with you if
they want to follow you or getto know you more?
Amee (32:52):
Right now I'm just on Instagram.
That's the only place I'mhiding behind the Bindi's and
there's kind of a significanceto that.
If quickly, I'll go through it.
But the Bindi is the third eye,or the dot worn by Indian women
, and this was kind of you knowwhat.
We're gonna take that off andwe're gonna talk about what's's
real, because that's just wherewe're at now.
So that's my handle.
(33:12):
It might not make a lot ofsense if you know from a
different culture or origin, butI'm on Instagram only at the
current time and working ongetting some other
certifications and working onmyself for the time being.
But reach out to me for anytype of support night day
message, don't hesitate.
Jen (33:29):
Thank you for an amazing conversation, thank you for your
vulnerability, thank you foryour fight, just thank you.
Thank you for beingauthentically you.
There's a glow to you.
So thank you for just showingup in the capacity you have, on
the days that you have extracapacity or not, but thank you
for being authentically you andspending some time with us.
Thank you for having me.
Andi (33:50):
I appreciate it, ladies, so listeners until next.
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