June 9, 2025 • 56 mins
#130. Not all losses are bereavements. Sometimes they follow a diagnosis and impact someone for the rest of their life, like with our guest in this episode.
This is The Silent Why, a podcast on a mission to explore grief, asking if hope can be found in 101 different types of permanent loss.
Loss #63 of 101: Loss through chronic illness - Lupus
In this episode, we meet Olivia Abousaid - a grief coach based in Los Angeles who lives with the autoimmune disease Lupus. Olivia shares the lesser-seen grief that comes with chronic illness - losses that don’t always get named or acknowledged.
We explore the impact of Lupus on daily life and identity, the challenging task of letting go of independence and learning to ask for help, navigating invisible grief as both a coach and a patient, the mental weight of “shoulds” and societal expectations, and finding agency and hope amidst physical limitations.
From missing out on sunny afternoons with friends to facing the fatigue that alters routines and dreams, Olivia’s story speaks to anyone who has experienced loss through ill health, medical diagnosis, or an unexpected change in life’s trajectory.
This is a powerful conversation about learning to grieve what’s gone, while choosing to hope in what remains.
To find out more about Olivia, visit: www.pact-coaching.com
www.instagram.com/pact_coaching
https://linktr.ee/pactcoaching
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Olivia Abousaid (00:02):
Hi, I'm Olivia Abusaid and I'm here to talk
about my loss and grief ofgetting diagnosed with an
autoimmune disease, specificallylupus.
Claire (00:16):
Welcome to The Silent Why, our podcast on a mission to
uncover 101 different types ofpermanent loss, while looking
for hope and hearing from thosewho have experienced them
firsthand.
I'm Claire Sandys.
Chris (00:26):
And I'm her husband, Chris, and in this episode we're
chatting with Olivia Abousaid.
She's a grief coach based inLos Angeles in California, who's
diagnosed with the autoimmunedisease lupus.
Claire (00:38):
On this podcast we explore all kinds of loss, not
just bereavement, and in thisepisode, loss 63 of 101, we talk
to Olivia about what it meansto live day by day with a
chronic illness and the manyinvisible losses that it brings,
from daily routines tolong-term dreams.
Olivia Abousaid (00:54):
Instead of cleaning my apartment all the
time, maybe I get someone inonce a month to help with the
cleaning and that's very big forme and for some people it's not
that big a deal.
For me it is because I'm notaccustomed to asking for help.
I'm such an independent personI always have been.
Chris (01:11):
Now I'm having to admit in LA, as well as coping with
fatigue and the slow path toacceptance and the challenge of
letting go of the pressure toalways be productive.
Claire (01:30):
Even as a grief coach herself, Olivia shares how
difficult it can be to recogniseand honour your own grief For
myself.
Olivia Abousaid (01:38):
It gets a little messier.
You know, it is sometimes hardto recognise your own grief when
you're the one going through it, when you're dealing with the
day-to-day busyness of life.
Claire (01:50):
Despite all that lupus has taken from her, Olivia
continues to choose hope,finding it in small daily acts
of courage and self-care.
Chris (01:58):
You might think that she should remain mindful of taking
control of her situation,refusing to let others dictate
how she should feel or what sheshould do, shouldn't she?
Olivia Abousaid (02:07):
Try to stay away from shoulds, because who
is shoulding you?
Why is society shoulding you?
Why are you shoulding yourself?
Why are you shoulding otherpeople?
We don't want to cling too muchto these things that we either
prescribe to ourselves or thatsociety prescribes to us,
because they don't do us anyjustice.
When you have something like anautoimmune disease or
(02:27):
childlessness or things likethat, certain things have been
taken out of your control.
But that doesn't mean that yourlife always has to feel out of
control or that you were alwaysa victim to your circumstances.
We do still have some control.
Claire (02:43):
We think this is an episode that will resonate with
anyone that's known the lossesthat can come with ill health or
a medical diagnosis, especiallyone that instantly changes your
day to day or your future.
Chris (02:53):
And to begin our conversation, we asked Olivia to
tell us a little bit aboutherself.
Olivia Abousaid (02:59):
So my name is Olivia Abousaid.
I am a master certifiedprofessional grief and
transformation coach, and I'mhere to talk about my experience
with grief and loss as itpertains to having a chronic
illness, in my case,specifically lupus.
Chris (03:20):
Take us into that straight away, then I guess
Lupus.
What is lupus?
When were you diagnosed?
Tell us a bit about that.
Olivia Abousaid (03:27):
Right, I'm glad you're asking.
When I got diagnosed I had noidea what lupus was, and I think
I saw something on the LupusFoundation website recently that
said, over 60% of people in theUS here don't know what lupus
is, so it's not surprising.
Lupus is an autoimmune diseasethat affects all of your organs,
(03:51):
affects your body.
It's basically your immunesystem.
Instead of attacking theviruses and the bacteria that
come in to your immune systemlike a regular person's, it
instead misinterprets your owntissues and organs as the enemy
and is attacking your body on aregular basis.
So everybody who has lupus iseither on an immunomodulator or
(04:17):
an immunosuppressant to bringdown that overactive immune
system and to try to bring downthe inflammation that comes with
that, and it can make you verytired.
That's the main complaint ofpeople with lupus.
It's definitely one for me.
Fatigue is something I strugglewith all the time, and some
(04:39):
people have it bad enough thatit is attacking their organs.
They have some kidney failure.
That's a very prevalent one.
There is lung involvement,heart involvement, liver
involvement.
When I first got diagnosed, avery scary statistic that I read
(04:59):
was that, as a person withlupus, you are 50 times more
likely to have a heart attack.
That's five zero, which Ididn't know what to do with that
information when I first gotdiagnosed.
I still don't entirely, but Itry not to live my life around
such a crazy statistic.
(05:20):
So you know you can't.
It's too much to try to keepthat in mind all the time and to
feel like any minute now youknow something terrible could
happen.
Chris (05:31):
So how long has this been in your life for?
Olivia Abousaid (05:33):
You know it's hard to say.
I think I've probably had it myentire life.
I always got sick very easily.
Growing up and into myadulthood I've always gotten
sick very easily.
And it's not just that you getsick easily, you get sick worse
and longer than other people.
A simple cold for someonethat'll last maybe three to five
(05:55):
days, maybe a week for someone.
For me will last two to threeweeks, sometimes even longer.
The one time I got COVID, I hadit for a full month and I got
it while outdoors double maskthree weeks after getting my
COVID vaccine, because I'm justthat immunocompromised yeah,
(06:16):
it's really easy to get sick.
So I think I've probably had itmy whole life.
But I didn't actually getdiagnosed until about three and
a half years ago.
Because what happened for me issomething that is very common
for a lot of people with lupusand other autoimmune diseases is
that it can take years toactually get a diagnosis.
(06:38):
So I kept going to doctor afterdoctor and saying I'm exhausted
all the time, I'm very tiredPlease help me figure this out
and they were running all thewrong tests.
Nobody thought to test forautoimmune disease and beyond
that I was getting these sort ofplaques on my face that looked
(06:58):
like eczema.
So I was going to adermatologist and saying what is
going on and they would say, oh, this is eczema or oh, this is
support dermatitis or whateverit might be.
And it turned out to be lupus.
Plaques and that's how I firstgot diagnosed was through my
skin.
Finally, a dermatologistthought to take a biopsy and it
(07:21):
came back positive for lupus.
So I actually have the systemiclupus inside my body and I also
have cutaneous lupus that Ideal with on my skin.
Chris (07:31):
So when you had the official diagnosis, just tell us
a little bit about whether thatwas freeing or was it a burden.
Was it a positive relief to getthat diagnosis, or did it
actually then open up the doorto okay, this is my life now.
I'm not too happy with that.
Olivia Abousaid (07:55):
All of the above, I would say it was a bit
of a mixed bag, you know,because it's never nice hearing
that you have one of the moreserious autoimmune diseases out
there.
So that was a lot to kind ofdeal with and come to terms with
, and in some ways I am stillcoming to terms with that.
But there was also the sense ofrelief in that okay, now this
has a name, I know what I'mdealing with, I can do some
(08:18):
research, I can get the propermedical care that I need,
Because for years I mean years Iwas going to doctors, and
that's so frustrating,especially when you keep
complaining of the same symptomsand I'd have them say well,
your lab work looks fine, whicha lot of doctors I won't say all
, but there are a fair amount ofdoctors who go only by lab work
(08:41):
or blood work and aren'tlistening to patients when it
comes to symptoms, and so it'salso important to find the right
doctors who will listen to youand your symptoms, because you
know your body best.
But it definitely was a mixedbag of relief and and some grief
as well.
Claire (08:58):
That's when the grief started for me were you the sort
of person you mentioned thatyou've seen some statistics that
were quite scary about thechances of heart attacks and
things.
Were you someone that startedresearching it straight away or
did you wait a while?
What's your kind of level ofjumping on Google and finding
out what this is?
Olivia Abousaid (09:16):
It was right away.
I needed to know exactly what Iwas dealing with.
I had never heard of lupus.
I knew nothing about lupus.
I started to learn about whatit was.
Different celebrities that hadit.
Selena Gomez is probably themost well-known celebrity who
(09:36):
has it.
She actually had to get a newkidney.
So that's something that peoplewho have it a little worse than
me that may have to deal withat some point is organ
transplant.
So I'm the type of person thatlikes to research and know what
I'm dealing with.
So I really looked into it.
(09:57):
And what should I be eating andnot eating?
What should I be doing and notdoing?
What more do I need to know?
How can I talk to this, talkabout this with family members
so that I can try to build somesupport around me?
So it was, it was all of it.
Claire (10:15):
Once you got the diagnosis, were they able to
sort of help you and make life,day-to-day life, easier with
medication?
Now you knew what it was, orwas it just it's still just?
You knew what it was, or was itjust, it still just?
You knew what it was, but itwas still just as hard.
That's a good question it did.
Olivia Abousaid (10:31):
Getting that diagnosis did make it easier in
that I am on the medicine nowthat I need to be on and my
blood work has normalized sincegetting that diagnosis.
So in that we are taking careof my disease In another sense.
I still have all this fatigueand there's a lot of grief
around the fatigue and thelimitations of having that
(10:53):
fatigue that I, you know, I'mstill dealing with on a daily
basis all the time, and I know alot of people with autoimmune
disease deal with that as well,and so I know I'm kind of doing
what I need to be doing.
There's also sunlight.
It turns out we're supposed toavoid sunlight because we're
(11:14):
sensitive to UV.
Even fluorescent lights can putoff quite a bit of UV, and so
you know, when you go to big boxstores you try not to stay too
long, things like that.
So it's things you neverthought to look out for.
There's some grief around notbeing able to go out in the sun
too much, because in thesummertime I used to love to be
(11:36):
in the sunshine and to get agood tan and all of that stuff.
Especially here in Los Angelesthere are a lot of great
summertime activities but youknow we, we can't be in the sun
too much.
So there's been some griefaround feeling, I call it.
You know, I feel a little bitlike a vampire where it's.
You know, avoid the sun at allcosts.
(11:57):
So it's uh, you know I I canjoke about it, laugh about it,
but there is with that too.
Chris (12:04):
And we'll certainly dig into that.
I think I just want to pick upon what you were saying about
research, because in myexperience with Claire and all
the hours and hours and hours ofresearch that Claire's done
into menopause, into the PMDDthat she was diagnosed with, the
learning about it and thentweaking something, and then
learning more and tweakingsomething it's really helpful to
(12:27):
do but it's not fun, is it?
You can't find a fix in theresearch.
You're constantly findinganswers to things you don't
really want to have to do butyou realize I'll have to try it,
and then trying it takes weeks.
So it's quite exhausting to dothat level of research, to learn
about how you can cope withsomething better, how you can
come to terms with something,and even then when you're
(12:48):
sharing experiences.
Yes, it's great to havecommunities where you can share,
but we're all so different, sowhat works for you might not
work for the 10 other peoplechatting on facebook.
Whatever it might be.
Stuff can be quite bespoken.
Everyone has an opinion and asolution and a try.
This it worked for for me.
There's so much to try, so muchto read.
Yeah, how was that experience?
Olivia Abousaid (13:07):
for you.
It's so true.
Everything you're saying isringing true because you know it
has been a learning process.
I started researching at first,but things change all the time
with new research and so you dokind of have to stay on top of
it.
I'll go to Lupus, la.
Here is great about havingdifferent seminars and things
(13:28):
like that with rheumatologistswhere they explain different
medicines or explain how to dodifferent things or how to live
with your lupus in differentways, and so that's been great.
Support groups are great, butit is exhausting trying to kind
of keep up with everything andit's things you don't even think
(13:50):
about, like the sunshine thing.
If I know that there isn't muchof a choice about it, I have to
be in the sunshine for a littlebit today sunscreen everywhere,
or perhaps putting on your UPF50 clothing, wearing a hat,
trying to plan how you canminimize your exposure to
sunshine and things like that,and it's things that other
(14:13):
people don't have to worry about, that you have to take the time
to prepare for and to do andthings like that For people who
have no idea about this kind ofthing.
Claire (14:23):
They've led a relatively healthy life.
They go about their day.
You know, occasionally have amedical thing pop up and then it
goes away again.
Give us a bit of an idea of howit affects you on a daily basis
.
What are the sort of thingsthat it's sort of taken from you
or restricted in you or maybeallowed you to do?
But how does it affect you dayto day?
Olivia Abousaid (14:42):
The fatigue mainly is what really affects
everything.
It informs everything.
In my life there has not been alot of solutions for me and for
a lot of the people in theautoimmune community that are
dealing with fatigue.
You know we're told the thingsthat are told to everyone by
(15:04):
doctors and that you need to eathealthy and try to get enough
sleep and limit social media andthink positively and do yoga
and get exercise and all thethings.
So you try to do all thesethings you try to do right by
yourself, but the fatigue is canbe really debilitating
(15:27):
sometimes and that is somethingI deal with and I think that's
where I feel the most griefabout having lupus is that I
used to be very A-type andambitious and high achieving and
I get so much done every day.
I prided myself on productivityand all that I could get done
(15:47):
and all the things and I'vereally had to slow down quite a
bit these past few years,especially now with being
middle-aged and havingperimenopause and you get more
tired as you get older anyway,but it's really multiplied when
you have lupus and other healththings going on.
(16:09):
One thing about lupus is thatyou're more likely to have other
autoimmune diseases as well.
So it almost feels like ano-win situation sometimes when
it comes to that, but it'slearning to work with your
limited energy, it's continuingto try at that exercise, which
(16:32):
isn't always easy, but it'ssomething worth trying for
because in the long term it canhelp your energy level a little
bit.
And there's something to besaid for acceptance of where you
are, and that is a work inprogress for me.
There's something to be saidfor acceptance of where you are,
and that is a work in progressfor me.
That's not to say that thegrief will go away in adapting
to this new, much slower way oflife, but it's also necessary to
(16:56):
come to some sort of acceptancewith it that this is just how
it is now, instead of beating myhead against a wall.
This is what it is, so let'smake the best of these
limitations.
And one thing to note also isthat you know we're sort of from
a young age.
We're told societally,structurally, that we have to be
(17:17):
these super productive peoplebecause that's capitalism, you
know.
And so some of that is breakingout of that too, where, whether
you have an autoimmune diseaseor not, it's allowing yourself
to rest when you need to rest,to take it slow to take it easy
to take that vacation time.
So in that sense it's nottotally bad to learn to slow
(17:38):
down.
We don't always have to beproductive 100% of the time, so
there's some pluses to it.
When you have an autoimmunedisease, it's always about kind
of looking, trying to look atthat silver lining.
It's not always easy, but it'sworth keeping in mind.
Claire (17:55):
Do you worry about when you're sort of, like you said, a
can-do person and productivityseems to be this thing that's
put on this pedestal nowadays?
Do you worry about being judged?
Because I know with fatigue itcan be very easy to well.
I feel like this sometimes, tofeel like it looks like you're
being lazy and there's that fearthat other people see it a
different way.
That might be a personalitything, though.
Is that something you've everworried about?
Olivia Abousaid (18:16):
I do worry about that from time to time.
I have been building mycoaching business and it's a
passion project of mine.
I love the coaching, I lovehelping people, but it's it's in
all honesty, it's moving alittle slower than I would like
because I have to take constantbreaks for my rest.
And so, you know, there's theside of me that says, you know,
(18:41):
I have to offer myself grace andit's something that I tell to
my clients.
To offer grace.
It's OK to rest, it's OK togrieve, it's OK to take time for
these things, but it's alsoit's not always easy to do that.
It can be hard.
Chris (18:57):
Totally understand that.
I think we've experienced, yeah, again that and just
conversations between the two ofus about how often you feel
like somebody might be, orgroups of people, being the one
that needs to rest or needs moresleep.
Just how that, yeah, how thatinterrupts friendships,
(19:18):
relationships and even, like yousaid, with businesses.
Claire (19:20):
You know it's very.
You know I'd like to do morewith the podcast and stuff is.
You know it's very.
You know I'd like to do morewith the podcast and stuff.
And when I can't or I don't,there would have been a day and
age when you wouldn't have knownif anyone else was doing
anything with their business,because you just were in your
own little kind of silo workingaway.
But now we have social mediaand the internet.
You're aware of all the otherpeople that look like they're
doing amazing and they'reputting out posts every day and
they've got these videos andthey're on TikTok and they're on
(19:42):
you know.
And so I think that doesn'thelp, because it and they might
not be doing it themselves, theymight be struggling to do it,
you don't know, do you, but itdoes it can very quickly make
you feel like you're failing ina in certain ways, which is sad.
Olivia Abousaid (19:55):
Yeah, it does.
I mean that's a good point.
I feel guilt around not postingall the time about my coaching.
I feel guilt about having tocancel on friends last minute
sometimes because I'll be hitwith a wall of grief and I
literally I just need to spendthe next few hours on the couch
laying down instead of going andhaving fun with my friends, and
(20:20):
you know I feel like I'mletting people down when I do
that.
So I've been trying to speakvery openly with my friends
about here's what I'm dealingwith with my health and with my
fatigue, and I think most ofthem really do understand it's
my own personal like oh, I'mletting people down, or I'm not
posting as much as I should, orI should have put in six hours
(20:42):
today on my business, but I onlydid two as I should.
Or I should have put in sixhours today on my business, but
I only did two.
Things like that, where thereis a guilt aspect to it that you
know.
Eventually, hopefully, I canallow myself that grace to say I
don't need to feel guilty, andthat is part of why I'm being so
open with friends about it isthat I shouldn't have to feel
(21:04):
guilty about it.
It is health related.
Chris (21:06):
I can't remember who it was that said to me several
months ago now about somethingabout the word.
Should that as soon as you hear, or use the word should you're
bringing somebody else's sort ofrules?
into it by whose rules are youplaying if you say I should be
doing this or that?
So yeah, I've become quitesensitive to that.
You're very comfortable,clearly, with with using the
word grief.
It's something you work in, youtalk about yeah, you were just
(21:28):
referring to it then certainlywith again spending time resting
if need be, or just on your own.
What has that process been likeof recognising, for a start,
that this is something that Ineed to grieve, and how messy
has it been learning to grieveit?
Olivia Abousaid (21:46):
you know that's such an interesting topic
because when I'm working withclients I can so clearly see
what they're going through.
I can see their grief, I canhelp guide them through it and
call it by its name, et cetera.
For myself it gets a littlemessier.
(22:08):
You know, it is sometimes hardto recognize your own grief when
you're the one going through it.
When you're dealing with thelike, the diagnosis, my first
initial response wasn't to think, oh, I'm going to grieve, now
(22:31):
I'm going to start grieving.
It was more that I just want tolearn all I can about it.
I want to learn more.
I don't want to feel like avictim to this, but sometimes
you do have to take the time toappreciate that that is what's
happening, that naturally you'regoing to grieve certain things
and so, uh, I have to do thatwork, to be a little more
(22:54):
introspective, practice what Ipreach with the clients and work
with that grief.
But there's a lot of lossassociated with having an
autoimmune disease, things thatyou don't even think about, like
time.
I think that's something that'snot necessarily talked about
(23:14):
enough, even within communitiesthat deal with these autoimmune
diseases and lupus.
A lot of the time it's aboutthe loss of energy, the fatigue,
but what that can translate tois also a huge loss of time.
It's kind of like what I wassaying with you know, if you're
having to lay down for four orfive, six hours, that's time you
(23:38):
can't do anything else, and soit also feels like a bit of a
loss of independence.
You know I used to pride myselfon I can go it alone, I don't
need anybody, I can do this andI can do that.
And it's another one of thosesilver lining things where you
have to kind of learn to reachout for help and build community
(24:01):
and I think we're learning thatmore and more societally is
that community is so importantfor us and it's not always easy
to reach out for help, but it'ssomething that I think benefits
all of us in the end.
Claire (24:15):
There's so many losses attached to something like this,
right, I think you know overthe years you'll probably still
be noticing them forever almostlittle things that will come in
or that you can't do.
And I think that's why it's soimportant to talk about these
kinds of losses.
It's why we started the podcast, really, because with a
bereavement there's a loss of aperson and people kind of know
or roughly expect what that kindof grief looks like.
(24:35):
But with this sort of thing itwas the same with our
childlessness and the otherthings we've talked about.
They're a little bit more vagueand you think you know what
you've lost.
With childlessness it's quiteobvious there's a loss there.
You haven't had children.
But when it comes to a diseaseor a condition or health, it's a
bit more fuzzy because itdoesn't look like a loss to a
lot of people.
It fuzzy because it doesn'tlook like a loss to a lot of
people, it just looks like adiagnosis.
(24:56):
So it can take a while for youto realize oh, this is what I've
lost, not just health or energy, but I've also lost hanging out
with my friends.
I've also lost hanging out inthe sun, all these other things
that kind of come around it.
So it's such an interestingthing to talk about.
How do you think this kind ofgrief differs from a bereavement
For you going through it?
(25:16):
Do you know how it differs inthat way to kind of go through
it, or would you say it's quitesimilar?
Olivia Abousaid (25:21):
I would say it's a little bit different.
Actually, it's similar in thatwhen we whether someone has died
or we've gotten a diagnosis forsomething, you're going to have
initially an acute stage whereyou're kind of dealing with the
loss and the ramifications ofeverything all at once, you know
(25:43):
, and then you kind of settleinto this grief stage where it
just becomes sort of part ofyour life and part of your day
to day, and so in that sensethere's a similarity.
But you brought up a good pointin that, because it's a bit
more vague than someone losing afamily member or something.
There's this disenfranchisedgrief where society may not
(26:05):
always recognize that it isgrief or recognized to sort of
be there for you, which isanother reason I try to be so
open about it with my family andwith my friends to let them
know that this is challenging.
It's not easy having this, it'snot easy dealing with this.
(26:28):
It's almost like losing a petin a way as well, because
society kind of understands thatloss.
For about a week or so.
They'll let you sort of grievethat for about a week.
Okay, that's a bad thing thathappened, but at the end of the
day it's just this or it's justthat where people kind of
justify not adding that value toit that there would be if you
(26:53):
lost someone.
But it is a grief and it's avery deep grief and it's
something that we need to taketime with and it's ongoing.
Grief doesn't go away.
You just kind of learn to livewith it in different ways, and
something I do in my coachingwith my clients is to try to
find some hope through the grief, recognize the grief and
(27:16):
transform it into community,into action and things like that
.
So that is something I'mworking on myself, but it's not
to undermine the importance ofthe grief and the loss and going
through all of that.
Chris (27:30):
It's really interesting hearing you pick out some of the
things, I guess, that affectyou in terms of the losses or
that you've really experiencedor felt quite keenly.
I mean, would you go so so faras to like list what losses
you've experienced, or is itjust you know one loss per
season?
Olivia Abousaid (27:48):
I actually wrote down a list of losses as I
was prepping for this podcast,because sometimes when you're
dealing with grief and trauma,it can kind of be this nebulous
bit of emotions that's sort ofswirling around in your head and
in your heart.
And it was actually a goodexercise for me to sit down and
(28:10):
write out these losses and howthey have made me feel and how
they've contributed to the griefthat I've experienced.
And it was more loss than Ithought.
Actually.
It kind of surprised me andit's simple.
Things like you get some hairloss with lupus there are some
people with lupus who fully havealopecia.
(28:31):
They've lost quite a bit ofhair actually and how that can
affect your self-esteem and yoursense of self-worth, as you can
develop rashes or you lose hairor things like that.
On the physical side of itoutwardly physical there's the
loss of energy.
There's some loss ofindependence, as you realize you
(28:53):
need to reach out for help, notbeing able to spend time in the
sunlight there's that loss.
Faith in the medical system wasa big one for me.
I thought doctors were sort ofthese demigods in a way, who
they know everything there is toknow about medicine.
They're the experts.
Surely they can diagnose me inno time.
But the fact that it took yearsand that I got a lot of
(29:16):
incorrect diagnoses beforegetting the correct one made me
realize they are human andfallible, and so there was some
loss of trust in the medicalcommunity.
For me, time is one that is nottalked about quite as much, but
having to spend so many hours aday resting, laying down, takes
(29:38):
time away from everything else,so learning to slow down is
really a part of it.
A lot of people with autoimmunediseases experience a loss of
income because they're too tiredto work a full-time job, and
that one is a really big onebecause it's almost like having
an autoimmune disease meansyou're more likely to live in
(30:00):
poverty, plain and simple, andthat's a big loss right there
for a lot of people.
A lot of grief comes with thatMental acuity.
You start to get more brain fog.
When you have lupus and I'msure with other autoimmune
diseases I don't think asclearly as I wanted.
This may sound kind of silly,but it's always been my dream to
(30:22):
be on Jeopardy, that game show,but now I question if I can
actually do that, because I haveso much brain fog sometimes I
can't even think of the rightwords to say sometimes, and that
definitely goes back toaffecting my sense of self and
self sense of confidence becauseI've always been sort of quick,
witted and sharp andintelligent and it feels like
(30:46):
it's deteriorating a little.
So it's it's hard to deal withand, in turn, lastly, that does
affect your mental health.
It's sort of the loss of mentalhealth in dealing with the
depression and the grief of allthese losses and the new
limitations that you have.
It can really affect mentalhealth.
(31:08):
A lot of people with lupus andautoimmune diseases struggle
with depression and anxiety andmental health issues and, as
such, suicide rates are higherfor people in this community.
And so it's so important if Imay put this out there if you
know someone with an autoimmunedisease, it's so important to
(31:30):
reach out to them and to try tobuild that community with them,
to let them know that you'rethere to check on them, offer
help in any way you can, even ifyou're there to check on them,
offer help in any way you can,even if you're busy.
Sometimes just saying hey, I'mthinking of you can go a long
way with someone who is dealingwith autoimmune disease, because
it is such an isolating thing,especially when you're not able
(31:52):
to go out and connect withpeople as much as you would like
, it can really start to feelvery isolating.
So, you know, just try to bethere for anyone who who is
dealing with that.
A lot of people don't know whatlupa says, so I always invite
people to ask, and google existsin the world so you know they
can always look up things aswell, but I'm always happy to
(32:13):
answer questions what you weresaying there was making me think
again about how a community cangather around someone that is
mourning the loss of someone ora pet.
Chris (32:24):
There can be colleagues, friends, family that will join
you in that.
When you've got something likea chronic condition, I expect it
can be quite lonely at times.
This is my thing and I've gotto sort of come to terms with it
myself.
Do you find it's a lonely pathto tread or do you feel like you
have a good number of closefriends or family members who
(32:45):
who get it, who sit with you,who grieve with you?
Olivia Abousaid (32:50):
I think it's been a lonely path but it's
getting a little bit easier aswell.
As I have started talking aboutit more with them, I realized
that lonely path was making mefeel very isolated.
I don't personally know anybodyelse with lupus.
When I go to those lupussupport groups that's really the
(33:18):
only time I interact with otherpeople who have lupus.
So it has been kind of a lonelyand isolating path and sort of
feeling like you're alone inthis, like I got diagnosed with
this thing and I don't knowanybody else who has it or can
understand what I'm goingthrough.
So more and more over time,especially in these past few
months, so more and more overtime, especially in these past
few months, I've really beentalking it up to my friends and
(33:38):
really emphasizing the griefaspect of it and the fatigue
aspect of it and how that'saffecting me and I think it is
kind of sinking in a little morenow with friends.
I think they do understand menot always being physically
available to hang out, alwaysbeing physically available to
hang out.
They know I'm always there forthem if they need anything via
(34:00):
phone call or maybe we can geton a FaceTime or something, but
I may not always be physicallyavailable for them, and I think
that's feeling a little betterfor me as I really open up about
talking about it, because it'smaking me feel less isolated
about it and it's making me feellike, okay, people get it more
now.
I have a little more of acommunity around myself now and
(34:23):
so you know, I would encourageanybody to do that.
Claire (34:27):
What's been the sort of the hardest part of the journey
so far?
If you look back frompre-diagnosis through to finding
out where you are now grieving,is there a stage that you think
has been the hardest to getthrough?
Olivia Abousaid (34:39):
I think you know, possibly recently it's
hard to um say, because recentlyI've been feeling the most
grief about it, but also themost enablement about it,
because I'm sort of, you know,realizing that I'm going through
(35:00):
all this grief and stillgrieving it very much has made
me realize that I need to changesome things, and so that's why
I'm talking about it more withpeople and that's why I'm really
starting to define where mygrief lies, the losses that I
felt, all of the losses, callthem out by name and understand
(35:24):
why the grief is what it is,because I've lost so many things
because of this and there's anempowerment in starting to do
something about it.
I'm getting to the point withmy fatigue where I'm realizing I
can't keep going it alone.
I do live alone.
My family is a few states awayand I live alone here and I've
(35:47):
got great friends, but they havetheir own lives.
They're busy as well, they worklong hours, and so I am
realizing that I need to searchout some help.
Maybe, instead of going to thegrocery store a couple of times
a week, I get grocery delivery.
Instead of cleaning myapartment all the time, maybe I
(36:10):
get someone in once a month orsomething to help with the
cleaning and that's very big forme.
For some people it's not thatbig a deal.
For me it is because I'm notaccustomed to asking for help.
I'm such an independent personI always have been I don't
easily ask people for help.
Now I'm having to admit tomyself I can't do it all and I
(36:34):
do need help and there's a lotof grief in that, and I'm really
realizing that lately anddealing with all of that, but at
the same time feeling like, no,this is good, because I'm
recognizing certain things, I'mdealing with certain things and
starting to make plans for howcan I get help?
Where can I get help?
(36:54):
So it's a little bit of both.
It's a bit crazy.
It's a two-sided coin.
Claire (37:00):
It's a testament to you and how you're dealing with it
that at the worst point, whenyou're feeling the grief the
most, you're actually learningto reach out and ask for help,
also sharing it with friends,and therefore it's helping you.
And I can really see how if youdidn't do that at that point,
that worst point of grief wouldbecome even worse because you
would be alone.
It's a testament to how you'rehandling it that it's both the
(37:20):
good and the bad at the sametime.
Olivia Abousaid (37:27):
It's almost like hitting a breaking point in
a certain way, for lack of abetter term.
I don't want it to sound superdramatic, it's not quite that,
but it is.
You hit this point where you'relike I can't stay this way
anymore.
And I think you know with myown clients that's.
The point at which they reachout to me is when they've hit
this breaking point and they,you know, they've been in grief
(37:47):
for months, or possibly evenyears, and they say I can't stay
this way anymore.
It's overwhelming.
Something has to change,something has to transform.
And I think that's where I amnow in my own grieving process
is that it's feeling a bitoverwhelming lately.
It's a lot, but I know thingshave to change and that's when
the real transformation canhappen too.
(38:09):
And I think that's what's kindof informing.
That little bit of hope for meis knowing that you know, if I
make these changes, then it canhelp.
You know, I don't have to bethis exhausted all the time.
These seemingly little thingscan actually really help.
Chris (38:26):
Is there a healthy balance to find, to achieve
between saying lupus,verbalizing it, asking for help,
you know, talking about it withfriends and family on the one
hand, but, on the other hand,avoiding the sort of negative
connotations around using it as,like a label.
You might have friends orfamily that will often say, oh,
I can't because of this, it'sthat you know you've got this
(38:48):
label now and you just keeptelling us about it, et cetera,
et cetera, where it can be a bitunhealthy.
Is there a balance to be foundin that of just knowing how much
to talk about it without goingon about it too much?
Olivia Abousaid (39:00):
I think it hasn't been too much of an issue
so far.
But I think you know, I havebeen finding more of that
balance lately where I want totalk about it more and I want
people to know what I'm goingthrough.
But I don't necessarily want tohammer them over the head with
it.
I don't want it to become mytotal identity, like I'm lupus
(39:23):
girl, you know.
I don't want that to be allthat I am to people.
I just want people to kind ofrecognize that this is my
struggle, this is what's goingon with me, but I don't want it
to be my total identity withpeople, you know.
Claire (39:40):
Yeah, I understand that.
One of the things we ask allour guests is how they've felt
about the question.
Why have you struggled withthat at all?
Has that been something you'veasked yourself?
Why me?
Why am I going through this?
And if you have, have youanswered it or you know where do
you sit with that question?
Olivia Abousaid (39:56):
Oddly, I've never really asked myself that
question.
I know a lot of people do whenthey get a diagnosis, I think
because I've always had healthissues and I think, I suspect
that I've always had lupus, andso it wasn't necessarily a shock
that, oh no, I have thisautoimmune disease now.
(40:20):
It wasn't.
I'm healthy, healthy, healthy,and then one day all of a sudden
I'm sick and I have thisautoimmune disease.
It was much more gradual for me.
It took way longer than itshould have to get that
diagnosis, but it just didn'tsurprise me when I got it.
So I never had that thoughtprocess like why is this
(40:40):
happening to me?
Because I feel like I've alwaysbeen dealing with it in some
way or another.
Chris (40:46):
I've got one more question before we start talking
about the journey with hope,and that's to come back to
something you said about 10, 15minutes ago about coming to
terms with it.
Olivia Abousaid (41:05):
There was almost a sense that there's an
inner wrestle that you knowyou're not to where you want to
be yet in terms of acknowledgingit and accepting it.
So what is stopping you, do youthink, getting to that point
that you want to be?
I think part of it is thathyper independence that I have
and knowing now that you knowit's time to ask for help.
I was honestly looking at thefuture with a lot of anxiety,
like what happens if I get tothe point where I'm too tired to
take care of myself?
(41:26):
What then?
And I didn't really have a goodanswer for myself.
So it was causing more and moreand more anxiety for me.
I don't know what to do aboutthe future and kind of recently
realizing that, you know, maybeI should look for help now,
before I get to a point where Imay or may not be debilitated or
(41:50):
may not be able to take care ofmyself.
And that was kind of arefreshing thought for me that
hadn't occurred to me, that Ican help myself now, I can do
something about it now, beforegetting to that point and kind
of always focusing on that worstcase scenario for the future.
I want to be hopeful about thefuture.
(42:12):
This isn't an easy disease tolive with.
But I do want to have some hope, because if you get mired in
statistics like you're mired instatistics like you're more
likely to get cancer, you'remore likely to get other
autoimmune diseases heartdisease, kidney failure, et
cetera, et cetera then you'reconstantly going to be in this
(42:35):
state of both grief and anxietyabout what's going to happen to
me in the future.
All I can do is take it a dayat a time and try to help myself
now and to ask for that helpnow.
Claire (42:46):
You've just made me realize something.
We often ask people if theirgrief has changed their view of
the future and for a lot ofpeople, especially when we're
speaking to them, they've cometo this point of it's helped
them in a good way.
So they've gone through thisgrief and now they're grateful
for life, or they feel morealive, or they take it each day
as it comes.
They've got all these goodthings that have helped them in
the future, or they've got overthe worst.
(43:07):
You think.
You know it can't get any worsethan that.
Therefore, I've got thisfreedom in how I live.
But when it's something like adiagnosis word, you know I'm 50
times more likely to have aheart attack.
Or you know I might get worsefrom here and need help and I've
got to ask someone to lookafter me and it changes it in a
(43:27):
very sort of negative way.
And I hadn't really put the twoside by side before and thought
about that.
And I know, for, like people inthe childless world, there's a
lot of fear with the future aswell, because you have this
assumption that if you'remarried or you have children,
they'll help look after you whenyou're older.
If you don't have any of those.
There's that fear of whathappens when I get old.
Who's going to look after me?
So yeah, it's not good and Ihadn't really thought about that
(43:48):
until you just said it.
Have you had to?
You said you talk about hope.
Have you had to really activelyput hope in the future to make
it seem better, to stop itseeming so dark?
Olivia Abousaid (43:59):
Yeah, I think it is definitely something I've
had to consciously be aware ofand consciously try to kind of
insert that into my life, thatbit of hope, and to not be such
a defeatist about it.
Because it can be really easyto get that way when you have an
(44:19):
autoimmune disease, especiallywhen it feels like the life is
sucking out of you, sometimeswith this fatigue Not to again
get into hyperbole but it doesfeel that way sometimes, like
what kind of life is this if I'mthis exhausted all the time and
I can barely function and doanything?
So it can be hard to reallyhard to stay positive, really
(44:43):
hard to insert hope sometimes.
But also, you know, we don'tknow that there is an unknown,
we don't know that the worstcase scenario is going to happen
.
We just don't know that.
And oddly there's some comfortin that, because if we knew the
worst case scenario for sure wasgoing to happen, then I think
(45:04):
it would be very normal to bevery down all the time and say
you know, well, that's it.
I may as well throw my hands upand give up and everything.
But the fact of the matter is Idon't know that this will get
worse for me.
We do naturally get a littlemore tired as we get older, but
I don't know that I'm ever goingto have organ failure.
We're controlling my lupus withmedicine and that may just be
(45:28):
the story.
For me.
It stays under control.
I don't have any organinvolvement and so I try to take
hope where I can, and I thinkthat's what a lot of people with
autoimmune diseases do is youjust try to find hope where you
can, try to accept what is rightnow and you still have to live
(45:48):
your life.
You still have to try to find alife and find joy in that life.
And you brought up a good point,chris, a little earlier about
shoulds.
You know this is something welearn in like cognitive
behavioralism.
Sometimes what's referred tothese days as the cognitive
dissonances is try to stay awayfrom shoulds, because who is
(46:10):
shoulding you?
Why is society shoulding you?
Why are you shoulding yourself?
Why are you shoulding otherpeople?
We don't want to cling too muchto these things that we either
prescribe to ourselves or thatsociety prescribes to us,
because they don't do us anyjustice.
When you have something like anautoimmune disease or
childlessness or things likethat, certain things have been
(46:30):
taken out of your control, butthat doesn't mean that your life
always has to feel out ofcontrol or that you were always
a victim to your circumstances.
We do still have some control.
We do still have some agencyand that's something I talk
about with my clients as well isthat we, we have some
(46:51):
empowerment.
So let's kind of focus in onthat.
It's okay to grieve and mournthe loss and things like that.
That's always going to be there.
But it's also okay to grieveand mourn the loss and things
like that.
That's always going to be there.
But it's also okay to have somehope and to look for better
things.
Claire (47:07):
Yeah, Because if you just project doom into the
future, it just ruins the now,doesn't it?
You end up living in a muchworse place about something that
, like you said, might neverhappen.
Has hope?
Has it always been there?
What's your relationship beenlike with hope?
Has there ever been a pointwhen you'd say you lost all hope
?
Olivia Abousaid (47:25):
Hope has been a little elusive at times, to be
honest.
You know, with major fatigueit's really hard to keep a
positive attitude.
Sometimes it's really hard,especially when you're not, when
everything has to get put onhold, the dishes have to sit in
the sink, the laundry's going tosit there undone, you're not
(47:45):
working on your business as much, you're not hanging out with
friends as much, and communityis so important.
So you know that one reallyhurts sometimes and so it's um,
it's been elusive for me attimes.
It's been hard to find thathope, but I'm making more of a
conscious effort these days toinsert it and to include it in
(48:06):
my thinking and to not be sodown about it all the time, and
that's part of working throughthis grief for me.
Claire (48:14):
There's a question I want to ask you.
It's not an easy question, Iwouldn't ask it to everybody
actually, but would you say anygood has come from it?
Has there been good coming outof your diagnosis and everything
you've gone through?
Olivia Abousaid (48:26):
that's a great question, I would say there is
some good.
You know, the pace that I wasgoing out was not healthy.
Um, oftentimes, at past jobs Iwould, in order to prove myself
there's a bit of people pleasingin there as well.
In order to prove myself.
At past jobs I would, in orderto prove myself there's a bit of
people pleasing in there aswell.
In order to prove myself.
At past jobs, I would like worklike crazy and do this and do
(48:47):
that and multitask and all ofthese things just to prove
myself and show them like what agood employee I am.
And that burned me out reallyquickly at job after job.
And so now I have to make thattime.
I have to slow down.
I have to make that time I haveto pace myself.
So now I'm actually working ata rate that's more normal.
(49:12):
I hate to use the word normal,but for lack of a better term,
I'm pacing myself better.
I'm not killing myself to provemyself to other people.
I am prioritizing my health andwhat I need to get by versus
what's so important for otherpeople.
So I think that's been a realpositive for me.
It's kind of really brought downthat people pleasing and having
(49:36):
to prioritize my health and Ithink, as I've gotten more open
and talking with my friends andfamily about it and realizing
more recently that I do needhelp with things, it's making me
reach out to other people andbuild community in a way that I
have not before.
You know, when you're feelinghealthier and less tired you
(49:57):
know I was in that.
I'm an independent woman mode.
I can do it all, I don't needanybody, and it's actually kind
of nice to build thesefriendships more solidly and to
build more of a community, andso there are pluses.
I thank you for asking thisquestion.
It's a really good questionbecause it doesn't all have to
be grief or loss, althoughthat's definitely a major part
(50:21):
of it, but there's silver liningtoo.
Chris (50:26):
I'm going to ask a follow up to that, because that was
such a lovely question andlovely answer.
Could part of the experiencewith hope be to get to a point
when you fully come to termswith it, where, well, how much
of a stretch could it be tothink in the future there might
be a time where you're actuallythankful for this, that this is
actually I'm thankful for whoI've become because of it?
(50:47):
How much of a stretch, howridiculous would that be, you
know, to hope there could be aday you're thankful for it?
Olivia Abousaid (50:51):
So ridiculous, totally ridiculous.
No, I wouldn't go so far as tosay ridiculous, but it's.
You know, it does.
That definitely does feel likea stretch sometimes, but it's
not out of the realm ofpossibility.
I'm not there yet now, I'll behonest in saying that, but it
could be and I feel like I'm onmy way towards that now, where
(51:16):
I'm learning to appreciate thegood changes that it's made, the
slowing down that I've had todo and the community building
that I've done, and I think overtime, over the years, it may
get to the point where I'm, likeyou know, this may have been
the best thing that everhappened to me.
Who knows?
(51:37):
Not there right now, not theretoday but, maybe I feel like I
am on the way to that, and withevery autoimmune disease,
acceptance really does have tobe part of it at some point.
Not just autoimmune disease,but any grieving.
You will keep grieving, therewill always be grief, but
(51:57):
there's an acceptance that comesat a certain point where you're
like this is just how it is,let's move on instead of always
letting it mire me down.
Chris (52:07):
Well, it's been wonderful to chat, olivia.
Thank you so much for your time.
There's lots I'm going to takeaway from this chat, but one of
the things I can still.
I've still got your voice in myhead going who's shutting you,
or are you shutting yourself?
Got your voice in my head goingwho's shutting you, or are you
shutting yourself?
That will definitely be one ofthe things I take away, but
thank you for sharing what youhave.
We like to end our episodeslike this by asking our guests
(52:30):
about their herban, so somethingthat you feel like you've
nurtured, you've grown in ahealthy way that is worth
passing on and sharing withsomebody else, and we simplify
that with the question what'syour Herman?
Olivia Abousaid (52:45):
So I love this question.
I think for me, my Herman is myempathy, my sense of empathy.
I've always been a naturallyempathetic person, but it is
something that you can stillgrow and nurture.
When you're dealing with anytype of grief or trauma or loss,
(53:05):
it tends to make you veryinward facing and very sort of
introspective and it's hard toget out of your head and look
and see what's going on in theworld.
And I have found something thathelps me with my grief and in
helping other people with griefis that empathy, that sense of
(53:27):
empathy Because I don't want tosay this the wrong way, I don't
want it to come off wrong, butbeing depressed or in that
isolated place can make you abit selfish, in that it's hard
to look outside of yourself andto really be there for other
people.
And when you practice thatempathy you can then kind of
(53:48):
look outwardly and start to askpeople well, how are you doing?
Something as simple as that isa practice in empathy and to me
that both helps that person andletting them know that you care,
and it helps you in gettingoutside of yourself, which is
something that's so important tokeep practicing and doing as
(54:09):
you're dealing with grief andknowing that you're not alone.
This is a reminder you're notalone.
Reach out, ask someone howtheir day is going, and that can
help you get out of yourselfand get out of your head.
It's almost its own groundingexercise, in a way.
So for me, my Herman isdefinitely that sense of empathy
that I like to pass on to otherpeople, that I hope other
(54:32):
people are passing back to me aswell as on to other people,
because we're living in such acrazy world these days I won't
get into the politics of it, butit's a crazy world so I think
we need empathy more than ever.
Claire (54:54):
Empathy.
How different would the worldbe if we all had more of that.
Thank you so much, olivia, forsharing the losses that come
with living with a chronicillness.
These invisible losses can beso hard for others to identify
or even understand, so we'regrateful for voices that want to
share what it's like to helpothers grow in their empathy for
people battling with healthissues on a daily basis.
Chris (55:15):
If you'd like to find out more about Olivia and her work,
head over to her website.
If you'd like to find out moreabout Olivia and her work, head
over to her website, which ispact-coachingcom that's
P-A-C-T-hyphen-coaching.
com or find our show notes formore links.
And if you want to connect withClaire and myself or dive into
our growing list of 101different types of loss, you can
(55:36):
visit our website, which is www.
thesilentwhy.
com, or find us on social mediaat @thesilentwhypod.
Claire (55:41):
You'll also find our newsletter, more about hermans
and all of our previous episodesnow we have to do a bit that
every podcast host dreads butreally needs to say if you've
enjoyed this episode, pleaseleave us a rating or a review,
whether it's on apple podcast,spotify, pocketcast, good pods
wherever you listen.
If there's a review option,we'd love it if you used it.
Chris (56:00):
It will certainly help new listeners decide if this is
the podcast for them, and forsmall shows like ours, your
review makes a big difference.
Claire (56:07):
We've got 14 reviews on Apple Podcasts right now, which
suggests that only 14 of you arelistening, even though we know
there are at least 31 of you outthere.
Chris (56:16):
Steady on yes, because the other 17 are on Spotify and
I'm 82 on Pocket Casts.
Well, that's probably everyonethen, and if it is, we love you
all, we'll leave you with aquote from author and artist
Jonathan Harnish, who's livedwith his own struggles around
illness and mental health.
Claire (56:32):
"The strongest people are not those who show strength
in front of the world, but thosewho fight and win battles that
others do not know anythingabout.
"
Hi, I'm Olivia Abusaid and I'm here to talk
about my loss and grief ofgetting diagnosed with an
autoimmune disease, specificallylupus.
Claire (00:16):
Welcome to The Silent Why, our podcast on a mission to
uncover 101 different types ofpermanent loss, while looking
for hope and hearing from thosewho have experienced them
firsthand.
I'm Claire Sandys.
Chris (00:26):
And I'm her husband, Chris, and in this episode we're
chatting with Olivia Abousaid.
She's a grief coach based inLos Angeles in California, who's
diagnosed with the autoimmunedisease lupus.
Claire (00:38):
On this podcast we explore all kinds of loss, not
just bereavement, and in thisepisode, loss 63 of 101, we talk
to Olivia about what it meansto live day by day with a
chronic illness and the manyinvisible losses that it brings,
from daily routines tolong-term dreams.
Olivia Abousaid (00:54):
Instead of cleaning my apartment all the
time, maybe I get someone inonce a month to help with the
cleaning and that's very big forme and for some people it's not
that big a deal.
For me it is because I'm notaccustomed to asking for help.
I'm such an independent personI always have been.
Chris (01:11):
Now I'm having to admit in LA, as well as coping with
fatigue and the slow path toacceptance and the challenge of
letting go of the pressure toalways be productive.
Claire (01:30):
Even as a grief coach herself, Olivia shares how
difficult it can be to recogniseand honour your own grief For
myself.
Olivia Abousaid (01:38):
It gets a little messier.
You know, it is sometimes hardto recognise your own grief when
you're the one going through it, when you're dealing with the
day-to-day busyness of life.
Claire (01:50):
Despite all that lupus has taken from her, Olivia
continues to choose hope,finding it in small daily acts
of courage and self-care.
Chris (01:58):
You might think that she should remain mindful of taking
control of her situation,refusing to let others dictate
how she should feel or what sheshould do, shouldn't she?
Olivia Abousaid (02:07):
Try to stay away from shoulds, because who
is shoulding you?
Why is society shoulding you?
Why are you shoulding yourself?
Why are you shoulding otherpeople?
We don't want to cling too muchto these things that we either
prescribe to ourselves or thatsociety prescribes to us,
because they don't do us anyjustice.
When you have something like anautoimmune disease or
(02:27):
childlessness or things likethat, certain things have been
taken out of your control.
But that doesn't mean that yourlife always has to feel out of
control or that you were alwaysa victim to your circumstances.
We do still have some control.
Claire (02:43):
We think this is an episode that will resonate with
anyone that's known the lossesthat can come with ill health or
a medical diagnosis, especiallyone that instantly changes your
day to day or your future.
Chris (02:53):
And to begin our conversation, we asked Olivia to
tell us a little bit aboutherself.
Olivia Abousaid (02:59):
So my name is Olivia Abousaid.
I am a master certifiedprofessional grief and
transformation coach, and I'mhere to talk about my experience
with grief and loss as itpertains to having a chronic
illness, in my case,specifically lupus.
Chris (03:20):
Take us into that straight away, then I guess
Lupus.
What is lupus?
When were you diagnosed?
Tell us a bit about that.
Olivia Abousaid (03:27):
Right, I'm glad you're asking.
When I got diagnosed I had noidea what lupus was, and I think
I saw something on the LupusFoundation website recently that
said, over 60% of people in theUS here don't know what lupus
is, so it's not surprising.
Lupus is an autoimmune diseasethat affects all of your organs,
(03:51):
affects your body.
It's basically your immunesystem.
Instead of attacking theviruses and the bacteria that
come in to your immune systemlike a regular person's, it
instead misinterprets your owntissues and organs as the enemy
and is attacking your body on aregular basis.
So everybody who has lupus iseither on an immunomodulator or
(04:17):
an immunosuppressant to bringdown that overactive immune
system and to try to bring downthe inflammation that comes with
that, and it can make you verytired.
That's the main complaint ofpeople with lupus.
It's definitely one for me.
Fatigue is something I strugglewith all the time, and some
(04:39):
people have it bad enough thatit is attacking their organs.
They have some kidney failure.
That's a very prevalent one.
There is lung involvement,heart involvement, liver
involvement.
When I first got diagnosed, avery scary statistic that I read
(04:59):
was that, as a person withlupus, you are 50 times more
likely to have a heart attack.
That's five zero, which Ididn't know what to do with that
information when I first gotdiagnosed.
I still don't entirely, but Itry not to live my life around
such a crazy statistic.
(05:20):
So you know you can't.
It's too much to try to keepthat in mind all the time and to
feel like any minute now youknow something terrible could
happen.
Chris (05:31):
So how long has this been in your life for?
Olivia Abousaid (05:33):
You know it's hard to say.
I think I've probably had it myentire life.
I always got sick very easily.
Growing up and into myadulthood I've always gotten
sick very easily.
And it's not just that you getsick easily, you get sick worse
and longer than other people.
A simple cold for someonethat'll last maybe three to five
(05:55):
days, maybe a week for someone.
For me will last two to threeweeks, sometimes even longer.
The one time I got COVID, I hadit for a full month and I got
it while outdoors double maskthree weeks after getting my
COVID vaccine, because I'm justthat immunocompromised yeah,
(06:16):
it's really easy to get sick.
So I think I've probably had itmy whole life.
But I didn't actually getdiagnosed until about three and
a half years ago.
Because what happened for me issomething that is very common
for a lot of people with lupusand other autoimmune diseases is
that it can take years toactually get a diagnosis.
(06:38):
So I kept going to doctor afterdoctor and saying I'm exhausted
all the time, I'm very tiredPlease help me figure this out
and they were running all thewrong tests.
Nobody thought to test forautoimmune disease and beyond
that I was getting these sort ofplaques on my face that looked
(06:58):
like eczema.
So I was going to adermatologist and saying what is
going on and they would say, oh, this is eczema or oh, this is
support dermatitis or whateverit might be.
And it turned out to be lupus.
Plaques and that's how I firstgot diagnosed was through my
skin.
Finally, a dermatologistthought to take a biopsy and it
(07:21):
came back positive for lupus.
So I actually have the systemiclupus inside my body and I also
have cutaneous lupus that Ideal with on my skin.
Chris (07:31):
So when you had the official diagnosis, just tell us
a little bit about whether thatwas freeing or was it a burden.
Was it a positive relief to getthat diagnosis, or did it
actually then open up the doorto okay, this is my life now.
I'm not too happy with that.
Olivia Abousaid (07:55):
All of the above, I would say it was a bit
of a mixed bag, you know,because it's never nice hearing
that you have one of the moreserious autoimmune diseases out
there.
So that was a lot to kind ofdeal with and come to terms with
, and in some ways I am stillcoming to terms with that.
But there was also the sense ofrelief in that okay, now this
has a name, I know what I'mdealing with, I can do some
(08:18):
research, I can get the propermedical care that I need,
Because for years I mean years Iwas going to doctors, and
that's so frustrating,especially when you keep
complaining of the same symptomsand I'd have them say well,
your lab work looks fine, whicha lot of doctors I won't say all
, but there are a fair amount ofdoctors who go only by lab work
(08:41):
or blood work and aren'tlistening to patients when it
comes to symptoms, and so it'salso important to find the right
doctors who will listen to youand your symptoms, because you
know your body best.
But it definitely was a mixedbag of relief and and some grief
as well.
Claire (08:58):
That's when the grief started for me were you the sort
of person you mentioned thatyou've seen some statistics that
were quite scary about thechances of heart attacks and
things.
Were you someone that startedresearching it straight away or
did you wait a while?
What's your kind of level ofjumping on Google and finding
out what this is?
Olivia Abousaid (09:16):
It was right away.
I needed to know exactly what Iwas dealing with.
I had never heard of lupus.
I knew nothing about lupus.
I started to learn about whatit was.
Different celebrities that hadit.
Selena Gomez is probably themost well-known celebrity who
(09:36):
has it.
She actually had to get a newkidney.
So that's something that peoplewho have it a little worse than
me that may have to deal withat some point is organ
transplant.
So I'm the type of person thatlikes to research and know what
I'm dealing with.
So I really looked into it.
(09:57):
And what should I be eating andnot eating?
What should I be doing and notdoing?
What more do I need to know?
How can I talk to this, talkabout this with family members
so that I can try to build somesupport around me?
So it was, it was all of it.
Claire (10:15):
Once you got the diagnosis, were they able to
sort of help you and make life,day-to-day life, easier with
medication?
Now you knew what it was, orwas it just it's still just?
You knew what it was, or was itjust, it still just?
You knew what it was, but itwas still just as hard.
That's a good question it did.
Olivia Abousaid (10:31):
Getting that diagnosis did make it easier in
that I am on the medicine nowthat I need to be on and my
blood work has normalized sincegetting that diagnosis.
So in that we are taking careof my disease In another sense.
I still have all this fatigueand there's a lot of grief
around the fatigue and thelimitations of having that
(10:53):
fatigue that I, you know, I'mstill dealing with on a daily
basis all the time, and I know alot of people with autoimmune
disease deal with that as well,and so I know I'm kind of doing
what I need to be doing.
There's also sunlight.
It turns out we're supposed toavoid sunlight because we're
(11:14):
sensitive to UV.
Even fluorescent lights can putoff quite a bit of UV, and so
you know, when you go to big boxstores you try not to stay too
long, things like that.
So it's things you neverthought to look out for.
There's some grief around notbeing able to go out in the sun
too much, because in thesummertime I used to love to be
(11:36):
in the sunshine and to get agood tan and all of that stuff.
Especially here in Los Angelesthere are a lot of great
summertime activities but youknow we, we can't be in the sun
too much.
So there's been some griefaround feeling, I call it.
You know, I feel a little bitlike a vampire where it's.
You know, avoid the sun at allcosts.
(11:57):
So it's uh, you know I I canjoke about it, laugh about it,
but there is with that too.
Chris (12:04):
And we'll certainly dig into that.
I think I just want to pick upon what you were saying about
research, because in myexperience with Claire and all
the hours and hours and hours ofresearch that Claire's done
into menopause, into the PMDDthat she was diagnosed with, the
learning about it and thentweaking something, and then
learning more and tweakingsomething it's really helpful to
(12:27):
do but it's not fun, is it?
You can't find a fix in theresearch.
You're constantly findinganswers to things you don't
really want to have to do butyou realize I'll have to try it,
and then trying it takes weeks.
So it's quite exhausting to dothat level of research, to learn
about how you can cope withsomething better, how you can
come to terms with something,and even then when you're
(12:48):
sharing experiences.
Yes, it's great to havecommunities where you can share,
but we're all so different, sowhat works for you might not
work for the 10 other peoplechatting on facebook.
Whatever it might be.
Stuff can be quite bespoken.
Everyone has an opinion and asolution and a try.
This it worked for for me.
There's so much to try, so muchto read.
Yeah, how was that experience?
Olivia Abousaid (13:07):
for you.
It's so true.
Everything you're saying isringing true because you know it
has been a learning process.
I started researching at first,but things change all the time
with new research and so you dokind of have to stay on top of
it.
I'll go to Lupus, la.
Here is great about havingdifferent seminars and things
(13:28):
like that with rheumatologistswhere they explain different
medicines or explain how to dodifferent things or how to live
with your lupus in differentways, and so that's been great.
Support groups are great, butit is exhausting trying to kind
of keep up with everything andit's things you don't even think
(13:50):
about, like the sunshine thing.
If I know that there isn't muchof a choice about it, I have to
be in the sunshine for a littlebit today sunscreen everywhere,
or perhaps putting on your UPF50 clothing, wearing a hat,
trying to plan how you canminimize your exposure to
sunshine and things like that,and it's things that other
(14:13):
people don't have to worry about, that you have to take the time
to prepare for and to do andthings like that For people who
have no idea about this kind ofthing.
Claire (14:23):
They've led a relatively healthy life.
They go about their day.
You know, occasionally have amedical thing pop up and then it
goes away again.
Give us a bit of an idea of howit affects you on a daily basis
.
What are the sort of thingsthat it's sort of taken from you
or restricted in you or maybeallowed you to do?
But how does it affect you dayto day?
Olivia Abousaid (14:42):
The fatigue mainly is what really affects
everything.
It informs everything.
In my life there has not been alot of solutions for me and for
a lot of the people in theautoimmune community that are
dealing with fatigue.
You know we're told the thingsthat are told to everyone by
(15:04):
doctors and that you need to eathealthy and try to get enough
sleep and limit social media andthink positively and do yoga
and get exercise and all thethings.
So you try to do all thesethings you try to do right by
yourself, but the fatigue is canbe really debilitating
(15:27):
sometimes and that is somethingI deal with and I think that's
where I feel the most griefabout having lupus is that I
used to be very A-type andambitious and high achieving and
I get so much done every day.
I prided myself on productivityand all that I could get done
(15:47):
and all the things and I'vereally had to slow down quite a
bit these past few years,especially now with being
middle-aged and havingperimenopause and you get more
tired as you get older anyway,but it's really multiplied when
you have lupus and other healththings going on.
(16:09):
One thing about lupus is thatyou're more likely to have other
autoimmune diseases as well.
So it almost feels like ano-win situation sometimes when
it comes to that, but it'slearning to work with your
limited energy, it's continuingto try at that exercise, which
(16:32):
isn't always easy, but it'ssomething worth trying for
because in the long term it canhelp your energy level a little
bit.
And there's something to besaid for acceptance of where you
are, and that is a work inprogress for me.
There's something to be saidfor acceptance of where you are,
and that is a work in progressfor me.
That's not to say that thegrief will go away in adapting
to this new, much slower way oflife, but it's also necessary to
(16:56):
come to some sort of acceptancewith it that this is just how
it is now, instead of beating myhead against a wall.
This is what it is, so let'smake the best of these
limitations.
And one thing to note also isthat you know we're sort of from
a young age.
We're told societally,structurally, that we have to be
(17:17):
these super productive peoplebecause that's capitalism, you
know.
And so some of that is breakingout of that too, where, whether
you have an autoimmune diseaseor not, it's allowing yourself
to rest when you need to rest,to take it slow to take it easy
to take that vacation time.
So in that sense it's nottotally bad to learn to slow
(17:38):
down.
We don't always have to beproductive 100% of the time, so
there's some pluses to it.
When you have an autoimmunedisease, it's always about kind
of looking, trying to look atthat silver lining.
It's not always easy, but it'sworth keeping in mind.
Claire (17:55):
Do you worry about when you're sort of, like you said, a
can-do person and productivityseems to be this thing that's
put on this pedestal nowadays?
Do you worry about being judged?
Because I know with fatigue itcan be very easy to well.
I feel like this sometimes, tofeel like it looks like you're
being lazy and there's that fearthat other people see it a
different way.
That might be a personalitything, though.
Is that something you've everworried about?
Olivia Abousaid (18:16):
I do worry about that from time to time.
I have been building mycoaching business and it's a
passion project of mine.
I love the coaching, I lovehelping people, but it's it's in
all honesty, it's moving alittle slower than I would like
because I have to take constantbreaks for my rest.
And so, you know, there's theside of me that says, you know,
(18:41):
I have to offer myself grace andit's something that I tell to
my clients.
To offer grace.
It's OK to rest, it's OK togrieve, it's OK to take time for
these things, but it's alsoit's not always easy to do that.
It can be hard.
Chris (18:57):
Totally understand that.
I think we've experienced, yeah, again that and just
conversations between the two ofus about how often you feel
like somebody might be, orgroups of people, being the one
that needs to rest or needs moresleep.
Just how that, yeah, how thatinterrupts friendships,
(19:18):
relationships and even, like yousaid, with businesses.
Claire (19:20):
You know it's very.
You know I'd like to do morewith the podcast and stuff is.
You know it's very.
You know I'd like to do morewith the podcast and stuff.
And when I can't or I don't,there would have been a day and
age when you wouldn't have knownif anyone else was doing
anything with their business,because you just were in your
own little kind of silo workingaway.
But now we have social mediaand the internet.
You're aware of all the otherpeople that look like they're
doing amazing and they'reputting out posts every day and
they've got these videos andthey're on TikTok and they're on
(19:42):
you know.
And so I think that doesn'thelp, because it and they might
not be doing it themselves, theymight be struggling to do it,
you don't know, do you, but itdoes it can very quickly make
you feel like you're failing ina in certain ways, which is sad.
Olivia Abousaid (19:55):
Yeah, it does.
I mean that's a good point.
I feel guilt around not postingall the time about my coaching.
I feel guilt about having tocancel on friends last minute
sometimes because I'll be hitwith a wall of grief and I
literally I just need to spendthe next few hours on the couch
laying down instead of going andhaving fun with my friends, and
(20:20):
you know I feel like I'mletting people down when I do
that.
So I've been trying to speakvery openly with my friends
about here's what I'm dealingwith with my health and with my
fatigue, and I think most ofthem really do understand it's
my own personal like oh, I'mletting people down, or I'm not
posting as much as I should, orI should have put in six hours
(20:42):
today on my business, but I onlydid two as I should.
Or I should have put in sixhours today on my business, but
I only did two.
Things like that, where thereis a guilt aspect to it that you
know.
Eventually, hopefully, I canallow myself that grace to say I
don't need to feel guilty, andthat is part of why I'm being so
open with friends about it isthat I shouldn't have to feel
(21:04):
guilty about it.
It is health related.
Chris (21:06):
I can't remember who it was that said to me several
months ago now about somethingabout the word.
Should that as soon as you hear, or use the word should you're
bringing somebody else's sort ofrules?
into it by whose rules are youplaying if you say I should be
doing this or that?
So yeah, I've become quitesensitive to that.
You're very comfortable,clearly, with with using the
word grief.
It's something you work in, youtalk about yeah, you were just
(21:28):
referring to it then certainlywith again spending time resting
if need be, or just on your own.
What has that process been likeof recognising, for a start,
that this is something that Ineed to grieve, and how messy
has it been learning to grieveit?
Olivia Abousaid (21:46):
you know that's such an interesting topic
because when I'm working withclients I can so clearly see
what they're going through.
I can see their grief, I canhelp guide them through it and
call it by its name, et cetera.
For myself it gets a littlemessier.
(22:08):
You know, it is sometimes hardto recognize your own grief when
you're the one going through it.
When you're dealing with thelike, the diagnosis, my first
initial response wasn't to think, oh, I'm going to grieve, now
(22:31):
I'm going to start grieving.
It was more that I just want tolearn all I can about it.
I want to learn more.
I don't want to feel like avictim to this, but sometimes
you do have to take the time toappreciate that that is what's
happening, that naturally you'regoing to grieve certain things
and so, uh, I have to do thatwork, to be a little more
(22:54):
introspective, practice what Ipreach with the clients and work
with that grief.
But there's a lot of lossassociated with having an
autoimmune disease, things thatyou don't even think about, like
time.
I think that's something that'snot necessarily talked about
(23:14):
enough, even within communitiesthat deal with these autoimmune
diseases and lupus.
A lot of the time it's aboutthe loss of energy, the fatigue,
but what that can translate tois also a huge loss of time.
It's kind of like what I wassaying with you know, if you're
having to lay down for four orfive, six hours, that's time you
(23:38):
can't do anything else, and soit also feels like a bit of a
loss of independence.
You know I used to pride myselfon I can go it alone, I don't
need anybody, I can do this andI can do that.
And it's another one of thosesilver lining things where you
have to kind of learn to reachout for help and build community
(24:01):
and I think we're learning thatmore and more societally is
that community is so importantfor us and it's not always easy
to reach out for help, but it'ssomething that I think benefits
all of us in the end.
Claire (24:15):
There's so many losses attached to something like this,
right, I think you know overthe years you'll probably still
be noticing them forever almostlittle things that will come in
or that you can't do.
And I think that's why it's soimportant to talk about these
kinds of losses.
It's why we started the podcast, really, because with a
bereavement there's a loss of aperson and people kind of know
or roughly expect what that kindof grief looks like.
(24:35):
But with this sort of thing itwas the same with our
childlessness and the otherthings we've talked about.
They're a little bit more vagueand you think you know what
you've lost.
With childlessness it's quiteobvious there's a loss there.
You haven't had children.
But when it comes to a diseaseor a condition or health, it's a
bit more fuzzy because itdoesn't look like a loss to a
lot of people.
It fuzzy because it doesn'tlook like a loss to a lot of
people, it just looks like adiagnosis.
(24:56):
So it can take a while for youto realize oh, this is what I've
lost, not just health or energy, but I've also lost hanging out
with my friends.
I've also lost hanging out inthe sun, all these other things
that kind of come around it.
So it's such an interestingthing to talk about.
How do you think this kind ofgrief differs from a bereavement
For you going through it?
(25:16):
Do you know how it differs inthat way to kind of go through
it, or would you say it's quitesimilar?
Olivia Abousaid (25:21):
I would say it's a little bit different.
Actually, it's similar in thatwhen we whether someone has died
or we've gotten a diagnosis forsomething, you're going to have
initially an acute stage whereyou're kind of dealing with the
loss and the ramifications ofeverything all at once, you know
(25:43):
, and then you kind of settleinto this grief stage where it
just becomes sort of part ofyour life and part of your day
to day, and so in that sensethere's a similarity.
But you brought up a good pointin that, because it's a bit
more vague than someone losing afamily member or something.
There's this disenfranchisedgrief where society may not
(26:05):
always recognize that it isgrief or recognized to sort of
be there for you, which isanother reason I try to be so
open about it with my family andwith my friends to let them
know that this is challenging.
It's not easy having this, it'snot easy dealing with this.
(26:28):
It's almost like losing a petin a way as well, because
society kind of understands thatloss.
For about a week or so.
They'll let you sort of grievethat for about a week.
Okay, that's a bad thing thathappened, but at the end of the
day it's just this or it's justthat where people kind of
justify not adding that value toit that there would be if you
(26:53):
lost someone.
But it is a grief and it's avery deep grief and it's
something that we need to taketime with and it's ongoing.
Grief doesn't go away.
You just kind of learn to livewith it in different ways, and
something I do in my coachingwith my clients is to try to
find some hope through the grief, recognize the grief and
(27:16):
transform it into community,into action and things like that
.
So that is something I'mworking on myself, but it's not
to undermine the importance ofthe grief and the loss and going
through all of that.
Chris (27:30):
It's really interesting hearing you pick out some of the
things, I guess, that affectyou in terms of the losses or
that you've really experiencedor felt quite keenly.
I mean, would you go so so faras to like list what losses
you've experienced, or is itjust you know one loss per
season?
Olivia Abousaid (27:48):
I actually wrote down a list of losses as I
was prepping for this podcast,because sometimes when you're
dealing with grief and trauma,it can kind of be this nebulous
bit of emotions that's sort ofswirling around in your head and
in your heart.
And it was actually a goodexercise for me to sit down and
(28:10):
write out these losses and howthey have made me feel and how
they've contributed to the griefthat I've experienced.
And it was more loss than Ithought.
Actually.
It kind of surprised me andit's simple.
Things like you get some hairloss with lupus there are some
people with lupus who fully havealopecia.
(28:31):
They've lost quite a bit ofhair actually and how that can
affect your self-esteem and yoursense of self-worth, as you can
develop rashes or you lose hairor things like that.
On the physical side of itoutwardly physical there's the
loss of energy.
There's some loss ofindependence, as you realize you
(28:53):
need to reach out for help, notbeing able to spend time in the
sunlight there's that loss.
Faith in the medical system wasa big one for me.
I thought doctors were sort ofthese demigods in a way, who
they know everything there is toknow about medicine.
They're the experts.
Surely they can diagnose me inno time.
But the fact that it took yearsand that I got a lot of
(29:16):
incorrect diagnoses beforegetting the correct one made me
realize they are human andfallible, and so there was some
loss of trust in the medicalcommunity.
For me, time is one that is nottalked about quite as much, but
having to spend so many hours aday resting, laying down, takes
(29:38):
time away from everything else,so learning to slow down is
really a part of it.
A lot of people with autoimmunediseases experience a loss of
income because they're too tiredto work a full-time job, and
that one is a really big onebecause it's almost like having
an autoimmune disease meansyou're more likely to live in
(30:00):
poverty, plain and simple, andthat's a big loss right there
for a lot of people.
A lot of grief comes with thatMental acuity.
You start to get more brain fog.
When you have lupus and I'msure with other autoimmune
diseases I don't think asclearly as I wanted.
This may sound kind of silly,but it's always been my dream to
(30:22):
be on Jeopardy, that game show,but now I question if I can
actually do that, because I haveso much brain fog sometimes I
can't even think of the rightwords to say sometimes, and that
definitely goes back toaffecting my sense of self and
self sense of confidence becauseI've always been sort of quick,
witted and sharp andintelligent and it feels like
(30:46):
it's deteriorating a little.
So it's it's hard to deal withand, in turn, lastly, that does
affect your mental health.
It's sort of the loss of mentalhealth in dealing with the
depression and the grief of allthese losses and the new
limitations that you have.
It can really affect mentalhealth.
(31:08):
A lot of people with lupus andautoimmune diseases struggle
with depression and anxiety andmental health issues and, as
such, suicide rates are higherfor people in this community.
And so it's so important if Imay put this out there if you
know someone with an autoimmunedisease, it's so important to
(31:30):
reach out to them and to try tobuild that community with them,
to let them know that you'rethere to check on them, offer
help in any way you can, even ifyou're there to check on them,
offer help in any way you can,even if you're busy.
Sometimes just saying hey, I'mthinking of you can go a long
way with someone who is dealingwith autoimmune disease, because
it is such an isolating thing,especially when you're not able
(31:52):
to go out and connect withpeople as much as you would like
, it can really start to feelvery isolating.
So, you know, just try to bethere for anyone who who is
dealing with that.
A lot of people don't know whatlupa says, so I always invite
people to ask, and google existsin the world so you know they
can always look up things aswell, but I'm always happy to
(32:13):
answer questions what you weresaying there was making me think
again about how a community cangather around someone that is
mourning the loss of someone ora pet.
Chris (32:24):
There can be colleagues, friends, family that will join
you in that.
When you've got something likea chronic condition, I expect it
can be quite lonely at times.
This is my thing and I've gotto sort of come to terms with it
myself.
Do you find it's a lonely pathto tread or do you feel like you
have a good number of closefriends or family members who
(32:45):
who get it, who sit with you,who grieve with you?
Olivia Abousaid (32:50):
I think it's been a lonely path but it's
getting a little bit easier aswell.
As I have started talking aboutit more with them, I realized
that lonely path was making mefeel very isolated.
I don't personally know anybodyelse with lupus.
When I go to those lupussupport groups that's really the
(33:18):
only time I interact with otherpeople who have lupus.
So it has been kind of a lonelyand isolating path and sort of
feeling like you're alone inthis, like I got diagnosed with
this thing and I don't knowanybody else who has it or can
understand what I'm goingthrough.
So more and more over time,especially in these past few
months, so more and more overtime, especially in these past
few months, I've really beentalking it up to my friends and
(33:38):
really emphasizing the griefaspect of it and the fatigue
aspect of it and how that'saffecting me and I think it is
kind of sinking in a little morenow with friends.
I think they do understand menot always being physically
available to hang out, alwaysbeing physically available to
hang out.
They know I'm always there forthem if they need anything via
(34:00):
phone call or maybe we can geton a FaceTime or something, but
I may not always be physicallyavailable for them, and I think
that's feeling a little betterfor me as I really open up about
talking about it, because it'smaking me feel less isolated
about it and it's making me feellike, okay, people get it more
now.
I have a little more of acommunity around myself now and
(34:23):
so you know, I would encourageanybody to do that.
Claire (34:27):
What's been the sort of the hardest part of the journey
so far?
If you look back frompre-diagnosis through to finding
out where you are now grieving,is there a stage that you think
has been the hardest to getthrough?
Olivia Abousaid (34:39):
I think you know, possibly recently it's
hard to um say, because recentlyI've been feeling the most
grief about it, but also themost enablement about it,
because I'm sort of, you know,realizing that I'm going through
(35:00):
all this grief and stillgrieving it very much has made
me realize that I need to changesome things, and so that's why
I'm talking about it more withpeople and that's why I'm really
starting to define where mygrief lies, the losses that I
felt, all of the losses, callthem out by name and understand
(35:24):
why the grief is what it is,because I've lost so many things
because of this and there's anempowerment in starting to do
something about it.
I'm getting to the point withmy fatigue where I'm realizing I
can't keep going it alone.
I do live alone.
My family is a few states awayand I live alone here and I've
(35:47):
got great friends, but they havetheir own lives.
They're busy as well, they worklong hours, and so I am
realizing that I need to searchout some help.
Maybe, instead of going to thegrocery store a couple of times
a week, I get grocery delivery.
Instead of cleaning myapartment all the time, maybe I
(36:10):
get someone in once a month orsomething to help with the
cleaning and that's very big forme.
For some people it's not thatbig a deal.
For me it is because I'm notaccustomed to asking for help.
I'm such an independent personI always have been I don't
easily ask people for help.
Now I'm having to admit tomyself I can't do it all and I
(36:34):
do need help and there's a lotof grief in that, and I'm really
realizing that lately anddealing with all of that, but at
the same time feeling like, no,this is good, because I'm
recognizing certain things, I'mdealing with certain things and
starting to make plans for howcan I get help?
Where can I get help?
(36:54):
So it's a little bit of both.
It's a bit crazy.
It's a two-sided coin.
Claire (37:00):
It's a testament to you and how you're dealing with it
that at the worst point, whenyou're feeling the grief the
most, you're actually learningto reach out and ask for help,
also sharing it with friends,and therefore it's helping you.
And I can really see how if youdidn't do that at that point,
that worst point of grief wouldbecome even worse because you
would be alone.
It's a testament to how you'rehandling it that it's both the
(37:20):
good and the bad at the sametime.
Olivia Abousaid (37:27):
It's almost like hitting a breaking point in
a certain way, for lack of abetter term.
I don't want it to sound superdramatic, it's not quite that,
but it is.
You hit this point where you'relike I can't stay this way
anymore.
And I think you know with myown clients that's.
The point at which they reachout to me is when they've hit
this breaking point and they,you know, they've been in grief
(37:47):
for months, or possibly evenyears, and they say I can't stay
this way anymore.
It's overwhelming.
Something has to change,something has to transform.
And I think that's where I amnow in my own grieving process
is that it's feeling a bitoverwhelming lately.
It's a lot, but I know thingshave to change and that's when
the real transformation canhappen too.
(38:09):
And I think that's what's kindof informing.
That little bit of hope for meis knowing that you know, if I
make these changes, then it canhelp.
You know, I don't have to bethis exhausted all the time.
These seemingly little thingscan actually really help.
Chris (38:26):
Is there a healthy balance to find, to achieve
between saying lupus,verbalizing it, asking for help,
you know, talking about it withfriends and family on the one
hand, but, on the other hand,avoiding the sort of negative
connotations around using it as,like a label.
You might have friends orfamily that will often say, oh,
I can't because of this, it'sthat you know you've got this
(38:48):
label now and you just keeptelling us about it, et cetera,
et cetera, where it can be a bitunhealthy.
Is there a balance to be foundin that of just knowing how much
to talk about it without goingon about it too much?
Olivia Abousaid (39:00):
I think it hasn't been too much of an issue
so far.
But I think you know, I havebeen finding more of that
balance lately where I want totalk about it more and I want
people to know what I'm goingthrough.
But I don't necessarily want tohammer them over the head with
it.
I don't want it to become mytotal identity, like I'm lupus
(39:23):
girl, you know.
I don't want that to be allthat I am to people.
I just want people to kind ofrecognize that this is my
struggle, this is what's goingon with me, but I don't want it
to be my total identity withpeople, you know.
Claire (39:40):
Yeah, I understand that.
One of the things we ask allour guests is how they've felt
about the question.
Why have you struggled withthat at all?
Has that been something you'veasked yourself?
Why me?
Why am I going through this?
And if you have, have youanswered it or you know where do
you sit with that question?
Olivia Abousaid (39:56):
Oddly, I've never really asked myself that
question.
I know a lot of people do whenthey get a diagnosis, I think
because I've always had healthissues and I think, I suspect
that I've always had lupus, andso it wasn't necessarily a shock
that, oh no, I have thisautoimmune disease now.
(40:20):
It wasn't.
I'm healthy, healthy, healthy,and then one day all of a sudden
I'm sick and I have thisautoimmune disease.
It was much more gradual for me.
It took way longer than itshould have to get that
diagnosis, but it just didn'tsurprise me when I got it.
So I never had that thoughtprocess like why is this
(40:40):
happening to me?
Because I feel like I've alwaysbeen dealing with it in some
way or another.
Chris (40:46):
I've got one more question before we start talking
about the journey with hope,and that's to come back to
something you said about 10, 15minutes ago about coming to
terms with it.
Olivia Abousaid (41:05):
There was almost a sense that there's an
inner wrestle that you knowyou're not to where you want to
be yet in terms of acknowledgingit and accepting it.
So what is stopping you, do youthink, getting to that point
that you want to be?
I think part of it is thathyper independence that I have
and knowing now that you knowit's time to ask for help.
I was honestly looking at thefuture with a lot of anxiety,
like what happens if I get tothe point where I'm too tired to
take care of myself?
(41:26):
What then?
And I didn't really have a goodanswer for myself.
So it was causing more and moreand more anxiety for me.
I don't know what to do aboutthe future and kind of recently
realizing that, you know, maybeI should look for help now,
before I get to a point where Imay or may not be debilitated or
(41:50):
may not be able to take care ofmyself.
And that was kind of arefreshing thought for me that
hadn't occurred to me, that Ican help myself now, I can do
something about it now, beforegetting to that point and kind
of always focusing on that worstcase scenario for the future.
I want to be hopeful about thefuture.
(42:12):
This isn't an easy disease tolive with.
But I do want to have some hope, because if you get mired in
statistics like you're mired instatistics like you're more
likely to get cancer, you'remore likely to get other
autoimmune diseases heartdisease, kidney failure, et
cetera, et cetera then you'reconstantly going to be in this
(42:35):
state of both grief and anxietyabout what's going to happen to
me in the future.
All I can do is take it a dayat a time and try to help myself
now and to ask for that helpnow.
Claire (42:46):
You've just made me realize something.
We often ask people if theirgrief has changed their view of
the future and for a lot ofpeople, especially when we're
speaking to them, they've cometo this point of it's helped
them in a good way.
So they've gone through thisgrief and now they're grateful
for life, or they feel morealive, or they take it each day
as it comes.
They've got all these goodthings that have helped them in
the future, or they've got overthe worst.
(43:07):
You think.
You know it can't get any worsethan that.
Therefore, I've got thisfreedom in how I live.
But when it's something like adiagnosis word, you know I'm 50
times more likely to have aheart attack.
Or you know I might get worsefrom here and need help and I've
got to ask someone to lookafter me and it changes it in a
(43:27):
very sort of negative way.
And I hadn't really put the twoside by side before and thought
about that.
And I know, for, like people inthe childless world, there's a
lot of fear with the future aswell, because you have this
assumption that if you'remarried or you have children,
they'll help look after you whenyou're older.
If you don't have any of those.
There's that fear of whathappens when I get old.
Who's going to look after me?
So yeah, it's not good and Ihadn't really thought about that
(43:48):
until you just said it.
Have you had to?
You said you talk about hope.
Have you had to really activelyput hope in the future to make
it seem better, to stop itseeming so dark?
Olivia Abousaid (43:59):
Yeah, I think it is definitely something I've
had to consciously be aware ofand consciously try to kind of
insert that into my life, thatbit of hope, and to not be such
a defeatist about it.
Because it can be really easyto get that way when you have an
(44:19):
autoimmune disease, especiallywhen it feels like the life is
sucking out of you, sometimeswith this fatigue Not to again
get into hyperbole but it doesfeel that way sometimes, like
what kind of life is this if I'mthis exhausted all the time and
I can barely function and doanything?
So it can be hard to reallyhard to stay positive, really
(44:43):
hard to insert hope sometimes.
But also, you know, we don'tknow that there is an unknown,
we don't know that the worstcase scenario is going to happen
.
We just don't know that.
And oddly there's some comfortin that, because if we knew the
worst case scenario for sure wasgoing to happen, then I think
(45:04):
it would be very normal to bevery down all the time and say
you know, well, that's it.
I may as well throw my hands upand give up and everything.
But the fact of the matter is Idon't know that this will get
worse for me.
We do naturally get a littlemore tired as we get older, but
I don't know that I'm ever goingto have organ failure.
We're controlling my lupus withmedicine and that may just be
(45:28):
the story.
For me.
It stays under control.
I don't have any organinvolvement and so I try to take
hope where I can, and I thinkthat's what a lot of people with
autoimmune diseases do is youjust try to find hope where you
can, try to accept what is rightnow and you still have to live
(45:48):
your life.
You still have to try to find alife and find joy in that life.
And you brought up a good point,chris, a little earlier about
shoulds.
You know this is something welearn in like cognitive
behavioralism.
Sometimes what's referred tothese days as the cognitive
dissonances is try to stay awayfrom shoulds, because who is
(46:10):
shoulding you?
Why is society shoulding you?
Why are you shoulding yourself?
Why are you shoulding otherpeople?
We don't want to cling too muchto these things that we either
prescribe to ourselves or thatsociety prescribes to us,
because they don't do us anyjustice.
When you have something like anautoimmune disease or
childlessness or things likethat, certain things have been
(46:30):
taken out of your control, butthat doesn't mean that your life
always has to feel out ofcontrol or that you were always
a victim to your circumstances.
We do still have some control.
We do still have some agencyand that's something I talk
about with my clients as well isthat we, we have some
(46:51):
empowerment.
So let's kind of focus in onthat.
It's okay to grieve and mournthe loss and things like that.
That's always going to be there.
But it's also okay to grieveand mourn the loss and things
like that.
That's always going to be there.
But it's also okay to have somehope and to look for better
things.
Claire (47:07):
Yeah, Because if you just project doom into the
future, it just ruins the now,doesn't it?
You end up living in a muchworse place about something that
, like you said, might neverhappen.
Has hope?
Has it always been there?
What's your relationship beenlike with hope?
Has there ever been a pointwhen you'd say you lost all hope
?
Olivia Abousaid (47:25):
Hope has been a little elusive at times, to be
honest.
You know, with major fatigueit's really hard to keep a
positive attitude.
Sometimes it's really hard,especially when you're not, when
everything has to get put onhold, the dishes have to sit in
the sink, the laundry's going tosit there undone, you're not
(47:45):
working on your business as much, you're not hanging out with
friends as much, and communityis so important.
So you know that one reallyhurts sometimes and so it's um,
it's been elusive for me attimes.
It's been hard to find thathope, but I'm making more of a
conscious effort these days toinsert it and to include it in
(48:06):
my thinking and to not be sodown about it all the time, and
that's part of working throughthis grief for me.
Claire (48:14):
There's a question I want to ask you.
It's not an easy question, Iwouldn't ask it to everybody
actually, but would you say anygood has come from it?
Has there been good coming outof your diagnosis and everything
you've gone through?
Olivia Abousaid (48:26):
that's a great question, I would say there is
some good.
You know, the pace that I wasgoing out was not healthy.
Um, oftentimes, at past jobs Iwould, in order to prove myself
there's a bit of people pleasingin there as well.
In order to prove myself.
At past jobs I would, in orderto prove myself there's a bit of
people pleasing in there aswell.
In order to prove myself.
At past jobs, I would like worklike crazy and do this and do
(48:47):
that and multitask and all ofthese things just to prove
myself and show them like what agood employee I am.
And that burned me out reallyquickly at job after job.
And so now I have to make thattime.
I have to slow down.
I have to make that time I haveto pace myself.
So now I'm actually working ata rate that's more normal.
(49:12):
I hate to use the word normal,but for lack of a better term,
I'm pacing myself better.
I'm not killing myself to provemyself to other people.
I am prioritizing my health andwhat I need to get by versus
what's so important for otherpeople.
So I think that's been a realpositive for me.
It's kind of really brought downthat people pleasing and having
(49:36):
to prioritize my health and Ithink, as I've gotten more open
and talking with my friends andfamily about it and realizing
more recently that I do needhelp with things, it's making me
reach out to other people andbuild community in a way that I
have not before.
You know, when you're feelinghealthier and less tired you
(49:57):
know I was in that.
I'm an independent woman mode.
I can do it all, I don't needanybody, and it's actually kind
of nice to build thesefriendships more solidly and to
build more of a community, andso there are pluses.
I thank you for asking thisquestion.
It's a really good questionbecause it doesn't all have to
be grief or loss, althoughthat's definitely a major part
(50:21):
of it, but there's silver liningtoo.
Chris (50:26):
I'm going to ask a follow up to that, because that was
such a lovely question andlovely answer.
Could part of the experiencewith hope be to get to a point
when you fully come to termswith it, where, well, how much
of a stretch could it be tothink in the future there might
be a time where you're actuallythankful for this, that this is
actually I'm thankful for whoI've become because of it?
(50:47):
How much of a stretch, howridiculous would that be, you
know, to hope there could be aday you're thankful for it?
Olivia Abousaid (50:51):
So ridiculous, totally ridiculous.
No, I wouldn't go so far as tosay ridiculous, but it's.
You know, it does.
That definitely does feel likea stretch sometimes, but it's
not out of the realm ofpossibility.
I'm not there yet now, I'll behonest in saying that, but it
could be and I feel like I'm onmy way towards that now, where
(51:16):
I'm learning to appreciate thegood changes that it's made, the
slowing down that I've had todo and the community building
that I've done, and I think overtime, over the years, it may
get to the point where I'm, likeyou know, this may have been
the best thing that everhappened to me.
Who knows?
(51:37):
Not there right now, not theretoday but, maybe I feel like I
am on the way to that, and withevery autoimmune disease,
acceptance really does have tobe part of it at some point.
Not just autoimmune disease,but any grieving.
You will keep grieving, therewill always be grief, but
(51:57):
there's an acceptance that comesat a certain point where you're
like this is just how it is,let's move on instead of always
letting it mire me down.
Chris (52:07):
Well, it's been wonderful to chat, olivia.
Thank you so much for your time.
There's lots I'm going to takeaway from this chat, but one of
the things I can still.
I've still got your voice in myhead going who's shutting you,
or are you shutting yourself?
Got your voice in my head goingwho's shutting you, or are you
shutting yourself?
That will definitely be one ofthe things I take away, but
thank you for sharing what youhave.
We like to end our episodeslike this by asking our guests
(52:30):
about their herban, so somethingthat you feel like you've
nurtured, you've grown in ahealthy way that is worth
passing on and sharing withsomebody else, and we simplify
that with the question what'syour Herman?
Olivia Abousaid (52:45):
So I love this question.
I think for me, my Herman is myempathy, my sense of empathy.
I've always been a naturallyempathetic person, but it is
something that you can stillgrow and nurture.
When you're dealing with anytype of grief or trauma or loss,
(53:05):
it tends to make you veryinward facing and very sort of
introspective and it's hard toget out of your head and look
and see what's going on in theworld.
And I have found something thathelps me with my grief and in
helping other people with griefis that empathy, that sense of
(53:27):
empathy Because I don't want tosay this the wrong way, I don't
want it to come off wrong, butbeing depressed or in that
isolated place can make you abit selfish, in that it's hard
to look outside of yourself andto really be there for other
people.
And when you practice thatempathy you can then kind of
(53:48):
look outwardly and start to askpeople well, how are you doing?
Something as simple as that isa practice in empathy and to me
that both helps that person andletting them know that you care,
and it helps you in gettingoutside of yourself, which is
something that's so important tokeep practicing and doing as
(54:09):
you're dealing with grief andknowing that you're not alone.
This is a reminder you're notalone.
Reach out, ask someone howtheir day is going, and that can
help you get out of yourselfand get out of your head.
It's almost its own groundingexercise, in a way.
So for me, my Herman isdefinitely that sense of empathy
that I like to pass on to otherpeople, that I hope other
(54:32):
people are passing back to me aswell as on to other people,
because we're living in such acrazy world these days I won't
get into the politics of it, butit's a crazy world so I think
we need empathy more than ever.
Claire (54:54):
Empathy.
How different would the worldbe if we all had more of that.
Thank you so much, olivia, forsharing the losses that come
with living with a chronicillness.
These invisible losses can beso hard for others to identify
or even understand, so we'regrateful for voices that want to
share what it's like to helpothers grow in their empathy for
people battling with healthissues on a daily basis.
Chris (55:15):
If you'd like to find out more about Olivia and her work,
head over to her website.
If you'd like to find out moreabout Olivia and her work, head
over to her website, which ispact-coachingcom that's
P-A-C-T-hyphen-coaching.
com or find our show notes formore links.
And if you want to connect withClaire and myself or dive into
our growing list of 101different types of loss, you can
(55:36):
visit our website, which is www.
thesilentwhy.
com, or find us on social mediaat @thesilentwhypod.
Claire (55:41):
You'll also find our newsletter, more about hermans
and all of our previous episodesnow we have to do a bit that
every podcast host dreads butreally needs to say if you've
enjoyed this episode, pleaseleave us a rating or a review,
whether it's on apple podcast,spotify, pocketcast, good pods
wherever you listen.
If there's a review option,we'd love it if you used it.
Chris (56:00):
It will certainly help new listeners decide if this is
the podcast for them, and forsmall shows like ours, your
review makes a big difference.
Claire (56:07):
We've got 14 reviews on Apple Podcasts right now, which
suggests that only 14 of you arelistening, even though we know
there are at least 31 of you outthere.
Chris (56:16):
Steady on yes, because the other 17 are on Spotify and
I'm 82 on Pocket Casts.
Well, that's probably everyonethen, and if it is, we love you
all, we'll leave you with aquote from author and artist
Jonathan Harnish, who's livedwith his own struggles around
illness and mental health.
Claire (56:32):
"The strongest people are not those who show strength
in front of the world, but thosewho fight and win battles that
others do not know anythingabout.
"
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I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
Cold Case Files: Miami
Joyce Sapp, 76; Bryan Herrera, 16; and Laurance Webb, 32—three Miami residents whose lives were stolen in brutal, unsolved homicides. Cold Case Files: Miami follows award‑winning radio host and City of Miami Police reserve officer Enrique Santos as he partners with the department’s Cold Case Homicide Unit, determined family members, and the advocates who spend their lives fighting for justice for the victims who can no longer fight for themselves.