Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Kelly Paul (00:01):
You look fine, but
you're not fine, and that's
exactly what we're here to talkabout. Welcome to Fine, But Not
Fine, the podcast aboutnavigating rare disease,
healthcare battles, and themessy reality of chronic
illness. I'm Kelly Paul, andI've been living with Mycosis
Fungoide since 2015 This is aspace for real talk, real
(00:24):
experiences and practicaladvice, because surviving is one
thing, but figuring out how toactually live, that's the hard
part.
Welcome back to Fine, But NotFine. Today, we're diving into
something deeply personal, bodyimage and chronic illness, more
(00:48):
specifically, how to live in abody that doesn't look or feel
the way you want it to.
Living with a chronic illnessdoesn't just affect physical
health, it profoundly impactsone's body image and self
perception. Research indicatesthat individuals with visible
(01:09):
symptoms from chronic conditionsoften experience heightened body
image concerns, and this isparticularly true for diseases
that manifest physically, suchas skin related conditions that
I have.
Now, a study highlighted inPsychology Today emphasizes that
chronic illness can shape bodyimage and identity, especially
(01:33):
when the illness leads tovisible changes, and the
psychological toll of managing acondition that alters one's
appearance can lead to increasedself consciousness and anxiety.
Now, specifically focusing onMycosis, Fungoides, what I have,
the Cutaneous Lymphoma.Foundation notes that this
(01:55):
condition can be present foryears or even decades before
being accurately diagnosedbecause it often mimics other
skin issues like eczema orpsoriasis. And this prolonged
uncertainty can exacerbatefeelings of frustration and
negatively impact one's selfimage. Understanding these
(02:18):
challenges is crucial byacknowledging the profound
impact chronic illnesses have onbody image, healthcare
providers, support networks andus as individuals, we can work
together to develop strategiesthat address both the physical
and emotional aspects of theseconditions.
(02:41):
Now for me, my body image isimpacted by Mycosis Fungoides, a
form of Cutaneous T-CellLymphoma. It's rare, but in my
case, it shows up on my skin,and I have red inflamed and
sometimes scabbed over patchesthat might weep. Sometimes they
(03:05):
bleed because they're veryitchy, and I scratch them. And
to put it pretty bluntly, theyreally don't look very nice.
They look pretty awfulsometimes. And for a long time,
I did what I think a lot ofpeople with visible skin
conditions do I covered up longpants, long sleeves, cardigans,
(03:27):
even in the middle of miserable,humid southern summers. I felt
like my skin made me look gross,and I wasn't willing to let
other people see it.
But one day, I actually hit abreaking point, and I don't
remember exactly when I decidedI wasn't going to let my skin
(03:47):
keep me in hiding anymore. Justone day I realized I wasn't
doing it anymore, and I suspectit's because covering up was
impacting my enjoyment of life,and let's face it, having an
incurable disease makes youthink about enjoying life.
Now, one of the things I like todo with my husband is go to
(04:09):
Virginia International Raceway,VIR and we go to enjoy really
cool cars racing around a track.It is a lot of fun. The
participants and the attendeesare awesome, and the facilities,
it's a country club for racecars. So it's nice. And most of
this happens in the summer, thehot, humid southern summer.
(04:34):
Y'all wearing a cardiganoutdoors in the southern summer
heat, it's exhausting and itmakes me miserable. I mean
miserable. It sucks the fun out,and somewhere along the way, I
just decided I wasn't going todo that anymore. Why was I
making myself even moreuncomfortable than I already
(04:58):
was? Just because I was afraidof other people's reactions. So,
here I am, no more long sleeves,no more suffocating layers, at
least in summer, when it's cold,that's a whole other thing. But
honestly, if someone has aproblem with my skin, that is
their problem, not mine.
(05:20):
But here's the thing, justbecause I stopped covering up
doesn't mean I suddenly lovedwhat I saw. Even now, when I
look at my arms and legs, Ithink about what they used to
look like. I remember smoothskin, no patches, no scabs, no
(05:44):
bleeding, and yeah, I miss that.I wish my skin still looked like
that. And I don't say thatbecause I'm fishing for
sympathy. I'm long past that.It's just the reality of living
with something like this. Youcan accept it without loving it,
and that's where I've landed.
(06:05):
I've made peace with the factthat this is what my skin is
now. But peace is not the samething as loving it. And there
are the icky moments, you know,and there are also the moments
that remind me that even when Iforget about my skin, my skin
(06:25):
does not forget about me. Likewhen I mindlessly scratch one of
those patches or plaques on mybody, and a few minutes later,
and I realize I look somewhereor someone has said something,
and I have bled through my shirtor my pants. And there is
nothing quite like the look ofconcern —I'm being polite here —
(06:48):
on someone's face when theyrealize you're bleeding and
don't seem to care. But thetruth is, after years of this, I
just don't always care. It'spart of life now.
One place where this strugglereally shows up is at the gym.
Now, I go to the gym for acouple of reasons, and none of
(07:09):
them have to do with esthetics.I lost two people very close to
me much too soon from cardiacdisease, and honestly, that
scared the hell out of me, and Idon't want to follow the same
path. I want to give my body itsbest shot at longevity, even if
it's not the easiest body tolive in. And then, somewhat
(07:31):
accidentally, I discoveredsomething kind of cool, and
that's the working out actuallymakes my treatment side effects
less awful.
You know, I get blood work donea lot, one of those fun little
perks of having a rare disease.And after I started exercising
regularly, the bad numbers in mylabs, they started improving,
(07:54):
high cholesterol, bad liverfunction, all those markers that
we track dropped, and in doubledigit percentages. Now, don't
get me wrong, I'd still rathernot need monthly blood tests,
but I will say this, at leastthey gave me cold, hard proof
that working out was actuallyhelping. But it's not just the
(08:18):
physical part of it.
The gym really is a mental resetfor me. I walk in stressed,
overwhelmed, frustrated, andwhen I walk out, I have a
different perspective. Thethings that felt massive before
feel smaller. The stress doesn'tsit as heavy. My mind is clearer
(08:38):
and my outlook is better becausethe gym is one of the few places
where my body and I aren'treally at war.
That said I do have additionallogistics of working out with my
skin. Because of my patches, Ihave to be hyper aware of
infection risks, which means Ihave to clean every machine
(09:00):
before I use it, in addition toafterwards, because I can't
afford to pick up bacteria thatcould turn it into a skin
infection. And now, the gym I goto isn't your typical gym. It's
not some chain. There's not loudmusic. You don't have people
with their cell phones outhaving conversations or
(09:20):
recording their workouts, right?
It's, it's actually a fitnesscenter run by local hospital,
and their entire focus ishealth. And many of the members
are there through the SilverSneakers program, which is a
fitness benefit covered by, Ithink it's like a Medicare type,
Medicare Advantage typeinsurance. And others are there
because they've had a cardiacevent, and they're working to
(09:42):
regain their strength. Some aregoing through cancer treatment
or living with another chronicillness, and others, you know,
are just regular members orhospital employees who want a
space that aligns with theirvalues.
To even join, I had to getdoctor approval and disclose my
medical conditions to the teamat the gym so that they would
(10:04):
have it in case of a medicalemergency. And the people that
work there, they're not justfitness instructors, they're
exercise physiologists andspecialists, each with at least
a bachelor's degree in theirfield, and they help the members
there, you know, they'll takeblood pressure, they'll you
(10:24):
know, they're doing a lot ofrehab type of work, and they
understand the medical needsthat their members have when
they're there to work out.
And part of what makes thisplace really special is the
community. People aren't justworking out in their own little
world. They know each other'snames. They introduce themselves
to each other, they check oneach other, and it's a space
where the goal isn't necessarilylooking a certain way. It's
(10:48):
really about staying alive,staying mobile and staying
independent. And for someonelike me dealing with a visible
condition, it's a safe space. Idon't have to explain myself. No
one gives me weird looks.Everyone understands in some
way, what it's like to benavigating health challenges, or
(11:11):
if they do ask questions, it'sreally in the interest of
education and learning.
The great news is these kinds offacilities exist all over the
country. Many started as part ofa cardiac rehab programs the
hospitals and evolved ashospitals realized the best way
to keep people out of thehospital is to help them stay
active and engaged.
(11:32):
Now, when we talk about bodyimage and chronic illness, it's
really easy to focus on just onepiece of the puzzle, like for
me, my skin, but the reality is,there are so many ways illness
and treatment can change how wesee ourselves. Like I said, for
me, it's my skin, but forsomeone else that might be
losing their hair because oftreatment, some medications
(11:55):
cause weight gain or weightloss. Some surgeries leave scars
that never fully fade, and someconditions change mobility,
making it harder to move the wayyou once did. And the tough
part, none of this is a choice.
You know, if someone shavestheir head because they want to,
it's empowering, but when canceror medication takes that choice
(12:17):
away, it's a different story.Same with weight changes when
it's happening because of atreatment side effect, you don't
get the same just eat this orjust workout options that people
like to suggest.
And this is why body image inthe context of chronic illness
is so complex. It's not aboutunrealistic beauty standards.
(12:39):
It's about grieving the parts ofyourself that don't look or feel
like you anymore. So if you'relistening and struggling with
this, you're not alone, and it'sokay to feel conflicted. You can
accept your body without lovingit. You can work toward feeling
better about yourself while alsomourning the way things used to
(13:02):
be, what matters most is thatyou give yourself grace, because
living in a body that doesn'tfeel like yours is already hard
enough without piling on guiltor shame.
Like I've mentioned in otherpodcast episodes, I like to look
for the sunny side of things.And one of the biggest pros to
(13:24):
all of this is that I've learnedto be really, really open. If
someone asks, What's that? Idon't get defensive. I don't try
to make them feel bad fornoticing. I just explain, oh,
that's a patch of CutaneousT-Cell Lymphoma, specifically
Mycosis Fungoides. It's a typeof blood cancer that shows up on
(13:46):
my skin, and it's notcontagious.
And you know what? Most of thetime, people appreciate the
explanation. They're justcurious. They're not trying to
be rude, and I'd rather educatesomeone than have them silently
staring and wondering. Buthere's the thing, we need to
(14:06):
stop whispering "cancer." Somany people hear that word and
immediately think death. Andwhile yes, that is the terrible
reality for many, it is not thereality for all, and we have to
be able to talk about it, tonormalize it, to make space for
(14:28):
the full spectrum of cancerexperiences.
Because cancer isn't just thebig, dramatic diagnosis like you
see in movies, it's also this.It's rashes and blood work and
treatment side effects andinsurance challenges and
(14:50):
pharmacies. It's adjusting to abody that doesn't feel like
yours anymore. And the more wetalk about that, the. Easier it
becomes.
So, where does all this leaveme? Well, I'm no longer hiding
my skin, and that's a win, andI've accepted for today that
(15:13):
this is my body, another win,but I don't love it. I don't
always like it on some days.Yes, I wish I could go back. But
you know what? Some days, aftermore than a decade of this, I
just don't think about it atall. It's a process, and I'm
(15:36):
still in it.
If you're struggling with yourown body image, whether it's
because of a rare disease, achronic condition, or just the
way life has shaped you. You'renot alone, and it's okay to be
in the middle of figuring itout. And if you have any
thoughts on this, I'd love tohear them. Thanks for listening,
(16:00):
and remember, it's okay to befine, but not fine.
Thanks for listening to Fine,But Not Fine. If this episode
resonated with you, subscribe soyou don't miss what's next. And
if you've got a story questionor just need to vent, reach out.
I'd love to hear from you untilnext time, take care and keep on
(16:23):
going.