Finding the Right Doctor - Ep. 4

In this episode of Fine, But Not Fine, we tackle one of the most critical aspects of managing a rare disease: finding the right doctor. If you’ve ever left an appointment feeling unheard or dismissed, you’re not alone. Not all doctors are created equal, and building the right medical team takes effort.

I share my personal experiences—from a dermatologist who completely ignored my concerns to the doctor who truly listened and changed my treatment path. Along the way, I break down:

•Red flags that signal a bad doctor.

•Green flags that indicate a great doctor.

•How to find a specialist, especially for a rare disease.

•Why building a medical team is a long-term process and how my care has evolved over time.

I also discuss how my first dermatologist failed me, why my second doctor changed everything, and how I eventually transitioned to a specialist at Duke for advanced treatment. Throughout this journey, I’ve learned that the right doctor isn’t just someone who prescribes medication—they take the time to listen, investigate, and care about your long-term well-being.

If you’re struggling with a dismissive doctor, trust your gut—you deserve better.

Episode Transcript

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 the messyreality of chronic illness. I'm
Kelly Paul, and I've been livingwith Mycosis Fungoide since
2015.

(00:22):
This is a space for real talk,real experiences and practical
advice, because surviving is onething, but figuring out how to
actually live, that's the hardpart.
Hey everyone, and welcome backto Fine, But Not Fine. Today,

(00:42):
we're diving into something thatcan make or break your health
care experience, and that'sfinding the right doctor and
building a medical team thatactually listens. And if you
have ever left a doctor's officefeeling dismissed, unheard or
even gas lit, you are not alone.

(01:03):
The reality is, not all doctorsare created equal. Some are
brilliant, compassionate, andthey go above and beyond to help
their patients. Others, not somuch. Now I've experienced both
the kind of doctor who barelylooked at me and dismissed my

(01:24):
concerns and the kind whochanged my entire treatment path
for the better. But here's thething, finding the right doctor
takes effort, and it means doingyour own research, advocating
for yourself and even beingwilling to wait months for the

(01:44):
right specialist.
So, today, I'm going to walk youthrough how to spot the red
flags of a bad doctor, how Ifinally found a doctor who took
me seriously, and what made himdifferent. How to actually
search for the right specialistwhen you have a rare disease,
and why building a medical teamis a long term process, and how

(02:09):
my care has evolved.
So, when I first started lookingfor answers about my skin, I
booked an appointment with adermatologist. The first one I
could get into. I didn't knowthat finding the right doctor
would be as hard as getting anactual diagnosis. From the
moment I walked in to that veryfirst appointment, I knew this

(02:34):
was not a good fit. She barelylooked at me, not at my skin,
not my face, nothing really.Instead of actually listening to
what I was saying, sheimmediately started talking
about cosmetic dermatology.
And here's the deal, Botox andlaser treatments were not what I
was there for. I had a reallybad spot on my thigh that was

(02:58):
causing me a lot of issues andwas causing me concern, but
instead of taking a biopsy ofthat area, she chose a spot on
my shoulder that really wasn'tbothering me. And then that
biopsy got infected, and itstill didn't give me the answers
I needed. And when I brought upmy concerns, she dismissed me

(03:22):
outright and cold. And that'swhen I realized, if I wanted
answers, I needed to find abetter doctor.
So, I started researching. So,if you're looking for a
specialist, especially for arare disease, here are some
steps to take. Look forboard-certified specialists. If

(03:46):
you need a dermatologist, lookfor board-certified
dermatologists who specialize inmedical dermatology, not just
cosmetic procedures.
If you already know yourdisease, search for doctors with
expertise in that specificcondition and use trusted
medical resources. So, checkreputable organizations related

(04:10):
to your disease. For CutaneousLymphoma. That probably means
looking at the CutaneousLymphoma Foundation and their
patient resources section. It'sreally robust. And most rare
disease foundations have doctordirectories or lists of
specialists that they wouldrecommend. You can also check

(04:32):
out hospital and research centerwebsites if your condition is
rare. Academic medical centersare often great places to find
specialists. Look at hospitalssuch as Duke, Mayo Clinic, Johns
Hopkins, MD Anderson, Stanford,or other major cancer centers to

(04:54):
see if they have doctors thatfocus on your disease, if you
have cancer.
And check doctor reviews andpatient communities, and I'm
going to emphasize here, reviewsdon't tell the full story. You
want to know who makes them?People who love people and
people who hate people. Butpatient communities have

(05:16):
individuals who often shareexperiences and can recommend
great doctors online groups,Reddit threads and rare disease
forums can also be gold minesfor doctor referrals.
Now here's the hard part. Youabsolutely need to be prepared
to wait. The best specialistsoften have long wait times,

(05:42):
sometimes months, and they mayonly see your condition on
certain days of the week, but ifyou suspect something serious,
or if you know it, it is worthwaiting for the right person.
And you can also call and askabout their cancelation
policies. Sometimes you can getin sooner, if you're flexible

(06:05):
and willing to be called to filla spot for a cancelation.
Now, when I finally saw my newdermatologist, and it took
months, everything about theexperience was different. Right
off the bat, he made me feelheard. He actually examined my
skin. He took scrapings andlooked at them under a

(06:29):
microscope, right there in theoffice. Then he did a biopsy on
an area that made sense to me,and he told me why that
particular area was the best tobiopsy of all the places I had
that he could have biopsied. Hewas thorough. He was engaged,

(06:51):
and for the first time, I feltlike someone was actually
looking for answers with me.
And then came a really bigdifference. He personally called
me with my results, not a nurse,not a front desk person, but my
doctor. He took the time to goover everything, answer my

(07:14):
questions, and talk through thenext steps, and this was over
multiple calls and one of thosenext steps was a big decision
whether I should immediately seea specialist in my disease at
Duke University. And as it turnsout, my then new dermatologist

(07:36):
had actually trained under thisDuke physician who specialized
in my exact condition, and heoffered to refer me to her right
away, but after talking throughmy options, we decided that I
would start treatment with himinstead. He had the knowledge,
the ability to communicate withthat specialist at Duke, and I

(07:57):
felt really, really comfortablein his care.
So, for more than five years, hewas my primary doctor for
treatment of Mycosis, Fungoides.And throughout that entire time,
he made sure I was getting theright care and that I was
involved in that care.Eventually, my condition did

(08:19):
change, and we decided it waslikely time for me to see the
Duke specialist directly foractive treatment. And now I see
that Duke doctor who specializesin treating patients with my
type of lymphoma, mycosisfungoides, but I still see my
original dermatologist for skinchecks and other general

(08:40):
dermatology needs, and the bestpart, he still keeps an eye on
my case to make sure I'm gettingthe treatment I need and that
I'm doing well. This is what agreat doctor does. They don't
just treat you in the moment andmove on. They care about your
long term well being, even ifthey're no longer your primary

(09:01):
specialist. That is the kind ofdoctor you want on your team.
So, if you're wondering whetheryour current doctor is the right
fit, here are some red flagsthat should make you consider
looking elsewhere.
First off is they don't listento you. If you feel rushed

(09:21):
dismissed or like your concernsaren't taken seriously, that's a
really big problem. And if theydon't examine you properly, I
mean, a dermatologist should belooking at your skin, right? A
specialist should be runningappropriate tests. Those are
things that if they're not doingthose things, that's a concern.

(09:46):
They also if they diagnose youwithout investigation, do they
make assumptions without tests?If so, you might want to be
cautious, right? And if theyfocus on selling instead of
solving, my example, that firstdermatologist I saw, she was
pushing cosmetic treatments.Yeah, I wasn't there for that. I

(10:07):
had an issue that I needed takencare of, which was completely
not what she was trying toprovide. Is someone trying to
push expensive supplements. Dothere... do you have questions
about what they're doing, andit's just not right. Those are
red flags that you should bepaying attention to.
Now I'm someone who always wantsto see the sunny side, even

(10:30):
though I'm a realist, so here'swhat you should be looking for
in a doctor who actually caresthose green flags. And you heard
it in my story, they take thetime to listen, and they ask
follow up questions. They bringyou in, right? This is your
care. You are part of that.

(10:52):
They admit when they don't knowsomething, and they work to find
answers. I remember when mydermatologist first proposed
narrow band, UVB, lighttreatment for me, or NBUVB for
my lymphoma. And this wassomething I would come into the
office for three times a week,at least in that first year for
treatment, and I go, how doesthis work? And his response was,

(11:15):
essentially, well, we're notentirely sure, but here's what
we know about how it works, howwe know it, and why it we
believe it works, and it makessense. I have a rare and
incurable disease. They don'tknow what causes it, and they're

(11:35):
still trying to figure out howto cure it. So I mean, that was
just a excellent example of away to build trust and to
provide transparency into theprocess.
They also perform the righttests before making assumptions.
Now I'm not saying everythingyou go in for needs to be

(11:56):
tested. Some things are socommon and the test is not worth
the expense. It's not worth theimpact. However, you know,
performing the right test beforemaking assumptions is important,
especially with a an issue thatis seems to be ever present or

(12:17):
really has a lot of impact.
You know, I later learned mydoctor suspected I had Mycosis
Fungoides when he first saw me,but he pursued the science to
determine my issue instead ofmaking an assumption. And he
also had experience withpatients who had my condition.

(12:38):
Now, they educate you about yourcondition and your treatment
options is I mentioned in one ofmy early podcasts. I still have
my sticky notes from that phonecall when he told me I had a
rare and incurable lymphoma, andthat was more than 10 years ago.
And every once in a while when Imight be feeling, you know, a
little pouty or maybe a littlebit lost, certainly not with

(13:02):
fondness, I actually pull thosenotes out and look at them, and
I'm really awed at the possibletreatment progression he
outlined that I would likelyexperience, and it has been
almost 100% on the noseaccurate. And this carries over

(13:23):
to my treating specialist andher medical team. They educate
me, they give me options. Theylisten to me. They're interested
in my health and my quality oflife. What they do is follow up
and stay engaged in long termcare for me, for the patient.

(13:44):
So, if you're struggling with adoctor who isn't listening to
you, trust your gut. You deservea medical team that actually
cares. Now it might take time tofind the right doctor, but I
promise when you do, it makesall the difference.
Now, if you found this episodehelpful, make sure to subscribe

(14:07):
to Fine but not fine, so youdon't miss future episodes. And
if you've had a doctor whodismissed you, or, better yet,
one who changed your life, I'dlove to hear your story. Connect
with me online atFineButNotFine.com
Now for our next episode, we'lltalk about something that I

(14:27):
don't think gets nearly enoughattention in its body image and
rare disease. And when your bodychanges because of symptoms,
treatment, scars or medications,it can be kind of hard to
recognize yourself sometimes.It's something I've struggled
with personally, and I know I'mnot alone. We'll talk about how

(14:50):
rare diseases impact the way wesee ourselves, the emotional
side of those changes, and howto reclaim confidence even when
your body feels like it'sworking against you.
Thanks for listening, and I'llsee you next time on Fine But
Not Fine. Thanks for listeningto Fine But Not Fine. If this

(15:11):
episode resonated with you,subscribe so you don't miss
what's next. And if you've got astory question or just need to
vent, reach out. I'd love tohear from you until next time,
take care and keep on going.