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.

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.

Transcript – Ep. 4

You look fine, but you’re not fine, and that’s exactly what we’re here to talk about. Welcome to Fine, But Not Fine, the podcast about navigating rare disease healthcare battles and the messy reality of chronic illness. I’m Kelly Paul, and I’ve been living with Mycosis Fungoides since 2015.
This is a space for real talk, real experiences and practical advice, because surviving is one thing, but figuring out how to actually live, that’s the hard part.

The Importance of Finding the Right Doctor

Hey everyone, and welcome back to Fine, But Not Fine. Today, we’re diving into something that can make or break your health care experience, and that’s finding the right doctor and building a medical team that actually listens. And if you have ever left a doctor’s office feeling dismissed, unheard or even gaslit, you are not alone.

Not All Doctors are Created Equal

The reality is, not all doctors are created equal. Some are brilliant, compassionate, and they go above and beyond to help their patients. Others, not so much. Now I’ve experienced both the kind of doctor who barely looked at me and dismissed my concerns and the kind who changed my entire treatment path for the better. But here’s the thing, finding the right doctor takes effort, and it means doing your own research, advocating for yourself and even being willing to wait months for the right specialist.

Navigating the Search for the Right Medical Specialist

So, today, I’m going to walk you through how to spot the red flags of a bad doctor, how I finally found a doctor who took me seriously, and what made him different. How to actually search for the right specialist when you have a rare disease, and why building a medical team is a long term process, and how my care has evolved.

My First Dermatologist Experience

So, when I first started looking for answers about my skin, I booked an appointment with a dermatologist. The first one I could get into. I didn’t know that finding the right doctor would be as hard as getting an actual diagnosis. From the moment I walked in to that very first appointment, I knew this was not a good fit. She barely looked at me, not at my skin, not my face, nothing really. Instead of actually listening to what I was saying, she immediately started talking about cosmetic dermatology.

And here’s the deal, Botox and laser treatments were not what I was there for. I had a really bad spot on my thigh that was causing me a lot of issues and was causing me concern, but instead of taking a biopsy of that area, she chose a spot on my shoulder that really wasn’t bothering me. And then that biopsy got infected, and it still didn’t give me the answers I needed. And when I brought up my concerns, she dismissed me outright and cold. And that’s when I realized, if I wanted answers, I needed to find a better doctor.

Finding a Doctor Who Listened

So, I started researching. So, if you’re looking for a specialist, especially for a rare disease, here are some steps to take. Look for board-certified specialists. If you need a dermatologist, look for board-certified dermatologists who specialize in medical dermatology, not just cosmetic procedures.

If you already know your disease, search for doctors with expertise in that specific condition and use trusted medical resources. So, check reputable organizations related to your disease. For Cutaneous Lymphoma. That probably means looking at the Cutaneous Lymphoma Foundation and their patient resources section. It’s really robust. And most rare disease foundations have doctor directories or lists of specialists that they would recommend. You can also check out hospital and research center websites if your condition is rare. Academic medical centers are often great places to find specialists. Look at hospitals such as Duke, Mayo Clinic, Johns Hopkins, MD Anderson, Stanford, or other major cancer centers to see if they have doctors that focus on your disease, if you have cancer.

And check doctor reviews and patient communities, and I’m going to emphasize here, reviews don’t tell the full story. You want to know who makes them? People who love people and people who hate people. But patient communities have individuals who often share experiences and can recommend great doctors online groups, Reddit threads and rare disease forums can also be gold mines for doctor referrals.

Now here’s the hard part. You absolutely need to be prepared to wait. The best specialists often have long wait times, sometimes months, and they may only see your condition on certain days of the week, but if you suspect something serious, or if you know it, it is worth waiting for the right person. And you can also call and ask about their cancelation policies. Sometimes you can get in sooner, if you’re flexible and willing to be called to fill a spot for a cancelation.

Now, when I finally saw my new dermatologist, and it took months, everything about the experience was different. Right off the bat, he made me feel heard. He actually examined my skin. He took scrapings and looked at them under a microscope, right there in the office. Then he did a biopsy on an area that made sense to me, and he told me why that particular area was the best to biopsy of all the places I had that he could have biopsied. He was thorough. He was engaged, and for the first time, I felt like someone was actually looking for answers with me.

And then came a really big difference. He personally called me with my results, not a nurse, not a front desk person, but my doctor. He took the time to go over everything, answer my questions, and talk through the next steps, and this was over multiple calls and one of those next steps was a big decision whether I should immediately see a specialist in my disease at Duke University. And as it turns out, my then new dermatologist had actually trained under this Duke physician who specialized in my exact condition, and he offered to refer me to her right away, but after talking through my options, we decided that I would start treatment with him instead. He had the knowledge, the ability to communicate with that specialist at Duke, and I felt really, really comfortable in his care.

So, for more than five years, he was my primary doctor for treatment of Mycosis, Fungoides. And throughout that entire time, he made sure I was getting the right care and that I was involved in that care. Eventually, my condition did change, and we decided it was likely time for me to see the Duke specialist directly for active treatment. And now I see that Duke doctor who specializes in treating patients with my type of lymphoma, mycosis fungoides, but I still see my original dermatologist for skin checks and other general dermatology needs, and the best part, he still keeps an eye on my case to make sure I’m getting the treatment I need and that I’m doing well. This is what a great doctor does. They don’t just treat you in the moment and move on. They care about your long term well being, even if they’re no longer your primary specialist. That is the kind of doctor you want on your team.

So, if you’re wondering whether your current doctor is the right fit, here are some red flags that should make you consider looking elsewhere.

Doctor Red Flags to Watch For

First off is they don’t listen to you. If you feel rushed dismissed or like your concerns aren’t taken seriously, that’s a really big problem. And if they don’t examine you properly, I mean, a dermatologist should be looking at your skin, right? A specialist should be running appropriate tests. Those are things that if they’re not doing those things, that’s a concern. They also if they diagnose you without investigation, do they make assumptions without tests? If so, you might want to be cautious, right? And if they focus on selling instead of solving, my example, that first dermatologist I saw, she was pushing cosmetic treatments. Yeah, I wasn’t there for that. I had an issue that I needed taken care of, which was completely not what she was trying to provide. Is someone trying to push expensive supplements. Do there… do you have questions about what they’re doing, and it’s just not right. Those are red flags that you should be paying attention to.

Doctor Green Flags to Watch For

Now, I’m someone who always wants to see the sunny side, even though I’m a realist, so here’s what you should be looking for in a doctor who actually cares those green flags. And you heard it in my story, they take the time to listen, and they ask follow-up questions. They bring you in, right? This is your care. You are part of that.

They admit when they don’t know something, and they work to find answers. I remember when my dermatologist first proposed narrow band, UVB, light treatment for me, or NBUVB for my lymphoma. And this was something I would come into the office for three times a week, at least in that first year for treatment, and I go, how does this work? And his response was, essentially, well, we’re not entirely sure, but here’s what we know about how it works, how we know it, and why it we believe it works, and it makes sense. I have a rare and incurable disease. They don’t know what causes it, and they’re still trying to figure out how to cure it. So I mean, that was just a excellent example of a way to build trust and to provide transparency into the process.

They also perform the right tests before making assumptions. Now I’m not saying everything you go in for needs to be tested. Some things are so common and the test is not worth the expense. It’s not worth the impact. However, you know, performing the right test before making assumptions is important, especially with a an issue that is seems to be ever present or really has a lot of impact.

You know, I later learned my doctor suspected I had Mycosis Fungoides when he first saw me, but he pursued the science to determine my issue instead of making an assumption. And he also had experience with patients who had my condition.

Now, they educate you about your condition and your treatment options is I mentioned in one of my early podcasts. I still have my sticky notes from that phone call when he told me I had a rare and incurable lymphoma, and that was more than 10 years ago. And every once in a while when I might be feeling, you know, a little pouty or maybe a little bit lost, certainly not with fondness, I actually pull those notes out and look at them, and I’m really awed at the possible treatment progression he outlined that I would likely experience, and it has been almost 100% on the nose accurate. And this carries over to my treating specialist and her medical team. They educate me, they give me options. They listen to me. They’re interested in my health and my quality of life. What they do is follow up and stay engaged in long term care for me, for the patient.

Make the Time to Find The Right Doctor

So, if you’re struggling with a doctor who isn’t listening to you, trust your gut. You deserve a medical team that actually cares. Now it might take time to find the right doctor, but I promise when you do, it makes all the difference.

Now, if you found this episode helpful, make sure to subscribe to Fine But Not Fine, so you don’t miss future episodes. And if you’ve had a doctor who dismissed you, or, better yet, one who changed your life, I’d love to hear your story. Connect with me online at FineButNotFine.com.

Now for our next episode, we’ll talk about something that I don’t think gets nearly enough attention in its body image and rare disease. And when your body changes 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’m not alone. We’ll talk about how rare diseases impact the way we see ourselves, the emotional side of those changes, and how to reclaim confidence even when your body feels like it’s working against you.

Thanks for listening, and I’ll see you next time on Fine But Not Fine. Thanks for listening to Fine But Not Fine. If this episode resonated with you, subscribe so you don’t miss what’s next. And if you’ve got a story question or just need to vent, reach out. I’d love to hear from you until next time, take care and keep on going.