Managing multiple doctors with a rare disease or chronic illness is complicated, confusing, and honestly, exhausting. In this episode, I talk about what it’s really like to juggle doctors who don’t talk to each other — from conflicting advice and duplicate lab tests to the emotional toll of telling your story over and over again. I share the strategies that help me stay (somewhat) sane, like keeping my own records, maintaining a master medication list, and advocating out loud — even when it feels pushy. 

Managing Multiple Doctors – Ep. 25 – The Fine, But Not Fine Podcast

Managing multiple doctors with a rare disease or chronic illness is complicated, confusing, and honestly, exhausting. In this episode, I talk about what it’s really like to juggle doctors who don’t talk to each other — from conflicting advice and duplicate lab tests to the emotional toll of telling your story over and over again. I share the strategies that help me stay (somewhat) sane, like keeping my own records, maintaining a master medication list, and advocating out loud — even when it feels pushy. 

Episode Transcript

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, health care 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.

Managing multiple doctors. Have any of you been able to figure that out? Because I sure as heck haven’t. I’m telling you, if you have ever felt like the project manager for your own body, juggling a team of specialists, team of doctors that do not seem to talk to each other, this episode is for you, because honestly, it is complicated, and goodness, it is exhausting. And like many things with chronic disease, it feels like another one of those second full time jobs.

So, when you have a rare disease, you generally don’t have just one doctor. You have a primary care physician, you have your specialist. You may have several. It may be a dermatologist, an oncologist, a rheumatologist, gastroenterologist or cardiologist. We know this list could go on and on, and each one of these specialists focuses on their part of your body, their slice of the whole big puzzle.

The problem is, nobody’s putting the whole picture together, and they all mean well, they’re all experts in their space, but this health care system is built into these crazy silos, and as rare disease patients, we do not fit neatly into those boxes, and we’re left as the ones connecting the dots.

So, what makes managing multiple doctors so hard? I can tell you, there’s several things.

Conflicting advice.

You know, one doctor says to increase a medication, another doctor says no, or it needs to be decreased. And you’re stuck in the middle wondering whose orders to follow. And I’ve had this with a couple of things, cholesterol medication, specifically, a lot of the medications I’ve had to take for my lymphoma treatment raise my cholesterol, or a component of what I call cholesterol, because there are multiple things that make up cholesterol.

And my lymphoma doctor might say, I want to prescribe you drug A, and the cardiologist says, no, you really need to be on drug B, or I’m not going to increase it. You shouldn’t take it at that point because of reason C that I’m not aware of, and it’s all based on the science and that they have. And so you’re kind of trying to figure out between the two doctors and communicate, well, yes, you said to do a but this doctor said not to, and this is why, and then trying to figure out what the heck you do, and it can be really frustrating.

I’ve also had it with medication that I take for thyroid I take thyroid medication because the medication from my lymphoma doctor impacted my thyroid negatively, and I had to take that medication. And you know, it just kind of comes out of the blue, where one says, Oh, your numbers are good, another one says your numbers are not good. And so you kind of have to figure that out.

It’s very frustrating and there, even in the same ownership of groups say, you know, all of these clinics are under one hospital system or something like that, getting those two doctors together to discuss or communicate about what’s going on and what’s best for the patient from where I sit doesn’t happen.
Now you also have the issue with duplicate tests. Now I take lab work every four weeks because of the medication from the doctor that treats my lymphoma. That’s fabulous, right? I get a lot of information in that. Well, my cardiologist wants tests, my primary care doctor wants tests, you know, maybe the you know, OBGYN wants tests.

I’ve been really fortunate in every discussion I’ve had with all of my doctors to say I have labs taken every four weeks. Can we make sure that you look at what those labs are, and if they’re sufficient for you use them, and if they’re not, can we add the draw on to when I do my regular tests, because I don’t want to be going into the lab for more blood work or duplicate blood work, because it can get very expensive because there are different billing codes. There may be, you know, a different cost to me based on those billing codes.

You’re also getting twice the needle sticks. Obviously, I’m getting a lot of needle sticks. I think anyway, once a month feels like a lot. Especially when every single lab I have access to goes straight from my left arm, and they are not set up to go to a different arm, which is strange to me, because I would think somewhere along the lines, they would want to be tracking where all they’re drawing from. You have to laugh about some of this stuff, right?

Communication black holes. You would think electronic medical records would help, but I’m here to tell you, I have not yet experienced that. Basically, we, the patients, become the messenger. Well, you know, Dr Smith said this, and then watching your doctor frown because they they don’t know what they’re talking about. I actually have one of my doctors who faxes information to my other doctor because they aren’t getting it through the system. And this is archaic, to say the least, and it has to be incredibly frustrating for the employees of these medical practices, and not just us, the patients, there’s also scheduling overwhelm, right?

How do you coordinate your labs, scans, follow ups, treatments, so they don’t overlap, or you don’t end up in three different waiting rooms in one week? And that’s actually something I’m facing this week. I just got back from a trip, and I think I have three doctor’s appointments scheduled this week, and they’re all over the place and the time, and it’s like, there’s no concept of you know what might work best for me is we’re doing all this stuff through my chart, and I’m like, no, this isn’t a good time for me. I get frustrated that my chart has some communication tools there, but nowhere in there when I’m requesting appointments, can I put in times that don’t work for me or times that do work for me? Right? I want to, I want an appointment on a Monday, right?

Emotional toll. Honestly, every new appointment is another story you have to tell, another set of eyes looking at your chart, another round of exploring your rare disease from scratch that could get really draining. I had covid, Lord, help me, maybe two months ago now, maybe not quite that far ago. I’ve still got the long covid cough, which is really frustrating. But when I went in about the long covid cough, that would not go away. I end up with a practitioner who has no idea about my lymphoma. So that’s fine. Everyone learns they don’t know everything.

I can live with that it’s just the time that it takes for me, because then I have to explain the situation to a new provider. That new provider in doing all of the right things, goes in and does the checking themselves about, what is this disease? What is this illness? What is this Mycosis Fungoides, that I have?

And then they have to look into the medication that I’m on, and then they have to do the research. You know, can I provide you? My situation was, can I provide you prednisone? Because that’s the typical course when the cough has reached this point, and no, I know prednisone is not something that I would do well with is one of my doctors and I had discussed earlier, prednisone was sort of one of those things that, if my life depended on it, take it, but if not, I need to find another way around it. So it’s in that takes time. So that’s another 20 minutes in a doctor’s office, you know, when you’ve already got a lot of things going on.

Now, there are some strategies that help. And here are some ways I’ve tried, or I’ve seen others try to, kind of do what they can to keep the chaos under control, right?

So becme your own recodkeeper is a top one. Know where everything is. Keep copies of everything. lab resus, scans reports, doctor notes, even if it’s jt in MyChart. Know where it is. If you’re not a MyChart person, make a binder, print the stuff out, have it or have a digital folder. And honestly I would say a binder is probably more helpful because you can walk into your doctor’s office with it printed out and they can flip through it and see all the things without having to find it in MyChart. I know I’ve spent a lot of time in some of my doctors’ offices as they’re going back through trying to look at the information. So that’s somet that can be really helful.

Also keep a medication master list. Every med, every dosage, and the prescribing doctor for each. And bring that to every appointment. It saves a lot of time, reduces mistakes, and kind of prevents awkward silence when you can’t rember the exact miligrams.

I think of some of those, videos I see on social media of one of the it’s a nurse and I can’t think of his name, a funny fellow, but he does short little video skits about what people called their medicaitons when you know he’s treating them prepping him for the doctor to come in, and he’s having to guess from what we call it, versus what the actual name is. It’s really kind of funny, and it can make you see how challenging that can be for medical practitioner and making sure that they get everything right.

And I did have one instant recently where one of my medications is the only place in the world that produces it has a backlog, and there’s none of this medication available until sometime in 2026 and they’re giving vague dates on that. The switching from, I take it from a vial, I have a vial and a syringe and a needle, and I take a certain amount of that vial. And the discussion about, could we switch me to a pen, because there might be more of the pen medication available.

And that’s when I learned that just because it’s the same medication and just because it’s in the same form, by the form, I mean a liquid, it doesn’t mean that the concentration of medication in the liquid is the same.

So in my case, I had a one milliliter vial of medication that had 180 micrograms in that one milliliter vial, and so I would take half of that one milliliter vial each week, so I would get 90 micrograms of medication. Well, in looking at the pen option, the pen had half the amount of liquid, as the vial. So instead of one milliliter, was half a milliliter, but it still had 180 my micrograms of medication in it, which is too much for me to take in a dose I need to take 90.

So I hadn’t ever thought it’s a liquid. It’s the same thing. It would be the same thing, and it’s not so those are why it’s really important to have the information accurate and handy for your doctors. Because that’s that’s a big deal. In my case, it would have been twice the dose if I had taken the pen as opposed to the vial.

Now, some hospitals, or if you’re at a cancer center, offer nurse navigators or care coordinators. I’m not under a kind of treatment where that’s an option for me, but some places will have that, especially if you’re working with a team that treats your rare disease or chronic illness. So if you can get one, get one, they are lifesavers. They actually help bridge the communication between all the professional medical individuals that you are seeing, and they keep everyone focused and on the same page. It’s huge, obviously. If that’s not available, sometimes your primary care physician can serve as a hub for all the information. I just haven’t found that to be particularly effective for me.

There are also other things that you can do if you’re trying to, you know, make sure everything’s right. And that’s really I’ve said this before. Advocate out loud. Don’t be afraid to say, can you send this note to my other doctor? My other doctor needs to be kept apprised of what’s happening, or I need you to copy my care team on these results. It may feel pushy at first, but you’re protecting yourself, and that’s really important. You need to advocate for yourself.

And no surprise here, managing multiple doctors isn’t just about the logistics of managing multiple doctors, it’s about how it makes us feel. Because let’s face it, when you got a chronic or rare disease, there’s a whole lot of emotion involved.

I mean, sometimes I feel invisible, like each doctor sees a symptom, but not the person. Sometimes I feel like a translator. I’m trying to put one doctor’s medical language as I heard it into words another doctor will understand. And sometimes, honestly, I feel tired, like why do I have to be the one holding all the strings together?

And sometimes I get really angry because I am absolutely sick and tired of having to do this. It is when I say tired, it’s exhausting, it’s frustrating, it’s demoralizing. It can you feel like you’re complaining or whining all the time when you’re just trying to get something right and get it fixed and understand it and make your body work as well as it can with the tools that you have available.

However, we know our bodies best. I’ve learned patterns in my labs before anyone else. I’ve spotted medication interactions because I was paying attention. And I’ve learned that while it’s not fair that I have to manage this, it also gives me some control in a situation where control is scarce.

And I chuckle to think a little bit about it, it was years ago. I went to see an ENT ear, nose, throat doctor, right? Because I had an ear infection. And I went into the doctor, and this is probably, you know, 14 years ago. And he said, You know, so what are you here for? And I said, Well, I have, you know both of my ears are infected. And he said, no, both of your ears hurt. You have no way to know if they’re infected. And it really pissed me off. I’ll be very direct here. And I said, I’ve lived with this body a hell of a lot longer than you’ve seen it, and I know for a fact that I have two ear infections because I know exactly what they feel like. Aand he harrumphed, and he looked in my ears, and he said, you have two ear infections. Well, no kidding, I knew that, right?

I haven’t figured it out. I haven’t figured out how to manage multiple doctors perfectly. I found tools that help. I keep trying. I’ve found ways to make sure my care doesn’t fall through the cracks, and most importantly, I’ve learned that advocating for myself isn’t optional. It might tick me off, but I need to do it to survive and to survive well.

And if you’re listening and juggling your own team of doctors or someone you care for love is doing the same thing. There are a lot of us out here in the same experience. If you found strategies at work, I would love to hear them, because just as I share my mess here, your insights might be the thing that can help someone else.

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.