How Neurodivergence Shapes Chronic Pain And Medical Visits

Fifteen minutes can decide whether you get help or get brushed off, and that reality hits even harder when your symptoms span multiple systems. We sit down with Dr. Sarah Cohen Solomon, a board-certified pediatrician who specializes in hypermobile Ehlers-Danlos syndrome, hypermobility spectrum disorders, POTS, MCAS, and dysautonomia, and who also knows chronic pain from the inside as a patient. Together, we talk about why endometriosis and connective tissue disorders so often get missed, why patients leave appointments feeling dismissed, and how we can start changing that story earlier, especially for kids and teens.

We get practical about walking into a medical visit with a plan: how to prioritize what matters most, how to share a symptom list without setting off alarm bells, and how to protect your own boundaries when fear and time pressure make it hard to speak. We also dig into the “bendy brain” connection, including how neurodivergence like ADHD or autism can shape communication, sensory sensitivity, and even the pain experience, and what trauma-informed care can look like in a real exam room.

School support is a major theme too. We break down 504 plans, what accommodations can look like for chronic pain, hypermobility, fatigue, and dysautonomia symptoms, and why you can often start the process based on function and symptoms rather than waiting years for a formal diagnosis. We wrap with a grounded conversation about pain management: reframing pain without minimizing it, medication options that may be considered with your clinician, and why individualized movement matters even when you are starting very slowly.

Subscribe, share this with someone who feels overlooked, and leave a review if these conversations help. What question do you want us to ask Dr. Cohen Solomon next?

Transcript

Why Part Two Matters

SPEAKER_00 0:00

If part one made you feel seen, part two is where things start making sense. We're connecting the dots between neurodivergence and EDS, unpacking why so many kids are misunderstood and what's really happening inside medical appointments when patients leave feeling dismissed. We talk about what true support looks like in schools, in care teams, and at home, and dive into pain, how to understand it, how to manage it, and the tools that are actually helping. But more than anything, this is about what needs to change and what becomes possible when lived experience meets medicine. If you've been searching for answers or feeling overlooked, then this is just what you're looking for. So stick around. Welcome to Indobattery, where I share my journey with endometriosis and chronic illness while learning and growing along the way. This podcast is not a substitute for medical advice, but a supportive space to provide community and valuable information so you never have to face this journey alone. We embrace a range of perspectives that may not always align with our own, believing that open dialogue helps us grow and gain new tools. Join me as I share stories of strength, resilience, and hope. From personal experiences to expert insights. I'm your host, Alana, and this is Indobattery. Charging our lives when Indometriosis trains us. Welcome back to Indobattery. Grab your cup of coffee or your cup of tea and join me at the table. Today I am joined by my guest, Dr. Sarah Cohen Solomon, a board-certified pediatrician and specialist in hypermobile ELERS Downlow syndrome and related conditions, including POTS, MCAS, and dysautonomia. But what makes her perspective especially powerful is that she's not just a physician, she's also a patient. After years of navigating chronic pain, misdiagnoses, and medical gaslighting herself, Dr. Cohen Solomon now combines clinical expertise with lived experience to deliver truly whole person care. Her work is reshaping how we understand and treat complex, often overlooked conditions, especially in kids who are too often dismissed. Please help me in welcoming Dr. Sarah Cohen Solomon to the table. Part one was just a brief warm-up, but part two is where it gets good. In case you forgot, this is where we left off and where we're going. As a patient, I sit here and I'm thinking, I wish someone would have, given my symptoms, taken a whole you know, assessment of head-to-toe, which is hard to do in a 15-minute appointment the way that our system is built currently, right? Like you have 15 minutes as a doctor to like really get to the to the crux of what's going on. Impossible. Absolutely one or two symptoms, right? And so that's what makes it really hard, I think, for things like endometriosis and EDS or HEDS, because you're not given the time needed to really fully assess the whole system, right? We are given a silo of a system as opposed to the entire system. And so I think that's what's really challenging, but there are some key things that we can be asking that can maybe differentiate what direction we go. As a patient, how should we walk in when we have concerns of both endometriosis or EDS? What are some main questions that we need to ask when we walk in that door? 15 minutes. I know, right?

SPEAKER_02 3:37

Well, that's really hard. So I think I think the actual number one thing to bear in mind is you have 15 minutes. Now, if it's a new physician, depending on the department, it may be 30 or 60 minutes. It's a new appointment, it's not usually 15 minutes, thank goodness. But you can still feel tremendously pressure for time. So depending on what specialist you're going to, that's going to adjust how you address the concerns. So if you're in a gynecologist's office for pelvic pain specifically, then lead with that. So, you know, you go in. What I always recommend is having your questions written down because being in front of the doctor is scary. I am clearly a very scary person, but nevertheless, if you're carrying in all of the history and the trauma, whoever is in front of you is gonna be scary. Always am frightened when I'm in a new doctor's office. Even if it's a colleague that I know of and know I can trust, I go in and have to calm myself down. And I'm not shy in saying that for that reason, because I think people need to hear it. This is real. Anywho, prioritize what questions are relevant to that physician. Don't go to the gynecologist and start asking about your knee. That's not gonna help. It is okay to have a list of all the symptoms. I actually genuinely recommend having ChatGBT help to make it into uh a easy to digest format. Just make sure you click like not to keep your data in ChatGBT. Don't let that happen. But it can be really helpful in making it a one-pager so it's not too overwhelming for the physician. This is important, this next part. Do not hand a big long list of symptoms to your physician and expect them to be cool with that. If you want to hand them a list of symptoms so that they have it, let them know that you are and please make this true. You cannot expect them to fix everything in one appointment, even me, and I'm set up for it. But if you hand them a list of symptoms that they can skim and you can say, this is just so you can quickly skim it because I know our time is limited, then they will take that with understanding that you know that their time is limited and you are not asking them to solve everything on the list. Okay. But I do recommend prioritizing by how much it's affecting quality of life or how worried it is making you, for example. And then they can keep that in the chart, but like again, you gotta go in with words that doesn't make it sound like you are expecting too much of that damn 15 minutes. It's not their fault. It's not. Um, now how we behave is 100% up to us. If someone is behaving inappropriately, that is a choice by the human in front of you. Okay. The 15 minutes, not their fault. So starting with that prioritizing, I also recommend writing down um what what you've already tried that has or hasn't worked because that gives a lot of data. And then for yourself, what you're comfortable saying yes or no to, because in that chair, it's again very scary. And you can accidentally say yes to things that you're actually not comfortable with, especially since no so many of my patients are neurodivergent as well. There can be a communication gap where if you're on the spot like that, the language goes out the window. I've seen it happen, I've had it happen, it's uncomfortable. So if you have a certain sense in advance, I will not do X because Y. Write it down for yourself. And you don't have to hand everything to the physician, but then you have it. Then you have it.

SPEAKER_00 6:42

Right.

SPEAKER_02 6:43

So I would start there. Now, if you're going to a new primary care physician, for example, again, they're very short on time too, but you might be there to forge a bond for the future. So again, you're not gonna get everything solved in that first appointment where you're establishing care. You will almost never get anything solved in a first appointment when you're establishing care. They are getting a full history and getting things started. So you as the patient need to know that first and foremost. But then secondarily, again, you're gonna have that list of priorities. Do not exceed three priorities. It will never happen. You can have a list for yourself. It's just priorities, priorities. So again, I focus on what is affecting your quality of life most, because that's how we're tuned in as physicians to focus on that. That gets us most scared and urgent, if you will. So if you're establishing, you can say something like, I am here to have someone help me in a long-term capacity. I know we're not gonna solve everything today. Take that burden of fear right off the physician by saying that I know we're not gonna solve everything today. I would like to establish care so that I have someone helping me out because I have a lot going on. I'm worried about X, Y, Z. It's affecting my quality of life. I'd like to figure out how to work together to make that better. And I'll probably need, I think I expect to need some referrals if that's not within your wheelhouse, but I'd like, yeah, that's what I'm that's what I'm looking for.

Neurodivergence And Hypermobility Connection

SPEAKER_00 8:00

But those conversations are nuanced and hard. Something you mentioned, and I really want to touch on this, is the neurodivergent aspect of this because I had no idea that I was a neurodivergent for a very, very long time. It actually came out of the way. How do you like my collection of Rubik's Cubes? Right. Anyways, carry on. It came after my endometriosis diagnosis, which I there's also research coming out that's talking about the the delay in diagnosis to either a hypermobility spectrum disorder or endometriosis, like one usually begets another. Now, that's probably a generalization, but there's a prevalence of that maybe. I had no idea that I was neurodivergent for a very long time, but I always felt crazy. And that's one of the things that I noticed in myself. Is there a prevalence of people that have EDS or HEDS with neurodivergent? Absolutely.

SPEAKER_02 8:59

Yes. So the the more the more we look into it, the more we see that there is some form of sorry about the pun connection. I've seen, gosh, I gotta double check the numbers. I've I've seen numbers that are like 40 to 50% of people with HEDS and HSD have some form of neurodivergent brain that is significantly higher than the general population. But also that people who have both a neurodivergent diagnosis and an HSD or HEDS diagnosis have a significantly higher degree of disruption from their physical or somatic symptoms. So it's like two to three times more problematic for those individuals. There's there's a there's a in both directions relationship. Someone with H EDS or HSD is more affected if they have ASD, and someone who has ASD is more affected if they have HEDS and HSD. And I really hope that I'm representing that data correctly. A friend and colleague, Jessica Eccles, is the bendy brain, and I adore her. Her research is phenomenal. I encourage anybody just to look at that. I always have to read the paper three times because it's so detailed. But everything that she's putting out is just so helpful in understanding this. And it's been very interesting for me because the patients who come to me historically are more significantly affected than average, I think, because otherwise they wouldn't. I was so the clinic that I was in previously is an individual pay clinic. It does not take insurance up front. And so if you're someone coming to us, you're coming because you are suffering. Very, very few people come to us initially who have not had a difficult path, just the way it is. And so I do think that I have a higher proportion of people who are neurodivergent, but I was not expecting that when I first started. That data didn't exist yet four years ago. And so, but I did start seeing like there's a remarkable number of people who really need questions done differently. Okay. And I was one of one of my least favorite parts of medical training for myself. Now, to be clear, I do not have a neurodivergent diagnosis. I do have significant suspicions. The more I learn, the more suspicious I become. But nevertheless, medical training is very formulaic. And there's an expectation of, I mentioned before, that we ask questions a certain way, patients are supposed to come in and say it this way, da da da da. Um, that is not how my brain works. And so I was frequently criticized, feedback, uh, for allowing the conversation to go where it went, and that I should have a strict script so that I didn't forget things and, you know, efficiency and da-da-da-da. Um, and I gotta tell you, when I allow the patient to function the way their brain is functioning, I get so much better information.

SPEAKER_00 11:37

Yeah.

SPEAKER_02 11:38

If I stop them every few seconds to make sure that my questions are asked and answered exactly the way I wrote them down in advance because someone else told me to do it that way, I almost never like how that conversation goes. And there there are some instances where someone sits down and I can tell that this conversation is simply going to be scattered. And that is totally okay. Because I can I can record that and then I can make sense of it later, um, you know, in terms of writing the note and making it beautiful.

SPEAKER_00 12:03

Right.

Trauma Informed Exams That Get Results

SPEAKER_02 12:04

I have a very high standard for my notes. But it is never going to work for some brains to insist that it's done a certain way. Never. So we have to be respectful of that, is the point, and understand what we're working with. And you're never gonna get a good exam or a good history if you have not made an environment in which people are comfortable either. So I always have a collection of Rubik's cubes in my office. So the cubes actually belong to my husband, but we had an we had overflow. And so he was like, Do you want these? It sounds like your patients would like them. Um and I said, Yes, yes, I would. And my patients love them. So it's very important that that you create a warm and welcoming for every brain situation. Also, by the way, in terms of a physical exam, if you have made your patient uncomfortable and now you're trying to assess their joint hypermobility for this diagnosis, I want everyone listening to think through how well it does or doesn't work if someone is uncomfortable. And that might be cold, that might be frightened, that might be pain when they are touched. And I cannot tell you, and this is absolutely heartbreaking, I cannot tell you how many patients will say to me that I am the first physician to ask before I touch them.

SPEAKER_00 13:14

Yeah, I believe it.

SPEAKER_02 13:16

I believe that. And by the way, that doesn't mean you ask, they're gonna say no, you're not gonna get your physical exam. But by the way, if a teenager says no, I am gonna respect that. I am going to figure out a way around that because there might be trauma we haven't discussed yet. So, and and that's different at every age. There are things that are important that, you know, I can't let a three-year-old who can't, you know, doesn't want their ears checked to not get their ears checked. Context matters, obviously, or if if there's an emergency situation. So, you know, take that, take that appropriately. But when it comes to a teenager on my, you know, on my schedule who has been frightened by physicians before and and may have other trauma that they're carrying, the first thing I do in a physical exam with them is say, all right, how can we do this so that you are comfortable? Are you ready? Is this okay? Do you want me to let you know what I'm gonna do first so that you are aware and familiar? And at every stage, most of the time, I'm I'm gonna say, all right, we're gonna do this next, we're gonna do that next. You know, and a lot of the time I'm demonstrating on myself so that there is an anticipation and an awareness. But it is so heartbreaking because teenagers.

SPEAKER_00 14:22

And we all want that, right? We all want the power to say yes or no in our care and the way that people touch us or the way that we are approached, right? I also think it's huge for those of us who feel pain at a more heightened sensibility, yes, that we are aware of what's going to happen. And it also helps us organize and differentiate between what's real and what's not sometimes. Like I really feel like that's hard for me as someone who has been in that position, and I didn't put these pieces together until recently, honestly. But like I realized that I was so much more heightened in my pain and sensitivity when people were coming right at me and I was already in this like fight flight freeze mode, you know? Like I'm I'm heightened to all of that. So I was having a-cause this is not gonna get me a good exam. No, no, and and that's why I'm like, I really appreciate those soft, gentle touches and warnings because it helped my brain organize okay, we're gonna do this. I'm going to, you know. And I want to be very clear because that is a real phenomenon.

SPEAKER_02 15:36

Very strongly with people who have neurodivergent, I'll call them tendencies, but but certainly in in anybody who has experienced trauma or pain, etc. So what you're describing is a very important tool that any physician can use very simply. This is what I'm going to do. Are you ready? Right. Yeah. That took me half a second. Yeah. 100%. Yeah. But what you're what you're describing for that organization, that anticipation, like it takes the barrier of, oh God, down. That's important. And we know that. That the the pain pain in pathology and pain psychology knows that us, like that is a real aspect in heightening the experience of pain. And you're right, it's gonna give me bad data for my exam. So uh one of the things that I'll often do, for example, so Lyn Linda Bluestein mentioned this on a podcast of hers that she will usually, and I often, but not always, uh, will have the patient do the physical maneuvers themselves with me supervising and I'm like walking them through so I know it's in the right orientation and things like that. But if they're doing it on themselves, one, they're not gonna resist themselves as strongly as they might resist me. So I'm gonna get those pinkies way further if they're doing it themselves. And like, yeah, we're supposed to do it with moderate pressure or whatever. But also I promise you that my husband, who is not at all hypermobile, he can press on himself as far as he wants. It's not going there. So, what does moderate pressure really like add to the conversation, you know? But if if for whatever reason I have to be doing the touching, one of the things I'll often have them do is I'll say, put your hand on top of mine. Because you can't tickle yourself. Put your hand on top of mine. And now you are part of the process of where the exam is happening. What you are experiencing is is part of your own processing as opposed to it coming at you. That took me no time. Put your hand on mine.

SPEAKER_00 17:18

I think everyone needs this, not just in a pediatric clinic. Why can't we just be nice to each other?

SPEAKER_02 17:24

And I'm just like, But also that will take less time than causing someone stress and having to stop.

SPEAKER_00 17:31

Like, like, I'm not gonna grow out of my neurodivergence. I'm sorry. Like, I know how to manage it better now because of how however like there are moments where you need to feel safe in an environment that sometimes you don't feel safe in.

SPEAKER_02 17:48

Absolutely.

SPEAKER_00 17:49

Absolutely. It's little things that can help a patient do that, but when you're working with developing minds, the developing frontal cortex, you have to be even more mindful of this. And I think as parents, like this is helping me identify areas that I can really help support my kids. Yeah. And also as a parent, talk to a provider about maybe some expectations in a good way, and in an and not in like a you know, like defensive way, but say, hey, we really appreciate when X, Y, and Z is done like this. It just helps her or helps in. Yeah.

School Support And 504 Basics

SPEAKER_02 18:26

Yeah. Absolutely. Not always, but but usually if if I see on the history that someone has an ASD, an autism spectrum disorder diagnosis. And I think a lot of people are just saying, just call it autism. So whatever. Phrases aside, if someone is coming in with that historical diagnosis, I will almost always say, How do you want this conversation to go? What's going to work for you? A lot of the time, I am told and happy to talk more to the parent up front so that they can get used to what my style is, instead of insisting that you're 15, your parent shouldn't be talking for you. Because this is, again, I'm very scary. I'm very, very scary. But literally, truly, new new environments like that are deeply terrifying. And and new processing is hard. So you also need to know that you are safe in my office to stim, to, you know, have your fidget toy, to do whatever it is that helps to calm your nervous system. Half the time I've got a cube myself. So it's it's very, very I can't tell you how often I will see a patient come in knowing that they're supposed to sort of sit quietly, culturally, act a certain way or whatever, and they can't get the words out until they realize that this is a place where I'm not gonna judge them. I'm not gonna stop them. By all means, pick a cube for the day. And uh, and then once they are allowing their body to do what it needs to do to sort of, I think of it as a pop-off valve of stress and and twitchiness and whatever, then they can start telling me their their own details, but not until they're comfortable, not until they've got that part engaged. And again, that takes no effort from me. None. Zero. Right.

SPEAKER_00 19:54

You know, we talk about the support in the doctor's office and how to approach it there. But I think something that many of us as parents and, you know, people that have walked through this that we struggle with is how do we help our kids when they are hypermobile and they need help and support in school? And this applies to those with endometriosis, hypermobility spectrum disorders of any range. And especially for those that are on the autism spectrum, ADHD or or whatever the case is, like, how do we support them in their growing and learning environment? What are some practical tools that we can, as parents and teachers or educators, do for these students? I love this subject.

SPEAKER_02 20:37

It's so important. So we're gonna begin. So, first and foremost, I think one of the main things to recognize is that the process of obtaining accommodations can actually be so helpful for learning how and when to uh uh to voice your own needs and and uh and advocate for yourself through the process of obtaining accommodations. Uh because the the goal and the experience is often that you then learn that you're allowed to take up space. You're allowed to have your individual needs met. Now, oftentimes, unfortunately, because resources are scarce and there's a lot of misunderstanding, too frequently people end up having to fight for their accommodations. And that's that's a that's the bad lesson. But then you learn to be able to do it because you might need to be able to do it in the future. So it's still a good skill to have. But one of the things that if if you all learn one thing for me today, accommodations, getting an accommodation in a public school setting, you do not need to have a formal diagnosis of anything in order to qualify for an accommodation. So if we're talking about a 504 plan specifically, this is these are plans that have to do with addressing medical uh issues or symptoms that arise uh that are chronic. So it has to, it's not like a broken leg that's gonna go away. This is something expected to hang around, um, which is, by the way, distinct from an IEP plan that has to do with adjusting. Adjusting educational goals and outcomes based on what an individual might need. And there is absolutely overlap between the two, which confuses everybody. But the 504 plan is usually where my, you know, purview is. Because we're talking about things that affect mobility, getting up and back to class, classrooms being difficult on the physical functioning of your body, cold air in the classroom, hot air in the classroom, allergies in the classroom, that all is under the umbrella of a 504 plan. But also so is extended test time, which is what we hear about more. But the most important point I absolutely must make is that if you have chronic symptoms that are disrupting an element of daily functionality, you are entitled to a 504 plan or at least getting evaluated for a 504 plan. You do not need a formal diagnosis. You need symptoms. And unfortunately, a lot of schools, I think with the best of intentions, I hope, but a lot of the time that understanding is missed. And so schools insist on having a physician who has finalized the diagnosis before they're willing to give a full evaluation for a 504 plan. That is not how the law works. I am not a legal expert, so I should be careful how I say that, but that I know. And so what people need to understand is that if your child is struggling, and I'd love it if accommodations were in place before a child struggles, that is a long-term goal. But if you're seeing that your child is struggling because of physical symptoms or even emotional symptoms, whatever it is, you can and should have an evaluation for whether accommodations are appropriate and what those might be. Now, you can look online, I'll I'll be able to post them on my own website shortly, but you can look online for uh uh 504 plan like templates.

SPEAKER_00 23:43

Okay.

SPEAKER_02 23:43

And you know, step-by-step instructions on how to get one, what to ask the school for. But basically, if you go into the school with a letter that says, I have these concerns about these symptoms that my child is experiencing, you don't need a diagnosis. You just send them that letter, you get it signed and dated, and they are required by law to evaluate. Now, it might not land the way you want it to land, but that's how you start the process. And it is so important to know that and so important to be able to get those resources moving and grooving. I can't emphasize it enough.

SPEAKER_00 24:14

Yeah. What are some of those accommodations that maybe we should consider for our kids?

SPEAKER_02 24:20

So it's again, person by person, what I like to call my starter pack usually has more to do with the physical aspect of things. So, for example, most of my kids I'll give um extended time between classes so that they're not in trouble if they're late or you know, they might have the option to leave five minutes early or arrive five minutes late, so that they don't have to go bolting through a crowded hallway, classrooms over here or over there that can be very wearing on the body over time. Access to an elevator for the same reason. Um, and it's not like you have to use these all the time. Most of the time, I'm saying this should be in your back pocket if you're having a hard day, for example. Let's see, sometimes I can get classrooms moved if we do things in advance. So instead of the classroom, you know, way up on all the stairs over there, you have classrooms that are set up down here. Depends on the situation, obviously. Extended test time is usually not that hard to get, especially if it's combined with other conditions as well. It's sometimes counterproductive, but that's that can be a conversation for another day. So extended test time, the option to use things like I'll show you splints in class, for example, that might help with writing more comfortably. So if you put, you know, an appropriate splint on in class, it might look like you're fiddling with things. But if you have permission to pause and rest your fingers, take a break, take a snack, things like that. Oftentimes I'll get pushback by by you know the uh teachers and and administrators because they they look at it as taking away from classroom time. I look at it as building scaffolding so that we actually can put back in more classroom time.

SPEAKER_01 25:52

Right.

SPEAKER_02 25:52

Because if I I have a kid who's pushing too hard in the first, say, half of the school day and then they crash because they pushed and pushed and pushed, versus if I put into play things like, like I said, you don't have to rush between classes, you can take a little break in the middle of the day. Things like that. Now we're storing energy up for later so that we are not crashing every single day. We're not creating a downward cycle of not being able to attend school at all, for example. That's a big issue with my kids. Um, so starting, starting there, starting there. Anything that we can do to offset. And and my biggest, my biggest thing is always we gotta remember what the priority is. Is the priority teaching the kid that you have to be identical to everybody else to get through your day or else? Or is the priority getting the most out of your education? That's a great way to put that. And then I usually sit there on the phone and wait for someone to answer the question. Right. Right. What's our what's our goal? Yeah. Yeah. Yeah, exactly. And again, credit to schools, just to be clear, I I I think that that the highest thing that a person can do is teach children, um, and that the school system is is direly in need of of better funding and and uh you know better just assistance. So in the same way that I can't 100% blame colleagues when when their system is against them, I also can't hundred percent blame schools. However, you do have a moral and ethical and probably legal obligation to know what the laws are so that you're not leaving kids without assistance inappropriately.

SPEAKER_00 27:27

Yeah.

SPEAKER_02 27:28

And I will shout that loudly.

SPEAKER_00 27:30

I think and it's true because like I even think of like PE classes. There are some things that I growing up was forced to do that I physically it like hurt me to do, and not in a good way, not because I was out of shape, which it was always in reality. You're not having muscle strain after a good workout, different experience. Yeah, yeah. Had I known, I think I probably would have been saved a lot of pain and trauma to my joints and and and body. But then I'm like thinking of it, even in from my daughter's perspective, she has a brand new school, brand new this year. They just built it, she's the first class in it, and guess what? They don't have lockers. I weighed her backpack. I weighed her backpack, it was 20 pounds.

SPEAKER_02 28:11

Why would you wear why would you create a new school that has no lockers? I can't even I mean, I think it's a safety concern, honestly, in this day and age of it but good grief. But now it gives everyone clear lockers, clear plastic lockers, boom, problem solved.

SPEAKER_00 28:26

There we go. And you know, and as so I'm I'm gonna give this a little little bit away because you know I don't disclose a lot of my kids health things, but she wouldn't mind if I said this. So she has the starting of scoliosis. And so these are the accommodations that as someone who has scoliosis are the backpack. The backpack.

SPEAKER_02 28:45

And she's like, my back really hurts. I have this weird issue right now where when I was growing up, I hate saying that, I'm getting old here, that we had textbooks, and now the problem in the backpack is the darn laptops. So I can't have them leave the laptop in each individual classroom. My accommodation was that I had a second set of a book in the classroom, so I didn't have to hold the AP bio book in my back every day. And sometimes you still have the textbooks in the classroom, and I can make that accommodation happen like that. But I can't I can't figure out a way to get the laptop to not be heavy.

SPEAKER_00 29:20

It's incredible. And it's even beyond that, like you know, so one of the things that I always prepare my kids, because I have two girls, is I always prepare period packs for them so that if something were to come up, if they were to start their cycle or whatever the case is, we've always practiced this as someone who that's where I that's where I stay in space, is as I practice those types of things. But then I'm like, you have to have two packs of markers, three packs of this, you know, notebooks. And so I've always, you know, that's one of the things that I've gone to the school with is like, can we accommodate her being five minutes late after lunch to go to get the second half of the day materials?

SPEAKER_02 30:05

A completely reasonable request, absolutely. Yeah.

SPEAKER_00 30:08

Yeah. But I'm just it just blows my mind that you know we have to make those accommodations.

SPEAKER_02 30:14

Yeah, it it's it's I mean, again, empathy in this regard. It's it's wild that we have come gone so far on the pendulum towards safety, safety, safety, safety, safety that we forget about genuine medical and and health needs. So that conversation is is longer for another day. But one of one of the things that I've started recommending actually to um uh to people who might be getting their period unexpectedly is thank goodness there is this trend of period panties.

unknown 30:43

Yes.

SPEAKER_02 30:44

Just just wear those. Just wear those all the time. They're they are apparently now cute and comfortable. So, you know, if if you just wear those, you're not gonna get the surprises that that we all had to be traumatized by as children. Um, you know, surprise, white pants. Um why do we need that as a milestone in life, really? Right. So to that I say if you're wearing something regularly that is both comfortable and practical, you can decrease the need for carrying extra supplies, for example. Not everyone is gonna be comfortable, especially with neurodivergence, you might not be comfortable with either the fabric itself or the experience of the fabric absorbing. Everyone's gonna be a little different on those, but there are also a million different items and products available to make that lived experience better as well. So we've got different options. Yeah.

SPEAKER_00 31:32

Yeah. And one of the things that I am working on is with my kids having AIDS. So, like, I am not sponsored by this at all. If they want to, great, but the jelly bend is a really good option. And I personally use them to help strengthen or like to help support my core more instead of being so tired all the time. And having that for my daughter is another thing that I've worked with having in the nurse's office. So she doesn't have to carry it, but she can go and use it if she needs to. That type of thing. I love that. Those types of modalities are really helpful for her. Um, and I don't know if I'm doing it right all the time, but it's just what you know, the things that I've learned, I'm trying to impart. Right, right.

SPEAKER_02 32:13

As you should, as you should. And also, usually that's like my job, you know, to figure out what's necessary. And it shouldn't have to be your job, but it sounds like you're doing great. Well, thank you. But nevertheless, I so a lot of my patients have been very happy with products like Jelly Bend. I haven't tried that one specifically, but I am almost always wearing um compression socks and compression shorts. Um, one of these days I'll actually buy myself compression like leggings so that it's one product, but I just haven't gotten around to it. One of one of my weird tricks, if anybody finds this useful, is that I have pretty significant sacroiliac instability. So the joint in like in my tailbone area and it causes significant lower back pain. But now I mostly couldn't care less because I'm almost 40 and I just I'm just over this phase of my life. But sometimes I want to feel cute in the way that I choose and don't want my what's called an SI belt on the outside of my clothes. It's not the look I'm going for.

unknown 33:04

Right.

SPEAKER_02 33:04

So my hack, if you will, is that since I'm almost always wearing those compression swords underneath, I layer, I've got my I've got my undergarments, I've got my compression shorts, then I put the SI belt over the compression shorts, and then I put my pants on. Yeah. It's a lot. And because you folks are not living through the era of skinny jeans when you are a teenager or college student, which should never happen again, um, the current trend is much more forgiving and reasonable to human figures. And so one could fairly easily wear, because even if you don't care about what it looks like, it's it's okay to not want people to question what you're wearing all the time. People are inappropriate that way. So if you're 17 and wearing a thing that is medical, people ask. And it's not fair that you should have that extra burden. So I have no problem helping people hide stuff because you just don't want the questions, but I also don't want to give the message that you should be or have to, you know, feel that way. I just could not care less what I'm wearing. But wearing it under that, much more comfortable.

unknown 34:04

Yeah.

SPEAKER_02 34:04

Not easy to go pee. Gotta be honest with that. It's a lot to take off. That's a problem if you're having all the water all day long. So I can't solve everything. I'm so sorry.

SPEAKER_01 34:13

But it's so true.

Real Life Plans For Busy Brains

SPEAKER_02 34:14

Yeah, it's so true. I'm right there with you. I feel like we are in a good space together. But like one of the things that I love most is actually having like a brainstorming session with whoever it is sitting with me, because again, in medicine, we're often taught like, here's your gold standard, it's all or nothing. And that just doesn't work with life. And my goal is if I can get you to do something that is better than doing nothing, and I want you to be able to level with me about what options exist. And I'll still, like, you know, in in um in eczema care, the first thing we learn as as pediatric residents is like, what type of moisturizer is going to work best? And we have this whole spectrum of like oil is not as good as lotion, is not as good as cream, is not as good as ointment, and we all memorize it. And for whatever reason, in most things in medicine, we don't have that degree, like like degrees of you know, hierarchy defined. And everything else just feels like either you're doing the right thing that the doctor told you to do or nothing. And it's like, well, that's silly. You're gonna get a lot of bad care that way. So, so for me, what I like to do is try to figure out what the barriers are for you as an individual and say, all right, well, here's what's going on in your life right now. That thing that I'd love you to do, not gonna happen. It's not gonna happen. Let's start with what seems more reasonable. If I want a busy teenager with ADHD to take a medication three times a day, not gonna happen. And you know what else is not gonna happen? Drinking water all day long is not gonna happen. It's not. Unless you have one of those water bottles that lights up and alerts your phone every 10 minutes if you haven't had a sip, which by the way, highly recommend, it's not gonna happen.

SPEAKER_00 35:47

Right.

SPEAKER_02 35:48

Now, you're also then never gonna feel adequately better with pots if you don't do the water. But I'm much more aggressive getting someone started on a medication that's maybe once or twice a day if I know they're gonna struggle with their water intake. And that sounds backwards because I still want the water intake, but I'm also not gonna sit there and say, until you drink the water, I'm not gonna medicate you.

unknown 36:08

Right.

SPEAKER_02 36:09

I want you to function. I want you to feel better. I want you to feel like a person who can do their stuff at school and thrive as best as you can, get to meet your goals. And I gotta tell you, if you feel a little better overall, you are a lot more likely to drink the darn water because it's not like, oh God, one more thing that I have to do. It's a whole different experience. Yes. So my approach is flavorful. Yeah.

Pain Management Without Shame

SPEAKER_00 36:32

I love that because I think there's so many times that as patients, we leave the doctor's office with the to-do list and it's so overwhelming, especially if you have ADHD and you are just like barely functioning half the time. And if you're like me and you're in surgical menopause, it's even more fun, let me tell you. So there's a biestrogen. Let's try to function without you, yeah. Right. Yeah. Like be half a human. But these are the things that like I think are so imperative to just quality of life. Like, let's treat people the way that we would want to be treated with quality of life, you know? And so that's key. For these students, though, like, how do you and this might be not the best question, but for those that are in pain often, I was always taking insides. It did a number on my kidneys and everything else. Are there ways that you can you approach pain with students? Yes, yes, okay.

SPEAKER_02 37:24

So, first of all, we gotta not demonize it. Pain is present to tell you that something is in your body that shouldn't be happening that way, but pain signals can get stuck in the on position. There's a lot of discussion around that subject as its own pathology, and that falls under like um central sensitization pain syndromes. And while I don't like to overdiagnose those because I'm not a pain specialist, it is informational to understand how much that type of system can ramp up what your current experience is. And we need to make sure that we're kind of letting that off. Again, I mentioned earlier having that additional layered burden. I'm always describing it as like if you have a tangled chain of necklaces, you can't just gank. It's not gonna happen. You gotta go slowly over here, slowly over there, and eventually you'll get them all out. So I never want someone leaving my office thinking, boom, we're gonna fix it all today. It's inappropriate for me to say. But if if we've gotten a good overview and we can say, okay, this is clearly where, you know, what needs to happen, we'll get a lot further. So in terms of pain itself, we gotta not demonize it. Mindfulness meditation is about that often, by the way. It gets sort of a bad rap in in chronic illnesses and chronic pain because it's like, oh, just think it away. No. What I'm asking, if I'm asking you to do mindfulness meditation, which by the way, I absolutely do, what I'm asking is for you to relearn how to interpret pain.

SPEAKER_00 38:43

Yeah.

SPEAKER_02 38:44

If you know that the experience of pain is giving you information about your body, but pain is not bad, right? Different, it's just a different processing. You remove the power of the emotional distress that goes with it. Because we know that distress makes it worse. And that's not diminishing the experience of it, that's validating the experience of it. But I'm very careful, I try to be very careful with my words in that regard. So that's that's step number one. Um it's an ongoing step.

SPEAKER_00 39:11

Right.

SPEAKER_02 39:11

I gotta assess if the medication you've been on is appropriate. I don't necessarily do that the first day I've met someone. I kind of want to get the lay of the land first. Um, but pain, pain medicine for teenagers is often sort of overlooked that you should just be able to push through, and I think that's unkind. Yeah. For reasons I can't explain, almost none of my patients get adequate relief from a non-steroidal anti-inflammatory. So that includes your ibuprofen and your relief. Sometimes they'll get a little more relief with something that's a little longer acting like maloxicam. I'm always okay trying that first because it's pretty low risk for like a decent period of time. I wouldn't have someone on it forever, but it's it's a good, solid starting place. And if it does well, it gives me information. If it does poorly, it gives me information. So I check in, I don't let someone just linger on something for more than like four to six weeks. I check in frequently. Do not be stingy with things like gabapentin, lyrica. I there's hit or miss with the SSRI department. So things that are traditionally used as antidepressants absolutely have benefit for the brain chemistry to make pain better. But I do find this is anecdotal, so you know, data absolutely needs to be collected on this. I find that those can be helped when there's significant distress making the pain significantly worse. I don't find that they're super helpful with long-term straight-up pain management. I do see a fair amount of side effects. And with SNRIs, there's a possible risk, depending on who you ask, of worsening dysautonomia. That is a very, very general statement. So please be specific with your physician. Please do not stop an SNRI for that concern right away. If anyone is listening, do not stop an antidepressant immediately. Those need tapering and physician oversight. Thank you very much. Anyways, um making that clear. Yeah. But um, but the oftentimes I need them sort of in a combination. So you gotta you gotta be creative. Low dose naltrexone has gotten very popular. I think it's a phenomenal medication.

SPEAKER_00 41:06

Love it.

SPEAKER_02 41:07

Obviously, everyone's a little bit different, but I will use that down to around age 12. I think that's sort of the lowest of anyone I've ever heard of using it. Okay. Data very, very limited, but uh, but we're talking very low doses, by the way. So generally speaking, I feel pretty okay trying that. Everyone's everyone's different, but now we can't leave out the physical aspect. If someone never does anything physical with their body, I want to be super clear. These conditions are not caused by deconditioning, but they are absolutely worsened by dis deconditioning.

unknown 41:40

Yeah.

SPEAKER_02 41:41

You cannot decondition yourself into a connective tissue disorder. That is not how it works. And again, repeat that for anyone who needs me to repeat it. But I do need to figure out how to help someone move in a way that supports and helps their body feel better. That might be ridiculously slow by standard comparisons. Your pain levels will not improve if you are not able to do some movement. They won't. Highly individualized, very careful, very slow most of the time. But we talk about it. We talk about the lived experience of the pain. And I think honestly, one of the things that's most powerful about being in my office is that they know that they're talking to someone who knows what it's like.

unknown 42:21

Yeah.

SPEAKER_02 42:22

And I don't want to call that a magic power or anything like that. And I don't want to say that a physician who hasn't had the lived experience can't do a phenomenal job because they can. I have, I have colleagues without the lived experience that I think the world of. Um, but at the same time, if they're worried about can I still be, you know, can I still meet my goal? Can I still meet my dream if I'm having this much trouble going to school? And they come in and ask me about that, then the first thing I'm gonna tell them is that I missed almost my entire year of senior, you know, senior year of high school. I was out for almost all of it. Um now, you know, with current criteria, we would have diagnosed severe myalgic encephalomyelitis slash chronic fatigue syndrome, but that diagnosis didn't exist yet. So I was instead told that I was depressed and grieving my parent too strongly, inappropriately, and I should just suck it up. So I I have feelings about that. But nevertheless, the the lived experience of it is very significant because then they can say, oh my, wait a minute, you're a doctor. Whoa! So it opens up the entire conversation of not just if I can meet the goals for for that individual. It's how? How are we gonna meet those goals? It's not gonna look the same as somebody sitting next to you, almost almost definitely won't look identical. And it might not be the conveyor belt start to finish. Medical school took me six years, which I did not appreciate, but I do appreciate the outcome. And quite frankly, if I had to do it again, I would. I absolutely I would learn from it and do it easier, but but I would. But but the more you know in advance, because part of why it took me six years, I didn't understand that I had options for pausing my education while I was there. So instead I hit my Struggle point, struggle to the point that I needed to repeat things and take time off, but not by choice.

unknown 44:07

Right.

SPEAKER_02 44:08

So the more we talk about what you can do in advance, the more you can anticipate. And that gives you so much power in not just your own accommodations, but in your own bodily awareness and you know, taking your time to do it your way so that you can. So that when something gets in your way, because we're all humans, people are very fond right now of pointing out that that having a disability is one of the only is only minority group that anybody, anybody can join at any time. Like that. And that people are like, oh yeah, and that is a threat. I don't mean it that way, but I mean people need to understand that these are skills that you can develop to anticipate what your needs might be and that that might change. And forgive the pun, but they need to be flexible. So it's not about this is the rigid thing that I'm gonna do if and when. It's about how can I create a structure? How can I create a system so I'm not playing whack-a-mole all the time? I am returning to some degree of structure so that I can regroup and make it okay. Yeah. And that was really hard to learn. And if I can help even one person have an easier time doing that, oh my God, I'm more than happy to. More than happy to.

SPEAKER_00 45:14

I love that I get to do that. Well, it's like so refreshing as like a patient to hear this, you know. Where were you when I was a child? Although I'm older than I think we were probably children around the same time. So I'm sorry I couldn't help you. Dang. But it's just like it's so refreshing to hear that. This is like the time where as a patient and as a provider, you we both have like very shared experiences in in some circumstances, but mine, I definitely had like the endometriosis. Like, this is my jam, this is where I live in the space I'm in. Do you have any burning questions that you want to ask me?

SPEAKER_02 45:54

And I've and I've talked to a few parents about this, I've talked to my own mother about this, but but I think one of the most valuable things I as a physician can ask you, what do you what would you want your pediatrician to ask you and and how to how to have these conversations? What do you want?

SPEAKER_00 46:11

I think one of the things that we as people with endometriosis, because it it happens so early on, right? Like we don't even have to have our menstrual cycle to have symptoms of endometriosis. Wild, yeah. And it's crazy. And so I wish someone when I was younger would have sat down with me and said, are there things that you're really struggling with? Because I guarantee they would have picked up with the fatigue being number one. But I also was just told I was lazy.

SPEAKER_02 46:43

That is that is the there's something like I hope I'm not making this number up, but something like 90% of people who are diagnosed with ADHD, especially in adulthood, have had that experience. I uh that is the the such an unkindness to humans. Carry on what we're saying.

SPEAKER_00 46:59

Yeah, yeah. Well, and like so now I look at my daughter and and she has not been asked this, but I will tell you, her provider did point out one of the things she said that I appreciated for the neurodivergent aspect of it or ADHD, she asked me, How did conferences go? And I said, Well, she's doing great, she's you know, doing well in her classes, she just daydreams. Tell me more. So it's not my favorite question, tell me more.

SPEAKER_02 47:24

I know. And everyone's like, Oh, okay. And then there we are, you know, tell me more.

SPEAKER_00 47:29

Tell me more. And so, like, she'd go through it. And then the one thing that I would say was missing from that conversation for both me and my daughter back before is that they didn't say, Are you having a hard time sleeping or are you feeling really tired? Or that's my favorite question. Yeah, yeah. Like, I wish that someone would have said that because it would have picked up on a lot more. However, I will say that there endometriosis and hypermobility, all of that have corresponding symptoms, right? So, how do you differentiate the two? Who knows? But there are different things like are you having pelvic pain or and kids not gonna be able to tell you that are there things on your body that hurt?

SPEAKER_02 48:13

Mm-hmm. Mm-hmm. Like age appropriate questions are really key.

SPEAKER_00 48:18

Yeah, it's like I wish someone, and sometimes I wish that they would say, Can you draw me a map of how your body feels? That's there a map. Yeah. Like, if you had to map out, you know, what you feel in your body, could you tell could you map it out and have a picture? Because I can tell you, like, as someone who's a visual learner, it's helpful for me to have that visual aid of like, you know, during, you know, when I'm playing at recess, this area hurts. Because they don't know how to explain that. That's great. That's really smart. Yeah. Yeah. So that would be like the only thing that I never really had. And and I wish that we did that more, is how we learn differently and how we I think it would make things better because we don't know how to explain our symptoms, but but we can tell you the area by circling it. Yeah. Sometimes.

SPEAKER_02 49:13

No, I love that. And that's like, you know, what I was saying before. Like I think one of the most important skills that I have unlearned is not being too rigid. There's the pun again, with templated conversations, because exactly what you just said, tell me more. That's not on my template. Right. Yeah. But so often it's like, you know what? I had I had a patient recently who came in with what they phrased as severe fatigue. I was like, all right, we can do this. And they had suspicions about EDS and about dysautonomia and things like that, totally appropriate. But that that ended up taking a back seat because they started explaining how much sleep they were getting and that it would be sort of three days of just waking up to eat and eat and go to the bathroom and then back to sleep. They could not stay awake despite having stimulants for the previously diagnosed ADHD. And I was like, What happens after the three days? I was like, oh, I kind of cycle. And then I'm like awake and I'm I'm okay. And I'm like, all right, I gotta get all the things done. And I was like, all right, there's my tell me more question. They had undiagnosed bipolar disorder. Like, genuinely. And I'm very cautious about going in a psychiatric direction with my patients because that has been overdone a lot of the time. And in this case, it had been missed because it was type two. It was, it was hypomania, not true mania. So it was just that they were getting all the things done, but they didn't need sleep for five days, and then they'd flip back into the sleep schedule. And very, very reasonably, it had been going in the direction of, you know, the teenager doesn't want to go to school. They're just just all the things that I won't voice aloud because they're so mean. And I'm sitting there going, Oh, we have to have a different conversation than you planned. So we we we did, and it went really, really, really, really well. And also they have ETS. So, you know, it was, it was, it was complicated, but but that just that moment of, you know, you've said that in a way that doesn't seem to fit, tell me more, huge.

SPEAKER_00 51:02

Right, right. Well, and even so so one of the things I was looking back at when I was talking to my mom um a while back was the fact that I had taken mitol all the time. And no one ever questioned it. No one ever asked. Right. No, because I always had like severe headaches and like during my periods, it was I was in so much pain, you know. And so no one ever said, Is there are you uh are you taking like are there supplements that you're taking? And we they ask that on intake, but a lot of times we don't even think of that as being like a supplement or like what medications are you taking because it's not prescribed, right? Oh gosh, yes.

SPEAKER_02 51:42

I always forget what I'm taking that isn't prescribed for myself.

SPEAKER_00 51:45

Right, right. So, like, boy, are there things that are helping you like with yeah, are you taking or you know, are what are some things that help bring you comfort? Oh, good phrase. Maybe that's a way to phrase that. Yeah. Like, are you in pain that and what are ways that help bring you comfort? So if someone's mentioning that they're taking mitol or ibuprofen on sp you know, specific times, then that's a really good indicator that there's something more nefarious going on, right? And so, like, no one ever picked that up for me, and no one ever picked up the fact that the chiropractor was constantly adjusting my hips and my back, but it wasn't getting any better, kept coming back out.

SPEAKER_02 52:24

Yeah.

SPEAKER_00 52:24

And so, and it was definitely worse during my cycle, which I didn't put the correlation there until you know, not in the last five years, that a lot of my utero sacral ligament pain was endo because it's where it was, you know. So, like no one ever said that, or the cyclical migraines, you know, those are things that no one ever talked about with me that I wish they would have. Because I think, but let's be honest, they weren't talking about endometriosis back then either. True, true, yeah. You know what I mean? They weren't talking about EDS, they weren't, they didn't even know what that was half the time. And I'm not even sure if I talked to my doctor, they would have known what endometriosis was.

Curiosity Over Certainty In Medicine

SPEAKER_02 53:01

Yeah, you know, and that's it wasn't believed as a as a pathology until the 1960s or something like that. You know, they didn't even find it until then. One of my favorite things to say is that at any point in the history of medicine, we have always thought that we were at the pinnacle of what we know. But we have always thought that. So, what does that tell us about what else, you know, we're gonna find out? We also split open an atom and found out that there's stuff inside of an atom fairly recently in the history of the world. So it's so important to maintain that intellectual curiosity and humility about what we don't know. And you can still maintain confidence in what we do know and what we think works, and then you have to incorporate changes and research, and that's the whole point. But that's also the fun part, that's the exciting, interesting part. I don't want to be a robot, it's boring, right?

SPEAKER_00 53:52

Exactly. And that's what you know. I've always said like I think part of the problem with our system is that there's a lack of curiosity or time for curiosity. Yes, and that's not some that's not me trying to dismiss or diss the healthcare providers. That is me saying, it's okay to maintain your curiosity, your intellectual curiosity, and not be okay with what you already know, but but be curious about the things that you're unsure of. And not being so, you know, I don't want to say egotistical, because I don't really love that word, but there is that that sense of it, right? Like you don't know everything, no one does. The body is magnificent, the world we live in is magnificent, it it's ever changing, right? It's evolving into something different. And so if we don't approach our knowledge and understanding that way, we're missing a lot. And that's where I feel like a lot of patients feel very frustrated, you know, is that we don't feel like they're curious enough to help us. It's that if they don't know it, you've got to figure it out for yourself. It's not that method.

SPEAKER_02 55:02

First of all, I couldn't, I couldn't agree more. I I, you know, in again, in fairness to my colleagues, this is an enormous systemic problem. And so anyone who wants to be curious like that is up against so much. Just time, bureaucracy, paperwork. It's it's a huge, huge problem. My one of my least favorite times in in medical school was being told actually to ask fewer questions. And I just could not fathom how that was supposed to be helpful. Now, in part, it was just I needed to learn sort of what the timing of those things were done best. There was always sort of what's called the hidden curriculum, and it that just did not agree with me. So back to our neurodivergent conversation. Now I have suspicions about why. But in any case, unofficially, but I remember the jolt of the cultural there was a there was like a cultural shock of asking too many questions was a signal to most of the educators that you weren't doing your own, you know, at-home learning independently and that you were sort of using them as a crutch, which I thought was bananas because I wanted to learn from the expert in front of me how they thought about the problem. I wasn't asking to not do my own work, I was asking for engagement and learning, like, why would I not want to learn from the expert with experience in front of me? And that was that was because I I grew up in a in a in just a cultural environment in which questions were extremely important. And that was that was how you indicated that you were invested and interested. And to not ask questions was rude. Like to not ask questions was like, no. Um, so so that was a shocking shift for me academically and educationally. It did not work well for my brain. It still doesn't work well for my brain. But to me, the value of being near someone who has more experience is being able to ask them about that experience. But if somebody is unwilling to change with the science, that's really very off-putting. Now, I will say again, in fairness, that the way the way we're trained is very, very strange. It's it's we we put a value in words on being a lifelong learner. That phrase comes up all of the time. We put value on what's called evidence-based medicine. And that that is not a bad thing, by the way, in case anyone is listening. Evidence-based medicine is still a good idea. The problem is, so, and what evidence-based medicine means is that I'm not just making stuff up. Evidence-based medicine means we use the data available, consensus, guidelines, you know, uh, research to say, yes, this is not only fundamentally sound, but the research shows that this is not harmful, that this is most helpful, that this, you know, reduces bad outcomes, whatever it is. That's all fine and well. But if you have a population that hasn't been adequately studied, you don't have evidence. Right. What do you do then? And that doesn't mean that they don't get treatment. It means I'm off on an adventure trying to figure it out with very, very limited information. I got very, very lucky that in my training hospital for residency, we had an entire team dedicated to treating patients with no roadmap. And the physicians who are on that team remain some of my most important mentors and people I admire most. And the way they talked about what they did was a willingness to say, well, there's one case report in the world. Let's add another one, you know, and just willingness to understand the depth of what we do know and what we don't know, and then to say that the life in front of me, the person in front of me, is important enough and that we've had the conversation. We're not going in blind and telling the parents it'll be fine and we know what we're doing. No, we're having frank conversations that this is an unknown, uncharted territory, but we are going to do the best we can because your child matters. Yes. Yes. But we get scared because if we're doing things off book, there's no parachute there. And we live in a culture that gets sued a lot, and that is deeply terrifying, and that's fair. I don't want anyone to listen to this and think we should all be off doing our own thing. No, that is absolutely not what I'm saying. Right. But we still have an obligation morally to treat the human in front of you who is suffering.

SPEAKER_00 59:04

Yeah. Even if we don't have evidence. Right. Well, and that's what's scary, right? We want to be sure of things, as and that's just our human nature. There's nothing wrong with that. Yeah. We want to know the outcomes. We want to know that we aren't taking such a massive risk in our care and in our health. Right. And so and that's where the conversation happens. Right. Yeah. However, are you any better not being curious about it?

unknown 59:30

No.

SPEAKER_00 59:31

Right. Like that's the thing. Like you would want people to be curious so that you can be better, even if it's on charted territory. And that's where I think a lot of us, even if the doctor doesn't have the answer, we would rather them be honest with us than give us an answer that doesn't really fit the mold. Right. In a way that, like, you know, like it could be this, I'm not really sure. And as opposed to saying, you know what, you are bipolar, so we're gonna give you this medication. And it doesn't really align with what they're going through, but it's the only thing that they can grapple with. Right. Because that does happen a lot, you know. And so I think I think it's okay to not know the answer, but to be curious enough to continue learning what it could be. And I think patients are way more okay with that than not getting an answer at all.

SPEAKER_02 1:00:20

They already know that things aren't lining up in the textbooks, you know, where they're I'm not telling them anything they don't know. Um and most of the time, almost all the time, if I say, Hey, I don't know, let's figure it out together, they're like, Oh my God, thank you so much for being honest. I'm so and and then we're a team. We're a team figuring it out together, you know. And you can have actually the, you know, the people, the people that I have always admired most were the people who were able to say, I'm at the limit of what I know. I have to go learn more or find someone who knows more or some combination. And to me, that is true confidence and and and you know, awareness of your own knowledge. But there were physicians that taught me in medical school that you have to never kind of, you know, you have to save face all the time because if your patient thinks you don't know, then they're not gonna believe in you or trust you or whatever. And I'm like, but I don't know. And they shouldn't think that I know because that's lying or something. Like it was a it was very discordant for me. And I understand now looking back, what they were trying to say. What they were trying to say is that you can't go in there looking like this. You can't, and for anyone just listening, you can't go in looking all nervous. Like, don't fine, don't do that. That's not a that's not a great plan. But I am very upfront with my patients when we are in uncharted territory. I am very clear when there is, you know, two case reports, and they are so grateful that I found the case reports.

SPEAKER_00 1:01:42

Right.

SPEAKER_02 1:01:42

They're already scared. You're not you're not scaring them more by being honest with what isn't out there. Most of the time, they've already learned what's out there because my patients don't have the foundation underneath them, you know, in terms of a team. They're doing their own reading. They have read the case reports before I have.

SPEAKER_00 1:02:02

100%. And I think that's like the doctor should meet the curiosity of the patient's curiosity. Because I think that's something that we, as patients, we are curious about our health, especially if it's been a long journey. If you find someone that is not as curious as you are, it may not be a good fit for you. Right. Yeah.

When Complex Patients Get Turned Away

SPEAKER_02 1:02:20

And by the way, like for my colleagues, it's okay to be you. Like, I don't, don't be something you're not. That's part of my message as well. But, you know, a a a weird difficult situation for complex patients that I'm seeing now is that they are often turned away without a landing spot. So on the one hand, it is very appropriate and very, you know, it's it's morally sound to say, I don't have the skills for this and I don't have the resources, and there's no way that I can get enough of those things together to treat you properly. Um, and I would be doing harm if I tried. That is not an immoral thing for a physician or other clinician to say. But at the same time, if the patient then doesn't have somewhere else to be, uh-oh, you know, right, that is a problem. And so many like genetics departments are saying, oh, but we don't see H EDS. And then people with other types of EDS are inappropriately getting lumped in with that and getting denied care as well, even though they have a distinct genetic mutation that that is treated distinctly and appropriately. Genetic centers and and complex medicine centers are turning these patients away. Yeah, how are we supposed to get the evidence?

SPEAKER_00 1:03:30

Right. Right. I've been turned away for care because I have hypermobility on my chart. And I actually asked them not to put the EDS diagnosis on there, just hypermobility, because for some reason, EDS scares a lot of providers and it could be completely unrelated. And they are like, I don't, I don't want to take you on as a patient.

What Better Care Could Look Like

SPEAKER_02 1:03:48

And you know, the funny thing is that, and I think I would feel this way even if I didn't have it myself. Like medical education is changing a lot right now, where in the last 50, 100 years, we've been very siloed. You know, the heart does not talk to the lungs, does not talk to the gut, does not talk to the whatever. So, you know, that's how we learn. And now there's a big shift in making it much more uh, I want to use the word interactive, like between the systems. So they're not, they're not in separate buckets that don't talk to each other anymore. We're seeing how the communication actually happens. And conditions like GDS, lupus, my brain is forgetting anything else as an example right now, but you know, but there are so many examples now that the research is catching up of how very systemic conditions can affect so many different things. And those conditions are being used as examples longitudinally, which is to say, throughout the medical school curriculum, you know, you start first year and end having now gone through it all system by system, so you can see how much it interacts with everything else. And that is a very different way of looking at education and looking at bodies in the first place. And I think that shift is so powerful and so helpful for, you know, not just the learning now, but the long-term how we think about teaching and how we think about medicine. This is this is important. This is huge and it's interesting. These conditions are interesting. So oh my gosh.

SPEAKER_00 1:05:07

I feel like we could go on for hours, hours. Same. This has been like, I'm like, I'm invested. I'm invested right now in this. Like, because I love what I get to talk about. I really do. I know it's so fun. And I love having these conversations because it opens up room for people to start exploring more. And I think this is true for both the patient and the provider. Like, I really feel like if we can start the conversation together, it's going to lead to much greater outcomes for so many people. And that's why I do love doing podcasts like this, is because I get to learn. And I know that if I'm learning, I hope other people are learning as well. Because I am just a very simple person who is very curious. And so this affects so many of us and it and it affects our whole lives. And that's why we have to talk about it more. And that's why I'm so grateful for you to continue. You, with your curiosity and your mind and your experience, both lived and clinical, that you're willing to open up and just sit in this space and open up that dialogue. Thank you. So that we can understand this more. It's so impactful.

SPEAKER_02 1:06:14

Well, I really consider myself very, very lucky to have platforms like these and be able to share these experiences. I think if um, you know, if if we all just said I don't want to be the one to deal with it, then we make no progress. And and I don't like leaving other people to suffer. I was I was raised not to do that. You know? So and I've been asked, and and and this gets kind of dark, but I've been asked several times by friends going through very, very dark periods related to their chronic illness, you know, how I cope with things like the pain and the ongoing symptoms. And the the very simple truth of it is that if I have the opportunity to use what I have lived through and experienced to make it easier for the next person who has that going on, then it's worth it to me.

Questions, Next Steps, And Goodbye

SPEAKER_00 1:06:58

Yeah, absolutely. I think this conversation just highlights something that we talk about often in the endometriosis community. Our bodies are just deeply interconnected and conditions rarely exist in isolation. There's more understanding and overlap in between connective tissue disorders like EDS and conditions like endometriosis, like we're learning all of this, that we can better support patients earlier and more effectively. Like that's key. So I thank you in being part of that and taking the time to sit down with me and and break this down a little bit more. I would love to have you on again at some point. So if anyone has more questions for Dr. Cohen Solomon, please, please, please let us know. This is, I think this is where we need to start in the adolescence, because that's how we create change further on. Because a lot of us are like, well, that our stories have already happened. It's still happening. But still happening. Yeah, you can make it better earlier on.

SPEAKER_02 1:07:56

Yeah. What what a different world it would be if we started earlier for these people. So I'm thrilled. I'd love to, I'd love to come on again. This was this was fun. This is probably too much fun.

unknown 1:08:06

Probably too much fun.

SPEAKER_00 1:08:07

I like having fun. Same. So, yes. Well, thank you so much. And until next time, everyone, continue advocating for you and for others.