Navigating Healthcare as a Neurodivergent, Chronically Ill Woman

Weird and Well Nancy Taylor Podcast Interview === [00:00:00] On today's episode, I'm speaking with Dr. Nancy Taylor about medical gas lighting, patient advocacy, and navigating the healthcare system when you're experiencing burnout and chronic illness. As a neurodivergent woman. Dr. Nancy Taylor is a pharmacist, independent patient advocate, and the founder of Taylor made senior advocacy and consulting LLC with more than 20 years of experience. She helps older adults, solo ages, and family decision makers gain clarity, confidence, and control in healthcare before small issues become crisis. Elizabeth: So Nancy, thank you for being here with me and I'd love to get started by you sharing how you got into what you do and, and what it is exactly about what you do that you love the most. That lights you up. Dr. Nancy Taylor: The story's twofold, [00:01:00] Elizabeth, It, the, the light has always there. I grew up in a small town where we owned the corner drug store and my dad was the pharmacist. And, I went to work early. You know that child slave labor, when you own the business, everybody pitches in. And I, I started, as the janitor when I was 12, and so had plenty of time to observe my dad working with his patients and. I used to see him, I used to see how he did that when people would come in, you know, it was the classic pharmacies, so they gave him the prescription over the counter. Of course he stood higher than everybody 'cause that's, that's the way things were built. And he would talk with them and he, you know, would ask some questions and then, tell 'em when to come back for their script. And [00:02:00] they would come back, would always step down from the pharmacy platform, come out in front and talk with the patient. And, you know, he would always put a hand on their shoulder or some they might need a hug, some they didn't. And I would see them be different from when they came in. You know, so sometimes I'd hear a laugh, sometimes I see them walk out, know, a little, prouder, you know, a little more confident. And I finally got up the courage to ask my dad, what is it that you're doing that, you know, they, they leave differently than when they come in. And he told me, he says, Nancy, I want you to remember this, that we are not just dispensing [00:03:00] medications, we're dispensing hope. And your empathy, compassion and sense of humor are just as much medication as pills and creams. And I have always remembered that. And so that has always been that burning ember that's in there. So when I was older, um, working in the community pharmacy, retail pharmacy, and loved my patients. I always talked with my patients. I always knew what was going on with their families. I always asked the questions, I wanna know how the recitals turned out, or, you know, where they go into the games. After years of learning who my patients are, and then when I started to realize that they're, they're not getting access to me like they used to. I had patients say to me [00:04:00] in the grocery store or the gas station, oh, I saw you the other day, and I thought about stopping to say hi, but you look so busy. I just didn't want to interrupt you. That was like a punch to the gut because these are the people I want to be working with. My older patients were, I was seeing more heaviness to them that Elizabeth: When Dr. Nancy Taylor: I got to talk with them, whether it was that two minutes of counseling or I was able to get away, you know, like there was more and more weight them about what was happening in their healthcare lives. And I thought lot of it was who is helping our older adult population get through this system? Why do things have to be so hard for them, you know? Elizabeth: I thought, okay.[00:05:00] Dr. Nancy Taylor: when I leave here. I'm going to move into advocacy where I can be the person that gives them more time. I can be the person that listens. I can be the person that will step up and be a voice for them that they're not invisible, so that they're not just pushed off or not listened to. And when the time came and I like, I, I can't do this anymore. I can't be corporate. I need to give my time to these people. that's when I made the change in 21 and. Created my own advocacy business, using my knowledge as a pharmacist and navigating our healthcare system to step into [00:06:00] being that person that our older adult population needed to be seen, to be heard, and to help them navigate. Elizabeth: Yeah. Yeah, that's beautiful. And obviously you specialize in specifically the older adult population and there is some overlap there with, you know, the, the people that I work with and, and my community of neurodivergent women, especially those who experience chronic illness, we have some who are in that, older population. But something I find interesting is I think a lot of the things that your clientele are experiencing are mirrored in my population, even though they're only in their like 30 to 50 range. A lot of them spend a lot of time within the medical realm and navigating that and feeling a lot of the [00:07:00] same things that you just described about being pushed off or being invisible or not being taken seriously. And I think that the value in, in your experience and your expertise can be really beneficial in supporting not just the aging population, but anyone who is in that space, especially those who feel like they don't know where to begin or they feel completely overwhelmed or alone in that, that space. One of the things that we talk about in the chronic illness world to help people to advocate for themselves, to help them, kind of keep things straight because it can be hard to remember all of the things when you, you finally get in front of a medical professional is about putting together like a folder to bring with you of your, key medical kind of things of symptoms you've been having because it can be very easy to be so consumed with what you're experiencing in the moment that you can't even mentally access what you were [00:08:00] experiencing yesterday or a week ago. And so many of the questions from medical professionals are, how long have you been feeling this? How would you rate this? What are like the top one to three things that you would want them to keep in that folder and bring with them to each of their appointments? Dr. Nancy Taylor: That's an excellent question. One that I is an at a glance of their medical journey. So in the at a glance, I help clients create that and where they have, current conditions, current medications, past medical history, just, and these are all just bullets. Okay? This isn't paragraphs, these are just a bullets 'cause it's at a glance. So what were their maybe past, surgeries. Um, where they, with their immunizations, conditions that [00:09:00] have maybe they were, that have disappeared, okay, they may be chronic conditions, but sometimes chronic conditions resolve. Okay? And I also believe it's very important to have a list of what you have tried, because that is a lot of a provider will look at and say, let's do this. Okay, but maybe tried that before with a different provider and what was the result? So having that in there where you can easily go to it and say, okay, I tried this. We did it for this long, this was the result this is why we stopped it. Because you do not want to have to run the hamster wheel again. So that's really important to have those kinds of things in there that things are, at a [00:10:00] glance. And one of the things I suggest to my clients, especially those who have difficulties in appointments, and that's whether you're neurodivergent, whether you are have the white coat syndrome and you're scared to talk, whether you think you're gonna run out of time, I say, okay, you're a part of this appointment too, so write your agenda what you want to see happen in your appointment, and you send that to your provider ahead of time. So that they know what you want to get out of the appointment too, so they know what to speak to in the timeframe that they have, that they know that you are bringing these things in your folder and that you want to get as much out of this as they do. Elizabeth: I think that's easier now with things like MyChart, where [00:11:00] you're able to communicate in advance with at least your primary care doctor, if not specialists and stuff. But yeah, I think that's, that's really great. Something that I talk about with my clients who have a lot of appointments like that is mental and physical preparation for the appointment. Especially if you have some kind of medical trauma history or medical gaslighting. And then the other thing that a lot of people in my community experience and don't often realize they're experiencing is a fawn response, which I think is probably similar to what you were calling the white coat syndrome or, or what did you call it? Dr. Nancy Taylor: It is white coat Elizabeth: White coat syndrome. Um, and it's where. You essentially go into a nervous system survival response, and that response is to be agreeable and and to be like, uh. Okay. And accepting of whatever it is and deferring essentially to whatever is they're [00:12:00] saying and not really processing necessarily, or not really being able to recognize, like maybe part of you is like, wait, something here doesn't feel right, but you're not able to actually connect with it and advocate for yourself and recognize, oh, this is what I'm, I'm thinking and feeling in the moment. It's not until later when you've processed, and a lot of people in my community also have delayed processing. So where you have time to process and then you're like, oh, wait a second. They said this thing. And I said, yes, but I didn't actually mean, yes. What would you, what would you say to people who experience that, either in terms of preparing or in terms of what they can do once they realize that that's happened? Dr. Nancy Taylor: Yeah, absolutely. Um, in preparation, I think it's really important to have things written down. [00:13:00] Okay. You know, that's in the folder. Whether it's questions you want to ask or a process. I have this, I what I call a four step in how to speak up. So maybe it's just writing this down of it's okay to pause an interaction. Elizabeth: Yep. Dr. Nancy Taylor: It's okay to name the process you need without apologizing for Elizabeth: Yep. Ask for accommodations. Dr. Nancy Taylor: yes. And it's okay to ask a one concrete question. You know, if you look at what you want to know, what is the most important thing you want to Elizabeth: Mm-hmm. Dr. Nancy Taylor: and you're making sure that, okay, if I, if I feel this weird or I'm just going to ask the one question, it may not be Elizabeth: Simplify. Dr. Nancy Taylor: about, [00:14:00] but it's the one question I want information on and I know I can concentrate on that one. And then. that understanding. And that might be, um, me repeat this, or, or however, the one thing I always tell my, and in my classes, if you are going to the appointment by yourself, record it, voice record your appointment. Elizabeth: I like that idea. Dr. Nancy Taylor: Most providers are fine if you just say, I need to record this. I don't process as fast as this conversation is going to go. And this way I can do follow up and send in questions that I might have missed. Elizabeth: Beautiful. Dr. Nancy Taylor: Okay? So they understand what they need. And so if you're in the appointment and you are starting to get into that buildup, you're starting, your body heats [00:15:00] up, you're starting to get into that feeling. When you recognize that okay to interrupt and say, we pause for a moment? Elizabeth: And if you're not at a state, because there are different stages of awareness and a lot of the people in my community aren't able to recognize that they're in that state yet. It takes time and practice. And that's something that, I teach and talk about in my how to listen to your body mini course. But if you don't have that awareness yet. Then sometimes it's not till after that you're able to recognize, oh, I was really dysregulated in that experience. And so something else that I encourage is one, you know, plan so that you have the notes, you have the questions, you have all of that in place two. Try to make the situation as regulating as possible for you. So that could be active regulation before you go into it. It could be breath work, it could be, um, you know, some kind of movement that's allowing those things to flow through your body. It could also [00:16:00] be bringing in sensory supports, wearing your most comfortable hoodie, bringing in, you know, something that is going to allow you to feel more grounded in. In the appointment, and then also planning and knowing that you will need time after the session, both to recover from the experience and to process what happened. And so making sure that you are scheduling yourself appropriately so that you have, enough time afterwards to really sit with or come out of that dysregulated state before you're going on to, you know, whatever it is. So I don't encourage, people to schedule their appointments at lunchtime in the middle of a workday, for example, because that's not going to give them enough time to, come back into their bodies and to feel safe again before they move back into doing other things. Dr. Nancy Taylor: And I think that, you know, a proactive step where you're talking about this, this is another reason why you need to share your [00:17:00] agenda with your provider before the appointment. And you know, that I need, and the other thing too is there are different types and times of appointments and so where appointment. Might be 15 minutes and you know that you're not gonna get through everything on that. You can ask when you schedule, if you call instead of just do it online, what different appointments do you have? I need more time with my appointment. Elizabeth: Yeah. Dr. Nancy Taylor: You know? And so, and they may be able to book you a different type of appointment Elizabeth: Yeah. Dr. Nancy Taylor: where you will have more time. Elizabeth: When it comes to providers, I think we talked about this a little bit before. Not everybody has any kind of choice necessarily when it comes to providers. If you're tied to your insurance, there can be very limited choice, which we can talk about in a second. But first off, I am curious if when you have a [00:18:00] choice of providers, if there are any green or red flags that you recommend for people who are looking at providers Dr. Nancy Taylor: Absolutely. I recommend that everybody go in and read the reviews, because the patient reviews are gonna be extremely helpful. Elizabeth: can they find those patient reviews? Dr. Nancy Taylor: When you go online and you go to search providers, if you go into whatever healthcare system, let's just say it's, a, b, C, healthcare, all right? And when you go into a, b, c healthcare, you pull up the providers, you can, match those providers with what the insurance list gave you. And so, okay, these are the three providers that, that are available to me. Each provider, nowadays, it's very standard to have information about what the provider, maybe their background, education, what they specialize in, but they also have [00:19:00] reviews. And you can click into those reviews and read those because that's gonna give you a lot more information. Dr. Smith was really listened to us and that was really important to me. So and so took extra time to make sure that we covered all the basis, you know, did not feel rushed by this provider. So that's a really good way to vet providers is Elizabeth: Yeah. Dr. Nancy Taylor: at those reviews. Elizabeth: Awesome. And then along those same lines, or the flip side of that coin is when someone feels like they're kind of stuck with a specific provider and that it's not a great fit, what options do they have for getting better results with that provider? How do they navigate that? Dr. Nancy Taylor: Yeah. because [00:20:00] there's so many reasons why those things happen. one, we both bring our, our baggage sometimes to work. so it could have been an off day, or it just could have been, you know, you don't click. Um, and maybe they, you know, chances are needed. But what you can do, is you can request a different provider. And sometimes your, your front desk can help you with that. Who else sees patients like me for these types of issues? Okay. they could say, oh, well, so and so, you know, or, or that type of thing. if you don't have a choice, let's take a look at rural healthcare, and if you don't have a choice when it comes to rural healthcare, [00:21:00] maybe having a communication through either the portal. Or scheduling a communication, appointment there where you're not doing anything other than just communicating and saying, this is how I felt, this is what I thought happened. Can we discuss this so that our appointments going forward, you know, look more like as opposed to what we just had, you know, so that can be good. The other thing that can be helpful is to bring another person with you, whether it's a family member or a friend, or take a professional advocate because they're going to see things differently. And they may be able to help [00:22:00] rephrase things. Maybe you're, you're both saying the same thing. You're just not either and you're not understanding what each person's saying because of the way it's being said. But it can also be too that your friend, your family member may catch on how you are interacting and they can be like, okay, when, when we get home we need to talk about how you interacted, you know, or could be that blend. Because it's always good to have that second set of eyes, and it's always good to have an outside perspective. Elizabeth: I think it's really important when you're thinking about bringing someone with you to pick someone that you feel very safe with and that you trust someone who's not dysregulating. Sometimes the, the person that you would think to bring with you, they love you, they're supportive of you, but might not be the best person to bring into that situation. So being intentional about that. But there's also, you know, there, [00:23:00] there are some very real things that I'm going to name here in terms of, ableism and sexism that are very real things that come into how you're interacting with medical providers. And, you know, I wish I could say that wasn't the case, but it is the case. I'm gonna share a little bit of what I experienced and part of my medical journey because I know it's far from. Unique within my community. After I had been bedridden for almost two years with chronic illness, and I had spent maybe three months with my primary care provider going through different things, getting them to take me seriously, ruling out depression, all of that kind of stuff. It took three sessions before she really took me seriously. And I noticed that it was because that third session, I had a little bit more energy and I was a little bit more put together. And I'd like to say that doesn't make a difference, but it does make a [00:24:00] difference when you are too exhausted and sick to mask, that it can, it can create negative outcomes. On the flip side of that, if you're going into these situations and you're a heavy masker. It's difficult for them to see the truth of what you're experiencing because you are, you know, trained in that mask to be like, oh, downplaying things. And I, you know, it's probably fine. It took me two years of being bedridden, almost two years of being bedridden before I realized that there was something serious happening because I experienced what many neurodivergent women do, which is having my health and my physical experiences written off and downplayed my entire life. And so once I gotten to that place with my doctor after I came to one of my appointments with her, and something that helped me as well actually with getting to this point and ruling out [00:25:00] depression was I made a chart of my entire. Adult life since I was a teen and I charted out generally how my health had tracked and also separately when I was depressed and when I was not depressed and I was able to look and be like, wait a second. All these times I was depressed. It was because something shitty happened. There was a reason I was depressed, but my health has gone up and down in these ways since I was a teenager. And for me it was really funny because I didn't know how to quantify it. And so I quantified it in terms of things like at this point in my life, I was able to take a shower standing up. At this point in my life, I was able to hold a part-time job at this part in my life. I was able to feed myself. And cook food for myself and clean up after myself or not. Like functionality that I lose or gain depending on where my health is. And I charted it and I brought it in and she was able to see it clearly, and I answered questions and she's like, [00:26:00] oh, okay. This is a real and serious thing that's happening. I think it was the next appointment with her after that where she was like, have you ever heard of ccf s And I had never heard of CFS. And she was like, I think this is what's going on with you is CCF S and pots. But she couldn't diagnose me. I had to go to a specialist. I had to go to a cardiologist to get a diagnosis. And so she gave me the referral. It took another six months to get there. And in that time I did all of this research about CFS and what was out there and there was not much. But I was able to figure out some things about. How it's connected back to the nervous system. And I, you know, followed the rabbit hole and figure out all these things about, okay, here are the things that I think I need to be able to start recovering. And I was making progress, but I was still very deep in it by the time I got to my cardiologist appointment. And when I got in there, I was too exhausted and too sick to mask. [00:27:00] And I, was there with my now ex-husband and my son, but they were out in the lobby. And so I was in there alone. And the cardiologist comes in and he was very gregarious. He was very amiable. And he had asked me questions and I would answer the questions. And by the end of it, I felt like it was mostly okay, but not super helpful. But I saw some red flags that when I got the notes several months later, were very much confirmed. The first word red flag was that. I was sent there to be diagnosed with CFS and he had never heard of CFS, so that was the first problem. The next thing was when I told him that I'm pretty sure I have some form of dysautonomia, he insisted that, dysautonomia is super rare and it, you know, it's, it's not likely. And he asked me, you know, about my bathroom habits and I told him that I [00:28:00] pee a lot at that time. You know, I had, I was peeing a lot and he was like, oh, well then you can't possibly have DYS adenoma, which was quickly dismissed with a Google search after I left the office because pots, which is the most common form of dysautonomia, uh, 60% of people who have pots, have overactive bladders. He did not do any testing that I was sent there to do 'cause he didn't think I needed it. And I told him up front that I'm autistic and he asked me questions. And I told him that I'd ruled out depression with my primary care doctor. And later on in the session, there was a point where he was asking me questions that I wasn't able to process and understand. And so I asked for a very simple accommodation, which was, I need you to ask me more specific questions. And he said, oh, no, nevermind. It's okay. And moved on. When I got the notes from this session a few months later in the notes, he had put autism in quotes, and he [00:29:00] said that I appeared severely depressed. At one point I had to lay down because I could barely breathe and I was overheating two points. Two points. I had to do that. He said I, I appeared severely depressed. And then he said she's very intelligent, but has odd social mannerisms and like an entire paragraph of things that are like quintessentially autistic. So he clearly, I don't know if it's an ableism thing or a lack of knowledge anyways. Um, and then later on at the point where I had asked for more specific questions, he put the word evasive, that I was being evasive. So what I had perceived in the moment of being a not super helpful, but not harmful experience had resulted in my permanent medical record, having these notes of me being evasive and severely depressed, and things that were not accurately reflecting what I was experiencing. And [00:30:00] there were other subtle things that he did. There was definitely some ableism happening there. There was definitely some incompetence that was happening there. And when I received those notes, my response was to reach out to my primary care doctor after I cried a lot. I was very angry and upset about it, but I reached out to my primary care doctor and I was like, Hey, what can I do about this? I don't want this in my record. And I also feel like I have a duty to warn other people because I'm a fairly strong-willed person and if I, was getting steamrolled and dismissed in that way. I can't imagine how much harder it would be for other people who were chronically ill and neurodivergent to go into interactions with this person. And my primary care doctor had what I can only refer to as a fawn response. And instead focused on, well, he [00:31:00] recommended that you wear compression socks and you drink more water. So why don't we just focus on that? And I asked, where can I, where can I leave a review? It was a few years ago. I asked about that and instead of being directed to anywhere that I could leave a review, that I could let other people know, Hey, this guy is not the guy for neurodivergent and chronically ill people, at least not in this, this situation. Instead, she doubled down on, well, let's just, let's just focus on doing the, the things that he encouraged you to do and see what happens. And I was like, okay, I don't think that I can continue to trust you as my primary care provider when you are not able to help me advocate for myself in this kind of situation. And at that point in my journey, I had the privilege because I was not on any kind of medications to be able to step away from modern medicine and, and the medical [00:32:00] community and focus on healing and recovery in my own way using research and training and all of those kinds of things that, that not a lot of people are able to do. I teach all of those things to my clients now, but there are a lot of people. Within my community who don't have that luxury, who are not able to step away either because they have, ongoing medication or because they have specific chronic illnesses that they need to pursue an official diagnosis for. I'm curious what your take is on the catch 22 of masking versus not masking, disclosing your neurodivergence versus not disclosing your neurodivergence. How you see any of those interactions going with your clients in terms of when to disclose, when not to disclose, what amount of masking is likely to have the best outcome, those kinds of things. Dr. Nancy Taylor: Thank you for sharing your story on [00:33:00] that. And I can speak to what do you do, in a situation like that, but let me kind of, let me talk to the masking part. And disclosures. That is a catch 22 in the fact where there is the common barrier of the fear of being labeled difficult, um, you're dealing with a sensory overload and it becomes, especially when you have a referral and you're going from a very good relationship to an unknown relationship, what that tells me in the referral and somewhere in in the system, this is a system problem. This is not the patient [00:34:00] problem. This is a system problem where. may have good documentation with your primary care. You've got a good relationship. They understand this. They believe this, that information that they have in your file does not get to the specialist, and it isn't the patient's responsibility to regurgitate it all, yet the burden is put on the patient. So one of those types of ways to maybe kind of work around that a little bit is to have those supporting documents in your folder. The folder. You talk about those supporting documents from your primary care physician that, yes, this is what we discussed. Yes, this person, you know, is neurodivergent. These are the ways that we talk about it. And make sure you have [00:35:00] that when you're taking that folder into a specialist and say, you may not have seen this. This is how I work with my primary care physician. This is the best way for both you and me to work through an appointment. And you can set it up that way. Masking, non masking it, it comes down to, it comes down to the energy. And that is what you said yourself. I actually had more energy so therefore they thought that was better. if, if we're really trying to get to the root of the problem, masking isn't gonna help However. That is where your folder can come in because [00:36:00] documents can speak where you can't. is where the advocate comes in. They can speak where you can't. Um, this is also where recording of your appointments, your previous appointments and the recording of that current appointment very useful. And I can tell you a recording, when a provider knows that they're being recorded, you're gonna see less gaslighting, you are going to see less, enabling a fronting on that type of thing, because it's, it's no longer his word against yours. You actually have the recording. that can be extremely helpful. It doesn't have to be video, it can just be audio. So knowing that they're going to be recording also kind of sets a tone [00:37:00] for the appointment and why you're recording it. And this is where you don't have to say, I'm neurodivergent. You don't have to say I'm autistic, I'm recording this because I don't process as fast as this appointment is going to go. I am recording this because I need to make sure that I get it correct and I need to make sure that my file, my medical records, are going to reflect what was discussed in this appointment. Elizabeth: Yeah. And I think that's a really great, um Dr. Nancy Taylor: and if you need to write it as a script, it as a script Elizabeth: Yep. Dr. Nancy Taylor: folder, Elizabeth: And just read it to him. Dr. Nancy Taylor: Read it. Read it directly into your auditory recording. Elizabeth: Yep. I think that's provides, a helpful reassurance as well, because I know that, [00:38:00] that's just one example of having a medical appointment where what I experienced and what I saw and what was said to me was very different from what was in the notes. Right. And I think having that backup to be able to be like, but wait a second, this is not what was discussed. This is, we did not agree that I am depressed. Dr. Nancy Taylor: And then, and let me talk a just a second here about telehealth appointments, because we talked about rural pe, you know, people we talked about. So when you have the telehealth appointment, it's on the provider side. They can record it. You can ask, I would like to have this appointment recorded because I need to go back to it to refer back to it. And if they say, oh, well we don't normally record these. You say, okay, not normally, but do you have the capability? would like it recorded.[00:39:00] Elizabeth: Yep. Dr. Nancy Taylor: And then if they say, well, we're not gonna record it, you say, okay. I would like it documented that I asked for this to be recorded my purposes the patient. So, um, know that it's available, just don't always do it, but it can be done. Elizabeth: Yeah. Dr. Nancy Taylor: And that can be helpful too because the recording can go into your notes. You can get it into it via a portal. Um, so don't think that it's not available. Elizabeth: Yeah. Awesome. Dr. Nancy Taylor: Elizabeth, can I speak a Elizabeth: yeah, Dr. Nancy Taylor: to, um, what's available to you about your medical records Elizabeth: please, Dr. Nancy Taylor: if someone else has been in a similar situation to you, what is available to them? Elizabeth: I would love that. Dr. Nancy Taylor: Okay. Unfortunately the accuracy of your medical records, the burden of proof is on the [00:40:00] patient. And unfortunately, the only person that can change your medical records is the provider who put them in there and you're like, well then how in the world is this even gonna happen? And that is where risk management comes in. The risk management division of the healthcare system. Is your safety net in this where you can take to them if the doctor is unwilling to change your medical records, if they don't believe that what you say, sorry. You can take it to risk management and they can do a moderation where they bring people together and they talk about what needs to be changed, why you feel that way. but they can be protective. And this is where the audio recording is very useful for someone in risk management [00:41:00] to help you as the patient, but that is, that's your recourse. I have colleagues who work specifically on helping people. medical records, helping people get, jump through the hoops to see that these things get accomplished and going through whatever the process. 'cause there can be denials and then there needs to be appeals. And it is a process and it's really difficult for a neurodivergent person sum up that extra energy to do it themselves. So if you're in that position, recommend that you reach out to a professional Elizabeth: Advocate. Dr. Nancy Taylor: who can do that you Elizabeth: Yeah. Dr. Nancy Taylor: because it's important. Because that right there, that's labeling and that's gonna be with you because they're gonna look at your charts and it's untrue Elizabeth: Yeah.[00:42:00] Dr. Nancy Taylor: and I'm, I'm sorry, it falls on the, on the patient. That's another break in the system that isn't working. But there are people out there that can help you get. The right information put into your records. Elizabeth: Yeah. And that is something that I talk about with my clients. As you're coming out of burnout, as you're covering recovering from chronic illness, one of the important things is looking for places that you can simplify, that you can outsource, that you can get support for things so that you are not trying to take it all a hundred percent on yourself. And, and I think especially in this regard, that having an advocate who can help you through that system is very important. The work you do is very important. How would, somebody who is looking into that for themselves, how would they find or contact risk management about having an adjustment made to their file?[00:43:00] Dr. Nancy Taylor: So risk management is. An area of the hospital system or the, the clinic system, and they will be on their website. It is listed as risk management and so you can contact that specific division. If you need to go through the hospital administration, like you don't, like, I don't know where to call or I can't find it on the website, call the hospital administration and tell them you would like to speak to somebody in the risk management department. May you have a phone number, a direct phone number. Elizabeth: Beautiful. Okay. I think that's really helpful. I think that would've been really great for my primary care doctor to have given me when I reached out with my concerns. Um, but I think that's one of the things about, the medical system is that the people that you are talking to and interacting with, like your [00:44:00] primary care doctor are not necessarily even trained or know exactly what to do or where to direct you or, you know, the administrative side of things. That's not their job. It's not what they do. But if that's who you have the relationship with and who you're talking to, then it can be difficult to, I mean, it is a, pardon the term clusterfuck, trying to figure out who information and contact information and who is it you're actually supposed to be contacting. And there's so much executive functioning that goes into that. When you're in burnout, when you have chronic illness as a neurodivergent person, your executive functioning skills plummet and they're already something that most neurodivergent people wish they could strengthen. But when you're in that place of burnout and chronic illness, by the time you're struggling enough to be in a doctor's office or to be bringing up your concerns, you probably have extreme [00:45:00] brain fog, memory issues, struggling to like hold onto one thought for very long, fear and anxiety around phone calls. All of those kinds of things that I think can be very supported and helped through having a trusted advocate. Dr. Nancy Taylor: You are absolutely right, the advocate is the one doing all the heavy lifting. You know, they're the ones that. We'll do the step in there, the ones that will see that things get taken care of and that your applications are in, or you have to fill out a pre-form or, you know, all of those things. Your advocate is your partner in healthcare, and so that's, it's okay to rely on them. They're not there to judge you. They're not there to label you. They could care less about your masking. And the whole point [00:46:00] is you to be able to navigate healthcare to get positive outcomes, and that person is there to do that. Elizabeth: And I think it can be a really big step, even just reaching out and asking for that support. A lot of my, a lot of the people in my community, they experience hyper independence. They experience the fear of being a burden on somebody else they experience, that, that need to kind of figure it out themselves. And they also experience things like social anxiety, where even talking to or trusting or opening up to somebody else can be difficult. So taking that step in and of itself can be a huge thing, but I, I think it can be so worth it for especially those neurodivergent women who know that they're going to be spending a lot of time or are already spending a lot of time and energy in the medical system. Dr. Nancy Taylor: As an advocate, our job [00:47:00] is to guide and empower and to help our clients make the most educated and best healthcare decisions for them. Elizabeth: Mm-hmm. Dr. Nancy Taylor: We do a lot of what you're talking about, that support, we take the burden because I, your, your healthcare should not be your encompassing life. You know, like you were, you were a wife and a mother and a, contributing member of society. When, healthcare comes in and takes over your life, it takes over everything. You, your time away from your children, your, you aren't being a wife anymore, you having to take a lot of sick time or family leave. so a professional advocate steps in takes the burden for you so that your [00:48:00] time can be freed up to be in these other. There are roles that you are in. It is also the person that, yes, you're right. I, I don't have the capacity right now to even fill in this form. I'm fine that you're filling the form in with me and that you're asking me questions and you're reading it to me. that and, and I'm okay with that. I'm going to sit here with this cold pack on my forehead while we do this. Fine, fine. You know, the, the, I never do anything for my client. I do it with my client. Elizabeth: I think you're downplaying yourself even a little bit, because the reason that I stepped away from, you know, the, the modern medicine field in my own recovery was because I did. An analysis. And I knew that my nervous system health was what I needed to recover. I needed to be able [00:49:00] to, feel safe and regulated in my body. I needed to build up my capacity for experiencing a range of things without it triggering that survival mechanism. And I wasn't able to do that and also continue being in the, the medical community and continue going to appointments and doing testing and trying to get answers. If I had continued to pursue that, I would not have been able to recover the way that I was because it worked so directly against my nervous system health. It is incredibly dysregulating and stressful. Both while you're there, while you're thinking about it, while you're trying to get answers, while you're trying to plan, while you're trying to, am I supposed to fill out this paperwork? Oh, nope, that's the wrong paperwork. Oh, nope. That's the wrong department. Right? All of those kinds of things are incredibly stressful and demanding on the nervous system. And by having someone like you who is able to not only [00:50:00] be that kind of emotional support, that body doubling, but also is able to be like, this is what we're going to do and you can show up however you need to and we're gonna get it done together. And all of that removes so much burden from the nervous system in that experience. And you can't eliminate it completely. Especially if you have trauma around, you know, medical gaslighting or something like, until you heal that. At some point in the future, there's always going to be some amount of stress involved with engaging with medical community, but you are able to relieve so much of that, which then gives their nervous system a chance of being able to recover and heal, especially if they're, you know, doing some of the other things that I teach in, in my programs that allow that nervous system to recover. Having that recovery while also being insanely stressed about near constant medical [00:51:00] awareness is not compatible. Dr. Nancy Taylor: As you're talking, I'm thinking so fondly of a client I've had for years now, and. Hers came about through a brain clot. And that is what really triggered, her neurodivergence. And we went through, I mean, we're now on year four, of just, and, and where she's in a really good place right now. But we went through all of that. We, I mean, between coordinating providers, coordinating care, at results and appointments and being there with her appointments and, you know, all of this because she had to heal. You are absolutely right. so, you know, that's, it was one of it. It's a great experience for both. And I say [00:52:00] that for me personally because I find it so rewarding to be able to give someone back their life, Elizabeth: Yeah. Dr. Nancy Taylor: you know, so. Elizabeth: It's beautiful Dr. Nancy Taylor: you know, we're, you're setting everything up in the beginning. You know, let's face it, anytime someone gives you a diagnosis, which really, it's a label. Is it, is it real? You know, and it, was it quick to be diagnosed? And there's, there's so many things. I work with clients that are like, I was just told this, you know? And so we talk about that. And even if it is just to talk through that current situation, we spend the time really focusing on it. And then what are those next steps? You know? And it's all, it's all [00:53:00] learning, understanding, accepting, and what can I do? Okay, on. In a way, it's still kind of like that, but it's how do I adjust to this? are the changes that have happened and I need to. something different where do I get the extra support? 'cause I can no longer do this myself. You know? And I think that when you're looking for an advocate who can help with this, it's very important to know what their scope of practice is and they've worked with clients like this before and how can they help you specifically, are they able to look at a situation, analyze it [00:54:00] and go, yeah, this is what I see. This is what I see as your, your green light. Go. Here's what I see are the red flags. Here's what I suggest your next steps be. Elizabeth: I like that and that, that is something I recommend as well when you're looking for supports, is to look specifically for supports or professionals who have experience and are confident in working with neurodivergent, chronically ill, communities. And I recommend that across the board wherever possible because it makes an enormous difference. I could spend probably. A whole nother hour on the question of is it real when it comes to diagnosis because it's so, so complex. Diagnoses are, you know, ever kind of evolving in terms of the medical awareness of what's happening. You know, there are things that are very connected, things that people didn't use to think were connected. Even [00:55:00] things like me, CFS, where it was widely believed until about 10 years ago or so, that it was, you know, a, a mental thing that was manifesting in the body. And it's only been recently that, I mean, technically it's been like 30 or 40 years since it was proven that it wasn't. But it's only been in like the last decade that the, the medical community at large has been like, oh wait, this is a body thing, not just a, a mental thing. And there are a lot of things like that. There's also the aspect of misdiagnosis or underdiagnosis there are just so many things that go into that. Is it real? Is it right? And that's part of the reason that having somebody who is experienced and is able to navigate that is very helpful and supportive. And also looking at. What are you experiencing? What are the symptoms? How are they impacting you? How can we help you with where you are now while we look at [00:56:00] the cause and go back to that? Because, I'm very cause oriented. I'm very like, okay, let's figure out why this is happening. And a lot of neurodivergent people are, is they wanna know the why, why is this happening? And I think that that's very powerful and also not necessarily how a lot of the medical world operates. I feel like that it's more a symptom and, and based in how do we treat this rather than how do we, how do we understand what's causing this and actually fix it a lot of the times, you know? So you have this new diagnosis, yes, we're going to factor that in. And also. Let's continue to keep an open mind and let's continue to look at where you are and who you are and what you need and what we can do to support you as you move forward in your understanding, in your health, in your life. Dr. Nancy Taylor: I look for the cause too, as being the pharmacist. You know, there is such a thing called a prescribing cascade, and I know Elizabeth: Yes. Dr. Nancy Taylor: topic, but Elizabeth: Yeah. I. Dr. Nancy Taylor: I, I think it important, that we talk [00:57:00] about it in that, because. Our, our healthcare system, this is one of the, the leading causes of problems is a prescribing cascade where you're right, we treat a symptom. We don't look for the cause, we don't change medication, the original medication for whatever the condition is. We then just start Elizabeth: Treating side effects. Dr. Nancy Taylor: and Elizabeth: Yeah. Dr. Nancy Taylor: we're up to, you know, we're up to five medications we've treated side effects as opposed to going back and looking at the original Elizabeth: Yeah, Dr. Nancy Taylor: for the original condition. I preach a lot about that prescribing cascade and I do a lot of de-prescribing Elizabeth: Yep. Dr. Nancy Taylor: older adults because that's where a lot of it comes from. And by the time they get there. I, I can go into all [00:58:00] of that with medications and causes and everything, and I, I, that's not what we're here to talk about, but, Elizabeth: Maybe another day. 'cause we could totally talk for hours about, Dr. Nancy Taylor: I Elizabeth: that. Dr. Nancy Taylor: I completely understand. I am with you on, let's look at the actual root cause Elizabeth: Yeah, Dr. Nancy Taylor: and let's treat the actual root cause. not just add, because we can. Elizabeth: yeah, absolutely. And that's part of the reason that, I created the foundations course that is all about doing that. It's about specifically the nervous system. It's about recovering the nervous system's health and its capacity. And it's about treating that root cause because. Nervous system dysfunction is the root cause or major contributor to so many of the chronic illnesses that are experienced within our neurodivergent women community. I do talk, uh, just a smidgen about medications in there, but I don't go into any details about it because I don't [00:59:00] know individually what they're experiencing, what their medications are, how they interact with each other. Having an advocate who's able to go through that with them, who knows what they're looking at, and is able to be like, actually, I think we need to talk to your primary care doctor because you might not actually need to be taking these three medications. Right? Like, that's so valuable. Dr. Nancy Taylor: absolutely. That is, that is so appropriate and most advocates, most clinical advocates will do medication review. They'll look for, know, what they can get on the computer. They'll look for interactions. They'll look for, duplicates. We know what those discussions need to be with providers, in order to make sure that it's going to be safe for that patient. Elizabeth: Yeah. Dr. Nancy Taylor: So just a little advantage for having one of us. Elizabeth: Do you work only locally or do you also work [01:00:00] online with clients in, in other areas and stuff? Dr. Nancy Taylor: My services are available nationwide. So I work with anybody. I tell people, let's just start with with ask the Advocate. You know, it's a simple. Focused 45 minute discussion, comes with a, a written summary at the, you know, so you actually have something that you can take to providers and say, we had this discussion, but, you know, and if something needs to go further from that, then, then we can move further from that. But just to start with that really focused discussion can really alleviate a lot of anxiety about the situation. Elizabeth: Yeah. Dr. Nancy Taylor: I tried very hard even within that 45 minutes to give that person [01:01:00] back their confidence through of the situation and to put them back in control so that they feel they have some sense of control. You know, that is one thing that. Unfortunately, neurodivergent people is taken away from them quickly, and it's not that they wanted that to happen, it's just they couldn't stop it in the moment. Elizabeth: Yeah. Yeah. Dr. Nancy Taylor: And so I work very hard to give that back to them. Elizabeth: I love that. For people who are seeking an advocate, obviously reaching out to you would be a great resource. Is there any kind of network or website or place that you would recommend people looking, especially if they want someone local who could be with them, in a physical capacity? Dr. Nancy Taylor: Absolutely. [01:02:00] There are a couple of, um, directories out there that I, I recommend. one of them is the National Association of Healthcare Advocates, and there is a directory on there. You can type in your state, you can type in that you're looking for. And, and let's face it, it isn't just navigating appointments. It isn't just navigating, providers. are times, I mean, all of this can add up to possible bankruptcy. So there are, specific advocates out there that work on medical billing, and that is something that anybody has a hard time with, not just neurodivergent. People, I mean, it's hard to understand coding and explanations of benefits and was this put in correctly? So I just want people to know that there are advocates out there that [01:03:00] can help you with medical billing also, besides navigating the system, but the National Association of Healthcare Advocates, that is a good one. It's got a directory link right on the homepage. The other one is Greater National Advocates, and that one you can search through, really get to a refined search in that one too. And the, those are two really good ones to help find local specific. So you can even type in, you know, neurodivergence, you know, people will pop up that specialize in neurodivergence that, when people are just starting to look and what might be in their area. Those two are very good. Elizabeth: Awesome. Thank you so much, Nancy. Is there anything else that you want to discuss or say? Dr. Nancy Taylor: I just really want people to understand that, It's not them, you know, [01:04:00] they're, they're trying to work in a, a system that's not designed for people who have neurodivergent brains and that they don't have to go it alone. Even if it's just, can you help me put together, my folder to take to the doctor's office? Can you help me figure out how to, you know, how should I ask these questions? It can be down just some of those really simple. Areas that people need help because they're and, and we are out there to help with that. Elizabeth: And for anybody who is thinking that this might be something that is helpful or supportive for them, but maybe is having some lingering feelings around shame or not being able to do it yourself or anything else that might be coming up for you that's totally understandable. And also, you deserve the support. You deserve to have that accommodation so that [01:05:00] your medical experiences don't eat your entire life, and you have the energy and the capacity to do the things that are really going to support your healing, your recovery, and moving into. A life that is built for who you are, not who you quote unquote should be. Dr. Nancy Taylor: Patient advocacy is still a really. Narrow aspect of, of the healthcare system. And yes, right now neurodivergent people should have that as an accommodation. But want people to realize that your advocate is part of your healthcare team. And it's important to have an advocate on your healthcare team. And that is one thing that myself and the industry that I am in, we believe that every [01:06:00] patient should have an advocate. And that it is becomes a standard on your healthcare. Elizabeth: Nobody should have to be an expert in filling out forms to get their healthcare needs met. Dr. Nancy Taylor: true. So true. thank you for listening in today. The link to Dr. Taylor's website along with the links for other resources mentioned in this episode can be found in the episode Show notes.