Communication Tips for Managing the Healthcare Providers on Your Team

Video Transcript

Joyce Griggs: Hello everyone and welcome to our collaborative series of conversations addressing the issues of autoimmune disease in women. I'm Joyce Griggs from United States of Healthcare and I'm joined today by my partners from My Care Friends, Todd Keitz and Katie Seymour.

And our guest, and I'm so pleased to say my friend, is Dr. Betsy Bennett, who will be talking with us about how to best communicate with your healthcare team.

A little bit about Dr. Bennett. She's a clinical health psychologist and a faculty member at the University of North Carolina at Chapel Hill. She lives herself with an autoimmune disease. She's survived breast and lung cancer and she has spent her career helping patients navigate life with chronic illnesses. Dr. Bennett, thanks so much for being here.

Dr. Betsy Bennett: Thank you. I'm excited to be here.

Joyce Griggs: Okay, so I'm going to jump in with our first question, which is, what do you think is the number one challenge that a woman with an autoimmune disease faces when it comes to managing communication with her healthcare provider team?

Dr. Betsy Bennett: Okay, so I'm going to say something that I think no one's going to expect, but I'm going to say it anyway because I think it's true. I think that when you, when you need to communicate with someone where you are going to need something from them, and that's what we're dealing with, right? You need things from your healthcare team. The first and smartest thing that you can do is to think about, What motivates that person? What do they need? What are potential triggers for them? And because I've taught healthcare providers throughout my career, a different area, but still teaching healthcare providers, I feel like I understand that one of the things, this isn't the best word, but I'm going to use it because it's still early, sort of triggers or isn't, it is as an issue with many healthcare providers is that they want to have an answer for you. They want to have something concrete that they can do for you. And the very nature of autoimmune disease, and actually chronic illnesses in general, even treatment, I mean, I think when I was on my, you know, chemotherapy for breast cancer, there are many things that healthcare providers cannot solve. There is suffering that they can only partially alleviate. So one of the things that you can do when you're interacting with your healthcare team, is one way or another, make it clear to them that you understand that they cannot fix everything you're bringing to them. You get that.

And I've said that straight out. I remember before I was having symptoms, I have sarcoidosis and I started with really, really severe fatigue. And I remember saying to my internist, I came in for another appointment and I said, "I want to start out today by saying that I understand you can't do anything for my fatigue. I understand that. So let's just, I'm not expecting you to fix it. I'm doing what I can do to live with it. But there are some other things that I'm experiencing that I felt like you needed to know in case that's going to help us solve this puzzle."

So you see how different that is from like, "Oh my God, doctor, I'm so tired. I can barely like lift my head." Which is kind of how I felt. But I, I think that the more that we, because I'm part of the, I'm, I'm one of y'all too, the more that we can approach our healthcare team as a little bit more like a business partner and not so much expecting, a lot of maybe emotional support, the better off we are. Like, hey, we're here. I'm here to help you help me get as much relief as I possibly can.

Joyce Griggs: Why is that better for the healthcare provider to hear it that way? I'm assuming you're saying that that's this is this is a strategy for getting something.

Dr. Betsy Bennett: Yeah, because I feel like it takes off their sort of emotional plate the idea that they're supposed to fix you. Or that you expect them to fix you when they know that you get it like there's not a cure for this thing. You're just trying to get to a better place. That's a relief for them. And I believe maybe frees them up to, to think out loud with you and, and collaborate with you.

Joyce Griggs: So you might get some, a more creative solution.

Dr. Betsy Bennett: Well, yeah, you know, because at that point, the doctor no longer, the provider no longer has to worry about, "Oh man, how am I going to, now I got to let this person know that there's no fix for this. I can't fix her fatigue." You've already taken that away. Hey, I know that. So what else, what else can we do here?

Joyce Griggs: Would you approach it any differently for the recently diagnosed? Would you tweak this or would you say, no, even if you're recently diagnosed, this is, this is the way to go?

Dr. Betsy Bennett: You know, I think it probably depends on how much you know about the, about the illness you've been recently diagnosed with.

So I think at that point, I might be, again, super collaborative, but might have maybe more questions. So it might be more, "Yeah, my fatigue is just killing me here. I'm guessing there's not a lot we can do for that, or maybe there is, Doctor, you tell me. But, but I, I understand if there, if there are limited tools for this because that's what I'm gathering when I, when I look into this or, or whatever."

Again, leaving that, leaving that, door open so the doctor doesn't have to waste any cognitive energy on helping you understand that there are, limited tools perhaps.

Todd “TJ” Keitz: I have a question for you, something that I share with people over time. Now you have read about my story and so forth. And what I learned through that and and instinctually is that physicians are really strapped for time in this day and age, and that I always say to advocates, caregivers, patients, try and look at them as human beings, not necessarily as a doctor. Of course, they are the doctor they're going to be helping you. But if we walk in and we realize they're a human being who has a family, who has a life, and they're so strapped for time, they have to fit certain things in. And if you say that to them, I have found with new doctors, and there's new doctors all the time with my parents, and I say that to them, we understand it's, it's really busy for you. It, it kind of just, it has them relax and you get more out of that connection.

Dr. Betsy Bennett: Absolutely. I mean, I couldn't agree more. I couldn't agree more. It's it's so so so true. And, I think and I know I think we're going to get to this later in the conversation, that's what makes it I think so much more important that we're getting the support we need from our circle of loved ones and supporters because in general, I mean, there are always these doctors who somehow managed to be exceptional, but in general, there's not the time or the emotional energy for them to be giving that to you. You need to be getting it somewhere else. Yeah.

Joyce Griggs: Great. Thanks. That's great.

Todd “TJ” Keitz: Another question is, and we sort of touch a little bit on this, but maybe you can expound further is what are some of the common challenges that women with autoimmune diseases encounter when managing their healthcare team and how can they overcome these challenges?

Dr. Betsy Bennett: Yeah, boy, there's a whole world out there of research and this is not my area of expertise, so I want to, you know, full disclosure, but, you know, basically the idea that, women and people of color, although we're talking about women here, but I want to add that too, are much more likely to have their symptoms and their complaints dismissed. Pain in specific, but, you know, talk about medical gaslighting is a, is a phrase that we hear a lot about and, you know, it's a thing, you know, it's real.

I think that one of the things that is very important for women to recognize is that particularly, you know, autoimmune diseases are so characterized oftentimes by these vague, non-specific symptoms.

If I think about it, like, you know, I'm tired. I have muscle aches. I'm thinking of some of these vague things. I have occasional stomach pains. Like you can think of all these things and you're in sort of a high risk of being dismissed. Well, you know, a lot of people have that.

And so I would say that, it's very important for any woman who thinks that she might have an autoimmune disease to be very specific about her symptoms and to be pretty persistent about like, I know this isn't right for my body. I'm telling you, I'm having these things. I know this is not me. And I would like to problem solve with you to try to get to the bottom of this.

And understand that there are women who unfortunately don't have a choice about who they see, and they might have to just keep, you know, being persistent with a provider who's not really cooperative.

For women who can come out of an appointment and say, that was no good, man. This person was not listening to me. They're not taking me seriously, you know, I'm out of here. And to find someplace where they're going to be listened to.

And then, you know, we're talking about people who have a diagnosis. If you have a diagnosis, again, very important to be clear and concise. And back to your point, Todd, about the limited time in an appointment. It can be very helpful to come in with a list and to say, "I have no idea if these things are, in my case, I have no idea if this is related to my sarcoid. But here are the things, since I saw you six months ago, that I'm experiencing. Boom, boom, boom, boom, boom." And it's very important, I know, that I communicate that because I have sarcoid in my lungs. It could be somewhere else. Sarcoid can be all over your body. So I need to pay attention to these things and I share them. And then it's up to my doctor to ask me more questions about like, for basically my pulmonologist to make the determination, hmm, you know, do we need to explore, you know, whatever, whatever, you know, symptom it might be.

But the more kind of crisp and clear you can be, and this kind of ties into something Joyce and I have talked about before. This is where it's very important if you do track your symptoms to not fool yourself into thinking that you can hand a bunch of graphs over to your doctor and say, see what's happening to my joint pain. That they're just going to be like, No, don't, you know. You have to and if you can't do this yourself again involve people who who love you with maybe some other skills, who can help you distill the data that you have down.

So it might be, say you're in a 3-month follow up, right? And that you've noticed that you're, you have what you would call severe joint pain more than four days a week, something like that. And that that's different from what it was, that's really what you need to say. Don't hand over the graphs. You say, I've in the past three months, I've been tracking it and my severe joint pain is four days a week, whereas the last time I saw you, it was two days a week. I, I'm wondering if we need to do something here.

Todd “TJ” Keitz: Yeah, those are great points. So you bring up the, the topic of gaslighting and gaslighting is something that, as a part of this series, we're going to be focusing on. So we're really looking forward to that program. And I've been really, gosh, I've been touched, moved, not just by my mom's experience with an autoimmune disease, scleroderma and how that just ravages a body, but I've, I've spoken with so many women since then, and that was, she was diagnosed six years ago and I'm astounded by what happens and when I talk about whenever I all I have to do is say the term gaslighting, they just, they have a visceral reaction to it. And I have heard the phrases that we all have heard, and others over and over about, oh, it's all in your head. Well, this is, it's just your time of the month, or, you know, whatever it might be and one in particular, this woman that I spoke with over in the UK, who will be a part of our program as well, she, she's a young woman and she was kept saying, look, I know I have perimenopause. I know it. I know it. I know. And they kept dismissing her. Ultimately she was right. Yeah. So it does. It's, it's, it's really unfortunate and you make a great point about journaling. That's going to be another part of our program as well.

Dr. Betsy Bennett: I don't want to go too down the, too much down the road because we all, you know, we all have these great anecdotes. But what's interesting about gaslighting is it can even happen when you have a clinical symptom.

I remember, gosh, I was probably in my forties and I had a large lump in my armpit. I mean, it was palpable. You could see it. And I went to see a surgeon. And he said, It's nothing.

Women can gaslight too, don't get me wrong, but in this instance, it was a woman surgeon who I went to for my second opinion. Oh, and he had said that I had, it was mastalgia, which is sort of medical-isms or medical-ese for pain in the breast. Well, I was like, well, number one, it's not painful and number two, I guess it could be breast tissue. It's under my arm, but that's not clear to me. And she said, well, if he had a mass in his testicles, would he say that he had testalgia? Probably not. He'd probably want it removed. And I just remember that like, oh my God, touche. But yeah, I mean, gaslighting, it's, it's real. And sometimes just unbelievable. Like, when I tell that story still, I'm like, did that happen? Yes, it did.

Joyce Griggs: I just want to summarize a couple things that you said, if you're having trouble communicating with your healthcare provider, maybe bring someone with you if you can't change or if it's impossible to change, who can help with the communication, because it's so important that you get through and that we not, you know, just give up because we just don't know what else, we don't know what else to do and, and, or ask for a consultation outside of the exam room where everybody's fully clothed and, you know, kind of sitting from a place of, of, of power. These are a couple of things that, you know, you can do when you come up against these, these challenges that are real, that are real.

Dr. Betsy Bennett: Yeah. And I mean, we could spend a lot of time talking about the benefits of an appointment buddy. And, and, you know, while I totally agree, Joyce with like, it's better to be clothed and have a consultation, again, that's not always possible in a super busy clinic and you could find yourself waiting another six months to have that clothed consultation. So I, I tell patients ask for that and if you can get it great, but if you can't be prepared.

One of the things that I think about for the bazillion times that I've been in the, you know, the, the, the freezing paper robe that crinkles and you don't feel like you're quite covered up. I tell myself this. It's nothing more than a costume. I'm in a costume that denotes patient. My doctor is in a costume that denotes provider. It's all it is. It's just a costume. I am still a human being. And when I tell you that I'm having palpitations or whatever it might be, you need to take me at my word.

Katie Seymour: I love that. I love what you're sharing about communication and how important that is. And I think oftentimes in the partner, your, your appointment buddy, oftentimes, you know, using language like, this is not so and so's baseline, or this is not my baseline, has really supported me personally in the, in the past. And I think that word maybe triggers something in the provider going, Oh, okay. So anyway, it's just a tip that I have experienced. But I love, you know, the talk about communication.

I'm really curious more what it might look like with the decision-making process and the provider and how important is it for us as women to, you know, really, I would imagine important to participate in the decision-making process with the team. And I'd love to know some of the steps that we, as women, can take to assess preferences and priorities.

Dr. Betsy Bennett: Yeah, so I'm gonna tie this back into where we, you know, you started with your question in terms of the appointment buddy. This is a place where an appointment buddy can be very, very helpful because starting with kind of going, just taking a little turn back to the symptom reporting. Another thing that it, that an appointment buddy can do is check your own impulse, and I speak I speak with love because I do this myself, to minimize what you're going through. You know, "Well, yeah, I think maybe my fatigue's been a little better," and to have your buddy say, "That's not been mine. That's not what I noticed." You know? So that you have that participation there. And then when it comes time for like, okay, what are perhaps some treatment options or if there's more testing that, that can or should be done. As the patient, your head can be spinning like, well, what did they just, you know, you know, you can feel confused or following one track in your mind, but not really hearing the rest of what your provider is saying, and the buddy can be the one to say, "Okay, so it sounds like we have a couple of options. We could get an MRI now or we could wait another three months or we could go, you know, right to this other specialist or something like that. Am I getting that right, doctor?"

And, and then be able to speak out loud a little bit about, um, okay, well, for instance, if we take the wait three months option, could this thing that we think we might find through the MRI get worse? Should I be hopping on that in your opinion, doctor? And kind of getting the pros and cons of your different options, and then being able to say, I feel most comfortable with X, because of whatever it might be, or maybe, hey, can we talk about this at home and we'll, you know, call back and tell your nurse what we've decided, something like that.

Yeah, it's hard to do on your own, man. I mean, I just, the buddy is a lifesaver. There's just too much going on. It's, it's, it's a lot cognitively and to have someone there who's kind of got your back and helping you make it all very clear is very, very helpful.

Joyce Griggs: And sitting there with a pen and a piece of paper, writing things down as it's, you know, as it's, as it's happening, because you can't do that, especially when you're in the paper gown.

Dr. Betsy Bennett: Yeah, yeah, exactly. Exactly. Freezing, right.

Joyce Griggs: So, you know, when you have autoimmune disease, I mean, okay, you've already mentioned it, multiple specialists on your team, it's not just one doctor that you're working with. Do you have any tips for our audience as it relates to navigating the dynamics, the relationships among these various specialists on the, on the team.

Dr. Betsy Bennett: So again, I'm going to say something that sounds, I don't know, maybe controversial, but I'm going to say it anyway. You may not have a team.

Joyce Griggs: Yeah.

Dr. Betsy Bennett: You have these disparate specialists, and they literally probably never speak to one another. The only time I felt like I truly had a team was in my cancer treatment, probably. But for my autoimmune disease, not too much.

Joyce Griggs: I mean, actually, I'm just going to interrupt for one second because you know what? You're right. It's not a team. It's that you've got this group of specialists and it's like, how do you court, you know, and then there's the issue of coordination of care. So let's just talk about that. The dynamics of coordination of care with this realistic picture that they don't work as they don't work as a team.

Dr. Betsy Bennett: Right, right. I think one of your best friends is a printer, and I know that makes me sound very much my age, which I will not reveal here. Although I should be proud of my age, actually. But anyway, we're not going there. You need a printer. And if you don't have a printer, you need to get to be friends with your local Staples or whatever. Because the best thing that you can do is print out any results from testing that you've had for various specialists and bring it in. These, these different EMRs, they do not talk to each other necessarily. And it is a huge mistake to think that they do. And sometimes even when they do talk to each other, it's hard for a provider from one system to get into the results from another system. So unless you are getting all of your care in a single medical center, in that case, they probably can, you know, quickly call up, you know, whatever's been done. But if you're at any, anything other than that, you need to print the stuff out and you need to bring it with you. The other thing that I've done is I, I make up a word document, always just a page and as abbreviated as I can make it, with a timeline of my health history. I start with my breast cancer since that was my first serious diagnosis and, you know, Boom, boom, boom, boom. And I had it every time, they look at it, it's brief. I have it in bold and they say, thank you. This is great. And that's, that's the kind of thing that you, you want to refresh their memory, give them new test results, and then they have it. They can understand it at a glance and then help you get through the rest of the appointment.

Todd “TJ” Keitz: I want to jump in here. I think that's an excellent point. And it's something that I do with, especially with my mom because the autoimmune disease, of course, affects so many different aspects between CKD and ILD and so forth. So it's having that summary document ready to go and then you can add to it.

Another really important reason to have that is because with an autoimmune disease and especially as it progresses and how it presents, you may end up in an emergency room that they're going to have no idea about your history. And if you can present them this right there, they have it. And that's so important, you know, they're not gonna be able to get everything typically because it's an emergency situation, but that has helped tremendously.

Dr. Betsy Bennett: Oh, absolutely. I remember when I was first diagnosed with sarcoid, the surgeon, I was, it was an, it was an accidental diagnosis, and I was, I was lucky to get it. I'd had been having all these symptoms and didn't know what it was. And then we found out in a kind of a weird surgical way. And, I remember him saying to me, anytime you go for any care, the first thing you need to say is I have pulmonary sarcoidosis. That's the first thing out of your mouth.

And to your point, now, I know that, yeah, just a, a, a well-crafted, printed-out page that boom, this is what I have, this is when I was diagnosed, here are some critical junctures sort of in, in my illness. That helps everybody. It helps them not go down rabbit holes when they're trying to figure out how they can help you. It's very, very helpful.

Todd “TJ” Keitz: Yeah. And one further point about the emergency situations, I always tell people with this document, if you can put it together, it's really important. Have on there what you're allergic to, because when you get into an emergency room, as you know, they just start throwing everything at it. And if they didn't know you were allergic to penicillin or they didn’t know that you're allergic to whatever it might be. That's a problem.

Joyce Griggs: What medicines you're taking because of drug interactions. It's really important to have that accurate, that accurate list for your, for your specialists as you're going on appointments and then an emergent emergent situations.

Unfortunately, we can't rely on the data in the systems.

Dr. Betsy Bennett: That's right.

Joyce Griggs: It's, I mean, there's a lot of work happening in this area, but for now it's really up to us.

Dr. Betsy Bennett: It is.

Joyce Griggs: Individuals to make sure that they get that information.

Dr. Betsy Bennett: Yeah. And because, you know, they can't take something out of you once they put it in you with an IV or a pill or anything else, I actually would say that this is for you or your buddy. I mean, if you are in an emergency situation, you probably can't think of this, but your buddy should know that they should always say before they administer you anything, are you sure that this is okay to have this medicine given that my mom, my wife, my friend, whatever is on boom, boom, boom, boom.

That extra, that extra step. And you know, it's interesting because I've had many nurses tell me that they always do that because they know how easy it is to make a mistake. So when they are the patient, they always say, "Hey, before that IV goes in, just want to check. Are we okay that this is okay with these other things?"

Joyce Griggs: That's really, it's really important and cues my mantra to anyone who asks me is assume nothing. Assume nothing. I don't care if you're in the best facility on the planet Earth, assume nothing.

Dr. Betsy Bennett: That's right.

Joyce Griggs: It's your body, it's your life.

Katie Seymour: And I'd say the providers appreciate that. I think, you know, we think about this idea of impulse and, oh, I don't want to say that. But no, I think that, you know, the competitiveness is not a not problematic.

Dr. Betsy Bennett: Absolutely.

Todd “TJ” Keitz: Yeah. And it's often the way that you say it, as well, it, you know. Sure. you don't want somebody to get their backup. And, and, and, and to your point, Katie, for sure, that the healthcare providers, they're there 'cause they care. They just, like we pointed out a few minutes ago, they're so stressed, they're so overstressed. So if you can help them, I think they really do appreciate that.

Dr. Betsy Bennett: Yeah, for sure.

Joyce Griggs: Totally right.

Todd “TJ” Keitz: So, Betsy, how can a woman ensure that all the members of her family and circle of support are well-informed about, you know, the specific autoimmune condition and its implications for her overall health.

Dr. Betsy Bennett: Oh, wow. This is a tough one. And the reason this is the tough one is that the people, for most of us, the people who love us come in all different types, right? You've got, you've got the people who love you, who wanna pretend it's nothing wrong, that there's nothing wrong. You have people who love you, who wanna know everything, and they, they're so grateful for anything that you share. And I, in many more varieties than that, those are kind of the first two kind of extremes, I guess, that, that come to mind.

So, the people who want to know everything are kind of the easy, they're the gimmies. And, and they're the ones I would say, bring them in first, because they want to know, they're eager to know, and for them, that's like, that's their toolkit for how they're going to help you and they're, they're anxious to do that. They want to do that.

So, gosh, you know, a good example here is that, for instance, if you, if any of you were to go and Google sarcoidosis, what you would find is that it's no big deal. That's the first thing that you would, that would come up. That like, oh, you know, cadaver studies show that X percent of people have it and they don't even know they have it. You know, they're, they're dead and we look at their bodies and we found out they had, it didn't cause anything. You know, and, oh, some people have it and disappears in a couple years. You know, like no big deal. You really have to dig in to learn about that, I think it's something like 15 percent of people with sarcoid really, really get sick with it. And yes, you can die of sarcoidosis. But that's not what you find on the internet. So, and there can be similar, similar experiences even with people with better known autoimmune diseases like RA, for instance, or multiple sclerosis or scleroderma, like you said, there's always going to be the person who's like, well, you know, my neighbor Jenny's had that for years. She's fine, you know, and, and that's, and that's what people are kind of eager to believe that, like, whatever it is that you have is no big deal.

So back to the gimme's, the easy ones, you know, you can, what I did early on is I found a website that actually talked about the 15 percent of people who really do get sick with sarcoid. So I'm in that group. And then that, you know, helped my friends and my family who wanted to know, like, "Oh, my gosh, what's going on? What is this thing?" Easy peasy.

Now, what do you do then, so, for people who don't want to know, like, there are usually two reasons for that. There's either the reason of, I can't bear to think about my loved ones suffering, or there's the I don't want to think of the world as a place where suffering can happen, because then it might happen to me, and it might happen to someone else I love, so I'm going to defend against it. La di da di da, it's not happening. For someone who's in that position emotionally you just might have to understand that the extent to which they can help you is going to be kind of limited. And that if they, if they kind of, I'm going to use the word again, if they kind of gaslight you, “Well, you know, you, you know, you can't think it's RA every time you, you know, you feel sore. You can't always think it's your arthritis. I'm sore sometimes.” You know, I think that at that point you have to understand that part of caring for yourself is protecting yourself from that. And that even though someone like that might truly love you, it might be a time that you maybe have to limit your contact with that person because they're not nurturing you. They're just not. And everybody else who's not in that place, they're going to be happy and actually relieved to know what to do or what to look out for with the illness that you have. And it's, and again, it's that same sense of, like, collaborativeness with this person who, who loves you. And then the others, it might, it might take them some time and they might never get there. They might get, you know, who knows.

Joyce Griggs: I think it's important. Take care of yourself, put yourself first, number one, all of that, which sometimes it's hard for people if you're not that personality type, to put yourself first, but this is a time when you really have to work on that. I think they have to hone that skill set, to put yourself first and have people around you who can nurture you and support you in very intentionally putting yourself first.

Dr. Betsy Bennett: Yeah. Yeah.

Katie Seymour: Yeah, I love that idea of personal boundaries and, you know, even I'm even thinking about, you know, does it make sense or would it make sense to just be as the patient, like clear about, you know, your, with your loved one, like, what is it that you need? Do you, what, how do you want to participate? You know, I might put some boundaries up to protect myself. I think, you know, depending on the relationship, that could, could look healthy.

Dr. Betsy Bennett: Yeah, and one of the things I think that's, that has been very, very hard for me to wrap my head around, but, and so it's, I'm still, I would say in the process of doing this, many patients will feel maybe from the get go, or maybe as time goes on, because autoimmune diseases are just relentless, I love the way you put that, Todd. It's just so, you know, ravage your body, you know, many of these diseases can do that. They can and will do that. To understand that the illness is happening to you and your loved ones, so it's like really bad weather. You aren't making it happen. The tornado is not your fault, but it is happening to you and the people that you love. And in some ways, that's a painful recognition, but and then in other ways, when you can get to the point that you understand, like I didn't ask for this, I didn't make it happen. It is not anyone's fault. That can be freeing for you to understand that the people who care for you are struggling in a different way, but they're, they're struggling. And, and of course you are struggling.

Todd “TJ” Keitz: Yeah. This is an unbelievable topic that we could spend another hour or two on for sure. And it's an important one. Maybe we'll have to come back and do something on this because it's such an important topic and, you know, I'm just speaking personally of just navigating that over the past six years with my mom and then my dad. But specifically when you, I think of my mom and all the ways that scleroderma has affected her. And, you know, it, it's just seems at times it's one thing after the next, it just keeps hitting and it's rolling. And it's really important as an advocate, the words you choose. And caregiver advocate, the words you choose and the energy with which you express something to your loved one. It's not easy at times. Trust me, it's not easy, especially depending what's going on. But one of the things I, I do my best to try when she's, number one, it's always heartfelt. "I'm so sorry. You're feeling that way." I mean, you can just start with that and not say anything that helps. Another thing another thing that I will often say, and this is with anybody not just my mom is, “I can't understand what you're going through, but I care so much and I want to understand and I'll do all I can to understand and help you.”

Dr. Betsy Bennett: Yeah. Yeah. I mean, so it's so powerful to hear that as the person who's going through it. It's so, so, so, so powerful. I think the, the, the understanding that, this, this sort of goes both ways and I mean, I don't know your mom, but I bet your mom hates to worry you. You know, and so you have this like you and in some sense you have this wonderful gift of like to have this beautiful relationship where you love the person who's sick and the person who's sick loves you.

But that also sets up this, you know, you want to protect the other person, you know, and so there's just, there's a lot there that is difficult emotionally for both parties, I guess, is, is the kind of the bottom line. And in that wish to take care of one another, things can sometimes get a little wonky.

And, and as the person who has the illness, it's very easy to go down the rabbit hole of, it's my fault. You know, I'm worrying my kids. I'm worrying my husband. I'm worrying my friends. I don't want them to worry. And to have to reframe that, it's like, no, you are not doing anything. The disease is making them worry. The disease is making you sick. The disease is doing a lot of bad stuff.

Todd “TJ” Keitz: Yeah, you make an excellent point. There's, there's a young woman Brittany Foster, this young woman, she, I think she's 32 now, but she was born with congenital heart disease and has had umpteen surgeries and all different complications that come along. And when we first met her and we started talking about caregiving and advocacy, and she's a big advocate for the advocate. She just said, "I sit there so often when I'm in the hospital," and she has been there quite often. She said, "I look at my mom who just won't leave and I feel terrible. And I want to help her."

Dr. Betsy Bennett: Yeah. Yeah, I'll tell you, if anything can get me crying, I'm, like, trying not to, that, that topic of the feeling of being responsible, is, it's, you know, it, it, it, it's, it's rough, it's just, it's painful.

Katie Seymour: Yeah.

Todd “TJ” Keitz: Yeah, well, I definitely think this is a wonderful topic to to do in the future. And I think we'll have to add it to our list. Sorry, everyone, but we have another one.

Dr. Betsy Bennett: I think that's I think that's awesome. And, and, and something that that I think everybody, either on the caregiving side or the on the patient side, will get it.

Joyce Griggs: Yeah, no, I think it's true. There is a sort of a making memories aspect to caregiving. I mean, good or bad. I mean, you can still make some good memories within these caregiving opportunities, you know, that we have for one another to have this human exchange. So.

Dr. Betsy Bennett: Yeah, yeah.

Joyce Griggs: Well, Betsy, this has been an amazing conversation. We just want to thank you so much for spending some time with us and adding to our library of conversations on autoimmune disease and, and women. Thank you so much.

Dr. Betsy Bennett: Thank you so much. This has been great. I really appreciate the thoughtfulness behind the questions, all of it. Thank you.

Todd “TJ” Keitz: Thank you, Betsy.

Dr. Betsy Bennett: Take care.