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Join us as we discuss with family physician Lisa Baron the pervasive issue of medical gaslighting, particularly in women seeking care for chronic illnesses. We’ll delve into the consequences of dismissing symptoms and the importance of validating patient concerns. We’ll also explore the role of social media in connecting patients with support and treatment options, as well as steps doctors can take to improve their bedside manner and rebuild trust with patients who have been gaslit in the past.
Lisa Baron is a family physician.
She shares her story and discusses her KevinMD article, “Gaslighting and dismissal: the consequences of invalidating patients’ concerns.”
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Transcript
Kevin Pho: Hi, and welcome to the show. Subscribe at kevinmd.com/podcast, and get CME for this episode by clicking on the CME link in the show notes. Today on the show, we have Lisa Baron. She’s a family physician, and her KevinMD article is titled “Gaslighting and dismissal: the consequences of invalidating patients’ concerns.” Lisa, welcome to the show.
Lisa Baron: Hi, it’s good to be here.
Kevin Pho: So we’ll get into your article in a little bit, but first off, just briefly share your story and journey to where you are today.
Lisa Baron: Sure. Well, medicine is a second career for me. I had a kind of short-lived career as a ballet dancer, and then it took me a while to decide what I wanted to do, but I decided I wanted to be a psychiatrist. So I went to medical school, and then I did an internship in psychiatry following med school, but kind of decided I missed everything else about medicine, so I switched to family medicine at UPMC St. Margaret.
And then when I graduated, I did about four years of kind of traditional family medicine in a group practice, and then I had been doing urgent care for years, and last year I opened my own direct primary care practice.
Kevin Pho: Yeah, so for those who aren’t familiar with direct primary care, and we’ve had a few direct primary care clinicians on the show, just briefly tell us what that is. And how was that transition into your own practice?
Lisa Baron: It is wonderful. So direct primary care is membership-based. It just allows me to spend, with most of my patients, an hour, an hour and a half, and I’ve really gotten to know them, and they can text me. You know, I say 24/7, but nobody texts me in the middle of the night. It’s just a wonderful way to practice medicine. I feel like that old-fashioned country doctor. But it’s attracted a lot of complex patients, you know, just by the nature of it: I can spend time with them. So it’s just been wonderful.
Kevin Pho: Yeah, for those who are interested in perhaps pursuing direct primary care, what are some tips that you have for them?
Lisa Baron: Yeah, so I found out about it when I stumbled upon a group called DPC Doc on Facebook, and there are a few other groups as well, but that one is kind of the main one. There are so many great physicians willing to help you every step of the way, so I strongly encourage people to join that group. There’s one physician who’s created a whole university on how to do it step by step. You just never feel alone, and I have no business background. I still don’t know what I’m doing most of the time business-wise, but it’s just so worth it. I feel like if I can do it, anyone can.
Kevin Pho: Wonderful. Let’s talk about your KevinMD article titled “Gaslighting and dismissal: the consequences of invalidating patients’ concerns.” Now, how did this article come together?
Lisa Baron: Well, at the time I wrote that, I had been through kind of a series of just bad encounters. My story is, I developed long COVID. I had COVID in December 2021, and then for about a month, I felt like I was having these nonstop panic attacks, and I just wrote it off, because I had a lot of life changes going on. But then I almost passed out at work. My heart rate was 40. You know, I ended up in the ER, and they kind of dismissed me too, basically.
Kevin Pho: What did they say to you when you went to the emergency department? When you said that they dismissed you, what exactly was that like?
Lisa Baron: Yes, so interestingly, I had dealt with this doctor before, who had dismissed me that time. But what I mean by that is, when I got to the ER, my blood pressure was up to about 90 over 50, so it wasn’t as bad as it was when I was at work, and my heart rate was about 50. So, I mean, not terrible vitals. But the problem was, I was afraid to leave because I felt like I was going to pass out, and I tried to explain this to him, and he said it was due to my lisinopril and basically discharged me. Now, I know the ER is just meant to stabilize you, so, you know, whatever. So I left there.
I saw a cardiologist. They put a monitor on me, and my heart rate would go to the 220s and down to the 40s, and she thought it was due to anxiety, and she put me on Toprol. And I just felt like there were so many more symptoms going on too. It wasn’t just what I’m describing. I was basically nonfunctional. A lot of times I just had to lie supine. I couldn’t sit up. And yet nobody knows much about long COVID.
So, you know, I’m not bashing doctors, because I didn’t know much about it until I went through this journey. But basically, I ended up just stopping seeing doctors, because I was learning so much from Facebook groups, because somebody on the other side of the world would have seen a specialist doing research, and they had some great podcasts out by people doing research, and so I learned so much through that. So I don’t mean to bash doctors. I know they have limited time, and, you know, not a lot is known about long COVID. It just gets discouraging as a patient.
Kevin Pho: Now, when you saw all these physicians who dismissed you, did they know that you were a physician yourself?
Lisa Baron: You know, most of the time I don’t tell them I’m a physician, because I feel like they’re going to think I know something that maybe I don’t. So I like to hear the whole story as they would tell it to a regular patient. But the long COVID clinic in Denver did know I was a physician. And, you know, it was funny, because I waited six months to get in there, and they had set me up with the wrong doctor for what my concerns were. It was actually very nice. He ran down the hall and found somebody who deals with dysautonomia, and so they gave me some good suggestions there. So that experience was good.
You know, with my primary care, I was asking to try different medicines, like low-dose naltrexone, things like that, and she’s like, “I’m just not comfortable prescribing that.” I just couldn’t find anyone. I called up a bunch of pain doctors to try to get a stellate ganglion block, and they wouldn’t do it off-label, and luckily I found a very kind pain doctor who was able to do it for me. So that was very positive.
Kevin Pho: So in your article, you use the term “medical gaslighting.” So speaking from your perspective as a patient, tell us exactly what that is, and how did that make you feel as you were going through this journey?
Lisa Baron: Well, you know, I also wrote about my initial journey with the medical establishment. That was when, after I had my first son, I developed a dry mouth. My joints were killing me, and my hands particularly were swelling and hurting, and then it got to the point where I couldn’t swallow. And, you know, I was told it’s because I live in Colorado. It’s dry. I was told I had postpartum bone hunger, and just terms like that, that made me question, “Am I being a baby?” And I had other people tell me it was postpartum depression, which I definitely agree with, because I was depressed, but a lot of it was because I wasn’t feeling well. I mean, I truly had so much abdominal pain that I couldn’t eat, so I was losing all this weight.
I finally got someone who scoped me, and it ended up I had celiac. And, you know, I have autoimmune disease all through my family, so I had a feeling I had Sjögren’s. My mom has it. I had a feeling I had rheumatoid. My mom has it. And everyone just kept saying, “No, you had an ANA of only 1:40. That’s not significant.” No one wanted to pursue anything else. So I started asking my colleagues to order things, and that’s basically how I got it done.
But, you know, I feel like I have such an advantage as a physician. I feel bad for patients who wouldn’t know what’s going on. And I just feel like, I don’t know. You know, I also have been on the other end, where I have 10 minutes, so I get that. I just feel like there’s a way to approach it to validate people’s concerns, you know, and just schedule another appointment: “Let’s work on this. Let’s figure it out.” But I never got that.
I had a neurologist tell me that they were going to do an MRI of my brain and put me on an antidepressant, and my heart just, it hurt. You know, having people just assume everything is due to anxiety or depression. And I feel like, you know, like I said, I joined all the groups online, and the vitriol they spewed toward the medical establishment, it made me feel bad that all these patients feel like they’ve been treated so poorly.
Kevin Pho: What are some of the things that you read in these groups? Some of the vitriol, what are some examples of that?
Lisa Baron: OK, so someone would post that, you know, “My doctor didn’t listen to me,” and then it would be like, “Yeah, doctors don’t know what they’re talking about.” “Yeah, don’t see a regular doctor. Go to a functional medicine doctor.” Yeah, and it just was comment after comment of, “Yeah, that’s all you’re going to be treated like.”
And I kind of feel like also, you know, there are a lot of predatory practitioners, in my view, who get hold of these patients, because they’re so desperate, and then sell them hundreds of dollars’ worth of supplements. I mean, you know, supplements definitely have their place, because I’ve been helped by them, but I just feel like everyone’s so desperate that they fall for things. I don’t know. I just feel like there’s not very much positive about doctors in these groups.
It’s not all negative, because people definitely found doctors who are helpful, and it’s usually because they’re well versed in something. But with a lot of these, you know, things like ME/CFS, there are not a lot of doctors well versed in them. So I feel like instead of admitting, “I don’t know what’s going on,” you know, they kind of put it on us, like it’s all in our head. And I can’t make a blanket statement, of course, but I just feel like in these groups, it really came across how prevalent this is, and that was another thing that just prompted me to write this.
You know, and interestingly, I’ve gotten a lot of letters through email from either patients or people actually seeking help for what I’m going through. And I don’t know. I just think a lot of this is just the way the system’s designed. Unfortunately, doctors are burned out.
Kevin Pho: So in cases where the diagnosis is elusive, sometimes physicians may not know what the next step is. One of the things that you said is that doctors should simply just say that, that we don’t know. Now, you’ve been on both sides of it. So speaking as a patient who’s gone through this journey of long COVID, going through diseases without a clear step forward, what would you like to have heard from the medical team?
Lisa Baron: Well, I’ll tell you kind of how I approach it. I tell patients, “I’m not sure what’s going on here. I can do some research, look into this further, and then we can schedule a follow-up appointment.” Or, “I know this specialist, and this is kind of what they do. I think that would be a good avenue to go.” And I feel like comments like that say to the patient, “I believe you. I just am not sure what this is or what to do.”
And I just think for doctors to be able to admit that doesn’t make us, you know, not intelligent. We’re human, and, you know, especially with family practice, I basically need to know everything, and I can’t. And patients are very understanding, and my patients are just very grateful that I believe them, and, you know, that I want to help. I’m just not sure what to do.
Kevin Pho: Well, tell me about these experiences as a patient. How has that changed you as a physician?
Lisa Baron: Well, it really has. I mean, I feel like for the most part, I’ve always been compassionate. But I choose my words in order to make them feel heard. And, you know, with a direct primary care model, it’s wonderful, because I can really dig and dig and dig, which I know people in the system just don’t have time to do. So I feel very fortunate.
But I just feel like I want to believe everyone in what they’re telling me, and they deserve that, to be believed. And I just think even in these short, you know, abbreviated visits that you normally get, you can still use words that offer the patient reassurance, and they feel like they’re not being written off.
Kevin Pho: We’re talking to Lisa Baron. She’s a family physician, and her KevinMD article is titled “Gaslighting and dismissal: the consequences of invalidating patients’ concerns.” So Lisa, you said that you went into the patient forums on social media, like Facebook. Sometimes we worry that the medical information in these groups sometimes isn’t the most accurate. Yet that’s sometimes the only place that patients can go to, because the medical establishment isn’t listening to them. So how do you reconcile those two issues in these forums?
Lisa Baron: Yeah, no, I totally get that. You know, the good thing is, we hear from patients who have access to specialists who get the condition, and so they do offer, I mean, they offered the treatments that helped me get so much better. I’ve made comments when people suggest something that’s kind of way out there, and I’m very kind about it, and usually it’s well received. But honestly, there’s some good information out there from the people who are able, you know, to see specialists that I’m not able to find.
So, but I know what you mean. You know, it’s social media, but it seemed like that was the only resource of information I had, and I would get so excited when I read a suggestion. I’d do my research on it. I’d be like, “Yeah, this might be it.” So I felt very fortunate. And there’s also a lot of support in those groups, and when you feel like you’re not supported, it’s just nice.
Kevin Pho: So I’m going to ask you for advice both to physicians who may be managing patients with unclear diagnoses, and also from the patient standpoint, in terms of what they can do to prevent this gaslighting and help navigate their way. So what would be your piece of advice to both physicians and patients in situations like these?
Lisa Baron: Wow. Well, I think, like I said before, you know, there are a lot of obscure things, and when people have so many symptoms, it’s hard in a 10-minute visit to say, “Yeah, I know what’s going on.” You know, I think again, it’s just offering validating statements. And if you have the time and want to work on this with the patient, you know, there is information out there. But if you feel like this isn’t something that I either have the time or knowledge to do, then offering them a referral to someone who might is a kindness.
As far as patients, I’m not sure I have advice, you know, because I feel like these chronic patients, they try to put together everything in an organized manner to be able to present it. And the sad thing is, I hear them saying, “I want to present this in a way that I’ll be believed.” And that just makes me feel sad, you know? I think first and foremost is just believe your patient, because they’re not always going to come in and present it in a clear-cut manner that, you know, evokes a diagnosis right there. But just that feeling of being believed, it’s just so huge.
Kevin Pho: My final question: Tell us some of your take-home messages that you want to leave with the KevinMD audience.
Lisa Baron: Again, for physicians, it’s just, if you have the time to dig, that’s great. But if you don’t have the time, or you’re not sure what’s going on, just offer words that you believe them, and validate their concerns and fears about what’s going on. And I just feel like kindness goes a long way. Like, if I walk out of an appointment and they haven’t offered an answer, but they were kind and I felt believed, I feel good, you know? Even though I don’t have that diagnosis, it’s really nice.
Kevin Pho: Lisa, thank you so much for sharing your story, time, and insight, and thanks again for being on the show.
Lisa Baron: Yes, thank you. It was a pleasure.
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