Subscribe to The Podcast by KevinMD. Catch up on old episodes!

Join Tami Burdick, a patient advocate and author of Diagnosis Detective: Curing Granulomatous Mastitis. Discover the ins and outs of medical gaslighting, learn to recognize the red flags, and explore how both patients and health care providers can work together to prevent this detrimental practice. Tami shares her personal journey and insights to empower you to be your best health care advocate.

Tami Burdick is a patient advocate and author of Diagnosis Detective: Curing Granulomatous Mastitis.

She discusses the KevinMD article, “Medical gaslighting: a growing challenge in today’s medical landscape.”

Careers by KevinMD is your gateway to health care success. We connect you with real-time, exclusive resources like job boards, news updates, and salary insights, all tailored for health care professionals. With expertise in uniting top talent and leading employers across the nation’s largest health care hiring network, we’re your partner in shaping health care’s future. Fulfill your health care journey at KevinMD.com/careers.

VISIT SPONSOR → https://kevinmd.com/careers

Discovering disability insurance? Pattern understands your concerns. Over 20,000 doctors trust us for straightforward, affordable coverage. We handle everything from quotes to paperwork. Say goodbye to insurance stress – visit Pattern today at KevinMD.com/pattern.

VISIT SPONSOR → https://kevinmd.com/pattern

SUBSCRIBE TO THE PODCAST → https://kevinmd.com/podcast

RECOMMENDED BY KEVINMD → https://kevinmd.com/recommended

GET CME FOR THIS EPISODE → https://earnc.me/Pkbcmf

Powered by CMEfy.

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 we welcome back Tami Burdick. She’s a patient advocate and the author of the book Diagnosis Detective: Curing Granulomatous Mastitis. Today’s KevinMD article is titled “Medical gaslighting: a growing challenge in today’s medical landscape.” Tami, welcome back to the show.

Tami Burdick: Thanks for having me. Pleasure to be here.

Kevin Pho: So I think today’s article briefly retells your story. Go to the upper right-hand corner; there’s a search icon, and you can search for Tami’s name and her last episode. But let’s get right into this current article. Why did you decide to write it?

Tami Burdick: Because medical gaslighting has impacted basically my entire family. I was dismissed during my journey with granulomatous mastitis. My father had a stroke and was in the hospital, and they released him without doing the one test that would tell them what was causing it. He ended up having to have a procedure, but I had to advocate for him. I had to find a cardiologist. I knew with everything in me that something heart-related was causing it. Then my mom had ongoing headaches. She kept going to her primary care physician, a couple of times, and was referred to neurology. The neurologist tried to diagnose her with headache syndrome, and he wasn’t even going to do any imaging. The imaging they did found that she had a brain tumor. And then my uncle passed away in May, and we’re pretty confident that neglect in the health care system contributed to his unfortunate and sudden passing from cardiac arrest.

Kevin Pho: So tell us, what’s your definition of medical gaslighting?

Tami Burdick: If a patient goes to a doctor and starts feeling like they’re not being heard, or the doctor’s giving them X, Y, Z excuses, like maybe you’re just too young, or it’s all in your head, or whatever you’re going through is going to pass, and then the patient leaves there even more insecure about their circumstances than when they first went to see the doctor.

Kevin Pho: Now, what separates medical gaslighting from scenarios where physicians simply may not know what’s going on?

Tami Burdick: I guess it’s kind of a hard question. Perhaps, in the second case, the patient would leave feeling confident that the doctor is going to do X, Y, Z tests, or at least make a conscious effort to try to figure out what’s going on with them. I think that when there’s medical gaslighting going on in particular, the patient leaves without any answers or any testing, and there isn’t going to be any sort of process to try to help them.

Kevin Pho: So as you introduced this article, you talked about various scenarios where medical gaslighting happened to your family. Go into more detail about one of those specific encounters, and maybe we can talk about some of the phrases and things the medical profession did that led to it. Pick one of those scenarios and tell us about it.

Tami Burdick: We’ll use my mom, for example. She had been having ongoing, chronic headaches, and they were just so intense. They were happening every day, and they were getting worse and worse. She went to her primary care physician, and at first the primary care physician was just like, “Just take some over-the-counter medicine.” And my mom said, “I am.” And she said, “Well, just take some more. Call me if things don’t improve.” Things didn’t improve, so she went back, and the primary care physician said, “OK, go ahead and use the prescription you have that could potentially help these headaches, and just take more of it.” Again, her situation wasn’t improving, and I think it was after the third primary care appointment that she got the referral to a neurologist.

I went with her to the neurology appointment. He did a clinical exam: “I’m going to give you a series of words. I want you to repeat these words back to me. Follow my finger.” The whole gamut. I was sitting there getting the impression that he was just blowing her off, saying, “These headaches are just something you’re going to have to deal with.” I thought it was very presumptuous of him to assume, without any concrete evidence, that this was just some ridiculous headache syndrome, which he tried to diagnose her with. Then he said to us, just to give us both a better sense of security or make us feel better, “I’ll go ahead and order a CT scan for you to give you peace of mind.” At that point, it was like he was doing us a favor. And sure enough, the CT scan results came back showing the brain tumor as well as idiopathic intracranial hypertension.

Then we ended up having to call the office, because they didn’t even call us with the results. We got the results in MyChart. So we had to call and ask, “Were you planning on calling my mom to tell her about her test results?” We fired that doctor, obviously. He didn’t offer any apologies for his mistakes, either. We went to another neurologist in that same practice, and she tried to prescribe some drugs that were actually not supposed to be taken with another prescription my mom was currently on. So that tells us: Are these doctors even bothering to read the charts? Are they bothering to read the patient’s intake paperwork?

Kevin Pho: So let’s say you were to replay that whole scenario in your mind, and this time, in your ideal world, how should the doctor have responded, whether it’s the primary care physician or the neurologist? In your ideal world, what should have happened instead?

Tami Burdick: At that point, it was going to be the fourth appointment for the same ailment and symptom. The patient, my mother, was going to a specialist because all the other therapies and all the other visits with the primary care physician weren’t showing any improvement. So at that point, I would think the doctor would want to rule out anything serious. You don’t know what you don’t know, and that’s why I felt there should have been some imaging to prove that it was just headache syndrome: “I think you might just have headache syndrome, but let’s go ahead and do some imaging so we can see if there’s anything there we might be missing,” right?

Kevin Pho: So during these encounters that you and your mother had with these clinicians, did they give you any input in terms of how you wanted the care directed? Did they simply say, “This is what we’re going to do”? Or did they leave any options open, saying, “We can do A, B and C, but I want your input on how you want to proceed”?

Tami Burdick: With getting the testing, there really wasn’t any input on how we wanted to proceed. It was just, “Here, I’ll go ahead and order that CT scan for better peace of mind.” I think, subconsciously, he probably thought there wasn’t any sort of growth or tumor present that was causing her symptoms. The second doctor we went to, in the same practice but at a different location, made it seem like she was just going to try to make the patient less symptomatic: “We’re going to try to make you feel better and alleviate what you’re going through,” with two or three different types of prescriptions. That was her plan at that point. The growth they did find within the brain, they were just going to monitor. Obviously, they don’t go in and remove things unless they absolutely have to, or unless it’s very, very dangerous for the patient to leave it there. So they were going to monitor that.

Kevin Pho: Now, you described several episodes where you and your family had negative encounters with the health care system. Was it simply bad luck, just a run of bad doctors? Or do you think there was something more going on behind the scenes that led them to say what they said and make the decisions they made? I know you’re just speculating here, but why do you think they reacted that way?

Tami Burdick: I’m going to answer more in general: Why are patients experiencing medical gaslighting in today’s modern health care system, and who’s to blame? That’s really what the article emphasized. Is it the patient? Do we need to blame the patient? When it comes to the patient, they need to be as forthright, detailed and honest with their doctors as possible, because what they’re not telling their doctor won’t enable the doctor to know what they need to order or to give a diagnosis or treatment. But then when we look at the doctor: Is the doctor open-minded? Is the doctor listening to the patient? Is the doctor believing the patient? Is the doctor doing everything they possibly can on their end to get a diagnosis and an effective treatment plan?

Then we have the pressure from these medical networks on the doctors: See as many patients as you possibly can in a short window of time. I think the average might be about 15 minutes now. You can’t accomplish much in 15 minutes. You’re trying to build a relationship with this patient in 15 minutes; I don’t know what you can accomplish in that amount of time. So we have pressure from the medical networks on our health care system, and if we’re not giving patients the time they deserve and need, are we really going to get the answers and the treatment we need at the end of the day?

And then we have the insurance companies. Do they have these loopholes that everyone has to go through in order to get things done and make things happen? Maybe in the back of a health care professional’s mind, they’re a little bit nervous about ordering X, Y, Z tests. Maybe they’ll order all the tests in the world and everything will come back completely normal, and then the insurance company is going to look at this doctor like, “What are you doing?”

I think, cumulatively, when we look at everything, everyone needs to be in unison. Everyone needs to work together as a team. The patient needs to be honest and open. The doctor needs to do their due diligence and really, truly listen to and believe their patient. The medical networks need to take a step back and focus more on health care, so that we can avoid more medical gaslighting in the future. And the insurance companies are there for a reason; we need to be able to provide the tests our patients need.

Kevin Pho: What kind of advice do you have specifically for clinicians, since you have an audience of clinicians who listen to this podcast? Sometimes they want to push back on 15 minutes per patient, too. If I had my choice, I would spend at least an hour with each patient. But if we’re unable to push back against those time constraints in the exam room, what kind of advice do you have for us physicians to be more open-minded and to listen to patients? Give us some specific, positive examples.

Tami Burdick: Luckily, I had an amazing surgical breast oncologist who was able to take the time with me, listen to me and be open-minded about my research, because if it weren’t for her, my outcome would have been entirely different. But I think more health care professionals just need to stand up to these health care networks: “Listen, we can’t accomplish much in 15 minutes. We could be looking at potential lawsuits. I could be looking at losing my medical license.” There’s a huge risk in giving these patients only a small window of opportunity. Truly, you can’t accomplish much in 15 minutes. And maybe the patient hasn’t been in for two years; a lot could have happened in a two-year time frame. Even my own surgical breast oncologist wrote in my book that she didn’t have the time to devote to the research I did to get the answers. And at the end of the day, it shouldn’t be the patient’s responsibility. It should be the doctor’s responsibility to do the research, find out what needs to be done and do it, and there shouldn’t be any roadblocks.

Kevin Pho: Now let’s ask that question from the patient’s standpoint. What are some ways patients can better advocate for themselves in the rushed environment you described?

Tami Burdick: Be prepared, right? Do as much as you can to learn about what you’re potentially dealing with, or if you’ve been given a diagnosis, learn as much as you can about it ahead of time. Come with a list of questions you would like to ask. Maybe bring someone with you who can take notes. And just advocate for yourself. If you feel something is not right, it probably isn’t. We were all born with an intuition. Use it.

Kevin Pho: We’re talking to Tami Burdick. She’s a patient advocate and the author of the book Diagnosis Detective: Curing Granulomatous Mastitis. Her KevinMD article is titled “Medical gaslighting: a growing challenge in today’s medical landscape.” Tami, tell us some of the take-home messages that you want to leave with the KevinMD audience.

Tami Burdick: If anyone in health care, or patients, or the medical networks or the insurance companies are listening, let’s just all work together in unison as a team, and hopefully, moving forward, we will see less medical gaslighting and more happy people in general.

Kevin Pho: Tami, thanks again for coming on the show and sharing your story, time, and insight.

Tami Burdick: Thank you.