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Neurologist Carolyn Larkin Taylor discusses her article, “How medical gaslighting almost cost me my life.” Carolyn shares her terrifying personal story of being dismissed by her long-time gynecologist, who labeled her cancer symptoms as “just stress.” She details the frustrating journey of seeking a second opinion, the shocking discovery of her malignancy after a results mix-up, and the life-or-death stakes of the diagnostic delay. Carolyn explores the subtle, devastating impact of medical gaslighting, how it erodes a patient’s reality (even when the patient is a physician), and why women’s health issues are so often misdiagnosed. Learn how trusting your gut can save your life.

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Transcript

Kevin Pho: Hi. Welcome to the show. Subscribe at KevinMD.com/podcast. Today, we welcome Carolyn Larkin Taylor. She is a neurologist, and today’s KevinMD article is “How medical gaslighting almost cost me my life.” Carolyn, welcome to the show.

Carolyn Larkin Taylor: Thank you.

Kevin Pho: Let’s briefly share your story, and then we will jump right into your KevinMD article.

Carolyn Larkin Taylor: OK. I am a general adult neurologist. I practiced for more than 30 years. I am now in semi-retirement, but I am still working. When I went into semi-retirement, I decided to read through this journal that I had kept. It was my way of processing difficult situations in my life and in my career, such as the sad cases that I came across.

It just really includes the kind that make you stay up at night and not sleep very well. Instead of staying up and thinking about them, I would take them out of my head and put them into a journal. I was reading through that, and I saw how inspiring some of these stories were. I decided that I was going to try to put them in literary form now that I had a little more time.

Each story is separate and distinct, but they are designed to illustrate some universal theme. These include addiction, medical gaslighting (which we are going to be talking about today), grief, loss, and death with dignity. I had a lot of fun doing it. I consider myself a physician, not really a writer, but this was a project for me that I really enjoyed. It is something I think I have always wanted to do.

Kevin Pho: All right. Tell us about this particular article you wrote regarding medical gaslighting.

Carolyn Larkin Taylor: Yes. I wrote this article to illustrate my own case, which I do throughout the book. It is a memoir essay, so I cover difficult cases I have come across. That was one of them. I also cover the deaths of other family members that I dealt with that had neurological implications. However, regarding this particular one, we talk and read about gaslighting. It is a common phenomenon, and I think we see it a lot among physicians who are dealing with women and the elderly.

I have two points. One is that it is not malicious at all. It is something cultural. I think that women tend to talk more about their problems. They are more verbal, whereas men are more likely to have that warrior mentality. So, I think they are not always taken seriously. This is especially true when the doctors themselves cannot figure out what is wrong. You know what I am talking about. The patient keeps coming back. You have done everything. You have looked at everything, and you feel like you have done a good job. They are still complaining, and it is hard to figure it out.

It was like that with my own case. I had been seeing a particular gynecologist for many years, maybe 20 years. I thought a lot of her. She was very well respected, and we had a good relationship. I went to her on two occasions over the span of a year with a symptom of postmenopausal bleeding.

She did all the appropriate things, such as the uterine biopsy and the ultrasound. It assured me that everything was fine, and I was good with that. The symptoms would come and go.

A year later, the symptoms were back. I showed up and said that the symptoms were back. I just did not feel right about this. I thought something was wrong. She was getting ready to retire. She was closing her practice in two days and leaving for Europe. She had a lot on her mind.

I think the last thing she needed was someone she knew well, a physician as well, to come in and say that something is wrong and that I need more help. Her response, and I think it was just out of frustration, was dismissive. She said: “I am not going to do another biopsy. There is nothing wrong with you. This is just stress. I am going to give you some names of other gynecologists in the area that I think would be good to work with, but you don’t need to see them for a year.”

I thanked her for all her care and was not terribly reassured. I thought perhaps she was right, but I was not any more stressed than I had ever been. OK. I am not that kind of person. I am usually very healthy. The more I thought about it over the next couple of days, the more I felt that something was wrong.

I decided to take myself somewhere else. I did not go to the people she recommended. I went to an academic institution where I worked because I live in Bellingham, which is 70 miles north of Seattle, but I worked in Seattle and lived there during the week.

She was very alarmed. She said I should have had this polyp removed a year ago. We really needed to do a more invasive procedure to find out what was really wrong. As it turns out, I had endometrial cancer.

As you know, the prognosis for that is dismal if it spreads beyond the uterine wall to stage two. Only 25 percent of those people are still alive in five years. Fortunately, I was still stage one, but it had been going on at least a year. Had I listened to this doctor, I probably would not be talking to you here today because that was more than five years ago. I am very fortunate, but I listened to my intuition. As a physician as well, I knew this was not just stress.

However, there are people out there who are not medically sophisticated, or they get intimidated by their physician. They think it is all in their head. They decide to ignore it because the doctor said they could ignore it.

That was the story that I wrote. In my book, I combine it with another story of another patient who was pretty remarkable as well with a neurologic case. Mine was a gynecologic case. My message really is that physicians are not necessarily doing this out of malice. I think there is a frustration the physician feels as well when they think they have done everything and cannot figure something out. Listen to your own intuition. If you are not satisfied or feel like something is wrong, advocate for yourself. Ask the right questions and go see someone else for another opinion if you are not happy.

Kevin Pho: When you went to see that first gynecologist, your longtime gynecologist, and you had another episode of postmenopausal bleeding, what would be the response that you would have liked to receive from that gynecologist rather than what really happened? What would you have liked to see happen?

Carolyn Larkin Taylor: I realized her situation. She was closing her practice in a couple of days. I would have liked her to say: “I am sorry this is recurring again. Maybe we need to look into this again, but I do not have the time because I am leaving. However, I think you need to be seen right away.”

I would have liked her to refer me to someone right away and say that I needed to be seen because she could not handle it at that time in her career. Instead, she said it is all stress. Saying “it is all stress” was not the correct answer. I am not going to do anything further about that specific comment, but it was wrong of her to say I did not need to be seen for a year when she was not taking over my care and was leaving. That is what I think. I think her saying it is all stress and putting me off for a year totally dismissed my complaints. She knew that complaint was unusual because she only saw me once a year for routine follow-up. That was the wrong thing to do.

Kevin Pho: Now, of course, we do not really know what she was thinking. But if we were to speculate, do you think that she was falsely reassured by doing those tests previously since she did do the pelvic ultrasound and an endometrial biopsy a year ago?

Carolyn Larkin Taylor: No. I think she was reasonably assured the first time. Then, when I came back the second time, she did another biopsy. As I understand it, and I am not a gynecologist, the appropriate response when there was a polyp seen on the ultrasound was to do a hysteroscopy. She did not do the ultrasound until the second biopsy six months later. She should have removed the polyp rather than just doing an in-office uterine biopsy.

Had she done that, it would have been diagnosed then. That is the procedure that occurred when I went to someone else. She said right away that I needed this immediately. She was going to get me on the books that week for a hysteroscopy.

Kevin Pho: As you mentioned, if she was just transparent and honest saying that her practice is closing in a couple of days and you need to see someone now, that would have been a more reassuring encounter from your perspective. Correct?

Carolyn Larkin Taylor: It would have. Yes.

Kevin Pho: In your article, you wrote that sometimes medical gaslighting does not need to be so explicit. It could be very subtle. It could be a smirk. It could be a sigh. Tell us why these nonverbal cues can sometimes be more damaging than explicit, dismissive words.

Carolyn Larkin Taylor: I think our patients are very tuned into our body language. Today, we are in this difficult situation where we are almost forced to be typing while we are doing an interview with a patient because there is just so little time, and we have to document everything in the EMR. However, patients are not typing. They are looking right at you. They are very tuned into the situation, and they sense what you are thinking about them.

If you just kind of smirk, roll your eyes a little bit, or if you are in any way dismissive, I think that makes them feel small. You are marginalizing and minimizing them in some way. They think that maybe they are complaining too much and should just not speak about it.

Some people are very questioning of their physicians. Other people will follow everything you say. You have to really treat every case like it is an individual case and understand how they are feeling. There is a lot of healing that goes on, not curing but healing, by talking to your patient and by listening. Perhaps you can put your hand on their shoulder to console them if you are giving them bad news. There is a lot that goes on in the doctor-patient interaction that I feel we are losing today with the electronic medical record and the demands that are put on us.

Kevin Pho: Now, you are obviously a physician yourself. What kind of advice do you have for people who aren’t physicians and have that nagging whisper in their heads? You alluded to this earlier about getting a second opinion, but like you said, some patients are 100 percent trusting of their physician. Tell us the type of advice you have for these patients who are trusting of their physician but may have a little bit of that nagging whisper thinking it may be something more.

Carolyn Larkin Taylor: My advice to them would be this: It is not physician malice. It does not mean the physician isn’t a good physician, but sometimes it is a busy day, and they are frustrated with not being able to solve your problem themselves. You can question them and just be honest. Just say: “I still have this nagging feeling that something is wrong that we are missing here. I would like you to explore this with me, explain to me why it is not serious, or possibly refer me to someone else just so I can feel reassured.”

There is a way of saying that without losing that relationship. I think patients are afraid of that. I think they are a little bit afraid of losing the relationship they have with their physician. If they question them, they fear that might happen. I think a good physician is going to listen and not break off a relationship because a patient is questioning. Your own health is the most important thing.

Kevin Pho: Now, of course, this story comes from your book, your memoir. It is titled Whispers of the Mind: A Neurologist’s Memoir. For people who read your book, just tell us some of the key themes that you want them to come away with.

Carolyn Larkin Taylor: It is a book where I want the readers to come away with the fact that it deals with courage, grief, and hope that connect us all. We are all more alike than we are different. It is an example of the resilience of the human spirit. Most of these articles serve as examples of that. I deal with individual patient stories, which I think teach us more than just talking about a condition.

The universal themes that I deal with are addiction, especially the fact that addiction is a brain disease and not a personality flaw. I also cover death with dignity, loss, and grief. They are some of the main themes. I tried to put a few funny things in there, but for the large part, these are sad stories. However, they usually exemplify some hero, which is the patient, and how courageous they are.

I think it is a book that can appeal to most. Most people can find something in there that they can relate to, even if it is just a concussion in your athletic child. How do you handle that? What do you do, and should you question the coach when they put them back in? I deal with the whole variety of things that I saw as a neurologist.

Kevin Pho: And in this particular story that happened to you, this episode of medical gaslighting, how did that change you yourself as a physician when you saw patients?

Carolyn Larkin Taylor: Every case and the different cases that I write about in this book transformed me in some way. I learned from all my patients, every one of them. This made me much more attuned to the fact that I never want to make a patient feel that way.

In my practice, what I say to patients when I am frustrated and I have done everything is this: “I am open to the fact that I could be wrong. Let’s maybe give this a little time. If it doesn’t get better or gets worse, we will do more tests. Or, I am happy to refer you to someone who knows more than I do.”

I have always felt that way. I have always felt that I do not know everything. I have always been happy to refer someone just to get another opinion, or I will call them up myself and just talk over the case because the end result is that the patient is the important one here.

Regarding my ego, I want to make sure that I have done everything that I can, and I want them to feel validated. I think it is very important for a patient to feel validated. As physicians, we are often treated a little bit better when we go to see a physician because they know what our training is. I thought this was a particularly good example because not only am I a physician, but I am another woman. I just felt like that was an unusual way for a woman physician to treat another woman physician. Again, I knew her for 20 years. I think she was just rushed that day and in a hurry, and I was the last problem she wanted to be faced with. I understand that as well as a physician.

Kevin Pho: We are talking to Carolyn Larkin Taylor. She is a neurologist, and today’s KevinMD article is “How medical gaslighting almost cost me my life.” Carolyn, let’s end with some take-home messages that you want to leave with the KevinMD audience.

Carolyn Larkin Taylor: My take-home message is that everybody needs to advocate for themselves. You need to listen to your intuition. If you are not satisfied or you are still having symptoms and you do not have an adequate explanation, you are not going to sever your relationship necessarily with your doctor by questioning them. I think your doctor, if he or she is open, is going to appreciate the fact that you are open and honest and question their decisions.

Kevin Pho: The book is called Whispers of the Mind: A Neurologist’s Memoir. Carolyn, thank you so much for sharing your perspective and insight, and thanks again for coming on the show.

Carolyn Larkin Taylor: Thank you. My pleasure.