Medical Gaslighting: What It Is, How to Recognize It, and What to Do About It

Video Transcript

Joyce Griggs: Welcome everyone and thank you for being here with us today. We're pleased to have Dr. Alan Feren with us talking about medical gaslighting.

Dr. Feren has over 50 years of experience on both sides of the stethoscope as a physician giving care and a patient receiving care. A board-certified surgeon and fellow of the American College of Surgery, he was a pioneer in outpatient surgery and co-authored multiple volumes of clinical guidelines for a major actuarial.

Following clinical practice, he served as a medical director for a major health insurer, always, always, always advocating for patients as a priority. He's faced his own medical challenges as well, all of which have been successfully overcome, allowing him to remain clinically active and productive.

These medical challenges included emergency life-saving surgery, multiple failed spine surgeries with months of confinement, multiple joint replacement surgeries, and most recently, cancer. But despite these personal challenges, the knowledge gained from his personal experience continues to deepen, and he draws upon these experiences to help people through their health journeys. And I know he's helped me through mine.

It's both in his DNA, and it gives his life great meaning and fulfillment. And you can learn more about Dr. Feren's work as a patient advocate at mypersonaladvocate.net. That's mypersonaladvocate.net.

I'm really delighted to have Alan Feren here today to talk to us about gaslighting. It's all in your head, right? You're overreacting. So medical gaslighting, what it is.

Alan Feren, M.D.: So gaslighting is a pretty interesting issue. A lot of people don't know where the term comes from. In fact, recently my wife asked so, "What is gaslighting?"

And actually looking back in my history, I realized that I was gaslighted way back when with one of my major spine surgeries that ultimately failed and I kept on complaining of pain and the doctor kept on downplaying it.

So gaslighting actually comes from a play back in 1938. Subsequently made into a movie in the forties. The title of the movie was called Gaslight. It's where the husband, the protagonist, was trying to convince his wife in order to obtain money that she was imagining things and going insane. And the way he did this was by turning down the gas lighting in their place. This takes place in London in the 1800s. And so that's really where the term came from.

It's basically a form of psychological manipulation. To my mind, I have made it akin to bullying because it's the exertion of control. And it results in self-doubt and disempowerment, loss of self-esteem, destroys your ability to be your own best self-advocate. It also can lead to anxiety and depression, and those things really impair your ability to self heal.

I also think that it's a power differential issue between the doctor and the patient where the doctor really is the person who is in the power position and can belittle and minimize your signs and symptoms.

What's interesting is that it affects females much more than males and particularly people of color, particularly immigrants, the very young, and the very old, as well as the LBGTQ+ community. So there are interesting really facets aboutgaslighting that have come to light.

I think that one of the most important things is particularly for the autoimmune group, because of the disparate kind of wide-ranging symptoms, it's very hard for physicians to kind of get their, their hands around what the diagnosis is. We as physicians tend to like to have things neatly packaged where everything kind of fits into a differential diagnosis. So that's one of the challenges.

And of course, in today's world, we have 10-minute visits. We've got the electronic medical record, which I think is a major distraction. Fortunately during my years of practice, it was not as prevalent as it is currently, but these are things with the amount of time it's available and the office distractions, it's very hard for people, particularly with complex medical problems, of which autoimmune is a major factor, creates a problem.

Joyce Griggs: Katie, did you have a question for Dr. Feren?

Katie Seymour: Yes, I sure do. I'd love to know more. First of all, thank you so much for that history of gaslighting. I did not know that, and it's kind of fascinating to hear. I think oftentimes, for our audience I should say, we don't know we're being gaslit. I'd love to know some of the key signs of gaslighting and really how we can recognize that moving forward.

Alan Feren, M.D.: I think one of the first things is the eye contact issue. It is a little bit complicated because of the distraction, as I mentioned earlier, with electronic medical records because doctors are focused on filling out the the fields so that the, they capture the, the billing information.

Just as an aside, many people don't realize this or are not aware of it, but electronic medical records or EMRs, which I will usegoing forward, they were developed as a, as a result of the need to capture as much billing information as possible. And so things have been kind of jury rigged to meet the clinical needs. So as such, there are lots of fields that have to be filled out. And your doctor is constantly looking at those fields and filling in the information.

So, but when your doctor is not facing the computer and entering information, not looking at you during your visit is one of the key things.

The continual interruption, not allowing you to really tell him or her what your signs and symptoms are. Or when you do provide those, they downplay or minimize. I call it just trivial, trivializing.

I think a classic example would be, "Are you sure you've had those symptoms that long? Are you sure that they're that severe?" Or "Come on now, I really couldn't have lasted that long." They may suggest to you that perhaps you're being emotional or maybe you're exaggerating. If they seem to be condescending in the way they are responding to you.

Another issue which was recently reported actually through the New York Times is if your physician refuses to appropriately order key laboratory or diagnostic imaging studies for you, or they order what I call tangential studies, these are studies that don't seem to address what your signs and symptoms might be.

Sometimes the physician may say to you, "Don't raise your voice to me. It's, you know, you're getting a little bit huffy here." It's the criticism of your voice tone.

If you are asking, "Can you consider sending me to another, specialist?" And they are kind of putting obstacles up to prevent you from doing so.

For those people who have a weight challenge, they're either overweight or obese or even just disabled, sometimes a physician may say, you know, I think these, that these symptoms are related to you being overweight, or, you know, if you took off some, some weight, you might be able to have less pain, less joint problems.

Todd “TJ” Keitz: Those are really good points. I don't know if you know much about why I'm here today, but my mom has an autoimmune disease. And before I got involved, there's a good chance she was gaslit for the previous at least year, if not more, until she had an acute episode and it just crashed. She has an autoimmune disease called scleroderma. She has systemic scleroderma, and it wreaked havoc on her, I'm sure well before she had an acute episode.

You mentioned earlier about autoimmune disease and gaslighting. We know that's true. Can you tell us more about the impact of gaslighting on the person's overall health and care?

Alan Feren, M.D.: Yeah, I'm glad you mentioned this issue with delay in diagnosis. There was an interesting study not that long ago that looked at patients with lupus autoimmune disease. They found that nearly half, it was 47 percent, had a delay up to about six years before a, a complete final diagnosis was established. And in that same group, 76 percent of those people that were in this fairly large study had at least one misdiagnosis leading to significant delays in their care.

So for autoimmune disease, one of the major issues besides the, the delays is that it's costly in terms of the disease progression and damage which becomes irreversible as time goes on. So this, this higher rate of damage and permanent damage leads to fatigue, not only physical fatigue, but mental fatigue going back and forth to doctors who seemingly are unable to determine what their diagnosis is.

And the key issue really is a lower long-term quality of life. It's a shortened, shortened life and poorer quality. So these are things that really are important to understand about delays.

I recently read a study that talked about misdiagnosis or errors. And it happens in one in every seven encounters. Seems pretty high to me, and I will have to really validate that study, but it just indicates to me the need for having better communication with physicians.

I should mention at this point that we have put together a little communication sheet to really help people who struggle with their relationship with their doctor and establishing a, a good partnership with them. So these are things that you can use to talk with your doctor when things are not going in the right direction.

Like, "Something's different and I know it's not right. Maybe you can help me understand what this is. I appreciate your expertise, but let's start again because I just don't feel like you're listening to me in the way that it is needed."

So there's a whole list of these types of communication things that are going to be posted on the My Care Friends website, which you can access at a later time.

Joyce Griggs: Yeah, yeah. It's really important to have these communication tools. We were just having a conversation, you know, about how can we have better conversations with our, with, with the doctors, because sometimes we don't have a choice. Sometimes we have to stick with the doctor, even though we'd really like to change doctors because of these things that you're outlining and perhaps not a great relationship.

So I think, you know, this communication tool is an important set of concrete, communication pieces that people can use and maybe take someone with you, especially if you're having a difficult conversation repeatedly with the healthcare provider, be it a doctor or a nurse, to take someone along with you, who can help to navigate that conversation, because it is, it is the exertion of control, as you said, and it's, you know, it is a wrestling for that control, and ultimately, it's your health, your life, and it's, you know, it's unfortunate, but sometimes we have to go to different lengths in order to get what we need.

Alan Feren, M.D.: Those are good points and I would add, it's also your body. It's the only one you get this time around, as far as I'm aware. So, it's important to take care of it.

Joyce Griggs: So, now we have a sense of what gaslighting is. Especially for women, we know this is an issue that happens to women a lot, and we know it can happen to men, as well. But the frame of reference for this program is specifically the experience of women. So I'm just wondering if you can talk a little bit about what we can do, what are some tips for women to prevent this gaslighting in their care.

Alan Feren, M.D.: I think the first and most important thing is to really know your family history and expand this beyond the immediate family. Know what's going on with relatives, know what their signs and symptoms were. Sometimes when looking back and say, "Oh gee, you know, maybe mom had kidney failure and they didn't really know what the cause was." Or "Gee, you know, my mom complained of just chronic joint pain all the time and no one could ever figure out what that was. They just said it was rheumatism." So things like that are important to really expand and know what your family history is and to validate it with other family members. Sometimes your memory of what a parent or aunt, sister, brother had may not be accurate. So ask other family members to say, "Is this your recollection of what was going on at that time?"

I cannot say enough about journaling. Journal, journal, journal, and do this not over weeks, but over months and sometimes years, if necessary. Some of these symptoms start very kind of insidiously and then ramp up over a period of months or years before any action is taken on the part of the patient.

Make sure when you ask questions of your healthcare professional, that they answer them and ask them until they're all answered.

As Joyce had mentioned earlier, always bring someone with you to advocate, if possible.

You can also ask to record. Some physicians will not allow you to record, but I think it's doesn't hurt to ask. A good friend of mine always says, you know, celebrate the nos. So, and not the N O S E type of nose. So, it's important to, to ask to record.

Identify ahead of time, what are the most pressing issues that you have? Don't have a complete laundry list because you're not going to be able to get to all of it. But what are the most important things that are going on in your life? Make sure that you accurately report what those are.

Confirm what the next action steps are going to be. So when the doctor says, I think you have this or that or the other thing, make sure that, okay, so what are we going to do? How are we going to do this? Know what the treatment plan is. Know if you can follow that treatment plan. Sometimes some of the things that are asked of you have obstacles preventing you from doing so. And it's important to problem solve those obstacles before you leave that office. Make sure you have that done.

Get multiple opinions, particularly with the immuno, autoimmune disease because it is a very complex situation. And sometimes just a single opinion is not always the best opinion.

Find a physician with whom you can trust and partner with. And we've done sessions together that talk about how to partner with your doctor. And I think that that's really a key issue here, because having these tough conversations and being able to communicate effectively is necessary to have someone who's willing to listen to you and be your partner. And I think since autoimmune disease is a long-term issue, it's important to have somebody that you can partner with for that duration.

I think another important point is sometimes we talked about that, that mismatch between the, the, or the power mismatch. You're sitting down, your doctor is standing up. Make sure you ask your doctor, "Please sit with me so that we can discuss this." So you are on equal levels. You are your eye to eye. And I think that's important.

If you happen to be in your gown, it would be useful, I think, to ask your doctor if you can first take a couple minutes and get changed before you have that conversation because you're very vulnerable if you've been in any type of treatment gown with everything flapping in the breeze. So I think it's a good idea to, to consider that.

Joyce Griggs: Yeah, I think that's a great point. And one of the things one of my doctors always did was would come in before I put on the gown. We'd have a discussion, you know, figure out all the things I wanted to talk about. Then I would put on the gown and we'd have the examination. We also would kind of talk through things and it was really helpful. And I thought respectful. And he always sat. He always sat, you know, so that we could look eye to, we could look eye to eye. So I think these are really super important.

I want to say that on the United States of Healthcare website, if they go to our video page, you'll find a number of videos that we've done with Dr. Feren talking about some of these things in more detail, so there's a lot of deeper information as you want to go, go, go into these things.

But, I think the bottom line is we do not have to accept gaslighting. It's real. It happens. If it's happening to you, we validate you. It's happened to us and these are some things that you can do so that work through a very difficult situation.

Katie Seymour: Thanks Joyce. Yes. I, I definitely second that. Well, Dr. Feren, this has been great. We really appreciate your incredible expertise. You shared so many great tips, including the communication sheet, which we'll definitely share on our My Care Friends website. Is there anything else or any additional tips that you would like to add before we close out?

Alan Feren, M.D.: Yes. I think it's important that if you're having an adverse experience, let's say in a hospital setting, there is an advocacy staff that's generally available. Contact them. Let them know what your issues are to make sure that you get the care that you need and the care that you deserve. If you're in an outpatient setting, there is something called the Federation of State Boards. And if you're having a situation with a physician or the entire team, you can report them to the state boards.

If you are taking medications that impair your ability to think on your feet or unable to speak for yourself well, make sure you have a healthcare proxy. It's, it's just very, very important.

And just remember, you, you are the expert about your body. And if something is not right, make sure that you speak up and get somebody to listen to you and do a proper evaluation.

One thing that I forgot to mention, and I think it's really important, this whole idea of gaslighting really didn't start for many, many years, medical gaslighting, they didn't attribute it until became a wonderful article written at the New York times that really profiled medical gaslighting.

And in fact, in 2022, the Merriam Webster dictionary named "gaslighting" as the word of the year because it became very popular based on really social media. It's people gave voice to the issues that they've experienced and how they were gaslit. So the medical literature is not full of gaslighting situations, whereas the social media and particularly the New York Times has done a great job of bringing it to the forefront.

Joyce Griggs: Yeah, it's important to think about some of these social media groups, well-run groups with administrators who are healthcare professionals or patient advocates. They are powerful places for voice and for agency.

Todd “TJ” Keitz: I want to jump in with kind of a practical situation. I don't know practical is the right word, but, just to give context to this.

So I mentioned earlier about my mom and I'm sure she was gaslit before I got involved. There's no question. But during this time we've been developing this program, I've spoken with women here in the US and in different countries and every time without fail when I mentioned the term gaslit, gaslighting, they all just, their eyes just open, they start shaking their head and they all tell me stories about how that has happened to them. And that will be an ongoing part of this program with these women who are, they're jumping in to be a part of this because it is such an important topic of how it has affected their lives.

Joyce Griggs: Yeah, it's, it's incredibly, it's incredibly important.

So I just want to say that I'm Joyce Griggs from the United States of Healthcare. These are my partners, Katie Seymour and Todd Keitz from My Care Friends. And we're very excited to be bringing to you this series of conversations on autoimmune disease and women. And we want to thank our expert today, Dr. Alan Feren for bringing us such an amazing conversation on gaslighting, what it is, and what we can do about it.

And please do go to My Care Friends, the autoimmune group, and we will have that communication tool for you. Thank you so much.

Todd “TJ” Keitz: Thank you.