Medical gaslighting is when a provider shirks a patient’s concerns and leaves them without a diagnosis or treatment plan.
Unfortunately, this experience is all too common for patients, especially women.
So, how can patients tackle the problem and get the care they need?
In this episode of CareTalk, David E. Williams and John Driscoll meet with guest Ilana Jacqueline, patient advocate and author of “Medical Gaslighting,” to discuss why medical gaslighting occurs and what patients can do to get the care they deserve.
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Episode Transcript:
David E. Williams: Medical gaslighting, when a provider pays short shrift to a patient's concerns and leaves them without a diagnosis or treatment plan, happens to women a lot. What can patients do to tackle the problem and get what they need?
Hi everyone, I'm David Williams, President of Health Business Group. And I'm John Driscoll, Senior Advisor at Walgreens. John, you know, I'm truly grateful for all that you do and not just in this podcast, but for all your community and charitable activities too, and for telling me what I need to hear, even if I don't always want to hear it.
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That's BetterHelp, H E L P dot com slash CareTalk. Well, today's guest, Delana Jacqueline, is a patient advocate and author of the new book, Medical Gaslighting. How to get the care you deserve in a system that makes you fight for your life. Ilana Jacklin, welcome to CareTalk.
Ilana Jacqueline: Thank you so much for having me. I'm a big fan of the show.
John Driscoll: Outstanding. So Ilana, I first got to thank David for his overly gracious introduction and, and, and, and gratitude. But I, I think I just want you to know that we are very grateful that you have been willing to share your kind of tough medical journey and, and turn it into sort of a fighting patients survival guide to how to deal with the, the battles that often patients have to deal with in order to get the care they want.
But how did you maybe give us a little bit of your personal background of how you got to tell this story?
Ilana Jacqueline: Sure. So for me, I experienced medical gaslighting from a super young age. I have I grew up With an undiagnosed disease. And I was kind of that, like, you ever watch Charlie Brown, you know, like the kid that's followed around by like the dust cloud and he's like always sick, always sneezing?
That was me. I was like the human walking Petri dish. And every time that my mother took me to the doctor, they'd just be like, oh, she's a sickly kid. You know, some kids are just like that. Even though I was constantly sick, one infection to the next. And They just were constantly telling her there's nothing wrong, don't worry, but I was on antibiotics almost my entire childhood.
And then when I was a teenager, I started advocating for myself and going to the doctor by myself and really realizing that I was just being dismissed again and again, trying to figure out what was wrong with me. So when I graduated high school, I was exhausted and I was like, I'm going to take this year and I'm going to figure out what the problem is.
I cannot go into adulthood, continuing to be ignored by my doctors. And so that's what I did. I spent the whole year just seeing specialists after specialist. And finally, I was diagnosed with a rare disease called hypogammaglobulin anemia, which is a primary immune deficiency disease. And it basically means I'm missing a part of my immune system that helps me fight back against infections.
And having that diagnosis, That was such, such a revelation to me on realizing that I knew my body and, and that I knew what I needed. And I was hoping kind of that would be the end of my journey of being medically gaslit, but it was not. It continues to be a journey for me and for so many other women. In fact, I think in my 15 years of patient advocacy.
I've yet to meet a patient who didn't go through a situation where they were initially ignored or dismissed by their doctors. It's incredible.
David E. Williams: What is the term medical gaslighting? I've got, I've got a general understanding of it, but what is what does it really mean?
Ilana Jacqueline: Sure. So it's, it's basically this idea that you go into the doctor, you tell them what's wrong with you, and they're just like, Don't worry about it.
It's a lot of just don't worry about it. It, you know, your blood works all normal, which is such an interesting phrase, because how much blood work did you do like to possibly figure out that everything in my body was normal? You know, your tests are all normal. It's probably stress. You know, if you just went home, drank a glass of wine, let your husband take you out on a date kind of thing.
That's what we, that's what a lot of women hear. It's, it's basically just a response to patients that whatever is ailing them is just this ambiguous mental health issue. And so, so many patients are not getting the diagnostics that they need to resolve these issues that are happening with their health and the consequences of that.
are so much more extreme than what people might think because when a doctor says, Oh, nothing's wrong with you. You're fine. You're like, Oh, I overreacted. It's me. I'm just a silly, silly little girl. But the reality is that it's so much more than just making you feel ashamed. You can completely miss a diagnosis.
Diseases can progress and it become a, it can become a very dangerous, dangerous. situation.
John Driscoll: Well, you, you were dismissed. You were, you were told everything was normal and the facts proved otherwise. You know, one of the things you cover, I think really well in your book is how this feels like a consistent theme for women in particular.
Do you want to talk a little bit about the, the, just the, the raw gender bias you found in your, in your own case and then kind of what you, what you've found through your research?
Ilana Jacqueline: The issue of women not being taken seriously about their own bodies literally goes back to the beginning of time. And it's gone through all these different names and, and idioms, but it's hysteria.
It's telling women, you know, you're being hysterical or it's had so many different monikers over time, but it really co comes back to this. consistent idea that women don't know their bodies and, and women are, are people who just over-emphasize pain and can't give a accurate narrative of what's going on in their bodies.
And a lot of that is because of how we are taught to interpret pain. I talk a little bit about Growing up and just kind of our periods being this marker of what should be an acceptable amount of pain. And for so many women who live with things like endometriosis or fibroids or Hashimoto's, like all these different diseases, the idea that your period is, is no big deal.
That's really what we compare. So much other pain too. So that's why women have their appendices burst and they're like, well, I had no idea because it wasn't technically that painful based on what I've been told is pain.
John Driscoll: Well, and I think one of the other things that you articulate pretty well is, you know, sort of a five, eight white male is sort of the entire medical system designed for that.
But I, this has real consequences as you point out in your book, you know the research has shown that women are, are diagnosed with cancer two and a half years later. than men. So we kind of have to empower anyone who's got bias that we've, that we see as this profound, particularly women, to give them the tools to, to, to push back against a system that's is not taking them seriously.
And it's kind of closing the door or at least delaying systematically, a lot of the care they need.
Ilana Jacqueline: Absolutely. I mean, like I said, it's so much more than just being made to feel silly and and to feel ashamed. We have seen disease progression. We've seen infections. This generational misunderstanding of disease where, you know, again, like if your mother has a disease and you inherit that disease and she's been told it's no big deal.
It's not it's a nonissue. You learn you learn that that's well, it's technically a nonissue. So you're not really listening to your body. We also see a lot of this in the book. I tell the story of a couple of wonderful patients who were brave enough to share their stories with us. And they're deeply personal.
And many of those stories, patients, patients, have just experienced the absolute most severe, most insane consequences of medical gaslighting, including, you know, having to have an amputation you know, cancer becoming well past the point where it's easily cured. And I, and I do share my own story in there as well about at one point in my life, life, I had a central line to treat my disease and I had sepsis and I had to have that removed.
And it was done while I was wide awake and kept telling the doctors, Hey, I can feel that. And being told flat out, no, you can't, which was, Which was a perfect representation of what, what is happening to women. But yeah, I know. And certainly in the moment, it was insane. And certainly when I think back on it, absolutely crazy.
David E. Williams: So when I picked up the book and I saw, you know, the cover and the title, I know it'd be fairly hard-hitting. So I was prepared for that when I opened it up. But then I see the first chapter is called Why We Need a Combat Guide. So it's like, it gets pretty strong from there. So why, why do we need a combat guide?
Ilana Jacqueline: Because women are dying. I mean, that's really, that's really it. And I think that we have all these fantastic resources on women's health and, and the history and, you know, that books and resources that this has happened confirming it, which is great. We need that, but not a lot of information on what to do about it.
In fact, if, if you go on patient forums, anywhere on the I'm, I'm usually on Facebook, a little bit of Reddit. Every other post is medical gaslighting. Every other post is I'm being ignored. I've been ignored. I'm scared to go back because I've been ignored and so that really is one of the reasons why I was like, we need something concrete.
Like, we need the words to use to go out there and have these conversations and that's really, it's something I've been thinking about for almost a decade. Where I would, you know, I would go to a doctor's appointment, I would prepare, I would do all these things to make sure that I had my narrative straight, that I was bringing in evidence, and I really wanted to see, like, what works and what just doesn't work.
Because we really do hear the same advice over and over and over again, and I really wanted to write. Examples of conversations, examples of like quotes that that were so common that patients were hearing all the time and how to respond to them. And so that's, that's what I wanted to fill this book with was just a literal combat guide, like defense moves.
John Driscoll: Well, I think what's really, what's really powerful A, the examples are super painful. To read and listen to because there were clearly other paths that these patients might have, may have been provided, supports that have been given, but you're sort of, your call to action is that every patient has to assume they're on the defensive and every patient needs to go do a level of preparation to, to prepare for the possibility of not being heard.
To assume that they need to know, know, know, know themselves and trust themselves. And third, that they really need to get the data. And I, I, I think that's, I think what's, what's, what I love about your book is it's super practical. What do you do before an appointment? How do you think about communication?
And I, I just think that if you think about the list of I, of, of, of calls to action that you, that you, that you put in the book, what's the most important thing for patients to think about when, when they've been, they've got a, a, an, an undiagnosed condition, but they know something's wrong?
Ilana Jacqueline: I think the most important thing to know is that, and I, I did a list of affirmations that I think this one has really stood out.
The most important thing to know is that this is one doctor that you're about to see. It's one doctor and you're going to see many doctors. One doctor may not have the answer for you and that's okay. It's, it doesn't mean you don't have an issue. It doesn't mean your issue is not real. It doesn't mean the answer to your issue is not something that you can find.
But really to remember. That, you know, this is, this is one disappointment and it's a journey. You have to keep at it. You have to continue seeking care, even when it's traumatic, even when it's hard, because if you don't, if you don't, you will always be unwell.
David E. Williams: Are there some signs that a patient could recognize about, you know, medical gaslighting?
I think people have the awareness now and it may be a common, but shouldn't be happening every time. And some of the natural, you know, back and forth is, is going to be there. But how, how can a patient tell? If there's gaslighting that's going on in the first place,
Ilana Jacqueline: I think that one great way to tell is to look at what the treatment plan is.
So if if a doctor, here's everything that you have to say, and then responds back, we're not going to do anything. Essentially. I mean, they're not going to say in plain words. We're not going to do anything. But a lot of time that's that's phrased as wait and see. But if you're starting to hear that there is no plan.
That's that's a pretty big red flag. Yeah. And, you know, I wanted to talk as well about the language of medical gaslighting and the tone of it, because a lot of people, they see the words. And again, I say defense against medical gaslighting. And, you know, you're thinking a very, like, vicious combat scene to me in my head.
It's always that way. But the reality is that the tone of medical gaslighting. isn't always like this brash violence kind of challenging tone. It can be very comforting. It can be very caring. It can sound like a doctor, you know, just, just trying to make you feel better and the kind eyes and the kind words, but essentially saying, I'm not going to help you.
Like, that's really what they're saying. So if you're able to recognize that you're going to be able to see the other red flags of, you know, the language that they use or. Other steps. But I really think that's, that's the key is to see are, is there a plan for me? Were we ever going to do anything to solve this problem or were you expecting me to ignore it?
And hope that I feel better.
John Driscoll: I guess, Alana, what was the moment when, in your own, in your own journey, was it that, that point post-high school that you realized you needed to take control? Or was it, was it, was it later in your, in your, in your battles around sepsis and that crazy surgery? What, what, what, what was the turning point for you personally where you said, Hell no, I'm not going to take it anymore.
Ilana Jacqueline: Birth. I'm really a hell-no kind of person. But, but re I think that there were, gosh, there were just so many moments throughout my life where I had the feeling that something was wrong. I had the feeling that I wasn't being taken seriously. I felt shame, like I knew what was happening, but I didn't have the words for it until I was older.
And for me growing up with this undiagnosed illness. I never had the words. I never had the words to reach out for support to look for answers because I didn't really, I didn't classify my, I didn't even classify myself as undiagnosed. I was just sick, sickly sick a lot. I didn't even, you know, kind of process the term chronic illness until I was in college, until somebody else was introduced to me.
And she's like, Oh, sounds like you have a chronic illness too. And I was like, Oh, yeah. Yes, I do. That is what I have. And so in, in kind of feeling like I needed to fight back, I was stuck. I was stuck in trying to fight back until these words came to me until the phrasing medical gaslighting came to me.
And I feel like once, once I, I had the idea of that. And once I was able to define it, I was like, Oh my God, like it gave me so much confidence to be like this. This is what's happening. Like to have the words gave me the ability to fight back against it. And to realize that I had something to fight against.
David E. Williams: So, you know, the, the discussion here in the book is about the combat guide and the handbook for someone that's, that's facing this now, the book will be read by. Other folks as well, let's say, read by people who are running hospitals or training physicians or other other sort of providers. Are there some things that can be done on a more systemic basis that would make this less of an issue, or at least to bring gaslighting to the attention?
Not just of the individual who's. facing it, but who may be doing that inadvertently. I know people, probably some people go into politics because they want to gaslight people. I'm not sure that many people go into medicine because they want to gaslight people.
Ilana Jacqueline: Yeah, no, for sure. I think one of the main messages that I wanted the rest of the community, cause I agree.
I did want this book to be more than just a patient guide. I really wanted physicians, different healthcare providers, Anyone who worked in the healthcare business to be able to see this and get something out of it. And to me, the main message of that is we need collaboration. Like, we need to listen to patients and hear them.
And the other issue is medical bias and really taking stock of, of how we look at patients and medical inequities and, and. not viewing every patient with a one-size-fits-all frame of mind. I think that there is a lot of continuing medical education that needs to happen around that. And I think that one of the things I was really worried about was, oh no, people are going to look at this book, the title, everything, the tone, and think this is a slam job against doctors.
Like this is anti-doctor. And it's absolutely not. It is absolutely not the message at all. The message is collaboration, that we both have something. Useful to offer here. And if we can find ways to set that up and to let that be the guiding force that gets us from, you know, illness to health, we're going to be in a much better place.
And that is the feedback that I've gotten from. Many different healthcare providers, including the ones that were experts in the book were able to give to me was, you know, this idea of like participatory medicine, listening to patients, implementing, having conversations, making sure nobody walks out that door with questions unanswered is a really, that's the way forward.
John Driscoll: So let him maybe speak a little bit just briefly about the pain management points that you made that I think are also quite powerful because pain management is such a big issue for patients and for honestly for clinicians. And what your perspective is in there and what you'd like people to. to think about as they deal with, you know, as pain management is one of the most common chronic problems in, in, in America.
Ilana Jacqueline: It certainly is. And I've had my own experiences with pain management, which I, I wrote about in the book. I've been in palliative care the last couple of years for issues alongside my disease and it's rough out there. It's rough out there because of the opioid epidemic. It's rough out there because we have such a general misunderstanding of, of pain and women's pain.
And how we might treat things like that. And I think that patients as well, especially those with chronic illnesses and chronic diseases are, are hoping to get to a place where, you know, absolutely no pain. Like this is, I mean, obviously everybody wants that. I don't want to be in pain, but there is no education on pain.
kind of the realities of pain so that when patients walk into a pain management doctor's office or neurologist or really any physician that's treating their pain they don't, they don't fully have the expectation of what's going to happen. They're not entirely aware that there is an entire new protocol to pain management.
These days, you know, we have pain contracts. We have just guidelines on what can be prescribed. And on top of that, we have all of these new medications that have come to market that Patients just have no, they don't have any awareness or understanding about that. So there really has to be a relationship between the doctor and the and the patient that is open that is.
Holistic in the sense that it really looks at the patient's entire life story and that gives them a plethora of tools. That's not just you know, medication, narcotic pain medication, but potentially other medications as well as different lifestyle changes and just things that, that, that counsel them.
on, you know, on pain management from, from just the very beginning, because we don't, we don't have that expectation of, of walking in it and, and knowing what we're doing. And I had my expert, Dr. Alope Patel, who is a pain, a pain management physician specializing in women's pelvic pain. She had a great way of describing it and talking about how You know, pain is a scream.
I mean, it's something that is so hard to ignore. It's kind of like a scream in your head. And her goal with her patients is to help them understand that the pain, it may not be completely silent ever, but it should be in terms of quality of life. It should be a whisper, that is low enough to help you get through your day.
And I think that was such a powerful way of putting it. And I, I think, I hope that the, you know, the tools that she gave in the book that she uses with her own patients is something that will translate to the readers and give them something to, you know, even if they're just starting pain management, to kind of have a starting point to understand what's going to happen.
David E. Williams: Well, Ilana, we have time for one more question. And my question is about these patient surveys. You know, whenever I go do anything, I get a survey. medical procedure or something. There's a lot of detailed feedback that's sought from the patient. Do these sort of performance reviews or feedback from patients, did they have an impact on gaslighting?
And just curious about that overall. And then from the patient perspective, you know, is that a good mechanism to be able to, you know, communicate back to your provider?
Ilana Jacqueline: I wish I had a more optimistic view on the surveys, because I feel it is similar to checking in early for your appointment and having having your allergies removed.
And then the next visit, they come back and they're there. The wrong ones are there. I mean, and, I think that there are so many ways to provide feedback and that we should be providing feedback. I think that's really important. Surveys are one way of doing that. You can also do online reviews and you can do them anonymously or you can do them by your name.
Star ratings, I think all of that is helpful, but I think that when we have any opportunity to use The words, you know, not, not just this ambiguous. So it wasn't a good appointment. It was a bad appointment. What happened? I think it's really important to be specific about what you as a patient felt. Was wrong.
What, what you felt wronged by the behavior the language, I think it's important to provide that feedback because I do think that feedback helps. I think that's the The only way we're going to improve is, is to have that conversation in as many formats as we possibly can.
David E. Williams: Well, that's it for another episode of Care Talk.
Our guest today has been Ilana Jacklin, author of Medical Gaslighting, How to Get the Care You Deserve in a System that Makes You Fight for Your Life. I'm David Williams, president of Health Business Group.
John Driscoll: And I'm John Driscoll, senior advisor at Walgreens. If you liked what you heard or you didn't, we'd love you to subscribe on your favorite service.
And thank you Alana for for such an inspiring and empowering talk.
Ilana Jacqueline: Thank you so much for having me.
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