Medical Gaslighting and the Power of Self-Advocacy w/ Ilana Jacqueline

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.

This episode is brought to you by BetterHelp. Give online therapy a try at https://betterhelp.com/caretalk and get on your way to being your best self.

As a BetterHelp affiliate, we may receive compensation from BetterHelp if you purchase products or services through the links provided.

TOPICS:
(0:21) Sponsorship
(1:40) Meet Ilana Jacqueline
(2:21) Ilana Jacqueline's Experience with Medical Gaslighting
(5:51) How Women Experience Medical Gaslighting
(7:34) The Consequences of Medical Bias
(9:54) Why We Need a Guide to Combat Medical Gaslighting
(11:36) How Patients Should Handle Undiagnosed Conditions
(13:26) Recognizing the Signs of Medical Gaslighting
(15:18) The Moment Ilana Jacqueline Took Control of Her Health Journey
(17:14) Bringing Awareness of Gaslighting to Providers
(19:30) Approaching Pain Management as a Patient
(22:50) Do Medical Providers Actually Review Feedback?

🎙️⚕️ABOUT CARETALK
CareTalk is a weekly podcast that provides an incisive, no B.S. view of the US healthcare industry. Join co-hosts John Driscoll (President U.S. Healthcare and EVP, Walgreens Boots Alliance) and David Williams (President, Health Business Group) as they debate the latest in US healthcare news, business and policy.

🎙️⚕️ABOUT ILANA JACQUELINE
Ilana Jacqueline is a speaker, author, patient, and advocacy strategist whose journey to a rare disease diagnosis forced her to confront years of medical gaslighting. Her personal experience as a patient has given her a deep compassion for the challenges women face in the exam room. Yet, it’s her work as a patient advocate that revealed the broader reality: whether a condition is rare or common, women often wait longer to be truly heard by the medical community.

As the author of Surviving and Thriving with an Invisible Chronic Illness, Ilana educates patients on navigating their journeys and building collaborative, impactful relationships with their care teams. Her advocacy on social media, especially around medical gaslighting, has empowered countless patients to take an active role in their own healthcare.

GET IN TOUCH
Become a CareTalk sponsor
Guest appearance requests
Visit us on the web
Subscribe to the CareTalk News

Transcript

0:00

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. And know, November, it's all about gratitude. And along with John Driscoll, there's another person we don't get to thank enough, ourselves. It's sometimes hard to remind ourselves that we're trying our best to make sense of everything. And in this crazy world, that is not easy. Here's a reminder to send some thanks to the people in your life, including yourself. BetterHelp offers entirely online therapy that's designed to be convenient, flexible, and tailored to fit your schedule. Just fill out a brief questionnaire to get matched with a licensed therapist and switch therapists at any time for no additional cost. It's helpful for learning positive coping skills and how to set boundaries. It empowers you to be the best version of yourself. So whether you're dealing with stress, anxiety, or seeking personal growth, BetterHelp connects you with licensed therapists who can support you on your mental health journey. Let the gratitude flow with BetterHelp. Visit betterhelp.com slash care talk to get 10 % off your first month. That's betterhelp, h-e-l-p dot com slash care talk. Well, today's guest, Ilana 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 Jacqueline, welcome to Care Talk. Thank you so much for having me. I'm a big fan of the show. Outstanding. So Ilana, I first got to... Thank David for his overly gracious introduction and gratitude. But 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 turn it into sort of a fighting patients survival guide to how to deal with the battles that often patients have to deal with in order to get the care they want. Maybe give us a little bit of your personal background of how you got to tell this story. Sure. So for me, I experienced medical gaslighting from a super young age. I grew up with an undiagnosed disease. I was kind of that like, you ever watched Charlie Brown, 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, 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 gonna take this year and I'm gonna 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 specialists. 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 was such a revelation to me on realizing that I knew my body 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. What is this term medical gaslighting? I've got a general understanding of it, but what is it really mean? Sure. So 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. your blood work's 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? 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 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, nothing's wrong with you, you're fine. You're like, 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. can... completely misdiagnosis, diseases can progress, and it can become a very dangerous, dangerous situation. Well, you were dismissed. You were told everything was normal, and the facts proved otherwise. 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 just the raw gender bias you found in your in your own case and then kind of what you've found through your research. 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, know, you're being hysterical or it's had so many different monikers over time, but it really comes back to this consistent idea that women don't know their bodies and And women are people who just overemphasize 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 no big deal, that's really what we compare so much other pain to. that's why women have their appendixes 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. Well, and I think one of the other things that you articulate pretty well is, you know, sort of a 5'8 white male is sort of the entire medical system is designed for that. this has real consequences. As you point out in your book, the research has shown that women 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 see as this profound, particularly women. to give them the tools to push back against a system that is not taking them seriously and is kind of closing the door or at least delaying systematically a lot of the care they need. Absolutely. I mean, like I said, it's so much more than just being made to feel silly 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 a non-issue, you learn, you learn that that's, well, it's technically a non-issue. So you're not really listening to your body. We also, we see a lot of, 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 have, just experienced the absolute most severe, most insane consequences of medical gas lighting, including having to have an amputation, cancer becoming well past the point where it's easily cured. And I do share my own story in there as well about at one point in my 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, 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. 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 kind of prepared for that when they opened it up. But then I see the first chapters called Why We Need a Combat Guide. So it gets pretty strong from there. So why do we need a combat guide? Because women are dying. I mean, that's really it. And I think that we have all these fantastic resources on women's health and the history and 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 you go on patient forums anywhere on the internet. I'm usually on Facebook, a little bit of Reddit. Every other post is medical gas. 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 were so common that patients were hearing all the time. and how to respond to them. And so that's what I wanted to fill this book with was just a literal combat guide, like defense moves. Well, I think what's really powerful, 80 examples are super painful to read and listen to because there were clearly other paths that these patients might have been provided, supports that would 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 is to assume that they need to know themselves and trust themselves. And third, that they really need to get the data. And 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 just think that if you think about the list of calls to action that you put in the book, what's the most important thing for patients to think about when they've got an undiagnosed condition, but they know something's wrong? I think the most important thing to know is that, and I did a list of affirmations, and 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. you're going to see many doctors. One doctor may not have the answer for you and that's okay. 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 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. Are there some signs that a patient could recognize about medical gas lighting? think people have the awareness now and it may be common, but it shouldn't be happening every time. And some of the natural back and forth is gonna be there. But how can a patient tell if there's gas lighting that's going on in the first place? I think that one great way to tell is to look at what the treatment plan is. So if a doctor, here's everything that you have to say, and then responds back, we're not gonna do anything, essentially. mean, they're not gonna say, in plain words, we're not gonna do anything, but a lot of time that's phrased as wait and see. But if you're starting to hear that there is no plan, that's a pretty big red flag. And I wanted to talk as well about the language of medical gas letting and the tone of it, because a lot of people, they see the words, and again, I say, defense against medical gaslighting and you're thinking a very 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 this brash, violence kind of challenging tone. It can be very comforting. It can be very caring. It can sound like a doctor 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 our 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? guess, so what was the moment when in your own your own journey? Was it that point post high school that you realized you needed to take control or was it later in your battles around sepsis and that crazy surgery? What was the turning point for you personally where you said, hell no, I'm not gonna take anymore? Birth, I'm really a hell no kind of person. But 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. felt the shame. Like I knew what was happening, but I didn't have the words for it until I was older. 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 myself. 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, sounds like you have a chronic illness too. And I was like, yeah, yes, I do. That is what I have. And so 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 had the idea of that and once I was able to define it, I was like, my God, like it gave me so much confidence to be like, 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, yeah. So, you know, the discussion here in the book is about the combat guide and the handbook for someone 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? 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. Yeah, no, for sure. I think one of the main messages that I wanted the rest of the community, because I agree, I did want this book to be more than just a patient guide. I really wanted physicians, different health care providers, anyone who worked in the health care 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 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, no, people are gonna look at this book, the title, everything, the tone, and think this is a slam job against doctors. Like this is. anti-doctor. It's absolutely not. 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 health care providers, including the ones that were experts in the book. that were able to give to me was 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. So, maybe speak a little bit just briefly about the pain management points that you made that 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 think about as they deal with, know, as pain management's one of the most common chronic problems in America. It certainly is. And I've had my own experiences with pain management, which 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 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 hoping to get to a place where, you know, absolutely no pain. this is, I mean, obviously everybody wants that. I don't want to be in pain, but there is no education on 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 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. 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 patient that is open, 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 medication, narcotic pain medication, but potentially other medications, as well as different lifestyle changes. and just things that counsel them on pain management from just the very beginning, because we don't have that expectation of walking in and knowing what we're doing. And I had my expert, Dr. Alopi Patel, who is 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. 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, 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 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, know, even if they're just starting pain management, to kind of have a starting point to understand what's going to happen. Well, Ilana, we have time for one more question. And my question is about these patient surveys. You know, whenever I go do anything, get a survey and a 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, do they have an impact on gas lighting? And just curious about that overall. And then from the patient perspective, is that a good mechanism to be able to communicate back to your provider? 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 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, not just this ambiguous. 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 wronged, 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. think that's the only way we're going to improve is to have that conversation in as many formats as we possibly can. Well, that's it for another episode of Care Talk. Our guest today has been Ilana Jacqueline, 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. And I'm John Driscoll, senior advisor at Walgreens. If you like what you heard or you didn't, we'd love you to subscribe on your favorite service. And thank you, Ilana, for such an inspiring and empowering talk.