S6:Ep7 – Migraine and Medical Gaslighting

TRANSCRIPT

Molly O’Brien: Welcome to Spotlight on Migraine hosted by the Association of Migraine Disorders. In this episode, we learn about medical gaslighting and how harmful it can be for people with migraine. Dr. Melissa Geraghty highlights examples of medical gaslighting and offers suggestions for dealing with this challenging issue.

Hello, and welcome to Spotlight on Migraine. I’m your host, Molly O’Brien. Today we’re diving into medical gaslighting. We’re going to look at what medical gaslighting is, how it impacts people with migraine, and what we can do about it. To help us learn about this topic, I’m very happy to welcome our guest, Dr. Melissa Geraghty. Dr. Geraghty is a licensed clinical health psychologist, the director of mental health and support at the US Pain Foundation, and she’s also the CEO of Phoenix Rising with Dr. G. She’s also a mental health consultant and a medical gaslighting sensitivity trainer. Dr. Geraghty, thank you so much for being with us today.

Dr. Melissa Geraghty: I am so excited to be here. Thanks for having me.

O’Brien: Love this topic. It is fascinating, and I know that our audience will really enjoy learning about gaslighting as well. So before we get started, can you just give us a reminder of what is gaslighting?

Geraghty: Yes, so gaslighting is when a person intentionally manipulates another person to the point where that person questions their own beliefs, reality, judgment, memories, and sanity. And gaslighting is absolutely a form of emotional abuse.

O’Brien: I’m so glad that you frame it in that way to help us understand that it is manipulation, and it is abuse, and it can be from just about anyone, including our medical providers. So can you explain to us what medical gaslighting is and maybe give us a few examples?

Geraghty: Absolutely. So medical gaslighting is when a healthcare professional dismisses your concerns to the point where you question your own beliefs, reality, judgment, memories. It’s where people don’t take your medical concerns seriously or blame your physical symptoms on something else, such as anxiety or needing to lose weight. And like you mentioned, you can also experience medical gaslighting from family members, friends, coworkers, acquaintances, bosses, and the general public. So a few examples of medical gaslighting is things like this. You’re over exaggerating. No one can have that many symptoms and still talk and smile. Or you just need to exercise more or lose weight, and all your problems will go away. Or it’s all in your head, go see a psychiatrist. Or this procedure typically isn’t painful, so you shouldn’t have had that response. Or I never had a patient with that diagnosis, so you don’t have that. Or, my favorite, all your labs came back fine, so you’re fine, right? Or I don’t believe in that diagnosis. Well, that’s just great.

O’Brien: Ahhh, people at home might have heard me over here taking deep breaths of trying to take deep breaths in as you’re giving these examples. And I’m sure people listening and watching are saying, hey, I’ve heard that before. Oh my goodness, that rings so true, which can be so frustrating, especially within the migraine community. So let’s talk a little bit more about kind of going back to those examples. And I think this is a really important question, Dr. Geraghty, is that there are some differences. Sometimes you could be getting medically gaslit, and sometimes maybe you and your doctor just disagree. Maybe they have a clear explanation that they don’t think your symptoms are linked. So, can you help us understand the difference between medical gaslighting and a doctor just dismissing you and your symptoms versus “clearing your symptoms” kind of along the lines of like me and my doctor don’t necessarily agree about symptoms being linked or cause and effect. Can you help us understand that?

Geraghty: Yeah, absolutely. I’ve got a lot to say about this, because especially since medical gaslighting, that terminology, has becoming more popular, a lot of people are using it incorrectly and saying everything is medical gaslighting. So this is perfect that you’re asking this. So we have to remember that medical gaslighting occurs when a healthcare professional dismisses or undermines us, as patients, right? And it makes us feel doubt about our health. So the key here is it’s about how the patient how we feel about what’s being said to us. So medical gaslighting can make the patient feel invalidated and confused about their own health. And so, medical gaslighting is not just when someone disagrees with you or holds different beliefs or is generally a disagreeable person. It’s not medical gaslighting when a doctor provides a different diagnosis or perspective based on their expertise. Doctors may have different opinions, and it’s not necessarily gaslighting. So seeking a second opinion is a valid choice if you’re unsure.

And it’s also not automatically medical gaslighting when a doctor discusses lifestyle changes or mental health aspects of your condition. So addressing lifestyle factors or mental health doesn’t diminish the validity of your physical symptoms. It’s all part of comprehensive healthcare. However, it may be medical gaslighting if a doctor blames all the symptoms on something like weight or mental health without taking into consideration the whole person, right? And it’s also not medical gaslighting when someone is just rude, or if someone is impolite or unfriendly, that’s not automatically gaslighting. Remember gaslighting involves intentional manipulation to make you doubt your experience. And lastly, to your point about clearing, it’s also not medical gaslighting when you disagree with your doctor. Disagreements are natural in healthcare, it’s okay to have different opinions, and seeking open communication or a second opinion is a valid part of the medical process. So remember gaslighting involves intentional manipulation, not just a difference in perspective.

O’Brien: That’s such a good answer, and I really appreciate you providing some of those examples in there. I’m thinking gaslighting is not them just being rude, because I know I’ve come across some healthcare professionals that don’t have the best bedside manner, or whom I’ve disagreed with. But that’s such a great point to put it in perspective, especially in terms of people with migraine, because people with migraine are more likely to have depression, they’re more likely to have anxiety. We know that weight and migraine they are interlinked at times. So it is valid and important for people to remember that the difference – that you can have a conversation because we’re looking at it from the whole body approach. So I really appreciate, those are really good examples, too. And yeah, sometimes we disagree. So I think that’s really valuable for people, at home, to remember too you can always get a second opinion. And that can be super helpful, right?

Geraghty: Yep, exactly. That’s the key, I think, of if you’re not vibing with a doctor, if you can, get a second opinion.

O’Brien: Okay, great. So I guess my next question is, is there any one person or any groups of people that might be more likely to experience medical gaslighting?

Geraghty: Yes, women, BIPOC, LGBTQ+, elderly, people with mental health conditions, people with chronic medical conditions, and people with low SES (socioeconomic status). From my research and talking to patients, these are the populations that often experience acute medical gaslighting and often over and over and over again. So it’s not just a one-off for many of these people; essentially it becomes medical trauma because they’re getting medically gas lit over and over and over again.

O’Brien: It’s so troubling to hear. And if you are a person who has experienced medical gaslighting, stay with us, because we’re going to give you some advice for what to do. So we will get there. Let’s talk about some unique challenges that people with migraine face when it comes to medical gaslighting. Do people with migraine experience any?

Geraghty: Yeah, my goodness. People with migraine disease face unique challenges when dealing with medical gaslighting due to the high individualized nature of the disease, right, where symptoms and triggers vary greatly among individuals. And the presence of comorbidities further complicates diagnosis and treatment, making it harder for healthcare professionals to accurately assess and address the condition. And we know that no single treatment works universally, so that adds to the frustration and potential for dismissive attitudes from doctors. Of course, there’s systemic challenges that exasperate the issue. There’s a shortage of knowledgeable providers on migraine. There’s significant lags in diagnosis and disparities in care access, right. And so additionally, many healthcare professionals receive minimal training on migraine disease and headache diseases, which leads to a lack of understanding and empathy, which then results in patients feeling invalidated and their symptoms downplayed.

O’Brien: Could migraine stigma really be entwined or really bolden the medical gaslighting because people are unaware?

Geraghty: Oh my goodness, yes. Migraine stigma significantly intertwines with medical gaslighting as misconceptions and biases about migraine disease often lead healthcare professionals to dismiss or minimize patient’s symptoms. So we know that migraine disease is frequently misunderstood as mere headaches rather than a serious neurological condition, which then leads patient’s symptoms to be attributed to stress or psychological issues rather than being taken seriously. And then, sadly, this can result in patients being told their pain is exaggerated or imagined, and that’s a hallmark of gaslighting that undermines their self-confidence and trust in their own experience. And then this stigma goes ahead and fosters a tendency to blame patients for their condition, suggesting that only lifestyle factors are the cause, and that just further invalidates their suffering and can delay appropriate diagnosis and treatment.

O’Brien: I think that’s such a good point, because you get into the trigger debate. And then, oftentimes there’s so much migraine guilt that when you live with migraine, well, what did you do to cause it? What did you do to trigger it? So there’s that external guilt, possibly from our healthcare provider, but also there’s internal stigma, like, and guilt what did I do to cause this? So, it’s good to know that stigma really can play a role.

Geraghty: Absolutely, yeah. And the internal guilt is so high among patients of what did I do wrong this time? You know, like and just really, because they might be echoing what they’re being told by healthcare professionals.

O’Brien: Exactly, and that’s migraine stigma. We didn’t do anything wrong. We have migraine. It’s not your fault.

Geraghty: Yeah, not your fault, no.

O’Brien: Okay, so I want to be super clear for people, because we’re all starting to understand medical gaslighting and gaslighting, in general, and it is harmful. But to just paint a very clear picture, why is medical gaslighting harmful?

Geraghty: Yeah. So it’s harmful because it invalidates patient’s experiences. It leads them to doubt their own perceptions and potentially delays accurate diagnosis and effective treatment. Of course, this can exasperate health issues, increase emotional distress, erode trust in healthcare professionals, which then impacts mental health and overall well-being. And then, of course, in the cases of people with migraine disease, it could be a matter of them with delayed diagnosis then turning chronic because of gaslighting.

O’Brien: That’s a good point. With delayed diagnosis, delayed treatment turning chronic. So that’s an excellent point that I hadn’t thought about. So we know medical gaslighting is harmful. We don’t like it. We’re saying no, we don’t like it. So let’s get a little bit proactive here. When we’re sitting in a doctor’s office or on a Zoom call with a healthcare professional, telehealth, whatever the case may be, how can we recognize medical gaslighting? Are there red flags that we should be aware of? Are there any phrases I know you mentioned a couple earlier, but what should we be on the lookout for?

Geraghty: Yeah, so some red flags include persistent dismissal of symptoms despite clear articulation, reluctance to order diagnostic tests despite the patient explaining their symptoms, or maybe the doctor not wanting to refer out to specialists, a condescending or patronizing attitude. And some other phrases to watch out for are, it’s all in your head. You’re just stressed. There’s nothing wrong with you. You’re overreacting, or other patients don’t have this problem. And also, additionally, if a doctor consistently attributes your symptoms to psychological causes without thorough investigation, all of that might be signs of medical gaslighting.

O’Brien: So harmful and I really do believe this interview can be helpful for people, because I think some of what you’re saying, some of these examples are quite common and can resonate so much, especially people living with migraine. Because like you explained, well other patients don’t have these issues. Well migraine, come on?

Geraghty: Yes, yes.

O’Brien: Absolutely infuriating. So now that we know what to look out for, now that we have an understanding of what medical gaslighting is and how harmful it can be, what do we do about it? It can be especially difficult for people living with migraine because you think all right, well, I’ll go see a new doctor, but we don’t always have access. So what are some steps that we can take to either prevent medical gaslighting, nip it in the bud, or find a new approach? What do we do about it?

Geraghty: Yeah, great question. So there’s a lot that we can actually do to take our power back. And if you can change doctors, that’s great. But like you mentioned, there’s many reasons why that’s not an option. Maybe there’s not headache-specific doctors in your area, headache or migraine. Maybe you’re in a rural area. Maybe it took 12 months to see this person, and you don’t have any more spoons to do another search at the moment. And so if that happens, if you can, take someone with you to medical appointments, if possible. Keep a written record of what occurred in these medical appointments and talk with your talk about your experience with someone like a trusted friend or therapist. See a psychologist. Go to support groups where you can feel understood by people going through similar things, such as the US Pain Foundation peer-led support groups that I’m the director of. You know, that’s where people you just, you don’t even have to explain yourself, you just say what’s going on. And there’s this kinship of like, we understand, right?

Another thing you can do is, if a doctor refuses to run a test that you feel you would benefit from, ask the reason to be noted in your chart. Oftentimes what happens is when you ask that, the doctor might take a moment and think oh yeah, okay, that’s actually valid, and we’ll do it. And if not, hopefully they would take the time to explain to you, or you could ask, why do you not think that this is valid, or we should do right now? And then, the biggest ones, especially if you’re kind of stuck with a medical professional that you can’t leave, practice assertive replies out loud in front of the mirror – it might sound weird – but it helps or with a therapist or a loved one. And some examples of ways you can respond to medical gaslighting are, I hear that you disagree with me, but this is how I see it. Or my experience is valid period. Or I feel like I’m not being heard, right? Or I know what’s going on with my body, and I am here reaching out for help. So it’s a reminder of I know my body best, and I’m here for your help. So it puts the onus back on them.

O’Brien: That just made me so emotional. I’m just thinking, we’re all experts of our own body, and why is it so hard for people to be believed? I don’t understand. So I think those are all amazing examples and really valuable tools for people. I’m curious your thoughts on what people can do. Appointment times are so limited, our healthcare system is overwhelmed right now. So if you only have 20 minutes with a doctor and you’re dealing with migraine, is there ways to be sort of assertive upfront, or how do we expedite the process of being dismissed if we feel like we’re getting gaslighted? I’m trying to figure out the best way to ask this question, but I think you know where I’m going.

Geraghty: I know where you’re going. And what I say is to be prepared. So to write down your symptoms. Write down any medication reactions or changes. Write down any differences of your symptoms. Like if you’ve seen this doctor before, how has the pain changed from last time; has it? Has it now increased at night? Is it now more throbbing then stabbing? Like those sort of things write it down. And I literally, when I go to doctor’s appointments, I print out two copies, one for myself, and I give one to the doctor. And oftentimes their nurse will take it and scan it into my medical record.

But this way, me and my doctor can, boom, boom, boom, go really fast if we need to through my main points, and I do try to keep it like top five. And then you can say there’s more we need to discuss, but if we’re out of time, I’d like to make another appointment. But that’s the most helpful thing, and that’s where you also get your power because you’re prepared. You have your top five, you know, symptoms or questions that you have that you want to talk about, and it keeps the appointment on track as well of like this is what we’re focusing on. So hopefully there’s less time for medical gaslighting.

O’Brien: That’s awesome and such a good point too and thank you. I’m glad you knew where I was going. I couldn’t quite get there.

Geraghty: You’re great. You’re fine.

O’Brien: But I do love that idea, too, because especially people who either are in chronic pain or if they have migraine or experience brain fog, it can be difficult to find the words and remember all you want to say in those quick appointments. So having it all documented ahead of time, that’s excellent advice.

Geraghty: It’s very helpful. And if you go to my website, Phoenix Rising with Dr. G, I have a bunch of free resources, including like this one article where I lay out how I create my medical binder and how I update it when I go to different appointments. So it’s all there, and it’s all free resources for things like this that are really important and may feel really overwhelming, like we don’t know where to start. So I did it for you guys.

O’Brien: Hey, thank you. I just mentioned that before we started the interview is I never know where to start with stuff. And we will provide a link to your website as well, because Dr. Geraghty, like you mentioned, has a ton of great resources, a ton of free resources for people. And you can also sign up for an eNewsletter to get reminders and all that kind of stuff. And as we kind of wrap things up, is there anything else that you want people to know, either if they encounter medical gaslighting or ways to get around it, ways to bust through it? What else would you like people to know?

Geraghty: I’d really like to let people know to trust yourself. And trust what you’ve been through. Trust that you’re learning your body more for signs and symptoms, and that you’re not making it up. That I believe you. I don’t even know you, and I believe you like to the people who are listening. Because here’s the thing, I’ve been doing this for a long time, and I have never met a pain patient fake. I just haven’t. And so that’s how I can say that confidently without knowing everyone’s stories, of the people who are listening right now that you’re not a liar, you’re not over exaggerating, you’re not faking. And to know that is hard, right, especially if friends and family and bosses and doctors are telling you that you’re too much or you’re, you know, in too much pain all the time or have to cancel too many events all the time or whatnot. That can be really hard to not question our own sanity. But I think that with time, just reminding yourself that I’m the best judge of what’s going on with me.

O’Brien: Such amazing advice. I really appreciate that. And again, it chokes me up a little bit because it’s so true and it’s hard, especially when you have people telling you like that you can’t be in that much pain, you can’t be that disabled, you can’t, yes, I can. I wish I wasn’t.

Geraghty: Exactly, exactly.

O’Brien: I wish I wasn’t where I’m at right now, but this is what it is. Dr. Geraghty, I really appreciate your time today. Thank you so much for joining us, and again, we’ll provide a link to her website with resources. But I really appreciate your insight, your expertise, and your real, true honesty. It’s so genuine. And I really do appreciate your time today.

Geraghty: Thank you so much for having me. When you contacted me about this topic, I was really excited to be on your podcast, because your podcasts are amazing. And I’m just glad to be able to support people in this way, because this is a very important topic, and one that’s really close to my heart too.

O’Brien: We really do appreciate it and thank you so much. And thank you to all of our followers out there for listening, watching, and following along. And that wraps up this episode of Spotlight on Migraine. If you want to learn more about medical gaslighting, Dr. Geraghty has a host of free resources on her website, at phoenixrisingwithdrg.com. Dr. Geraghty, thank you once again, and to all of our followers out there, thanks for watching, thanks for listening. With the Association of Migraine Disorders, I’m Molly O’Brien. We’ll see you next time.

*The contents of this podcast are intended for general informational purposes only and do not constitute professional medical advice, diagnosis, or treatment. Always seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition. The speaker does not recommend or endorse any specific course of treatment, products, procedures, opinions, or other information that may be mentioned. Reliance on any information provided by this content is solely at your own risk.