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Silent Sickness: Tackling Shame (Zwerling Wellness ...
Erin Leah
Erin Leah
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introduce Dr. Erin Lee. As a clinical health psychologist in infectious diseases and gastroenterology, Dr. Erin Lee strives to empower individuals with diverse medical and psychological conditions to optimize their health and well-being. Dr. Lee also holds an adjunct assistant appointment at Case Western Reserve University, where she teaches both undergraduate and graduate psychology courses. Please join me in a warm welcome for Dr. Erin Lee. Thank you. So, I don't know you, but I know something about you. I know you probably have a voice that pops into your head when something doesn't go your way and tells you it's your fault. Maybe you didn't do well on a test or screwed something up on a presentation. Or maybe it's something more personal, like you got ghosted after that last date. That's usually when the voice chimes in and says something like, you're not good enough or you're not smart enough. Or maybe you get this feeling that you just want to melt into the floor or escape in some way. I also know you wouldn't dare share these deeply personal feelings with the person sitting next to you. These feelings, that's shame. To paraphrase Dr. Brené Brown's seminal research on shame, shame is the intensely personal and painful experience and a belief that you're inherently flawed in some way and that if other people knew about it, you'd be rejected or humiliated. As a clinical health psychologist, I have the privilege of working with individuals striving to improve their health, many with chronic medical conditions like obesity, hepatitis C, or HIV. In this role, I see how shame impacts people's lives on a daily basis. It impacts the way we view ourselves, our relationships, and our health behaviors. Today I'm going to share with you four lessons my brave and honest patients have taught me about the interrelationships between shame and health. However, I'm going to illustrate with something far more personal, my own experience with shame. So let me paint this picture for you, right? It's 2016 and I'm at the doctor for an exam, but not just any exam, a pelvic exam. For the, I don't know, 30% of the audience who hasn't had the privilege of experiencing this treasure trove of shame, it's about as fun as a testicular exam, but usually takes longer, requires more equipment, but less coughing. But this also wasn't just any pelvic exam. It was for intermittent pelvic pain, meaning in preparation for this exam, I was given an adult coloring book version of both a naked woman and a vagina, and needed to shade in the parts that hurt. I also had to give a detailed sexual history. Cool. So I wore my pelvic exam best for the occasion, a buttoned down shirt, cardigan, statement necklace, and paper skirt provided by the hospital. Took a fair amount to get to this point, really. It was about a month or so before that when I was at my annual appointment with my primary care provider. And she asked about changes in my health, and I paused because there was this thing that had been bothering me. But I didn't want to have to mention it. So my mind starts to do the thing it does when I experience shame. I think, oh, it doesn't happen that often, or it isn't that bad. My brain comes up with all sorts of reasons to keep my mouth shut. I get that growing feeling in the pit of my stomach. Because here's the thing about shame. Listening to shame can silence your health care options. So what are my options here? I could keep my mouth shut and not say a thing, but at what cost? Chances are I'll still be experiencing this discomfort. And on top of that, I'm going to be more worried that something more serious is wrong with me. Or I could go home and Google it, which we know is a rabbit hole that usually ends in some sort of life-threatening diagnosis, little sleep, and an asking for a friend post on a message board somewhere. Or I could tolerate the discomfort that comes with this conversation. Sure, I might feel ashamed in the short term. But this is really the only opportunity I'd have to learn what's actually going on and what my opportunities are to address it. Luckily, there are strategies for navigating these kinds of conversations with our medical providers. The first step is awareness. When it comes to sharing information with your medical providers, pay attention to when your brain starts to give you reasons to keep your mouth shut or to not say something. Check in to see what's driving those thoughts. It could be shame. Shame often pops up when we're butting up against some sort of moral or cultural expectation. So some people might experience shame in discussions regarding their weight, their mental health, their substance use, or their sexual practices. Knowing your own personal shame zones can help you make more conscious decisions in the information you're sharing with your provider. And also check in with your goals and your values. What brought you to your provider in the first place? What are you trying to accomplish here? If the answer is to be more comfortable, then will you really be more comfortable if you don't say something? And also, people don't generally go to the doctor to be more comfortable. They go to improve their health in some way. So how are you improving your health by keeping your mouth shut? And if you don't feel comfortable having these kinds of conversations with your provider, it might be worth getting a new one. Everybody here either will work, has worked, or is working in the medical field. So find somebody you trust and find out what providers they trust. A good patient-provider relationship can really ease those challenging conversations. So anyways, back to that exam room and that lovely paper skirt. Turns out I had the privilege of having an OBGYN resident assisting in my exam that day. Great. More hands in more places. So the resident goes to complete the exam and thinks she feels a polyp. So back and forth, attending, resident, attending, resident, attending. And then the attending announces to the room that the resident was not feeling a polyp, but was in fact palpating the dorsal side of my rectum. And I immediately wanted to melt into the floor. I'd rate shame level 75 here because here I am, a woman in a culture that places value on my body, my fertility, and sends complex messages about sex in an exam that taps into all of those different shame zones. And now this happens. What do I do? Well, I could run, not walk out of that exam room after I put on my pants, turn around, and definitely not find out what my options are. And when this issue comes up with my primary care provider, I'm going to keep my mouth shut because this didn't pan out for me. Or I could go home and have a glass of wine or three. But if I tend to avoid shame through alcohol, substances, or eating my big shame feelings, where will that leave me? Here too, shame impacts the behaviors that affect our health. And unfortunately, many of the efforts we use to avoid shame really only result in more of it. So then not only am I feeling ashamed about this exam, but I'm likely to feel ashamed about the behaviors I'm using to cope, which can create a really difficult cycle of shame. This also means that regardless of the etiology of your shame, if you find escape through alcohol, food, or drugs, your health can be impacted. If I take this to the fullest extent, we're currently in the midst of an opioid crisis that the CDC says is fueling a 15-year high in the number of hepatitis C cases diagnosed in 2017. These are disproportionately from IV drug use and in individuals under 30 years of age. But you don't have to go down this destructive path. There are other options. See, you could say something. When you stumble into a shame zone, your mind begins to come up with all sorts of inaccurate or unhelpful thoughts about the situation. And if you don't talk to somebody, these thoughts are like yelling in an echo chamber. And then inaccurate stories you tell yourself go unchallenged and get perpetuated. So as much as every fiber in my being wanted to do the opposite, I really knew what I needed to do there. I sat down with my provider and I learned a little bit more about what was going on and what my treatment options were. And when I left, I called my brother, who's also my best friend, who promptly ignored my call and attempted to FaceTime me in a major medical center. But when we were able to finally connect, I explained to him about the exam and what happened. And he reminded me that in that moment, my body was just doing exactly what it was created to do. And that helped reduce a little shame. And it made it easier for me to tell another person and then another person and a room full of strangers who will eventually post it on the internet. Now I realize this isn't the most stigmatizing scenario. But shame in the scenarios that trigger shame are deeply personal and vary for everybody. So let me tell you a little bit about the brave individuals who inspired me to even get on this stage and tell you this story. A little courage goes a long way when it comes to your health. Every day I work with individuals diagnosed with HIV, a diagnosis that even in 2019 can still be very stigmatizing and for some foster tremendous shame. Some of my patients elect to bear the burden of this disease alone due to fear that disclosing their status to their friends and family will ultimately result in rejection. However, when individuals are courageous enough to share their story with a friend or family, they're more likely to remain in care. And research indicates patients who remain in care are more likely to be virally suppressed or as we call it, undetectable. So that means the courageous individuals who share their story are likely to be healthier, virally suppressed, and remain in care. Now how do people get there? How do they go from this diagnosis of HIV to sharing their story with others? Well, one place I see it happen is in a support group I run for individuals living with HIV. Their new members disclose their status to the current group members who are initially strangers at first. And then the group responds with compassion. And that human connection paired with education on their diagnosis helps foster empowerment and more acceptance of their HIV status. Then individuals take incrementally greater steps at disclosing their status to other people. I even have some individuals who not only disclose their status to friends or family but now readily use the opportunity to discuss with members in their community so they can talk about safer sex practices or pre-exposure prophylaxis, a once-daily medication that can prevent people from contracting HIV. So by starting small and sharing their story in a safe environment, individuals are tackling shame, improving their health, the health of their community, and reducing the spread of HIV. Now I bet I know what you're thinking here. You're like, cool, Erin, that sounds really great for my patients. But I've got a lot at stake here if I talk to people about my struggles. And I would say, yeah, that's exactly what shame told me when I was a graduate student and struggling and called a psychologist for the first time to make an appointment. And you know what? I don't think I'm unique in that situation. And in fact, many of my patients who also work in health care and many of my co-workers find reaching out for mental health assistance to be particularly challenging in the health care field. See, at times I think we unintentionally create this arbitrary line in the sand, as in those who need help and those who do the helping. And as health care providers who are clearly used to caring for other people, this idea of crossing that arbitrary line can sometimes seem foreign and certainly can feel terrifying. But really, that line between being a caregiver and a care recipient is temporal. So for you in the audience, what do you see as the biggest barrier to reaching out for help? If you guys could respond on the Poll Everywhere app, I'd appreciate it. Oh, and this I should be able to handle. Just fill in the blank with whatever your personal struggle is. I just left it blank so that you guys could select what seemed most appropriate for you. All right, see I can't see it from there, yeah. So a lot of people get this idea that they should be able to handle it or I am with you, this is super hard. And you know what? You guys aren't alone in these views. In fact, a qualitative study by Bianchi and colleagues that was published in 2016 in BMJ explored senior physicians' beliefs regarding mental illness in the medical profession and identified many of these very issues as being barriers to seeking mental health care. See, being a caregiver often becomes part of our identity. It's as if our white coat or our scrubs somehow make us impervious to needing help or that sitting on the other side of the desk or the exam chair fundamentally changes who we are. But these inflexible views of oneself can be inaccurate, stifling, and dangerous. This is one of the quotes from one of the participants in Bianchi's study. And as we discussed earlier, self-medicating away the shame can negatively impact your health, but it can also keep you from recognizing and accepting that with which you're struggling. Take for example this quote from one of the participants in Bianchi and colleagues' study. Sometimes we get so imbued in these scenarios, we have trouble noticing that we're struggling. And so it can be really helpful to kind of have our own red flags to know when things might be getting particularly challenging for us. So for example, if you find that you're more irritable lately or your sleep's been screwed up for a while or your appetite changes or you're just taking overall poor care of yourself or struggling to experience joy, it might be worth reaching out to somebody for assistance. Of course, now you guys are probably having the thought, but I should be able to handle this on my own, much like this participant. And I will give you that these thoughts feel very true. But here again is a good place to talk to someone or to at least gather objective information to determine just how accurate these thoughts are. Let's take the idea that colleagues will treat you differently. Sure, no guarantees what Karen in Cath Lab says or does to you in the future, but researchers on psychologists' perceptions of co-workers in therapy suggest otherwise. So Schroeder and colleagues published a study in 2015 which explored psychologists' responses to learning a colleague was currently in mental health treatment. The way this worked is all of the participants who were psychologists were assigned to one of four vignettes, and the vignettes were all hypothetical scenarios. So one was you're at lunch with a colleague who you know very well and you've referred patients to in the past, and at the end of lunch, your colleague informs you that they're in therapy. Another version was exactly the same, but when they informed you that they're in therapy, said they were specifically in therapy for major depressive disorder. One they specifically said they were in therapy for bipolar disorder, and then there was a control arm of the study in which therapy wasn't mentioned. And then the psychologists were asked how likely they were to refer a patient to them and how long they might wait before referring a patient to them. And what they found was across the different groups, there were actually no differences with regards to the period of time in which they'd refer a colleague. So either they would refer them right away or they would delay, or how likely they were to refer a colleague based on the new information they received. So the referral rate changes based on the information they just received on a scale of 1 to 10, I'm sorry, 1 to 7 being they've greatly decreased to greatly increased, or how long they might wait. And there were no differences across the groups. So maybe seeking help won't impact your career, but it probably will, just not in the way you're anticipating. Because you see, seeking help will have a profound impact on your career as a CRNA. Giving yourself the opportunity to be a patient not only provides you insight into factors that may contribute to your shame and more adaptive strategies to address it, but it also provides you the very real and lived experience of being a patient. It is profound to experience the power differential and vulnerability associated with that. And doing so will make you a more thoughtful, insightful, and compassionate provider. So out of curiosity, for somebody struggling, how important do you think it is to reach out for help, 1, being not important at all, and 10, being incredibly important? So, people are appreciating how important it is to reach out if you're struggling. But it brings me to my next question. How likely are you, if you're struggling, to actually reach out for help? One, being not likely at all, and ten, being incredibly likely. Do we get to define what kind of help we're reaching out for? Sure. But I'd like to point back to the easy fix can be hard on your health. So, if it's the picture of the booze, we might want to talk later. Isn't it striking? I think that that's something for people to define themselves, if they think they need additional support. As a mother of a toddler, I am with you on that one, me too. We can talk later about some strategies for that, if you have any. But as you can see on the last one, the percentage was profound, the number of people who thought it was important to reach out for help. But the spread on the likelihood of reaching out for help is far different, and in fact, dramatically weighted towards not likely to reach out for help. So then, keep in mind what answer you just gave on the last one. And think to yourself, and if you could respond, I'd appreciate it, exactly what it would take to boost yourself up two points on whatever you put on the last one. So if you gave yourself a four, what would it take to boost you up to a six? Or if you gave yourself a one, what would need to happen for you to feel more comfortable so that you could be at like a three, in the likelihood that you're going to reach out? It's hard to read over here. These are all really important and helpful areas to figure out. Time is a huge one. Just even prioritizing with all of the many ways in which we're pulled these days, especially as you're trying to balance careers and other responsibilities, family issues. And knowing that you can talk to somebody is something that I'm seeing, that there's somebody who's trusting, or that you have somebody in your corner on this, that you know it'll be confidential. So I've learned a great deal from my experiences as a patient that have dramatically altered my work as a clinical health psychologist. And I invite each of you to do the same. Here's the thing. You can't control feeling shame, but you can determine if it will control you. So when you encounter that pit of your stomach feeling of shame, when your mind tells you to do anything other than talk about it, do the opposite. Find somebody with whom you feel comfortable and say something. When it comes to your health and your career, don't let shame prevent you from telling your story. Thank you.
Video Summary
Dr. Erin Lee, a clinical health psychologist, discusses the impact of shame on people's health behaviors and relationships. She shares her own personal experience with shame during a pelvic exam and advocates for open communication with medical providers. Dr. Lee emphasizes the importance of being aware of shame triggers and recognizing the value of sharing information with healthcare professionals in order to receive appropriate care. She also highlights the bravery of individuals who share their experiences with stigmatized conditions like HIV and how it leads to better health outcomes and reduced spread of the virus. Dr. Lee addresses the challenges in seeking help for mental health issues in the healthcare field and encourages healthcare providers to prioritize their own mental well-being. She concludes by urging individuals to not let shame control their lives and to speak up about their experiences.
Keywords
shame
health behaviors
open communication
medical providers
stigmatized conditions
mental well-being
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