If you have an invisible illness, chances are at some point you've been accused of "faking it." What most people who don't have these types illnesses don't know is... we do fake it. We fake being WELL. • DISCLAIMER Colorful words may be used. don't be alarmed. • NEWSLETTER
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TRANSCRIPTION So the other day on Instagram, I was talking about, uh, the. The guilt that I feel when I'm having a not so great day and just want to take a personal day. But I feel like I can't because I have to take so many days when it comes to having a really bad chronic illness day. And one of you, Wendy messaged me on Instagram and asked me if I would do a podcast on fake. Well, chronic illness. People think you might be faking sick, but we're actually faking well. And she, I was like, oh fuck. Yeah, I hell I want to talk about that. So thank you, Wendy, for bringing that up to me because that's what we're gonna talk about today. Welcome to the uncurated life podcast. My name is Cindy Guentert-Baldo on this podcast. We talk about the way we live our lives, both in person and on the internet. And this is a major piece of it. If you are chronically ill. In one form or another, this could actually have to do with mental illness. This could have to do with physical illness or all sorts of different. For a little bit of context. I am in kidney failure. I have polycystic kidney disease. And so I have a lot of the problems that come with kidney failure, the nausea, the, um, the brain fog, the exhaustion, all of that, but also have massive football sized kidneys, and those add their own level of pain to my day, with the size of them pushing on my ribs, pushing them, my organs, I can't bend over. I can't tie my shoes, blah, blah, blah. I am in pain. Or uncomfortable or both every minute of the day. So very much I am, um, chronically ill, however, um, aside from some yellowness in my skin and my large kidney belly, which a lot of people just assume I'm pregnant. You can't see my illness on the surface. I'm not wearing it on my sleeve. The same goes for people with so many different invisible illnesses, whether it's fibromyalgia, whether it's Ehlers Danlos syndrome. And those just both come to mind because my kid is potentially diagnosed with one of those. We're still working on that, but there's all sorts of invisible physical illnesses that can cause pain. And that can make you feel like shit every day. The same goes for a lot of mental. Illnesses things that you're dealing with, like depression or chronic anxiety or all sorts of different things like that. There are so many things that afflict us and impact how we're doing on any given day that people on the outside, people who are not, uh, us basically, they can't see. It becomes a real feeling of stress, especially when people question you, if you're having a bad day, this happens. This happened a lot for me when I was working for, I worked for myself now, but when I was working for somebody else with coworkers, when I would need to take like a moment and people would question because they couldn't tell, it's not like I have a broken arm hanging from my side or something. So they would question me about whether or not it was faking, feeling shitty. I've seen this with my kid. They have run into problems with other people in their life who have questioned them on how they're feeling. Are they really feeling, is it really that bad? I know a lot of people in the chronic illness and chronic pain communities feel this way. I know, especially it can feel this way when you go to the doctor and you are asking for help or relief with your pain or looking for answers. And there are some amazing, amazing medical professionals out there, but there are also some who maybe did not pay. Empathy on their trip through medical school, especially if you're a woman, especially. And I've heard, like if you're a woman, if you're fat, if you are a person of color, your, your, like your concerns are not always taken as seriously at the doctor. If you have the nerve to go to a doctor about it at all. For me, one of my biggest issues is that I am in pain all of the time, and I very rarely have anything to help me with relief from the pain. Because of the stigma around pain management, pain management medication, and with the whole like opioid epidemic, I have an entire rant on how the opioid epidemic and all the situations with that. Some of the people impacted the most by it who don't get talked about the most are the chronic pain patients who. They have to spend their lives in misery because, um, of the way that like people are not being treated like criminals, if they need to, if they need pain management. So there is that all of this to say that it is very easy. If you are somebody who suffers with an invisible illness of any sort to be. Accused of either directly or indirectly a faking it, of faking your illness of exaggerating your illness of, of over-blowing your illness and what Wendy said to me. And what I really started to articulate to myself is that, yeah, I do fake it. I fake it a lot, but I don't fake being sick. I fake being well, here's the thing. When you are somebody who is dealing with chronic pain, chronic illness, you don't need to fake feeling like shit because you already do, but you may decide either purposefully or just subconsciously that it would serve you better to just put on the wellness facade. It's easier that. So I'm going to link several articles that I looked at in the show notes, because there's, there's other people. Who've also said this very succinctly, but I'm gonna just talk about some of the reasons I can think of about why and how I've faked being well, one of the biggest reasons. I'm fucking sick of talking about it. I'm sick of people asking me how I'm doing. I'm sick of having to explain. I'm sick of having to talk about it. I just want to be left to be miserable and peace. And if I present as miserable, people are going to ask me, they're going to be concerned. Maybe I just don't want to talk about it. That. So I fake it. The funny thing is my family's onto me. I can't fake it as well around them anymore. They know me well enough where they can see the changes in my body language. They can see the changes in my face. They can see it. Eyes. They could see it in how I carry myself. They can see it in the way that I move around them and the way that I just move in general, the way I walk, maybe even the clothes I decide to wear. They're very astute at picking up on the signs. Even if I'm trying to present like quote, everything's fine. They can tell. That I'm lying, especially Jessie, my husband. Oh my God. He can pick it out, like out of a fucking lineup, but generally speaking in other relationships. Yeah. I'll just, I'll fucking fake it because I don't want to deal with it anyway. I don't want to talk about it that day. It gets old, man. It gets old and it especially gets old. When you start to feel like that becomes your entire identity, like, look at me, I'm the sick person. And that may not be your entire identity to other people, but it can start to feel that way to yourself. So faking well to, just, to just not deal with it is most definitely something that I, I do like on a regular basis. Another way that I fake well is because I, I don't, there's this dichotomy that comes when you're sick. Right. You see this a lot, especially in like the cancer community, right. There's like the cancer warriors, the people who are like bravely facing on their cancer. And then there's. Like the super miserable sick people you hear about like when somebody is reaching the end of their life and they're just, they're miserable. So they're miserable to everybody else around them. So there's, there's these two kind of archetypes of a sick person. And in my experience, especially being chronically ill. Neither of those really sum up my experience on a day-to-day basis. I'm not a warrior, I'm not battling my illness. I'm, I'm just, I'm doing my best every single day. I don't want to be seen as the hero of my story because it's not that simple. I don't want to be put on a pedestal for it, but at the same time, I also don't want to be seen as like the miserable sick person and. It's hard to push back against those narratives. It's really difficult to push back. It's like pushing back against stereotypes. It can be really difficult. And when you're already exhausted and already in so much pain, it's easier to just sidestep the whole thing altogether. Like people, if I'm not having a bad day, Sickly wise, or if I'm putting on that, I'm not having a bad day sickly wise and it won't come up, then I don't have to deal with it. But as soon as it comes up, it becomes something I might have to deal with. And I just don't want to, most of the time, I don't have the fucking energy for that. Another reason one might fake being well is so that you can kind of. If people start feeling sorry for you because you're sick or they start questioning whether you're faking, being sick. It's a very short leap from that to questioning whether or not you're capable, whether or not you're competent, whether or not you are, you are capable of being like a fully formed adult. It's very easy to infant analyze somebody who's chronically ill. It's very easy to dismiss somebody. Who's chronically ill. It's very easy to other somebody who is chronically ill. And so by faking well, you're blending it. You're blending in with the well people you're blending in with the crowd, and you're not calling attention to any of these things. People don't make assumptions about your state of mind. If they don't know that you are in a haze of pain every day, people don't make assumptions about your state of mind. If they don't know that you have to take Trevor. Every day, people don't make assumptions about your state of mind. If they don't know that you are only putting half of your thought process forward, because the other half of it is dealing with not throwing up. Now, it's not a fair comparison to make because. Even when I was not in pain all the time, there were plenty of days where my thought process was divided and some of it was focused on the task at hand. And some of it was focused on my grocery list or some of it was focused on the drama going on at work, or some of it was focused on reliving last night's episode of flavor of love. Like it's not like chronic illness. People are the only ones who are distracted, but it can be very easy to question somebody's mental competence. If they have another situation going on, because if you are not, it, it, it fits you into this category of sick person rather than person. And, and it just, sometimes you just don't want to fucking deal with it. There's other. Times where one might fake. Well, because you're trying to go down like the fake it till you make it kind of kind of road. Like, well maybe if I fake feeling, well, maybe I've eventually will, you know, maybe if I ignore it long enough, I push it to the side long enough. Maybe I'll actually forget about it for a little while that never happens, but it can help with cheering yourself up. It can help with, with distracting yourself. There are ways we're putting on that kind of cloak of wellness. It can add at least like a superficial level of, I don't know, like peace and that sometimes I'll take it right. Sometimes I will take it a big piece of faking. Well, though, and probably for me at least is one of the biggest pieces is because. I don't want to be seen as the complaining sick person to my family, to my people around me, my friends, everyone else. I don't want to be seen as like the bummer. Right. I don't want people to distance themselves from me because they don't know what to say. I don't want people to distance themselves from me because they're tired of hearing about it. Like, I don't want like being sick, having this shitty genetic disease. Already sucks. I don't want it to be indirectly sucky by alienating people in my life now, whether or not that would actually happen. I don't know. But there is a lot of messaging out there that can at least make you feel that way. It can make you feel that if you are too vocal about your, your chronic illness, if you are, you are. Turning your frown super down on all the time that, that people are going to eventually distance themselves from you. There is messaging out there and it can be easy to internalize that a lot of people don't like being reminded, right? That, that humans, like if you're feeling healthy and everything else, and there's somebody, who's your age, who is struggling really hard with chronic pain or with illness, it can be a reminder of your own mortality and. And so that can cause people to even like, not consciously, but subconsciously distance themselves from you when you're sick. And so by pretending to feel better, you hope to insulate yourself from some of that. And one of the articles I read in the psychology today, article she talks about, um, The idea of the heroic sick person. So like if your illness, this goes back also to like the warrior thing, right. It goes back to the person they use, as the example is Beth from little women, right. She's dying. She meets it with acceptance. She meets it with bravery. She meets it with, with like being. Just accepting and okay with it. It's not icky. It's not stressful. There's no bed sores. Like you don't hear about any of that. You just hear about her bravely heading towards the valley of the shadow or whatever it is for that book a bunch. So that makes that make sense. But that's not usually what chronic illness really is like. And that's usually not what somebody who finally is at a point where they're going to be hospitalized. It's not what it's usually like, but this idea of like the, the idealized sick person, Barbara Hershey in beaches, dying of her woman's disease or whatever, right. When you see people in these movies dying of something, You know, getting cancer, getting whatever, and then they, they face it and they might have some problems facing it, but then they, they go through it like even a movie like step-mom with, um, with Susan Surandon it's a great example of somebody faking well, right. The movie step-mom was Susan Surandon and Julia Roberts is about a divorced couple at Harris is the husband and SU Susan saran. The mom and the dad had Harrison, Susan Sarandon and Susan surrounding gets diagnosed with cancer. And at Harris has a new girlfriend. Um, Nate who's Julia Roberts. And. Susan Sarandon's character. It kind of, it shows kind of two things. It shows the, the, the dynamics of a family dealing with a new step parent and the biological parent, having trouble relinquishing any sort of control to a step parent, blah, blah, blah, which I found fascinating as somebody who was in Susan Sarandon's place with my kids gain a stepmom, but then also. She's hiding her diagnosis from them. Cause she doesn't know how her family is going to handle it. She doesn't want people to see her as a sick person. She hides it for a good from her family for a good chunk of the movie to a point where they think that she's maybe moving to another state or she's having an affair or something like there's a lot happening there where she's faking being well. But then once people know about her being sick, there are some times where she's really snarky and not like accepting it. But for a lot of it, she's like the saintly dying mom. Right. And she's putting on this. This idea of being the, the heroic dying person for her kids, but it also shows through in the. There. There's not a lot of movies made about people who are absolutely like you also. Okay. Let me, let me just continue on this rambling note to mention that like the polar opposite of all of this is the memories that the character Rachel has in Salem's lot. Salem's lot, uh, pet. The character, Rachel and pet cemetery, the memories of her sister Zelda, dying of meningitis, and like the, the scary to a kid sister who is bedridden and on a bunch of drugs. And, and, you know, her room smells like urine because of the bed pan and everything else. I would argue that some of the depictions, not all of the patients have Zelda by far, not all of the fictions of depictions of Zelda, but I would suggest that there is a level of truth there because from everything I understand and from everything I have witnessed from people in my own life, There is a level at the end of a long drawn out illness, where somebody is dying from it, where it's not beautiful, like the movies it's, it's hard and it's stressful for everybody. There's a reason that long-term caregivers suffer from depression and suicidal thoughts and survivor's guilt and all of that. They feel guilty because they feel relieved. All of that, to say that when you hear about these things, when you see the dichotomy of like the heroic, saintly dying people in the movies, and then you hear about the reality of it and the things that caregivers have to go through when you yourself are chronically ill. You don't want to be seen as the saintly dying person, because it's not you, but you don't want to be a burden to the people that you love. And so one of the only ways you can kind of circumvent some of that is to just pretend to not feel so shitty. And so that's at least that's my perspective on it. So I guess what are the takeaway I want you to take from this podcast is if you are somebody who is chronically ill in whatever form it might be, and you fake being. For your own sake, just know that I understand because I do it too. You're not alone. And if you are somebody who is not chronically ill and you have someone in your life who is, first of all, take any assumptions you have, that somebody might be quote faking it when it comes to their pain and put it out the window because chances are, if you know somebody who is chronically ill, And you can see that they're in pain that day. Chances are they've been in pain every day and that day it's just excrutiatingly bad. I know that. That's what my husband actually has said as much to me that he knows that when I actually talk about how bad I'm feeling, it's like way worse, because I wasn't talking about how bad I was feeling before it got bad enough for me to talk about it. So just, just keep that in mind. What you see with the chronically ill person is often what's gotten bad enough for them to allow to the surface or where they can't hide it anymore. This is not the same for everybody. I'm not talking. This is not, you know, everybody's experiences are different, but I think that there can be between, I think the real stigma for chronically ill people is both the long time. Not listening to so many people when they talk about like the things that are wrong with them, as well as, uh, and I'm going just go back to it, but like the, with the opioid epidemic and the problems that it has had with things like pain management, it has become stigmatized to talk about being in chronic pain all the time, because people think you're just talking about it to get. And I just, I wanted to talk about this because I think that there are some of you in my audience who will resonate with this, and I want you to know you're not. I love to hear your thoughts on this topic. Let me know on Instagram at @llamaletters, or you can message me, uh, using my email. I check all the links out in the description or the show notes below. I hope you have a wonderful day. I hope that if you are somebody who is chronically ill in some form or another, that you have as good of a day as is possible for you. And I hope if you are not chronically ill, that I hope you have a great day as well. 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