No, I Am Not Faking My Chronic Illness.

Welcome to Everything You Need is Within, a Spotify Greenroom live audio show and podcast produced by and for Gen-Z, with me, your host, Gigi Robinson.

So I'm gonna go live and 5,4, 3, 2, 1. Hello, everybody and welcome to this week's episode of Everything You Need is Within with me your host Gigi Robinson, and I am very excited to introduce two amazing people that I met over the course of the past year, which I can't believe I've already known both of you for almost that long already. But they are chronic illness and disability advocates, and nonprofit founders and just absolutely incredible people that are pioneering the industry of what it means to accept and also live with disability and chronic illness. So without further ado, welcome, Tiffany and Melody, Tiffany, why don't you introduce yourself.

Hi everyone and thanks Gigi for having me. So my name is Tiffany Yu, pronouns she, her, and I am the founder and CEO of Diversability, which is a social enterprise that's focused on elevating Disability Pride through Disability Community, visibility and engaged allyship. And so the informal way I describe the work that I do is that I think that disabled people are amazing, and I would like other people to, to see it that way as well. And that's actually what keeps me going and I come into this work based on my own personal experience. I was involved in a car accident at the age of nine. My dad was driving he unfortunately passed away, I ended up shattering, a couple bones in one of my legs which then healed. But permanently paralyzed, one of my arms. So I have not only a visible manifestation of my disability, but much later, I was diagnosed with PTSD or Post Traumatic Stress Disorder. Related to that car accident and Gigi I know you and I have talked a lot about post traumatic growth or having experiences of it, of PTSD, so I feel like I've been able to manage my PTSD symptoms, and I will also acknowledge that I have also, I also feel like I've experienced moments of post traumatic growth as well. So thanks so much for having me.

Amazing. You are incredible and for those of you listening, I had Tiffany and Melody separately on, I think what I like to call "the archive" episodes of Everything You Need is Within" but this is a brand new season a brand new series that I have going over here in greenroom, and you can also catch me on actually both Tiffany's podcast Tiffany and you and Melody's podcast which I will link in the description of this episode, but Melody introduce yourself.

Thank you so much for having me on. And the crazy thing is Tiffany I didn't even realize your connection with diverse ability so I follow both of those and didn't realize your connection, there so amazing work and that's really awesome. And for those of you who don't know me my name is Melody Olander and I am the founder of But You Don't Look Sick. So we are a nonprofit that focuses on raising money for patients to pay for their medical bills that aren't necessarily covered by insurance. So a little bit about me, when I was 17, I randomly woke up one day, blind in my left eye and in excruciating pain. Before this moment I never had any health issues. I went to the hospital where they medically sedated me and couldn't figure out what was going on. From there, I remained undiagnosed for the next two years, until I was finally diagnosed with a rare neurological disease called CIDP, so it is a demyelinating disease very similar to MS. And on top of that, I also have pots and EDS and just throughout my entire journey really would tell people about what I was going through, and I immediately received the comment "But you don't look sick" or "but you look so good." And it drove me crazy. So when I initially started this foundation and all this project and I was thinking of a name being facetious, I decided to call it, "but you don't look sick" because of how much I just heard that word throughout my journey and that statement. And when I started sharing my journey online so many people related and responded to it, whether they have a visible or invisible condition, there's situations that they can really relate with. So that's a little bit about my background and my story.

Yeah, I, I relate to both of you so much. And I guess if you've been listening for some time, you'll know that I also live with a chronic illness called Ehlers Danlos Syndrome. I live with pots and mast cell activation syndrome as well, and at times I found it to be what I think is commonly known as a dynamic disability, and essentially meaning sometimes I will be okay totally and and fine and then other times I will feel like crap and I'll be totally, you know, bedridden or like chair bound and I think that's something that's really important to acknowledge for anybody dealing with a chronic illness or disability is like you don't always have the spoons, which is kind of an analogy that we talk about quite often in our community, and it's just been so difficult to find at least for me while I was in college, it was so difficult to find people that also had chronic conditions, but the more that I talked about it similarly to both of you, the more I found comfort in building a community. So I guess my first question and also tonight's episode, I would love to be very like conversational. You can unmute any time, if anyone in the chat, or in the room listening, has questions just ask them in the chat or just raise your hand and you can come up and join the party up here and ask us some questions and weigh in because I know that a lot of looking okay most of the time, and having a dynamic disability or dynamic chronic condition can really be damaging for your mental health and then a little bit later, I do want to go into trigger warning, some troll stuff going on, on Reddit, which is very triggering for quite a lot of people including me and some of my friends who have been victims of it so yeah, the first thing I wanted to talk about is the way that media portrays disability, I would say, this one's for Tiffany first, because you know I know to Diversability gives incredible resources not only on Instagram and on Twitter but on your websites and on your podcast you just get such amazing, and in the panel events, honestly, those are some of my favorite, but you give all of this really tangible information about ways to help disabled people kind of step into the light and also not make it a bad thing. So do you want to just talk a little bit about, like, your passion for that?

Sure, I mean that's a really great question and Gigi supported it but we recently launched a campaign with the, with the phrase, "disability is not a bad word." Now on a shirt. Um, but I think for me, so I, I usually share I'm the first generation daughter of a Taiwanese immigrant and a refugee from the Vietnam War. And I acquired my disability at age nine, and what happened from, you know, maybe nine years old until I was 18 or 19, I feel like I have what's called like selective memory related to trauma. And I bring that up because within an Asian cultural context, being disabled is extremely taboo, it's, it, it means that something was wrong with the family or that it's cursed, that a child or someone in the family became disabled. And so I grew up with so many harmful messages around my own sense of self worth and who I was, because now I was in a now I was in a disabled body. And, and so I grew up believing that I needed to fix myself that I needed to hide my disability, that my disability was so shameful I shouldn't tell anyone about it ever. And that energy, you know like fast forward like 12 years after became disabled like, that's a lot to be holding holding inside of myself, and I've recently been reconnected with some people that I went to high school with, and they all share that they knew about my arm but they didn't know about the car accident, and it just reminded me that by not being able to be the full embodiment of myself, I was this like shell of a human being. So to go back to your original question which is, you know like what are the narratives that we see in the media. It's, you know there's a TED talk out that I think it's called "the danger of a single narrative." And I think that when we think about a disability experience. One of the things that we often tell people about with regard to allyship is to understand that disability is an individual experience right you can meet two people who have my exact same injury and we live our lives in very different ways. So because we get caught up with these harmful narratives that are perpetuated by the media around disability as a tragedy, disability is the worst thing in the world, feelings of pity and shame and victimization around that experience. Like when we see that in the media, it then enables us to think that, that that's what it's like. And I will say that over the past decade or so, you know, I started Diversability in 2009. I became really curious about what about look like to like myself, Because I, and, and, you know, I feel like everyone who's on this show can resonate with this we just get so many messages that we should feel shame about who we are. And it's not only in our disability or chronic illness identity but also as women. And I, yeah I'm tired. I'm tired of not, not, I don't know, I'm tired of like not liking myself, I guess, which, which to me kind of became this exploration of what does it look like to be proud to be disabled, you know, what does it look like to live well and to be disabled because I always felt like I always felt like those things were mutually exclusive, that disability only fit into this single narrative that unfortunately you know my parents had internalized and passed down to me. And then, I believe all of these things about myself in this community that I was a part of that I've been working on, on unlearning.

Yeah, I love, I mean I don't love that but I love what you said about it, because I feel like also which you can listen to on the podcast episode of Tiffany's show that I was on about kind of like the moment where I kind of realized that I was disabled and that my, my disability was dynamic and constantly changing. That's something that was very individual to me. And as I'm writing my book I'm like talking to so many different people who have a similar experience, but their experience is definitely something that is unique to their own life and their own hardships and the way that they got diagnosed and the way that the doctors treated them as, you know, women, men or non binary people is completely different than the way that you know they may have treated a male. And I think it's, it's just been a very interesting process to kind of like, collect research on and write about these experiences, and talk about these experiences as a community as well because we can collectively kind of like find comfort in a way of knowing each other's, like, pain and relating to that I think for me that's been something that I've kind of related to a lot of people about, especially I think with Melody here because we both live with EDS and POTS. What do you kind of think about your relationship with how you view your conditions on your illness and disability if you consider it a disability?

Yeah of course. So, for those who really don't know about my background and my story. I wasn't always disabled, I wasn't always sick, this condition was something that really started out of nowhere for me. I was fine for 17 years. I used to be a boxer, I used to be a dancer. I was a fashion model. I had a very active lifestyle. I was about to be graduating and starting University on a scholarship. So, very active person type A personality, never really was involved with the disability community, really knew anything about this besides wanting to go into the medical field myself for studying. And when I became kind of sick overnight. I woke up with all these symptoms, and I ended up in the ER and when nothing was coming back on images and things that weren't being very conclusive, or making sense. They started accusing me because they didn't know what to do so they said well this doesn't make sense, it must be an eating disorder, because I was very thin. I was a fashion model at the time and one of my main symptoms too as well, because of what we know now was the POTS was, I was passing out and I was throwing up all the time, but instead of looking into that, looking into my heart rate, every time I would go into the ER passing out throwing up, they would look at me and tell me you need to eat more. You have an eating disorder, you're wasting our time. Leave. And that went on for a few years to where I really questioned my sanity I questioned is anything wrong with me. Should I even go to the ER, the times where I finally forced myself to go to the ER was because I felt like I was about to die from not having any food in me and from being so severely underweight and what we found at the time was, now looking back I knew I was having seizures at the time, I was having POTS episodes, and my heart rate was spiking and then stopping so I would pass out. A lot of severe things that doctors were just telling me, or in my head. So when I finally got diagnosed, the first thought in my mind was okay I'm not crazy something's actually going on with me. I'm not making this up, because I had no idea I was, when you get told that so often, you start to lose your mind all of a sudden you start to question what's real and if this is actually going on, and questioning the severeness of your own medical history. And then when I finally saw a doctor that understood what I was going through. He's like yeah your entire autonomic nervous system is failing right now and your myelin sheath is degenerating. This is a really serious disease that if we don't treat it, you'll be in a wheelchair in a few years, and I was finally validated for the first time, but again because I looked okay, I didn't look sick. When I told people about this condition, and again it being a rare disease and people not knowing what it was. They would be like, Oh, I don't know what that is, so it must not be that bad but I mean, you look good, so you must be fine. And it was that constant narrative to where I just stopped explaining it to people and I just pretended like I was okay, a lot easier to pretend like I'm healthy than I'm saying, but it eventually got to the point where I couldn't hide it. I mean, as we all know it was a place out of force where I had to share my story, my treatments weren't covered by insurance so I had to start a GoFundMe. I had to really, I had mainline catheters and ports, and ended up in a wheelchair anyways, so it became visible and that's really when I started to embrace that part of me and really understand okay, like you said, it's a dynamic situation and sometimes I'm not in a wheelchair and sometimes I'm in heels and I look great and other times, I am in a wheelchair and look sick and we just need to accept that as a part of life that, what you can see doesn't mean that that's the full picture of what's happening.

Yeah, I so resonate with so much of that and again like I don't love hearing these stories of how you endured all of these symptoms and all of this like medical gaslighting, and just being told constantly that nothing's wrong with you I really so resonate with that and what I guess my next question which could be for either of you and I definitely would love to share some things on this as well, is like, how would you talk to somebody who was newly diagnosed or who is getting a diagnosis that is potentially going to be something that they're living with for the rest of their life. How would... How would you talk to them about chronic illness because you don't or disability like you don't want to scare them, but at the same time you want to make sure that they feel seen they feel heard and also have the tools to be able to stand up for any of the doctors or therapists or friends or family that don't believe them. So what would, yeah, what would you do in that situation?

I mean, I guess, if you don't mind, Tiffany, I guess my first piece of advice to anyone is don't rely heavily too much on one source of information, do your own research and look around. When I first was diagnosed, the first group that I went into for CIDP it commonly affects older males. So when I went in this group, it was super depressing and it was all these older males and they were doing a weekly update about who passed away in the group that week. And that's what I thought my life was I was like this is horrible. This is miserable, this is what support looks like for me out there. And then when I started looking out at all these other resources and all these other pieces of information from podcasts, other patients themselves. People who have similar conditions, other disabled voices and communities. That's really where I felt more comfortable to be myself because I was surrounding myself with people who were like me and who understood me and what I was going through.

Yeah and I think for me, I talk a lot about grief. I think it is I think Brene Brown says that it's like the one of the emotions that we fear the most, when all of us have some experience of it, even in the context of the pandemic. And so for people who acquire their disabilities, or, you know who are on this chronic illness journey. I remind them that they are going to be experiencing grief, right, grief is the emotion you feel when you lose something. It doesn't always have to be. With regard to human beings life, it can be a loss for relationship, a job, your body changing, you know, so, um, so, so the first thing is grief, and it's okay to be sad, because you're learning new things about your body, but what I remind people of is that the twos. There are two stages. Two of... the final two stages of grief, are what are called acceptance and meaning. And, you know like, I'll just share a brief anecdote which is a lot of in the beginning of my disability advocacy work, I would get invited to potentially host some disability simulation exercises so we put a blindfold on someone or tie their hands behind their back or bring in a wheelchair. And the reason why I don't do those anymore is because all that happens in that type of quote unquote empathy building exercise is you experience the immediate loss, right, which is kind of the first couple of stages of grief and a one hour workshop is not enough time to reach those final two stages of grief, which are acceptance and meaning. And so then you don't really walk away being like, oh man like Tiffany lives such a great life instead you're like wow life must be so hard if you can only use one hand right so, So that's, so I just wanted to bring that up in the context of this I do agree with, with Melody that finding finding communities are so important and so helpful, and in community you know there's a term that we have within the disability space coined by Mia Mingus called Access intimacy and access intimacy is this idea that you can walk into a space and not have to explain yourself, not have to ask for permission people just get it. And I think that many of us who have disabilities or chronic illnesses are are on this journey of finding access intimacy. Wherever we go right, I mean you could also sub that phrase access intimacy for belonging for people who understand even though, again I want to highlight that our experiences are individualized so, so that's the, I don't know if that's necessarily advice but I know that, especially in the initial onset, it's going to be shocking. And again, if all of the messages that we've received from the media's portrayal of disability are that it's a tragedy and it's very sad, then it's, it would be common for us to feel sad. If we became disabled right but again it's, you know, I think I spend so much of my time thinking, my one body right now is the disabled body, and I don't want to spend any more energy, wishing that my body was something else that, you know, in Gigi in your words like that that spoons, that's energy, like trying to want to be something that your body is in so. So yeah, so that's my contribution.

Yeah, both incredible, incredible points. I am obsessed with the idea of like the grief of also leaving behind your identity as an able bodied person and like the life that you've led before your diagnosis or a your accident or whatever happened, that, you know, made you identify as disabled or chronically ill, whether that was a diagnosis or something traumatic that happened to you. I think that that's, that's an amazing point and there absolutely needs to be space held for that in your personal life and it can take such a difficult like it takes such a heavy toll on you emotionally and physically and I think one of the most difficult things for me has kind of been, how can I talk with people that I love about these boundaries and about these emotions when I don't fully understand them because I'm still grieving like who I once was. I think that was the biggest difficulty for me especially as I was in college, and I personally found comfort in creating artwork, honestly, for those that have seen my book "Discourse Between Myself and the Waiting Room" it's kind of a photo essay that brings me through the life of a chronically ill patient and what that looks like. So that has been kind of my creative outlet and what I like to do I know melody, has written a book. And I know Tiffany, you create these amazing videos on Tik Tok so to anybody who is, I think trying to maybe cope and come to terms with their condition, whether they're newly diagnosed or they've been diagnosed and just haven't really acknowledged it themselves. What kinds of tools would you suggest that they can kind of look at to familiarize themselves with? I think the self actualization, like the self actualizing moment of, okay, I need to change something in my life so that I can honor, the way that my body is now, and the way that it will be moving forward.

I think a lot of it is fighting that internalized ableism that we all have. I mean, fighting these expectations and things that we think we have to get done, and that was for me, the biggest struggle was fighting myself instead of really just accepting, how I was currently, and like, you've said and we've talked about disabilities are dynamic they're constantly changing. I've been in and out of a wheelchair multiple times, I'm on crutches. Now, I know that things constantly change and I know I'll be out of these crutches unable to walk around again, and I know that I might end up in a wheelchair again. But that doesn't mean that you should only pay attention to those situations or those scenarios or focus on what you can't do. Every day, I let myself learn new things and experience new things and do what I'm able to do, and throughout accepting myself I've learned so many new hobbies and skills and talents, just because I finally accepted what my current limitations at the moment were, and it allowed me to explore another skill or another talent that I maybe didn't know that I had and similar to what you said with your book. That was how I ended up creating my book was because I was able to work on it when I was having really bad mental moments when I was fighting my mental illness and I was depressed and in between doctor's appointments and I would work on this and share how I felt, and it made me be able to focus on this art that I really wouldn't have focused on before. And there's times where my body is strong, and I let it do physical activities like Pilates or moving or dancing. And there's times where I can only be in bed and that's okay, and I need to focus on the things I can do in the moment like resting, listening to music or doing art. And I think that's what starts helping is when you just focus on what you can do as opposed to what you can't do or what you used to be able to do.

Yeah, I guess I'll, I'll add two things on to that, and, and I Melody I love what you said, I think, I think all of us are a little bit ableist, and when we acknowledge that, and the unlearning process that it's going to take and the fact that we live in a society that upholds unable to structure. I think the sooner that we get that out into the open, the sooner that we can you know start to figure out how we can co create a world that creates the infrastructure for everyone to thrive in the in the in the way that they want to. So my two contributions to this are. Number one is I kind of like so, so I'm pretty sorry... I spent 24 or almost 24 years, navigating the world, navigating a two arms world with one arm. And I'll just share a little funny story so I recently started using Bumble. And as part of Bumble they require you to do like a photo verification where you have to take a selfie so they make sure that your photo matches your photos match who you say you are. And so the way that they're trying to get people to knock in the system is you have to take a picture of yourself, with your fist up so that I'm like, Okay, how do I take a picture of myself, using my only hand. My only working arm. Um, so that anyway so what ended up happening was I had to hold the phone with my foot with one foot, and then I took a photo with my toe on my other foot. While I was using my one arm that that does work to make that fist connects to my face. And the reason why I bring that up is because sometimes I just laugh at like the ridiculousness of things that I've had to like hack. And I think if I like, look at my experience that way with a little bit of playfulness, it like helps me not get so frustrated that we are living in an ableist society you know and that I am constantly barraged with messages about around people being like, wow, like your life must be so difficult, you know, and that in itself right that assumption that presumption that my life is hard, is the type of microaggression my everyone's life is hard and I don't want to diminish, of course, a disability experience or a chronic illness experience, because we do have, you know, additional layers that do make life hard, but how about like, I, I introduced that into the conversation, but rather than you defining that narrative for me. So also first is kind of like acknowledging the ridiculousness of it just like tapping into my own inner child and be, because, because I also have people come to me and they go, Tiffany, your life like looks so amazing I wish I could be you, and then I go back to them and I was like, Do you want childhood trauma, like do you want to be in the same car as a parent who passed away like I would not wish the experience that I had of how I became disabled on to anyone. Because, but those are all the experiences right that have led me to this point. So yeah, so I think it's just, just having a little bit of lightheartedness with with my body and to Melody's point what I can and what it can't do, and how I feel my life like my way through it. Yeah. The second thing, if you're okay I have to. Yeah, So the second thing is, I have mentioned her name Brene Brown before, but I just really, I love everything around the research that she's doing and whenever TED talks was about shame and shame resilience. And one of the things that she says is that shame festers in secrecy silence and judgment. And I became super fascinated in the last couple of years to look at any area of my life that I felt shame around, and to figure out a way to put some visibility on it. And so interestingly enough, I, you know I've been disabled for 24 years now. For the past 10 years, I've done a lot of work around learning how to share my story and being okay in my disability narrative, but the reality was I had, I was really self conscious about the visible manifestation of the way my handbook. Knowledge enough in the past year of emerging onto Tik Tok.

I started showing my hand and videos and you know even pointing at it and you know putting it off and then all of a sudden, and then people of course, would make comments about it, and their own little microaggressions, of course, but then I was just like, this is what my body looks like, and you know like, I noticed that I had some shame around the way it looked. But then I was like I'm gonna use my social media platform as a way to squash that because I'm just tired of letting shame have that power over me. Because that ultimately, like having that that much shame like. And then this is actually why I'm so open about about my life and my disability because I did have shame around it for so long, but by shedding so much light on it like I'm where I yesterday I wore my sweatshirt that has the word disability on it like printed in super large letters like five times on the sweatshirt. And this ties into my third. My third point which is, I ran into my friend yesterday, and he was like Tiffany. I just love the way that like, you are so open about your disability, like you just own it and like you even now have like a sweatshirt that says that says like disability and like really large letters on it and I was like, Yeah, like that feels really good to finally like, be at a point, again, I think this ties back to my earlier answer where I just like myself, like, again how radical of an act is it to like yourself, and of course that's a journey in itself, but, but I I'm so I'm so grateful to to be on that journey.

Yeah, I really loved that both of those points, especially the one of like when other people, all of a sudden you're like you know, kind of like that idea of inspiration form where they're like wow you're so inspiring and you're so brave and courageous for sharing your story and it's like, yes, but this is also just who I am inherently like they're not separate things, and me being disabled or me being chronically ill does not make me, you know, more inspiring for achieving the things that I've done and I've definitely grappled with a lot of that because, especially in college, people are always like, You do so much and you know, like, how are you doing so much if you're chronically ill and this is kind of into my next point which is really some deeper stuff I wanted to get into is of the recent BBC article that just went live on, I guess, two days ago which was August 4 2021. And it is about are chronic illness influencers really faking it. And I think that's, you know, the most frustrating thing I think you could tell anybody living with a disability or chronic illness is that one that they like look okay, because obviously that completely ignores all of the things that you can't, you can't tell are going on with somebody, but also on top of that it almost invalidates their experience. And back to what he said about internalized ableism, which is a very honestly I don't think it's a very complex thing I think it's a very common thing. Because, as also Tiffany says like we're brought up in a world that is created for an able bodied person so when, for example coming into New York City, somehow, in 2021 Not at every street corner has a ramp to get a wheelchair on it. A good friend of mine who also posts on Tik Tok. She's a paraplegic, as well and in a wheelchair and she pointed out to me that you know that famous TKTS giant triangles of steps in Times Square is not wheelchair accessible. I mean how frustrating is that that you go to be a tourist in one of the greatest cities in the world, and you can't even do it to its full potential because the world that it was created for is not a world that you fit into. And that is something as a chronically ill or disabled person that I feel like can be very infuriating because your access isn't even honored in the first place. But I really want to separately, get into this subject of are chronic illness influencers, really faking it. I just want to read you guys that the headline, as well, like the little blurb that has come with it. Just because it is so infuriating and I'm not sure if either of you have delved at all into the Reddit threads of illness fakers, but I, I stay off of Reddit for a reason. I think it is one of the most toxic places anybody could go to book about some things but regardless, here is what this article on BBC News says online with 15 million people in England alone living with a long term condition and numbers rising, it is no surprise the chronically ill community has exploded online in the last few years, celebrities like Lady Gaga, Selena Gomez and Lena Dunham, are opening up about their conditions and chronic illness influencers are attracting huge social media followings. But as visibility has grown, so accusations of fakery. A new BBC documentary "Sickness and Lies" explores whether the accusers are right, some influencers faking illnesses for fame, money and attention. Journalist...I'm not going to talk about the journalist, who is disabled herself, meets both accusers and their targets and discovers a new condition Munchausen by Internet describing people who fake illness online with some fatal results. And before I dive into how messed up I think it even is that something like this was written in the first place, is the fact that it highlights how internet... internet accusers of basically trolls just to break that down even further... Reddit trolls have discovered and labeled, what they think are chronically ill people online posting about their illness, faking it calling it Munchausen by Internet, and talking about how those kinds of people are valuable because it is saving them from, ultimately, I think perpetually being sick. Instead of placing an emphasis on how they can highlight the amazing work that so many disabled artists creators have, you know, speakers, etc. Like, are so I just was infuriated by this today, I don't know if Melody you want to jump in or Tiffany, like this whole thing just has been very, very frustrating for me and also again, anybody down below if you have anything to say just raise your hand and I'll bring you up on the stage.

One, I think the fact that it was BBC who published this is, I don't know, extremely disappointing, to say the least. I mean they're supposed to be a news platform. This isn't news this is giving attention in the spotlight to exactly what you said trolls and just giving the spotlight to a bunch of Reddit trolls. Unfortunately this is a topic that I've talked about before, during an interview with The Daily Beast, they were asking me about this topic of the radicals, and specifically this train that has I think about 80,000 followers in it or something. Again, accusing people of faking their conditions online. Unfortunately you and I Gigi we've seen a lot of our friends, accused on there, people that we know have very serious and chronic conditions and disabilities. So it's confusing when I see these kind of things, because like you said it's not placing an emphasis on why are we seeing so many disabled people, why aren't we talking about the fact that yeah, one in three people are disabled or chronically ill. That's a lot of people, if you're, if you're looking around and you see one in three people yeah that's a lot of freaking people with disabilities and chronic conditions. Yeah, so I got,

I think I read a stat last week when I was doing some research that about 75% of the population lives with, like in the United States list with a chronic illness or disability and that absolutely blew my mind again like why, for some reason people don't want to believe other people's like conditions like, I mean, I always say that like this could be similar, like you would never tell somebody who's allergic to like strawberries to that you didn't like them because they can't eat strawberries, and they're allergic to them, right, like you would just be like, Oh my gosh, I'm so sorry, like I'll do my best and, you know, not get anything with strawberries so that you don't get sick. Like, why can't we just treat chronic conditions and disabilities like that like, oh my gosh.

But I think a lot of it comes back to that, what we were talking about that internalized ableism and letting that continue to spread, I mean even in Tiffany's story how she was talking about having to take that verification photo, and how, instead of using her one good hand and taking a picture of her disabled arm and just accepting that she had to go through all those things and fight her disability to take a photo like that. That's just one of our examples of internalized ableism or making ourselves walk further than we actually can, because we think we don't deserve it or we have to, or this is what we have to do, but if we all like you said, if there's 75% of us, what if we took that stand and said, No, fuck you, I can take that picture with my fist up, that's not a thing for disabled people, or no there is 75% of us that are disabled that is going to be a big part of social media, as opposed to taking the toxic route of thinking or assuming that people are faking, why not just realize the fact that whether you have a disability or not everyone's struggling in some way someone can have their parents have passed away their grandparent, they can have someone that's sick, they could be dealing with financial stress. There's so many things that you can't see that we can be dealing with that barely have to be this big dramatic thing that you can see, and I think a lot of people don't realize that unfortunately.

Yeah I think with the, with that article I mean it made its rounds at Diversability too and we're gonna, I think we're gonna have a response piece coming out from our end but I just, it's like another layer of of medical gaslighting, or even just gaslighting you know because you like in Melody's story you had the doctors claiming it was something else but now here are other people, but I thought what was interesting, I mean, i I've never been a big Redditer but it like, I don't know there's part of me that that was like, who cares if a chronic illness person is not like, sorry, I think what I'm trying to say is that I am so excited that there are so many chronic illness influencers, because they're shedding light on their lived experience and enabling. You know what, I think it's 133 million Americans who live with chronic illnesses like giving visibility to a community that is so it's so like, non visible, I guess I want to say. Um, and so I go, I think all of this kind of comes back to this idea of like, maybe you see this this with you in the strawberries but it's like, why can't we just believe people? Right, rather rather, and instead we nitpick and we diminish. And I wonder if part of this comes down to representation, which is, if you have only, you know a couple of chronic illness influencers, because the people who I think are in this Reddit group have chronic illnesses themselves. And that's why I like continue to say that we need to highlight that our experiences with disability and chronic illness are so individual, like my, yeah, so, so that...

I think, yeah I, I so relate to that I also think that it's so interesting that there are chronically ill people in that Reddit forum, but, Um, I think something that at least really intrigues me is that kind of like the same way that burnout culture can and hustle culture can kind of be glorified right like, oh my gosh, like, yeah I'm always busy, I'm so burnt out or I didn't sleep like at college it was like, I haven't slept for five days, or slept oh my god sleep. You guys can tell how I'm doing clearly. I haven't slept for five days, or like, I pulled an all nighter three nights in a row, you know, that that shouldn't be a competition that should be like, Oh my gosh, like, I hope you're okay like what's going on are you overloading yourself, what can I do to support you. But instead, these people who were a part of this forum, I think, are almost enabling this idea that like, you need to visibly look sick, or you need to visibly always be in the hospital or always be taking medication, and I think the more we can shift the narrative to understanding that chronic illness and disabilities can be dynamic, and they can fluctuate and the way that you appear can change. I mean, think about wearing a cast when you break your arm while you're going through physical therapy for the month after that that happens, you don't look the same that you did the day that you fractured your elbow probably sobbing on the ground with like maybe like a bone sticking out like you don't necessarily look like that three months post operation or post wearing a cast right. So, even if you deal with a condition or an injury short term. Imagine what that feels like, if that's something you have to deal with forever. And then on top of that, how can you take control and kind of be like driving your own ship and say like look like. Some days I feel good. Some days I don't and, but this by no means is saying, for everybody to begin posting on social media about their condition like that is totally up to the individual and if you choose to do that I highly recommend following both melody and Tiffany's and their nonprofits, which would be four accounts and I link them in the chat below. Because, to build a good audience and to build a good community that is within such a field of, I don't think it should be controversy but apparently according to BBC it is. You, you have to be aware of what's out there. And I think educating yourself on as much as you can before you talk about it is important but at the same time, our experiences are all adjacent to one another. They're not necessarily going to be the same, they're not going to be, you know, parallel, all the time but I think we can find a lot of comfort knowing how similar things are with other people and again that's how I really related to a lot of the work Tiffany was doing as an advocate and melody is an advocate, and also dealing with distinct issues themselves. So, yeah, that is what I have to think about that and I also am just really disappointed to see yet again in the media like they had the opportunity to just do so much better and highlight people making a change in the industry but instead just made it all about disproving our reality of living with conditions, and I agree, like you shouldn't care really about other people's business. One of my favorite quotes which I say all the time, whether that's on IG, Tik Tok or on my, my pod here, but it is none of your business what other people think of you, and, like, that is just that. That's that. So if anybody else wants to contribute to this like conversation right now, now's your time. I'm gonna probably hang around for the next like five to 10 ish minutes and if you want to talk just raise your hand and I will bring you on up here. So, yeah, and also melody or Tiffany if you have any like, final thoughts on this, please talk about them.

I mean, kind of just one of my last thoughts when you were talking there was, when you said, I guess, shame on them for not highlighting all the amazing things being done by the chronic illness and disability community. This could have been a moment where they talked about, like we said why is this number of chronic illnesses and disability going up. Why don't we talk about this number of how many of us out there, there actually is that are maybe silently struggling because of this stigma, and instead, all they did was add to that, if someone was maybe just starting to feel the competence and sharing their story or posting about their disability or showing who they truly are. And then they saw that article and now they might feel scared to do that. But I say, don't let things like that scare you off. Say if feel comfortable to be who you truly are. Because like you said, Gigi it's none of our business what other people think of us, and you just eventually as hard as it is and I know it's easier said than done, you just have to get that confidence, eventually to not care what other people think about you, like I always. If someone hates my disability, for me that's, I have blonde hair, that's the same as you coming up to me and being like, you have blonde hair. I do. Great observation, or they'll be like, Why do you have blonde hair, it's none of your business because I want to have blonde hair. Like, that's how I see my life and everything about my life and yeah I could be the other way around if someone comes up to me and says, I hate your blonde hair, why do you have blonde hair, I could be insecure about that and I could be like, Oh crap, you're right. Maybe I should have darker hair maybe blonde isn't a good hair color for me. But if I'm confident in that, and I like that who the hell cares, and I say, take that to every piece of your life.

Yeah, 1000 million 100 zillion percent. Thank you. Yeah, and I also on the note just real quick. I don't want to keep going in circles in circles but if you are struggling to come to terms with acknowledging your chronic condition or disability. Absolutely, like you can always reach out to me but I would again implore you to look at "But you don't look sick official" and Diversabilities I G feeds and websites for more resourceful information, and hopefully some community that you can find comfort in, And also note that if you did read that article that it again, is just an awful representation of what the darkest depths of the Internet can be for the chronic illness and disabled community of advocates online and also allies I know Tiffany and I have talked extensively about this as well but just because you're chronically ill doesn't always mean you're disabled, and vice versa. And for me it's something that feels as though I identify with both, I, I feel as though I have more of an ally to anybody dealing with a condition. Also mental health disorders fall under a chronic conditions or disabilities as well. So definitely if you are new, if you are recently diagnosed just don't. Don't let those other people who are judging you behind their phone screen intimidate you keep talking about what you need to talk about and to heal. When I was struggling the most at school and I was alone 3000 miles away from my family. The, I went to my teacher and I was like I can't like, I don't know how to feel like I'm showing up to class without my work done, and he said you know what, like, whatever you bring is whatever you bring and what other people think about your work is, you know, it also this is within the classroom so there were like 15 other people in my class, but he said, it doesn't matter what they think, it doesn't matter what their critique is like, I know what's going on with you and I'm just gonna make sure that everybody's being respectful and control that as much as I can but there's only so many things that you can really contribute into that and if you're putting your energy into healing and to making work, whether that's, again, our writing, music, social media posts, blogs, vlogs, writing, etc. Thanks Tara, you're very nice bye bye. It's something that you should definitely explore, and again if you ever want to share it with me, you're more than welcome to. If anybody else wants to talk. This is your last call. But otherwise, thank you both so much. This was so amazing. Both of you are just two of my favorite people out there, and I am honored to have both of you on this official version of Everything You Need is Within tonight on Episode Eight, Tiffany, where can people find you and your amazing work.

Of course, yeah. And I think, I think, just to finish on that last point. One of the things I try to remind myself of, of course, another Brene brown quote, but she says something she says you can't take criticism and feedback from people who were not being brave with their lives. And that's the end of a much longer quote that she has. And sometimes when I think about. Sometimes when I get comments from people. I'm like, why are people who don't even know me, having an opinion, are like having a say in how I live my life right and so I've been cancer. I oftentimes remind people that, as long as you're, you know, living with integrity and sharing your truth as you know it at the time, you know, and of course that can change as you get new information. That's all you can do, and that's okay. And then just have that be kind of like your Northstar or your grounding point is just that you are yourself and your story is valid and it matters. But if you want to follow me, my. You can find me across social media at I'm Tiffany Yu that's letter I, the letter M, followed by my first and last name, and then I do vote, do have a website tiffanyyu.com, and then you can follow Diversability, across social channels at diversability.

You're awesome, thank you so much, and Melody, where can people find you.

Of course, thank you so much again G for having me on today and it was amazing, getting to meet you and talk with you, Tiffany, and if you're interested in talking more with me learning more about our foundation. I'm on Instagram, but you don't look sick official. We have a website, podcast, but that's kind of our central hub for everything. And you can find my personal pages and everything. From there, as well.

You guys or you ladies I should say, are both so incredible, and I just admire both of you so much as industry leaders, beside me, and we're here fighting together and I just value your time and energy and thank you so much for coming here tonight. You are the best. With that said, I'm going to host an after party outside of here so thank you to everybody again for staying in this entire time I hope you all found it valuable. Um, if you want to find me you can find me at it'sgigirobinson on any platform, and make sure that you're following me here on Spotify green room at gigi. Thank you all. Good night.