 Good morning my beautiful internet friends. Welcome back. Today we're gonna have a little bit of a conversation and I'm just going to start talking because I don't really have a great intro for this but this is something that is under my skin and let me tell you not a lot of stuff actually gets under my skin thanks to being on social media over the last nine months. I think I've developed thicker skin. I mean I'm not like you know untouchable but things that don't get to me quite as much right but here's the situation. There is something that was said to me this week that bothers me sincerely really bothers me for a larger reason and I want to talk about that and this has been brought up in the sort of medical YouTube community before now and I thought about making a video then and then I didn't and I think I'll just say it now. I've had two videos this week that have sort of hit the YouTube jackpot algorithm they started going out to a ton more people than generally see my videos that's awesome as a creator it's really exciting it's really cool when more people start viewing what I've made there's also like six percent of me that starts internally cringing and tensing up because when my videos are going out to more people they're being put in front of people who aren't a part of like the Footless Show community people that I don't communicate with who don't normally see my stuff or comment and the comments that start coming in are just not great to put it lightly and generally that doesn't really bother me that much anymore it's really not a big deal it's part of the world that we live in it's part of how YouTube works okay cool but I saw one that just uh and I don't actually have a screenshot of it because I don't I don't really block people like ever I've blocked a couple people who have wished death upon me and that's it but I don't like silencing people generally speaking because I think that people should have a voice even if that voice is saying mean things so as long as you aren't threatening people you're welcome to say whatever you want but I immediately blocked this person because I was like no I don't know just go away I don't want your voice as a part of this community and you are not welcome here and what they wrote was I'm really getting a munchausen's vibe from this chick first off I think it's great that doctors diagnose people based on vibes I didn't know that that is how the world worked now too much sarcasm okay I'm gonna dial it back a little bit editing Joe here I realized I didn't actually explain what munchausen's syndrome is for anybody who doesn't know what it is munchausen's syndrome is a factitious disorder imposed on self it's a type of mental illness in which a person repeatedly acts if he or she has a physical or mental disorder wanting truth he or she has caused the symptoms or made them up so it's essentially when you are making yourself sick or pretending to be sick also please understand that I am not condemning or speaking ill of people who do have this mental illness no one wants a mental illness no one wishes it all themselves here's the thing I don't look sick I don't look like I'm in pain literally all the time and that's fine I've learned to deal with that but it's also been a challenge to try to get people literally anybody to take me seriously which is which is really difficult to try to convince people that your reality is real even doctors even professionals so many don't listen don't take people seriously and if you have ever had a serious medical issue you'll know what I'm talking about and people leave comments like that and I thank god that they have probably never had severe or significant medical problems I don't ever talk about like ableism which is kind of the idea of being able bodied and sort of having prejudices based on that but I feel like that kind of a comment accusing someone of having a mental illness of making up physical illnesses based on a mental illness comes from a place of such privilege like telling me that I give off the vibe of someone who makes up being sick is so frustrating to me because I have spent so much of my life trying to put into words my experience trying to put into words how and why things hurt how and why things are so wrong when I was diagnosed with a chiari malformation which is how my brain is literally swollen it is too big for my skull like it it crushes up against the back of my skull when I was diagnosed with that four or five years ago it was terrifying but it was also a huge relief because I finally I freaking finally had something to like show people and to say like this is what's wrong with me this is why I feel like shit this is why I get migraines all the time this is like this is the problem I actually had a diagnosis I could show people and it's like it showed up on a scan it was so terrifying and so liberating at the same time when you are dealing with chronic pain and chronic illness and you're also using the limited amount of energy that you have trying to convince people around you that it's real that's so screwed up and so backwards and has been my experience now the people who are closest to me like Brian and my family family believe me absolutely but I've had people who like didn't take me seriously I've had doctors who absolutely didn't take me seriously I have a very long and colorful medical history right and some doctors see that and just want to send me off to psych that's literally happened not that I've been sent off to psych but I'll link a video up above where doctors violated my patient rights I would say violated me and then told me that I was crazy my parents were there they can attest to this entire situation but if you don't like what someone's saying you can just call them nuts like that shouldn't work that way in our medical system but anyways we brought a lot of this up for me a little while ago was chronically Jackie is another youtube channel Jackie who made the channel and spoke dealt with a lot of chronic illnesses and pretty recently she passed away which is heartbreaking and as I was kind of looking into that I found entire pages dedicated to speculating on how she was making it up like entire forums of people going back and forth about how yeah she's way too mobile to really have all the diagnoses that she says she has and she's just doing this for attention and blah blah blah and it just made me so angry and like I don't like getting angry at people I try my very best to operate from a place of understanding as often as I can but that pissed me off like what right do you have to sit there and tell someone or speculate about someone when you don't have any evidence when it doesn't actually affect your life and what you're saying absolutely affects theirs I think why this like bothers me so much is that if you met me and you didn't know me at all and I was like hey I'm Joe and like shook I can't talk shook your hand and smiled I look aside from the fact that I'm missing part of a leg I look like a healthy normal vibrant alive 28 year old girl woman whatever I am well and have to have conversations with people trying to convince them that I'm not okay to have to constantly hear things like oh you don't look sick to have doctors who don't take me seriously because I look fine because I figured out a way to get out of bed that day is so frustrating to me and so when this person left that comment bothered me it bothered me for larger reasons like it doesn't bother me that one person thinks I'm making crap up like good for them it bothers me that the people who have never been in the position that I am in that people who have never suffered with long-term chronic pain chronic illness can just make off-handed comments that tap upon some of the deepest pain that I felt and I guess I just wanted to say that that sucks that that is not a little thing I'm talking about for like chronic pain and illness at large oftentimes people have to fight to be taken seriously oftentimes diagnoses are delayed years and years and years because people are not taken seriously it's so hard to advocate for yourself it's so hard to advocate for yourself when you're in pain when you have to use the energy that you should be using to like exist and live and take care of yourself instead to try to convince your medical team that what you're experiencing is real or your friends or your family it really bothers me and it really gets under my skin that people believe that they have the right to make those judgments and assumptions when they have absolutely no education when they have no training when they are not medical professionals when they are not doctors when they do not know someone's actual medical history and the truth of what's going on with someone especially online like people commenting on chronically Jackie's channel she showed portions of her life I'm sure she filmed when she felt okay which is what I do so you get like the best moments and you're commenting on the best moment saying she looks too good to be sick honestly another aspect of this is that you start feeling crazy you start feeling nuts you start feeling like okay maybe I am making all of this up because it doesn't have a cause yet like it doesn't have a diagnosis yet or you know I shouldn't be feeling this much pain or you know I can get out of bed so it's probably not that bad or or whatever you start convincing yourself or I should speak for myself I started convincing myself that I must want to be in this position if I was in this position like with migraines and debilitating pain that made it so that I couldn't work so I'd have to come home from work often so that I'd be laying down in a dark room for hours at a time wasting my life like you obviously must want this because you can't figure out a fix for it and no one else can like there was so much guilt that came with being sick there's so much guilt that came with being in pain and when people say stuff like that it just adds to it it is really hard to feel valid because there aren't a lot of sources validating you and I think that like validation in a perfect world should absolutely come internally but it helps when it comes externally too if you have the privilege of never living in chronic pain of never dealing with a chronic illness guess what I'm trying to say in this video is I would kindly request as a member of both of those communities that you use that privilege to listen to people instead of making judgments instead of thinking that you know things that you don't it reminds me so much of a conversation I had in college I will never forget this I was in a business 101 class and we had to make a presentation about something that was going on on campus and I brought up in my little study group a suggestion I was like what about sexual assault on campus and this girl who is my age turned to me and goes people make up those statistics I've never seen it happen so it doesn't happen because of course when it happens people hold up neon flashing signs is what I wanted to say but in her mind because she had never experienced or seen it presumably of course I can't speak for her it just didn't exist it just didn't exist people relying people were making it up and I feel like that's what happens too with this sort of thing and I absolutely realized that I cannot say that the person commenting hasn't felt chronic pain or chronic illness maybe they are dealing with it right now maybe they feel crazy maybe they feel unstable maybe they feel like maybe they're making it all up and maybe that's why they are expressing themselves that way maybe that's what everyone in those forums and websites dedicated to commenting on chronically Jackie maybe that's where they're all coming from but I suspect that a vast number of them are just people who have no understanding I would like to add some understanding to that that's why I'm doing what I'm doing here and to all the amazing people who I'm assuming are going to comment like you know don't let stuff like that get to you don't let comments get to you I absolutely understand that and I'm doing my best but this was one that just hit on the last conscious years of my life any like negative comment I've ever responded to I've tried to do so in like a humorous way or like you know whatever um this was not that this frustrates me this gets under my skin I guess that is exposing a vulnerability so there you have it please don't please don't hurt me with it ah anyways uh let me know your thoughts on this um sorry if I got a little vehement vehement is a very fun word to say I love you guys I'm thinking of you and I'll see you in the next video and I guarantee you it's probably going to be a lot more fun than this one thanks for sticking with me bye guys