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This is why we all appreciate what Anthony does. ❤️ He could’ve just interviewed them privately and just journaled it. But he decided to share it with the world to help us better understand these people.
Can you imagine being a kid and everyone just calling you lazy when you actually have a medical condition? All I can think about. Being dismissive in general - adult or child, it sucks.
It really does suck. I don't have narcolepsy but I've had fibromyalgia since I was a child (its rare in children) and was called lazy and unmotivated by my teachers. People need to realize that you don't always know what someone is going through.
Yep. Literally my school and parents thought i was lazy and unmotivated. A few years later found out i had narcolepsy. I knew it wasnt all in my head but after hearing so many ppl say it was i started to doubt myseld
It does suck. No one understands I can't control falling asleep in the middle of my tasks. Some doctors dont even get it and a lot of strangers just think I'm on drugs or something
Yeah.. For me it wasn't a physical condition, but childhood depression made me tired all the time and my body felt really heavy a lot and I didn't eat enough. People always called me lazy and it hurt. Can't imagine having narcolepsy.. I feel awful sleep deprived, these people are so strong.
Me, have adhd, was made fun of it since 1st grade after saying that im a special child thinking i have higher abilities than others without knowing the quote was used as an insult to mentally ill people
I love how he respectfully changed the titles from "the wonderous world of _____" to just the "world of ____" because we all know most of these disorders are not wonderful.
Lauren did a great job explaining how it looks like people with narcolepsy, like me, are in a deep and restful sleep, but their brains are highly active instead of recharging.
@Domi B wait is this a real thing because sometimes when I dream really vividly especially if it is like an emotionally exhausting dream I will wake up more tired even if I slept like 10 hours
This helped me a lot too as a wife of someone with narcolepsy. Whenever my husband would talk about that I would think, “wouldn’t that mean that you are getting a super deep sleep all night?🤔” but the way Lauren explained it makes so much sense now.
When that girl said she was labeled as "faking it" in front of her parents and her aunt and it seriously affected her life for the next 5 years, I immediately knew what she felt. That same exact thing happened to me and I broke down sobbing in the Doctor's office waiting room as a 27 year old man.
Totally. Same thing has been going on with me for *YEARS,* possibly over a decade by now. I'm only getting way worse (by the second, it feels like) and all doctors have to say is the same thing. "You just make yourself belive you're in pain. It's all psychological" is what I here all the time. Even if it was "just" psychological it should certainly be taken seriously. I struggle with mental health and physical health in many ways. I'm offered no help. I'm a former addict (DUE TO MY DAMN PAIN), so all doctors think without checking out ANYTHING, barely even questioning me about it is that I'm looking for drugs. Even though I'm sober now and have all the possibilities in the world to get ahold of drugs. So that's not the issue. I want to get better and good health. I'm only 23 y/o and my body functions worse than most. HORRIBLE pain each day, and I'm barely mobile. Bearing the thought of having to live in this body for the rest of my long life simply isn't bearable and it absolutely crushes me. I can't imagine how bad it's going to get. I'm no wimp at all, I have a very high pain tolerance, but I still feel like I'm constantly on the verge of tears due to the pain just about everywhere. I'm getting extremely neglected. I push to get help constantly, no one cares to actually listen.
@@idalarsen2540 Let me start off by saying I'm sorry and I've been exactly where you are right now. It took me a long time to find a doctor that would actually take my pain management needs seriously. Let me also say, just because you have actual scars on your body and reports that you've had multiple surgeries, it doesn't make you more believable. I had the same exact experience. I was labeled as a drug chaser, even though I was in the army, got hurt and had three surgeries, with scars that run half the length of my forearm on both arms, and my knee. Let me also say, being an "addict" is far different from being dependent on painkillers. I considered myself an addict years ago when I was going through what you are going through, and it wasn't until I found a GOOD doctor that they informed me that addicts and people dependent on drugs are two different things, but someone dependent can also be an addict. I am not saying you are either one, I just want you to think about the labels carefully and not just believe what docs tell you you are. There is help out there. It takes a lot of work, and doing that work while you're suffering can seem like climbing a mountain with no climbing gear on, while also carrying 80kg of weight on your back. I was lucky enough to get recommended to a pain management doctor who took me seriously and I've been seeing her ever since. She was able to get me on a medication that I don't have to take 6 times a day to keep my pain in check. In fact, I am now on the lowest possible dosage of this medication per day, and it manages my pain symptoms (mostly) without me being drugged up and high all the time. I believe in you and I'm here if you ever need to talk about anything.
@@gracie5463 "Girl" is a synonym for "woman", just as "guy" is a synonym for "man". This is English, words have more than one meaning. Girl is neither disrespectful or derogatory.
Janise’s story hit me particularly hard. I can’t imagine the torment of being constantly misdiagnosed and encouraged to stop trying and find the correct diagnosis. Thank goodness for the woman that encouraged her to stand up for herself.
I've had a Dr do that to me with my back. They make you take a scan tron psych eval before you can get a spinal cord stimulator put in and apparently I didn't score so great on it but my Dr still put it in. When I got an infection from the surgery he told me I manifested the infection because I scored bad on the exam. I was so dumbfounded by it, I couldn't respond to him but wtf. If I could mentally manifest things like an infection, wouldn't I manifest better things for myself? Lol
Toxic health workers are the worst thing, especially when they're dealing with their minds. Ive had a therapist who called me psychotic. Like LITERALLY tried to diagnose me like that. I was an abused teenage girl who had been depressed since 12 and had an ed since 9, but I decided to take it as a compliment, like "yas bb I'm CrAzY". I hated that therapist with a passion.
As someone that has bipolar disorder and being diagnosed for a long time I wonder how did her doctor missdiagnosed her. Like, having a mania episode is the exact opposite of this. My last serious episode I was sleeping about 3 hour a day and waking up full of energy. Also, the wrong meds can be real destructive. There is so many side effects that I wonder if she didn't has some other health issues due to taking them.
One of the most frustrating aspects of this disorder for me has been the lack of education, even in the medical world. I went through so many doctors, including sleep specialists, who did not recognize my narcolepsy because they were expecting overt cataplexy symptoms. Please keep advocating for yourself until you find a medical professional who understands your disorder.
When I got diagnosed I already knew about narcolepsy, so it wasn’t too hard to push my thoughts on what I thought I had. But I didn’t want to say that I thought that I had narcolepsy, so I just said that I was tired a lot and described my symptoms. The doctor had me do blood tests and it came back that I was SLIGHTLY anemic and left it at that. I was so upset because I felt like I was making everything up, but my parents let me go to a sleep doctor and narcolepsy was finally considered when I had told them that I was falling asleep while swimming during swim practice. So then I had a sleep test done. Results came back with me falling asleep right away for the night test and the five, twenty minute day ones. I also went into REM sleep all five times within three minutes (it normally takes people 90 minutes). Oh it’s definitely just me being anemic. 😂
this is so true. i cant speak for narcolepsy but i had my doctor who didn't even want to consider autism and instead just insists on therapy for social anxiety. partly because she was a social anxiety expert and also she didn't have enough time to deal with a "new" disorder.
@@mawar_kasturi My experience is kind of opposite to yours. As a child, Autism wasn't as widely known/understood, so I was never tested. But I was overmedicated, misdiagnosed, for years.... Now, as an adult, my therapist and doctor both think most of my diagnosises could be summed up under an Autism diagnosis, but testing for adults is almost nonexistent. So, still medicated, but not as heavily and we adapt my medication regime a lot.
@@StoriesbyIrish yess. i live in malaysia and the government autism awareness is low even in doctors. even though i can adapt well now, my only hope to get a proper diagnosis is through a private specialist. but i imagine things are better in the west nowadays
As a person with insomnia, it’s really interesting hearing from people who have the opposite problem Edit: I have been informed that narcolepsy and insomnia are not opposite problems from one another. Thanks for educating me everyone!
i have narcolepsy, for me while they are to different problems they seem to have the same out come, there isn't much actual restful, healthy sleep going on.
Crazy thing is because our sleep cycle is sleep wake sleep wake. We can sometimes be experiencing insomnia during night. I can be so tired and then all of a sudden when I'm finally ready to sleep, I can't sleep 😕
My narcolepsy usually means I’m awake at night too. Before I was diagnosed I actually thought I had insomnia because my brain had no sleep schedule so I would feel as awake at night as I should be during the day.
The strange this is, it really isn't like the "opposite" of insomnia; you still have issues sleeping sometimes because you slept too much during the day
I love that. I have multiple chronic illnesses and people always say try a no carb, no sugar, no dairy, no grains diet. What the heck am i supposed to eat? 😂
I was sent to multiple doctors and therapists who all accused me of ‘malingering.’ Later I was accused of drug-seeking. It took me years of my own research to figure out I had narcolepsy, and then several more years of fighting with doctors to be referred for testing and diagnosis. This is a really common experience for narcoleptics, particularly women. It’s so important to raise awareness.
what janise said is so true. the media portrays narcolepsy like it's a comedy. even with real people who had narcolepsy like jinx monsoon on rupaul's drag race, the show edited jinx's sleep episodes like it's some comedic punch line.
IMO i think everthing is fair game when it comes to jokes. The example that was very light-hearted, and was actually kinda funny to me. But if you should be mad at anyone, it should be the people taking jokes on a tv show at face value and not having common sense, or researching for themselves.
@@Chalk.... uhh i disagree. not everything is fair game when it comes to jokes, it should be the opposite. some topics are not humorous, for example, narcolepsy, which if you actually watched the video, is clearly very difficult to manage for people and not for you to make into a cheap punchline.
@@tlkinghdsluvr I think the more we tip toe around topics the harder it is to talk about them. If you want to educate people that's fine i don't care, but if someone wants to make a joke (especially if it's about the disability itself rather than a specfic person) you shouldn't care either, *especially* if you don't have the disability yourself. For example if you can make fun of white people you should be able to make fun of black, asian and every other race and ethnicity that exists. It's only fair. If I can use "cancer" as a word when describing something that isn't *ACTUALLY* cancer, then why can't i do the same when talking about OCD or ADHD for example? Either make fun of everyone or make fun of no one, and i don't know about you, but a world where the only jokes you can make are knock knock jokes and puns is a world where things are boring.
C'mon. I get that some jokes cross the line, but we HAVE TO be able to laugh. If everyone thought like this, not even the most innocent knock knock-jokes would be okay. Is that what we want? No. Being able to laugh at yourself is such a good and important quality. We can't take everything too seriously. Cracking a joke doesn't mean the joker doesn't care about the actual issue behind the joke. Jokes and humour can be a great tool to reach people, find common ground. Make it easier to talk about things. I do agree that we should try to be a bit sensitive/thoughtful/mindful of how certain jokes are taken, but not being able to joke about anything with actual substance to it would not only be terribly boring, it would lessen our actual freedom of opinion and speech. I personally have been through horrible trauma, absolutely terrible and undescribable several times. Sure, when some traumas were fresh, hearing let's say for instance a rape joke would absolutely crush me and I got terribly offended. That was my right. What wasn't my right tho, was trying to demand other people limit their speech. Now, some years later, certain rape jokes can make me laugh way harder than most jokes. That doesn't mean it's not to be taken seriously (which it absolutely should), it just meant it couldn't hurt me anymore like it used to. I just think that when joking about certain topics, you should be mindful of the listener considering how it's percieved. You should also have some actual knowledge so you understand why and/or what about the joke might be offensive. Just be mindful. Some rape jokes are made by total misogonysts without any empathy and/or understanding of the topic, and those jokes aren't even funny. Others are made by people with good enough understanding to get how much of a serious issue it is or by actual rape survivors like myself, and those jokes can be extremely funny if excecuted correctly. Remember that comedy is a form of art. It's hit or miss. Whether you like a joke or not doesn't really matter. What matters is their right to make a joke, and your right to complain about it. Free speech is extremely important and just like democracy, it's fragile. You *DO NOT* wanna live somewhere where a joke can get you in actual trouble. If certain jokes offend you, try to explore why. There might be something laying underneath which you can learn and grow from.
I have a very severe case of Narcolepsy with Cataplexy my case was studied by doctors across the United States because of its severity and how it was developed. Without high doses of medication I literally can’t leave the house. I’ve almost died multiple times just from laughing. Thank you Anthony for making this video to educate people
@@hey._.howudoing5112 no offense intended, but many people suffering from chronic disorders don’t appreciate people they don’t know recommending treatments to them, due to the fact that the poster mentioned that they’ve been to many doctors, I’m sure that they have been told about changing their diet or something along those lines. I know your intentions are good but maybe think about this in the future. It’s not a big deal but can be annoying for people telling their story feeling obligated to respond to every recommendation that they’ve already heard for years. That’s very nice tho! Have a good day everybody!
@@yiklongtay6029 It's very very strongly associated with each other yes (for example narcoleptic mice will cataplexy like crazy when they get chocolate because they're happy, or dogs when they get their favorite treats), but you can also have it from negative emotions. It tends to be a primary emotion, like anger or fear for example.
Definitely not one of the most horrible illnesses ever. Incredibly life altering and difficult to deal with, and im not discrediting their suffering, but there are much worse illnesses people can suffer from
@@jothecook I do believe it's something anyone can experience. But it could also be because of similar reasons like biases. Like black women dying more often from childbirth.
@@jothecook yeah unfortunately medical rac ism is a thing, i can't speak from experience but i recommend researching it because its a very real and very serious problem that i didn't even know about until recently
@nuitNo.6 Considering the numerous amount of studies done on it, yes being a POC does have things to do with it. A doctor is more likely to underestimate a POC’s pain level & not believe them. Personally, had this happen to my mother who’s doctor’s didn’t believe she was having extreme chest pain, she had a heart attack. You can be white and not feel like you’re being taken seriously by doctors. But it’s not because of your skin color, it’s the doctor. It’s more likely to happen to POC BECAUSE of their skin color. I really don’t want to hear about me having a victim complex when A) you don’t know me & B) you know nothing about what it’s like to be a person of color.
When Janise said “Finally I knew that it was not my fault!” I started crying. This whole video has me tearing up to hear of others like me. Unfortunately, even after being diagnosed with narcolepsy I was STILL told and am still told that it is my fault and that I’m just not trying hard enough. I honestly don’t know what to do anymore.
I'm so sorry :( People suck. Just know that there are people who know you're doing your best and are rooting for you, and I hope you can be surrounded by them one day. Sending you love
I have narcolepsy too. People don’t understand that this condition is out of our control. As frustrating as it is, remember that you are doing the best you can given your circumstances.
Honey no matter what people say, even if it's family, is never your fault and people either need to accept that's how your brain works and is a part of who you are, nothing to be ashamed of! Or they can get the fuck out of your life. Be safe.
I hate this for you because I understand completely. I was always wondering why I didn't have the same amount of energy as others my age. I blamed my weight and everything. It's hard for people to understand. My ex cheated on me because of it. My family still doesn't understand.
I’m not even aloud to talk about it in my family specially my sister who has a lot of med problems and is an actual hypochondriac. I was diagnosed about 6 months ago but I’ve had it undiagnosed for a very long time. People have a very hard time understanding it. It’s ruined a couple of my relationship and even a job I use to have. People think it’s not something that doesn’t actually exist and expect you to function like a normal healthy human and get mad when you obviously can’t
every single person with a chronic illness or invisible disability has that SAME STORY of condescending doctors who don't believe our symptoms. especially those of us who are women.... it's unfortunately so common to be written off as "stressed" or "hysterical" and not taken seriously by medical professionals
Tbh this is a rare disease- doctors aren’t magic. There will likely be misdiagnosis when looking after rare diseases because doctors aren’t actually taught about them and I’m not really sure how to fix this. Getting people to a specialist is important but when you don’t know what sort of specialist to send them too it gets complicated And with regards to things like conversion disorder or some functional disorder- the issue Dr’s have is it’s such a fine line and sometimes encouraging that it’s not functional can make functional disorders worse. I literally met a woman who was paralysed from mid chest down- she had been treated like it was a real injury for 6 months having tests and such. When a Dr worked out it was functional (aka no physical reason she should be paralysed) she was walking within a month. She could have spent her entire life paralysed if doctors had carried on listening to her. It works both ways
Wow 😳 I really relate to this 🙁 It took me 18 years to get a real answer/diagnosis from a doctor. I finally had to keep pushing them to do more tests rather than just concluding that nothing was wrong or that the issue was stress related after performing 2-3 basic tests.
Bring on 2021 as a psychology student and also being miss diagnosed with conversion for years, when my later I was diagnosed with narcolepsy, Postural Orthostatic Tachycardia Syndrome, and Chronic migraines I have a love hate relationship with it. I know it’s a real disorder and I truly do believe some people have it like the women in your example. I mean I went to a therapist who had social skills classes for her OCD patients twice a year and the other girl in my class was very open about her diagnosis. One class we saw version of the disorder where she all of a sudden went in a British accent. She didn’t think she was, it was like her mind was telling her brain that she had intermittent foreign accent syndrome. but I also know many with similar chronic illness to mine and diagnosed with conversion before their real diagnosis. With narcolepsy, no there is not a cure to “fix” it none of the disorder I have can be “fix”, but can be managed with medication. The exception is Postural Orthostatic Tachycardia Syndrome, you can only try to treat the symptoms but because of the unpredictabity, and hour by hour sometimes minute by minute nature with different symptoms a lot of us are considered disabled, and some of us (like me) have gone the service dog route to try and help. I use many things inside the medical tool box like diet, certain exercises (which is hard because I am exercises a heat intolerant due to the dysautonomia the umbrella over Postural Orthostatic Tachycardia Syndrome ) along with medication, and my new tool a percussive therapy massage gun to help with blood flow.
Can you do something with endometriosis? So many women have it and there are also so many women misdiagnosed or told they just can’t deal with “that time of the month”. I really would love if you could help bring awareness to this disorder
@@AnthonyPadilla Would you consider opening that conversation to include trans men? There's a guy called Cori Smith that has an amazing article discussing the way that endometriosis itself is overlooked- even when anyone can have it
@JordanTheYesnt it is tied into narcolepsy and is a symptom some experience where they lose all muscle strength after experiencing certain intense emotions. For example my moms is usually triggered from laughing and if nobody runs to hold her up then she would collapse to the ground. However my sister also has it and she usually had a bit more control at first and can get herself to a sitting position so she doesn't collapse to the ground.
I have narcolepsy with cataplexy too, and you are so sweet, that’s exactly what you should do😊 And if sometimes you are not able to support her weight completely and she still falls on the ground, stay close and help her to get in a safe position so that she doesn’t hit her head on anything🙂
Hey Anthony, if you ever make a video about people with Endometriosis, I'd love to speak to you! Im 31, disabled from Endometriosis, ive done 2 different chemotherapy treatments, and 6 surgeries. Endometriosis effects approx 10-20% of adult women in America, and over 176 million women worldwide. These numbers are probably much higher than that though, because it takes on average 10 years, and 7 different doctors, in order to get a diagnosis, and the only way of diagnosis is via surgery. I am literally an encyclopedia about Endometriosis, and would be so happy to talk about the effect it has on those who have it, and their families and friends. Also, id just like to say, that cramps are totally normal, but *pain* is not normal, its your bodies way of telling you something is wrong. So if you experience pain associated with your cycle, *PLEASE TALK TO YOUR DOCTOR*
@@amyjrobinson thanks! I sent an email for it to be a topic, so hopefully he sees it. I really think a cis male speaking about it would *really* help since it doesn't effect them, so it could bring the topic to new audiences, and hopefully help people know that what they're going through has a name, and more importantly a *HUGE* support system attached to it.
" i spent a day with people with epilepsy" like this so he can see it pls Ive been diagnosed recently and been doing my research but id love to hear from people what is their experience and learn from it♥️
Glad you got diagnosed. It took 7 years before I got a diagnosis, after we took a year or 2 tofigured out the meds I need I got resume a normal life. Hope things go smoothly for you!
@@lisakay2810 it took 3 years of focal epilepsy , i got diagnosed when i had my first seizure , although it took years for me and im on my 2nd/3rd month of medication , im glad that i had the opportunity to be diagnosed and get the treatment and care needed for my condition , im still processing it but ill return to my normal life soon hopefully.
I would love to do this ive had epilepsy for about 7 years now and so many people dont understand it. The one thing that got me through it was having others to connect to and talk about my situation
He should do a “the world of ptsd” cause as a person with post traumatic stress disorder I’d find it interesting to hear from others with the same struggles an how they deal with it on a day to day basis and how they build themselves back up with positivity while ptsd being such a negative gloomy/foggy feeling ✨could y’all get some likes on this so he might see it✨
An also I just wanted to say if you happen to see it I absolutely love ya work an that you give these people a way to verbalize their stories an struggles and how they help others understand or maybe even deal with the same issues that happily shed some awareness an light!! I’m just happy that you’re basically saying not everything is black n white an there are gray areas that not everyone sees an I think it’s amazing! Keep it up💕🖤✨
my piano teacher had narcilepsy and slept through a piano performance. i was a little kid so i thought she was being disrespectful but now i’m aware of the language for the dysfunction. Thank you anthony as always.
My sister has narcolepsy with cataplexy. Janise's story reminded me of the time my sister was cooking breakfast in middle school and she held on to the spatula for so long that the handle melted into her palm. We were goofing off, and I now know that we had triggered a sleep attack. She was standing, and seemed awake but she was in REM and the burn could have been a lot worse if I did not notice that the plastic was melting and I literally had to push her away from the stove. Our kitchen is a no joke zone, especially when my little brother is around, that boy is a safety hazard. 😂 When my sister was diagnosed, every friend and family immediately accepted it, because all of my sister's mishaps and "quirks" growing up were actually symptoms. It all made perfect sense. It was a relief to everyone that she was now getting treatments that help her.
A para-professional at my school was talking with some other para-professionals and she said "Does anybody else wish they had narcolepsy? Like, you get to fall asleep easily!". Tbh I wanted to slap her, you should never want a disorder.
Oh hunny I’d have lost my shit😂 I’ve never been able to relate to people enjoying sleep because it’s always been something I hated about myself and had to avoid.
I have a severe case of narcolepsy with cataplexy, I wouldn't wish it on my worst enemy. I've almost died because of it a few times, sometimes my whole body will become paralyzed and I'll be laying there feeling like I'm suffocating because I can't control my own breathing, waking up for me is painful and sometimes I can't make it to my medication that's an arm reach away. If you think you or someone you know might have narcolepsy, be sure to get a referral to a sleep doctor, there's more to life than suffering.❤️ (Ama I don't bite)
Although I have mild narcolepsy, I relate to this a lot. ❤️ I’ve had sleep attacks in public, then having to walk home in that state... the amount of times I cross the road without checking traffic 🤭😢
@@trevbuchet6777 If you are in the US narcolepsy is a protected disability, which means you can't get fired for it and your company has to make modifications to help you manage it. Tell your HR person and your boss. Get documentation if needed--a note from your doctor, NOT your diagnostic paperwork. And ask your boss to do some research or provide them a link to a video like this one so they can understand. I did it and it was weird, but it makes me feel more secure.
@@trevbuchet6777 depending where you live there should be rules against getting fired/looked down upon in the workplace, you shouldn't be able to be fired for things outside your control. I would explain that not taking scheduled prescribed naps could be dangerous due to narcolepsy, neglecting your needs could put yourself and others in harm's way and as the employer they need to acknowledge that. But before I was diagnosed my managers let me sleep on the clock because I did my work plus others despite being a part-time worker. I hope everything works out for you (｡•̀ᴗ-)✧. Best of luck.
this video actually helped me realize my excessive daytime sleepiness was a problem, and now 2 years later i'm 1 year diagnosed and being treated for narcolepsy. thanks for this
Anthony is just one of the best interviewers I’ve ever seen. He is so compassionate, respectful, and willing to cover topics no one else will. We Stan a respectful king...
Hi Anthony! I’m epileptic and would absolutely love to represent people suffering with epilepsy. There are many misconceptions and tons of misinformation about seizures and epilepsy in general and I think it would be awesome if you could use your platform to bring attention to those! Thank you for covering topics and making your audience aware by speaking to people who have personal experience. I appreciate this series so much!
@@laurenhuston206 im an epileptic as well and tbh ive been waiting forever for him to do a video on epilepsy like it is just something that truly needs the awareness he can give
my husband wants me diagnosed. he swears i have it. i will sleep last night 8-3:30 and wake up exhausted. i will sometimes be in the passenger seat of the car and talking and 5 min later snoring after the convo ended. my husband said with how sudden i fall asleep and i dont realize it completely everytime, hes worried about me driving. i am scared to drive for other reasons so i dont
i have narcolepsy ! was diagnosed two years ago :) it was a struggle , especially with school, but after being on medication it’s getting a little easier. you learn to live life a little differently i guess you know , but in my case i wouldn’t say it’s too terrible 🖤
Janise is super relatable. The feeling of knowing something is going on with you and just being fobbed of, misdiagnosed and told you're not trying hard enough. I had a therapist who really did help me with a lot of things, but her "motivation comes from doing! You gotta make yourself do it, the motivation isn't going to magically come to you!" talk was really pretty damaging for my then-undiagnosed ADHD self. Finding out that I wasn't just lazy and flaky was freaking revolutionary
Jinkx Monsoon introduced themselves as having narcolepsy when they entered Ru Paul's drag Race. And yet when they fell asleep there was still a story line about how everyone thought they were lazy. Which I thought was rather stupid.
I remember watching this right after my diagnosis. It made me feel so horrible about myself, but Jinkx's confidence & pride in themselves & how they didn't let their diagnosis stop them from achieving their goals was empowering to me.
My coworker has narcolepsy and one day she missed one of her medications and when someone made her laugh she was down, just the burst of any feeling (good or bad) made her fall. I now know that she can fully hear me but can't move, sometimes she can move her thumb and that lets us know she's okay. Sadly she can't get her license and it's hard to work for her
Yeah, that’s usually the most stressful part. I’ll usually collapse outside of the cinema and people will gather round and ask if I’m okay but I just can’t respond. It’s like my brain is there but my body isn’t.
that happens to me too!!! it’s really funny and it makes me laugh harder i’ll be on the ground for like 5 minutes. driving is a lil hard without my meds but i can normally do it i rarely miss my meds tho.
Ugh, the Psychiatrist ruining that one girl's diagnosis makes me so mad. As a therapist in training I'm so sad that professionals like that exist and jeopardize people's health. When physical properties are worrisome it's our JOB to make sure nothing physical is wrong with people, BEFORE diagnosing them with a thousand mental disorder. Smh
@@lilskipper4683 Its not false info, my guy. ANY disorder can be misdiagnosed. I also literally have multiple mental health disorders 🤷♀️. Anxiety and depression are extremely common. That's just a fact. I'd ask you to do YOUR fucking research but we both know that won't happen. I can sleep well knowing I've done mine and what I say is literally backed up by professionals in the field.
@@AnxietyRat If it gets misdiagnosed then it's hard to be certain that the person has depression. Often times people have been diagnosed with it and don't even have it but just have similarities to those with it. So I really do think you should do ur research before you come at me again. And is there really a necessity for such language? Honestly it doesn't help anyone's case when they start effing and jeffing at someone.
I was devastated when I wasn’t chosen to be one of the people interviewed because I was scared Narcolepsy wouldn’t be correctly represented. Watching the video, I couldn’t agree more with everything said! I would have had nothing to add because they nailed it XD
I know what you mean, I was crossing my fingers as I started the video XD. I've seen people paint it in a weird light and people who have pretended to have it. Glad to see it talked about in a truthful way.
@@verminscum I mean, yeah, you're right. XD I guess, I meant I was relieved that they were not only self aware about how it affects their life, but they were able to explain the science and teach about Narcolepsy itself. I see a lot of Narcoleptics in my Facebook group that I wouldn't want representing the disorder as a whole XD
I love seeing these ones on chronic illnesses. I would love to see one on women’s long term conditions (PCOS/Endometriosis/Adhesions) and the stigmas surrounding them and ESPECIALLY doctor’s diagnosis on women’s issues and believing in people’s experiences
@@rylieruiz5447 i definitely want to see one on fibromyalgia cause i think i have it and during research I've seen that there is so much misinformation/lack of information (and its also really hard to diagnose)
I wish these were shown in health class. I would rather hear from a person with specific conditions talk about their conditions instead of someone who has no experience with these conditions talking about them. For example I don’t want to learn about depression from someone who doesn’t experience depression.
I have a psychology class in this year of school, in the first semester we had lessons about anxiety, depression and OCD. As a person with most symptoms for all those 3 illnesses, it was painful for me to hear the teacher explain to me what my pain feels like... aka something that I KNOW too well what it feels like....... because I do infact have that painful experience......... Judging by the way the teacher explained those illnesses to us in such a simple manner, I could tell that she lacked some qualifications to make us truly understand what those illnesses were like >_>
@@danab0440 I understand and I agree, it would be more reliable, relatable... and closer to the reality. Mental illnesses already are hugely different from person to person and many times it's hard to find a common path or synthoms between people who share the illness, imagine to have to do it with someone who doesn't even know it.. In general, I think that the best teacher is the one who acknowledges its limits (I use its for both genders) and knows that no one in the world can be prepared on everything...sometimes you should simply and light-heartedly give the space to someone who knows the matter better than you thanks to its experience. It's a form of correctness and respect that many teachers confuse with a loss of authority, while it actually is one of the most precious virtue a teacher could have, at least for me.
Yeah these would have been so much more helpful than some washed up UConn sports science major who won't say the words "penis" or "vagina" during sex ed
As a narcoleptic, I am so excited for this video! I submitted to be a part of it, but ironically, I slept through the deadline so my submission was too late to be considered. Whoops.
I have some kind of undiagnosed sleep disorder but a lot of my symptoms are similar and hearing their experiences made me feel so validated, my sleep issues have always been overlooked and I’ve always been told I’m just not trying hard enough so to hear that I’m not alone fills me w/ such relief. Even if I don’t have narcolepsy, hearing people talk about sleep experiences is really validating
Same here ! I don’t know whether I have sleep apnea or something else. The symptoms I’m hearing here are so relatable. I wonder if the two things have very similar symptoms. I’ll have to look that up. I’ve had sleep issues ever since I can remember.
you're not alone! 🤍 i have narcolepsy type 1, but i am in the r/narcolepsy discord server & there are so many people with different types of hypersomnia sleep disorders there. would love to have you ^_^
My girlfriend has narcolepsy and she often hallucinates when we go to bed or wake up. we talked about her condition and she told me not to worry but this video also clears some things up for me. thank you ❤
Okay no offense to your comment AT ALL but how is this comment that says "stan" okay but the comment like just before this says "stan" and they get bombarded with hate comments for using the word?? 🤔
This just reminds me how terribly poor Jinkx Monsoon was treated. The girl was basically bullied on TV because of having narcolepsy and nobody talked about how deep this stuff actually gets.
@@sapphirequartz567 Oof, well, I had a real “pull myself up by the bootstraps” mentality while I was in school. I napped for hours each day when I got home. I was just barely managing my sleep around soccer, violin, and school. (but honestly, I slept through countless events and appointments anyway) Besides the napping, I just learned to cope. I was medically withdrawn from school almost two years ago, unrelated to my narcolepsy, but that was when my symptoms started progressing and I was napping four or so times a day AS WELL AS sleeping for 8.5 hours each night. I got a sleep and nap study conducted and was diagnosed then. These days, I don't have a solid routine, but I do my best to work around my sleep instead of the other way around all the time. I usually take one small nap a day and sleep from 8-9 pm to 6-7 am.
As someone diagnosticated with Narcolepsy and ADHD I'm looking forward for this ! It's sooooo mentally draining... Having an hyper active brain but also being super sleepy/slow body/reflexes... My buds told me sometimes they can even have a talk with me sleeping... I'm litteraly replying and talking to them... sometimes my answers makes no hell sense at all.
@@ZeoHusky Lol, we're out there!! I have chronic fatigue and ADHD also. My wakefulness medication is actually an ADHD medication but it does nothing for my ADHD ironically lol 😭🙃 Sending you good vibes ~*~
@@ZeoHusky that must suck so much. I’ve heard there’s a correlation between adhd and sleep disorders, but I assumed wrongly that it was mostly insomnia. I have adhd and can barely function when I haven’t slept well for a few days, honestly I’m impressed with your willpower and whatever else you’ve used to get through that. 🙌🙌👌
As someone with narcolepsy I almost cried when I saw you made this video. It sucks so much that this disorder is so misunderstood and makes living very hard. Being constantly told by people who don’t know what narcolepsy is that I should be able to control it and that I’m being lazy has taken a huge toll on my sense of self worth. Seeing so many people in the comments being so kind and supportive is really really uplifting and seeing these people talk about it makes me feel so much less alone. One thing I didn’t notice any of them actually use the term for was sleep paralysis. This is by far the scariest symptom I’ve had and it’d be great to get a cure for it. For anyone who’s never heard of or experienced sleep paralysis, it’s basically when your brain wakes up before telling your body to wake up. So what ends up happening is you hallucinate (oftentimes they are terrifying hallucinations for me) and you can’t move or speak. I get these sleep paralysis episodes in twos and usually end up too scared to let myself purposely sleep for a day or two. Definitely a symptom that needs to be talked about and addressed more by doctors.
I also have narcolepsy and you described perfectly the scary combinaison of sleep paralysis and hallucinations / terrifying nightmares! Fortunately, one of the meds I take has completely erased those symptoms (but I’m not sure that TH-cam would allow me to say the medication’s name..)
I was diagnosed with idiopathic hypersomnia earlier this year after my mom (who has narcolepsy type 1) motivated me to get a sleep study done. Now that I seem to be on a medication that works life is more manageable. I appreciate the education on this condition instead of continuing the stereotypes.
For years my father refused to see a doctor about his symptoms. Then when he was about 35, he was driving my mom, my brother (3 at the time), and I (6) home and suddenly fell asleep at the wheel. My mom was able to reach the hand break and the truck stopped sideways in the middle of the road. Luckily the roads near my house are almost always empty and no cars were around when it happened. But, if we had gone off the road we would've crashed into full grown pine trees. He talked to the doctor's soon after 🙃
@@kip4833 Much better! He's been on medication ever since! Of course he purposefully takes the occasional nap, but not even close to how often I do lol
ah i really hate how people just can't get something drilled into their head until they've actually encountered the risks for themselves. it's like someone who will never wear a seatbelt until they get severely injured in a car accident because of it... these things that could've been prevented if they had listened earlier.
When Janise is talking abiut advocating for yourself and the struggles of misdiagnosis, I really felt that. I almost teared up at her story. I went through a very similar process with systemic lupus and I hate that we all have to cycle through a series of doctors not only misdiagnosis but usually saying it's all in your head or hypochondriac. You have to get so sick before they finally test and then it's like oh 👁👄👁 why didn't you get a blood test before?
right! my mom has lupis and she would always tell me how she went through mulitple diagnoses and being brushed aside before they reached the conclusion. she taught me to always fight for myself and my health issues 💪
Yes. I have a genetic disorder and I am still undiagnosed. I didn't take my mom, she is bipolar and does not live locally, but that whole half of the family has it, my mom has it, my doctor didn't give me forms, and I have enough symptoms for diagnosis though a mild case, though all the records are very old because people in my family that have it tend to die and everybody else is afraid of the doctor. The doctor said basically I didn't look like I had it 🙄 (I keep myself healthy so I don't spontaneously die), refused to look when I did the hand sign and I was shaking too hard to do it at first, which is worth 2 points and he gave me 6 of 7. Sent off a test he knew would fail to find the family specific mutation, which is not known for mine, promised to send me to a cardiologist either way but refused when this nonconclusive test came back negative. It was 500 dollars. Honestly my faith in being listened to was seriously harmed by that doctor. I walked out of the hospital earlier than I was told the appointment would last and cried (I knew the test would be negative). I have since found a family health history form to fill out but I am so anxious when I look at it. When I get up the courage and money/ history I'll go upstate to where they have a center. Okay I'll work on it this week. It's marfan's syndrome. Rarely see it, as it is rare, but the doctors on ER misdiagnosed it and the dude died. Also my cousin was 2 years older than me when he died. I am 25. The doctor was talking like he saw it daily for decades, which is impossible given its prevalence, and people seeking care must have pretty severe cases otherwise they wouldn't know. I wish my mom had brought me when I was a kid, but she is bipolar and unmedicated.
You’re definitely not alone! It can get really tough and you’ll feel insecure about yourself and worried but in the long run you’ll learn how to cope and feel proud of yourself. Because at the end of the day, you’ve just fought a chronic illness -you are the strongest person in every room! The most important thing to remember is there’s nothing ‘wrong’ with you. You’re no less perfect than you were before your symptoms and this illness will only make you a stronger person Xx
I don't know anyone else in real life that has narcolepsy so I understand the loneliness. I've joined a couple online communities for narcolepsy. I'm able to ask questions and hear other people's stories
same! I have been diagnosed for 1 year but have been living with narcolepsy for over 12 years. the struggle is real and continuous but it's so nice to see I'm not alone! ^^
My mom has narcolepsy and it is very difficult for her to navigate through life. My heart goes out to her and everyone else who has been diagnosed with this sleep disorder. ❤️
As someone with narcolepsy I was sort of scared to watch this since its so misunderstood and misrepresented, but as always Anthony is an amazing interviewer and did well to put a pretty wide lens on it :') I had to drop out of highschool because of narcolepsy aaaand its interaction with/amplification of mental disorders. Luckily for me I'm good at tests and got my GED easily, but some aren't so lucky! It's pretty tough. I'm also thankful that once I started doing what I like to do, and things that keep me active and engaged, my condition improved immensely. Now I work in environmental conservation, soon to be a wildland firefighter (yes, chainsaws and all) and/or search and rescue worker. No, I typically don't tell my employers I have narcolepsy because it's not legally a disability and its very hard to explain to someone that its not just randomly instantaneously falling asleep. If I feel an oncoming sleep attack or if I'm tired from a restless night, I swap out just like everyone else should. ... If I weren't on medication that mutes my cataplexy though, that might be a problem. Lol. (I joke, again I'm lucky that so long as I don't have too many stressors, my narcolepsy and cataplexy are both manageable)
As someone with Narcolepsy and was diagnosed wrong 20+ times, I was excited for this one. Thank you Anthony for showing the struggles of the day to day and diagnosis problems.
I can't thank anthony enough for bringing this disease to the forefront. I've been struggling for 10 years and it's very isolating. It makes me feel not so alone if people understand
I’m so glad someone did this. I’ve been living with narcolepsy and cataplexy for 7 years now. I am i only 25 and this weighs on my life heavy. You just have to push threw it daily and it can be depressing as hell. It’s like you can’t have a regular job, driving is scary, it’s hard to live by yourself and the people in your life have to be very understanding. Being there is no cure things often feel hopeless. The drugs have bad side effects and are not always available. We have to put more effort into this, please support the research so we can find a cure.
You should do a day with Immigrants, people who've crossed the border by either, waking, being smuggled in or by sea. And how their whole experience was.
@@caprisunlover4732 It can be like the person mentioned above. Cover their face and they can just tell their story without giving their real names or personal information.
as someone with epilepsy i can definitely relate to the point about media misrepresentation. i was diagnosed at age 7 but had no idea until i was 17 because flashing lights didn't bother me and i was never on the ground shaking with foam coming out of my mouth (although that does happen to some). would love it if you made an episode about epilepsy
I was diagnosed when I was in middle school, but only after I was taken to the ER after my first grand mal. Learning about epilepsy, I've had it for at least a year beforhand, just with a different type of seizures 🙃 Those months before I was diagnosed gave me extreme panic attacks and depression because I didn't know what was happening to my body and still had to carry on with daily life.
I have severe narcolepsy, which I’ve struggled with since school years. I was always falling asleep during class, while studying, etc. Not only was I not diagnosed, my parents were always mad about it. I fell asleep all through college and graduate school classes and studying times. I never finished any of the readings. I didn’t get diagnosed until I was 44! Once I was driving, got sleepy and I nodded off and when I opened my eyes, thinking I had just closed my eyes for a few seconds, it was 45 minutes later past my exit, but I was still driving intact on the road. It completely freaked me out. I turned around and drove home wide awake and shook up. When I was diagnosed years later, the sleep doctor was unfazed, saying « Yes, that’s called automatic behavior. Your body was asleep while your brain was awake ». Living with narcolepsy has certainly made life interesting, especially my vivid « hypnagogic states » or when dream and wake states blur. I’ve tried many medications, some torturous like Xyrem requiring me to set an alarm to wake up at 3am to take a second dose. In the end I just stuck with a stimulant that made my brain feel less dazed and sleepy. I would take a cure in a heartbeat if it were available! I had a couple of good days when I first tried Xyrem and remember waking up feeling so well rested and feeling so positive (the fatigue puts you in a low grade depression I think), I thought, is this how normal people feel? Is this how it feels to get a good night’s rest? I had never felt that my entire life! Thank you for making this video, Anthony, and for your videos in general. It really made me reconnect with this part of my health again, reminding me of my struggles, and I appreciate your making more people aware of narcolepsy.
Oh man Xyrem. I remember feeling so well rested but after a month ish the depression hit me like a ton of bricks, and that was on top of my usual depressive disorder.
I kinda wanna see anthony spend a day with suicide survivors Edit: I just realised this comment can come off as insensitive and I'll try to clearify what I mean, I'm honestly just very curious about what someone could be thinking or their whole experience with suicidal thoughts. It'll also bring more insight to other people who don't understand what being suicidal and attempting is like. In the end, I just kinda wanna know.
@Domi B I think there can be many different causes to suicide for example severe depression- many believe these people suffer from mental illness and their suicide attempts may not be a conscious decision so if they survived, they can be considered survivors.
TW: death and suicide attempt My fiance, bless his soul, has described his suicide attempt to me before. Just the way he described it.. He had died with a BAC (blood alcohol concentration) level of near .5%. Which is lethal to pretty much anyone. He weighs about 130 lbs.. That much alcohol killed him. He had died and was resuscitated on the way to the hospital. It was a suicide attempt and he died for 6 minutes.... You know what his logic was for doing it? He wanted to know if there was an afterlife. By the grace of God, the way he describes it. There is one. People reportedly talk about seeing "white light" and dead family members when they die.. Some people see nothing at all. He got the ladder. He saw his dead family. Members of his family he's never met.. He can't even talk about the whole situation without bursting into tears. He can recall floating up from his body (like a soul leaving its host). My fiance is a very logical and straight forward kind of person, but he definitely believes in God since that happened. Definitely wasn't very religious before hand either. It's a very touchy subject that a lot of people don't like talking about and I don't blame them. It's hard to even fathom what they went through during those experiences.
Watching this video I realized all of my symptoms and experiences could be deeply rooted with narcolepsy. I used to just joke “hahaha yeah I probably have narcolepsy” as a passing joke talking about stories how I can fall asleep anywhere, doing anything. I haven’t been properly diagnosed yet but watching this video made me realize I probably should go see someone about this. Thank you ❤️
As someone with narcolepsy, this is the most accurate, informative video i've ever watched. I was diagnosed at 25 and once my dr. explained everything to me, I was like: oh, this makes a lot of sense. I'm not just clumsy, and I don't just get easily distracted, my brain is actually trying to shut me off. I remember being at the jewelry lab (I'm an industrial designer), and all of the sudden the place started smelling like burned hair, so that made me realize something wasn't ok. I had fallen asleep while welding a jewelry piece and I had no idea, so I burned my hair. That wasn't even the moment in which I realized I had to check if everything was okay. Pretty wild things happened later and that made me go see a neurologist. Thank you so much for bringing awareness about this condition and for being so incredibly polite and professional.
Exactly! Sleep deprivation causes microsleep, and most people don't even realize they are sleep deprived! Pulling all-nighters, having too much caffeine and other sleep disorders (like sleep apnea) can cause sleep deprivation. Please see a doctor *if you can* !
Sadly, Narcolepsy can cost thousands of dollars to diagnose. While self diagnosis is usually bad, sometimes you have to to a certain extent because you can't afford to get diagnosed, like with autism.
Cataplexy is almost exclusive to narcolepsy (though on rare occasions it can be a standalone condition) so having it is a major reason to ask for a sleep study. Also, sleep doctors most often do not deal with narcolepsy and are very hesitant to diagnose and treat it. My first and second sleep doctors didn't understand it at all, so if you get diagnosed and still feel misunderstood, go find a new one.
I have narcolepsy. Throughout my life I’ve always had peers, educators, and employers tell me that I’m faking it. It’s tough out here for us sleepy folk. I felt really seen through this video
janise's speech at the end about fighting for yourself and getting the help/being treated the way you deserve was so powerful it almost brought me to tears
As someone with Narcolepsy with Cataplexy, this video is so greatly appreciated Anthony. Thank you for doing what you do, and bringing awareness to such a rare sleep disorder. 🥰
I remember watching this video around the time it came out, not relating to anyone in the video. I came back today, and I have been diagnosed with narcolepsy for less than a year now. The symptoms ramped up quickly in the past 3 years, I was confused, I didn’t think it was narcolepsy because of the way it gets portrayed in popular media. Even now, those around me don’t fully understand what I am going through. They try to give advice, not know what else to say, but when you’ve heard the same spiel about exercising, eating good, etc and knowing that no amount of doing that will make your brain regulate your sleep wake cycle the way it is supposed to is frustrating. I’m on the path to getting a medicine that will help me stay awake throughout the day, but my hope is that one day the medicine that targets the root of the problem is widely available and affordable for everyone that needs it.
My friend is being tested for narcolepsy soon and its great being able to hear what it can be like to help me better understand what shes been experiencing. Thanks for this.
Please let your friend know that she is not alone, and that there are resources and organizations out there to connect with others living with narcolepsy! Project Sleep, Wake Up Narcolepsy, and Narcolepsy Network are a few of the leading organizations in the US.
I have narcolepsy and its one of the most challenging things I've ever been through. People have said that they wish they had it but no, no you don't. It's awful. I've had family members tell me its all in my head that every young adult has this issue but no thats false, narcolepsy sucks and is more then just being sleepy. Edit: just finished the video. I was also misdiagnosed with conversion disorder. AND I have an autoimmune disease lol. This is very informative 🤔 definitely a lot of pieces falling into place.
Can we just take a moment to say how cute Janise is! Her struggle to get properly diagnosed was so difficult and eye opening. As she said- We deserve to be heard and get proper treatment, respect and love. I learnt a lot as per usual!
Having an invisible disorder is hard, especially when it’s sleeping disorder. I’ve had so many people brush me off as lazy or people trying to cure me. All that does is make me even more disheartened. People try too hard to help. Sometimes all we need is for someone to just stay for once. Even just to listen. Honestly seeing all these stories and watching this video makes me feel less alone in this struggle. Thank you everyone for sharing and being open about it.❤ Also, thank you Anthony! ❤️
Anthony can you do an interview with *Coma Patients Recovery* Would like to know their experiences thereafter and perception of Time. One thing that interests me the most is: If a young child goes into a coma that lasts into adulthood. When they awake, were they still childlike? Were they able to mature relatively quickly?
come back later this week for *I spent a day with the first COVID VACCINE RECIPIENTS*.
-new episode of this series every week so consider 🔴subscribing.
-ps: shoutout to everyone who has turned on notifications 🔔 and directly support me in continuing this series.
Can you do a I spent a day with people who have ADHD
Ok will do
My grandad has the vaccine
Hello
Transgender one :)
watching this video I realized how LITTLE i knew about narcolepsy... and sleep in general.
This is why we all appreciate what Anthony does. ❤️ He could’ve just interviewed them privately and just journaled it. But he decided to share it with the world to help us better understand these people.
If you’re interested I highly recommend a book „why we sleep” which is by Matthew Walker who’s a sleep researcher and a neuroscientist:)
That’s one of the best things about this series/channel, it educates me and so many other people!
Me who mixed it up with epilepsy
@@MultiVentriloquist This book has made me realize how little we regard sleep and how much it actually does for us!
Can you imagine being a kid and everyone just calling you lazy when you actually have a medical condition? All I can think about. Being dismissive in general - adult or child, it sucks.
It really does suck. I don't have narcolepsy but I've had fibromyalgia since I was a child (its rare in children) and was called lazy and unmotivated by my teachers. People need to realize that you don't always know what someone is going through.
Yep. Literally my school and parents thought i was lazy and unmotivated. A few years later found out i had narcolepsy. I knew it wasnt all in my head but after hearing so many ppl say it was i started to doubt myseld
It does suck. No one understands I can't control falling asleep in the middle of my tasks. Some doctors dont even get it and a lot of strangers just think I'm on drugs or something
Yeah.. For me it wasn't a physical condition, but childhood depression made me tired all the time and my body felt really heavy a lot and I didn't eat enough. People always called me lazy and it hurt. Can't imagine having narcolepsy.. I feel awful sleep deprived, these people are so strong.
Also sounds like: ADHD
I love that in every intro Anthony is like “are these people chill or are they PARALYZED UNDER THE WEIGHT OF THE WORLD’S DEATHLY STARE?”
IM DEAD AT THIS COMMENT
Me, have adhd, was made fun of it since 1st grade after saying that im a special child thinking i have higher abilities than others without knowing the quote was used as an insult to mentally ill people
@Eline the "worlds deathly stare" which i believe he was referring to judgemental people if youre not a normal person alike them
LMAOOOOOOOOOOOO
@@arlynnecumberbatch1056 im sorry u were made fun of for having adhd :(
I love how he respectfully changed the titles from "the wonderous world of _____" to just the "world of ____" because we all know most of these disorders are not wonderful.
He changed the music when introducing the people too lol. I miss it for the less serious videos though 🤣
Yess i love how he always adjust it such a great host
Lauren did a great job explaining how it looks like people with narcolepsy, like me, are in a deep and restful sleep, but their brains are highly active instead of recharging.
You mean Yanny .
@Domi B wait is this a real thing because sometimes when I dream really vividly especially if it is like an emotionally exhausting dream I will wake up more tired even if I slept like 10 hours
@@alexanderm9527 LMAO
Yes!! That part was a perfect description and exactly what I explain to people who ask about how narcolepsy affects me
This helped me a lot too as a wife of someone with narcolepsy. Whenever my husband would talk about that I would think, “wouldn’t that mean that you are getting a super deep sleep all night?🤔” but the way Lauren explained it makes so much sense now.
When that girl said she was labeled as "faking it" in front of her parents and her aunt and it seriously affected her life for the next 5 years, I immediately knew what she felt. That same exact thing happened to me and I broke down sobbing in the Doctor's office waiting room as a 27 year old man.
I’m so sorry you had to go through that. I hope you are doing okay.
I'm so sorry you had to experience that
Totally. Same thing has been going on with me for *YEARS,* possibly over a decade by now.
I'm only getting way worse (by the second, it feels like) and all doctors have to say is the same thing. "You just make yourself belive you're in pain. It's all psychological" is what I here all the time. Even if it was "just" psychological it should certainly be taken seriously.
I struggle with mental health and physical health in many ways. I'm offered no help.
I'm a former addict (DUE TO MY DAMN PAIN), so all doctors think without checking out ANYTHING, barely even questioning me about it is that I'm looking for drugs. Even though I'm sober now and have all the possibilities in the world to get ahold of drugs. So that's not the issue. I want to get better and good health. I'm only 23 y/o and my body functions worse than most. HORRIBLE pain each day, and I'm barely mobile. Bearing the thought of having to live in this body for the rest of my long life simply isn't bearable and it absolutely crushes me. I can't imagine how bad it's going to get. I'm no wimp at all, I have a very high pain tolerance, but I still feel like I'm constantly on the verge of tears due to the pain just about everywhere.
I'm getting extremely neglected. I push to get help constantly, no one cares to actually listen.
@@idalarsen2540 Let me start off by saying I'm sorry and I've been exactly where you are right now. It took me a long time to find a doctor that would actually take my pain management needs seriously. Let me also say, just because you have actual scars on your body and reports that you've had multiple surgeries, it doesn't make you more believable. I had the same exact experience. I was labeled as a drug chaser, even though I was in the army, got hurt and had three surgeries, with scars that run half the length of my forearm on both arms, and my knee.
Let me also say, being an "addict" is far different from being dependent on painkillers. I considered myself an addict years ago when I was going through what you are going through, and it wasn't until I found a GOOD doctor that they informed me that addicts and people dependent on drugs are two different things, but someone dependent can also be an addict. I am not saying you are either one, I just want you to think about the labels carefully and not just believe what docs tell you you are.
There is help out there. It takes a lot of work, and doing that work while you're suffering can seem like climbing a mountain with no climbing gear on, while also carrying 80kg of weight on your back. I was lucky enough to get recommended to a pain management doctor who took me seriously and I've been seeing her ever since. She was able to get me on a medication that I don't have to take 6 times a day to keep my pain in check. In fact, I am now on the lowest possible dosage of this medication per day, and it manages my pain symptoms (mostly) without me being drugged up and high all the time.
I believe in you and I'm here if you ever need to talk about anything.
@@gracie5463 "Girl" is a synonym for "woman", just as "guy" is a synonym for "man". This is English, words have more than one meaning. Girl is neither disrespectful or derogatory.
Janise’s story hit me particularly hard. I can’t imagine the torment of being constantly misdiagnosed and encouraged to stop trying and find the correct diagnosis. Thank goodness for the woman that encouraged her to stand up for herself.
I felt the same way
As somebody who had that for 11 years. It really sucks.
I've had a Dr do that to me with my back. They make you take a scan tron psych eval before you can get a spinal cord stimulator put in and apparently I didn't score so great on it but my Dr still put it in. When I got an infection from the surgery he told me I manifested the infection because I scored bad on the exam. I was so dumbfounded by it, I couldn't respond to him but wtf. If I could mentally manifest things like an infection, wouldn't I manifest better things for myself? Lol
Toxic health workers are the worst thing, especially when they're dealing with their minds. Ive had a therapist who called me psychotic. Like LITERALLY tried to diagnose me like that. I was an abused teenage girl who had been depressed since 12 and had an ed since 9, but I decided to take it as a compliment, like "yas bb I'm CrAzY". I hated that therapist with a passion.
As someone that has bipolar disorder and being diagnosed for a long time I wonder how did her doctor missdiagnosed her. Like, having a mania episode is the exact opposite of this. My last serious episode I was sleeping about 3 hour a day and waking up full of energy. Also, the wrong meds can be real destructive. There is so many side effects that I wonder if she didn't has some other health issues due to taking them.
One of the most frustrating aspects of this disorder for me has been the lack of education, even in the medical world. I went through so many doctors, including sleep specialists, who did not recognize my narcolepsy because they were expecting overt cataplexy symptoms. Please keep advocating for yourself until you find a medical professional who understands your disorder.
Yeah there’s a doctor out there for everyone. Mine saved my life when he put me on antidepressants and I’m v thankful for him.
When I got diagnosed I already knew about narcolepsy, so it wasn’t too hard to push my thoughts on what I thought I had. But I didn’t want to say that I thought that I had narcolepsy, so I just said that I was tired a lot and described my symptoms. The doctor had me do blood tests and it came back that I was SLIGHTLY anemic and left it at that. I was so upset because I felt like I was making everything up, but my parents let me go to a sleep doctor and narcolepsy was finally considered when I had told them that I was falling asleep while swimming during swim practice. So then I had a sleep test done. Results came back with me falling asleep right away for the night test and the five, twenty minute day ones. I also went into REM sleep all five times within three minutes (it normally takes people 90 minutes). Oh it’s definitely just me being anemic. 😂
this is so true. i cant speak for narcolepsy but i had my doctor who didn't even want to consider autism and instead just insists on therapy for social anxiety. partly because she was a social anxiety expert and also she didn't have enough time to deal with a "new" disorder.
@@mawar_kasturi My experience is kind of opposite to yours. As a child, Autism wasn't as widely known/understood, so I was never tested. But I was overmedicated, misdiagnosed, for years....
Now, as an adult, my therapist and doctor both think most of my diagnosises could be summed up under an Autism diagnosis, but testing for adults is almost nonexistent.
So, still medicated, but not as heavily and we adapt my medication regime a lot.
@@StoriesbyIrish yess. i live in malaysia and the government autism awareness is low even in doctors. even though i can adapt well now, my only hope to get a proper diagnosis is through a private specialist. but i imagine things are better in the west nowadays
As a person with insomnia, it’s really interesting hearing from people who have the opposite problem
Edit: I have been informed that narcolepsy and insomnia are not opposite problems from one another. Thanks for educating me everyone!
A majority of narcoleptics have insomnia
i have narcolepsy, for me while they are to different problems they seem to have the same out come, there isn't much actual restful, healthy sleep going on.
@@Maria-zk3hh I didn’t know that, thank you for informing me
@@Loverofallemo that’s really interesting. Is there medications you can take to help like if you have insomnia or no?
The opposite of insomnia is hypersomnia, actually hypersomnia tends to appear in similar situations as insomnia (when life gets shitty).
This is interesting cause I have insomnia so it’s weird to see the other side
I want to see a video of this that's also so interesting
Crazy thing is because our sleep cycle is sleep wake sleep wake. We can sometimes be experiencing insomnia during night. I can be so tired and then all of a sudden when I'm finally ready to sleep, I can't sleep 😕
My narcolepsy usually means I’m awake at night too. Before I was diagnosed I actually thought I had insomnia because my brain had no sleep schedule so I would feel as awake at night as I should be during the day.
It's so exhausting having insomnia. Night after night, the same thing.
The strange this is, it really isn't like the "opposite" of insomnia; you still have issues sleeping sometimes because you slept too much during the day
"I'm asian, no way I'm gonna give up my rice!" - as a fellow asian: same.
we gotta keep them carbs bro
A man of culture i see!! 👍👍
I love that. I have multiple chronic illnesses and people always say try a no carb, no sugar, no dairy, no grains diet. What the heck am i supposed to eat? 😂
I’m very americanized (see also: “white-washed”) BUT I’M NEVER GIVING UP MY RICE
@@bluebirdoz9055 I guess doctors want us to be breatharians and get our nutrition through breathing.
I'm in disbelief that Janise went to a therapist who wanted her to believe she had conversion disorder. Like wow that is just horrific
I was sent to multiple doctors and therapists who all accused me of ‘malingering.’ Later I was accused of drug-seeking. It took me years of my own research to figure out I had narcolepsy, and then several more years of fighting with doctors to be referred for testing and diagnosis. This is a really common experience for narcoleptics, particularly women. It’s so important to raise awareness.
They thought I had a mental disorder and sent me to a therapist also. It was a blessing though because he was the one who pointed out my narcolepsy.
@@StawbsGirl I swear alot of therapist have narcissistic traits/disorder
@@thorfinn518 many do. My mom is one of them.
And made her read it out loud, no less. Humiliating, demeaning and wrong. It made me so mad.
we stan a person who gives people a platform to educate
edit: clarification- by stan i mean appreciate, sorry for the misunderstanding
yea anothony is literally my go-to channel to understand others’ perspectives
Dont stan anything
@@username8885 you're right this 'anything' person sounds toxic af🤭
yes!! this series has taught me so much!!
@@TheBeatlesLover1962 hehehehe
what janise said is so true. the media portrays narcolepsy like it's a comedy. even with real people who had narcolepsy like jinx monsoon on rupaul's drag race, the show edited jinx's sleep episodes like it's some comedic punch line.
IMO i think everthing is fair game when it comes to jokes. The example that was very light-hearted, and was actually kinda funny to me. But if you should be mad at anyone, it should be the people taking jokes on a tv show at face value and not having common sense, or researching for themselves.
@@Chalk.... uhh i disagree. not everything is fair game when it comes to jokes, it should be the opposite. some topics are not humorous, for example, narcolepsy, which if you actually watched the video, is clearly very difficult to manage for people and not for you to make into a cheap punchline.
@@tlkinghdsluvr I think the more we tip toe around topics the harder it is to talk about them. If you want to educate people that's fine i don't care, but if someone wants to make a joke (especially if it's about the disability itself rather than a specfic person) you shouldn't care either, *especially* if you don't have the disability yourself.
For example if you can make fun of white people you should be able to make fun of black, asian and every other race and ethnicity that exists. It's only fair. If I can use "cancer" as a word when describing something that isn't *ACTUALLY* cancer, then why can't i do the same when talking about OCD or ADHD for example?
Either make fun of everyone or make fun of no one, and i don't know about you, but a world where the only jokes you can make are knock knock jokes and puns is a world where things are boring.
@@Chalk.... all or nothing. I 100 percent agree. Quit trying to censor EVERY little thing!
C'mon. I get that some jokes cross the line, but we HAVE TO be able to laugh. If everyone thought like this, not even the most innocent knock knock-jokes would be okay. Is that what we want? No. Being able to laugh at yourself is such a good and important quality. We can't take everything too seriously.
Cracking a joke doesn't mean the joker doesn't care about the actual issue behind the joke.
Jokes and humour can be a great tool to reach people, find common ground. Make it easier to talk about things.
I do agree that we should try to be a bit sensitive/thoughtful/mindful of how certain jokes are taken, but not being able to joke about anything with actual substance to it would not only be terribly boring, it would lessen our actual freedom of opinion and speech.
I personally have been through horrible trauma, absolutely terrible and undescribable several times. Sure, when some traumas were fresh, hearing let's say for instance a rape joke would absolutely crush me and I got terribly offended. That was my right. What wasn't my right tho, was trying to demand other people limit their speech.
Now, some years later, certain rape jokes can make me laugh way harder than most jokes. That doesn't mean it's not to be taken seriously (which it absolutely should), it just meant it couldn't hurt me anymore like it used to.
I just think that when joking about certain topics, you should be mindful of the listener considering how it's percieved. You should also have some actual knowledge so you understand why and/or what about the joke might be offensive. Just be mindful.
Some rape jokes are made by total misogonysts without any empathy and/or understanding of the topic, and those jokes aren't even funny.
Others are made by people with good enough understanding to get how much of a serious issue it is or by actual rape survivors like myself, and those jokes can be extremely funny if excecuted correctly.
Remember that comedy is a form of art. It's hit or miss.
Whether you like a joke or not doesn't really matter. What matters is their right to make a joke, and your right to complain about it. Free speech is extremely important and just like democracy, it's fragile.
You *DO NOT* wanna live somewhere where a joke can get you in actual trouble.
If certain jokes offend you, try to explore why. There might be something laying underneath which you can learn and grow from.
I have a very severe case of Narcolepsy with Cataplexy my case was studied by doctors across the United States because of its severity and how it was developed. Without high doses of medication I literally can’t leave the house. I’ve almost died multiple times just from laughing. Thank you Anthony for making this video to educate people
@Nin Tofu have u ever tried an appropriate diet to treat your condition? I heard that a low carb / keto diet can really help! Wish u both the best!
@@hey._.howudoing5112 no offense intended, but many people suffering from chronic disorders don’t appreciate people they don’t know recommending treatments to them, due to the fact that the poster mentioned that they’ve been to many doctors, I’m sure that they have been told about changing their diet or something along those lines. I know your intentions are good but maybe think about this in the future. It’s not a big deal but can be annoying for people telling their story feeling obligated to respond to every recommendation that they’ve already heard for years. That’s very nice tho! Have a good day everybody!
Damn. SO your case is also triggered by positive stimulation. Is that a universal constant for everyone with narcolepsy?
@@yiklongtay6029 from what I've seen... yup. It's triggered by strong positive emotion. Like laughing.
@@yiklongtay6029 It's very very strongly associated with each other yes (for example narcoleptic mice will cataplexy like crazy when they get chocolate because they're happy, or dogs when they get their favorite treats), but you can also have it from negative emotions. It tends to be a primary emotion, like anger or fear for example.
honestly seems like one of the most horrible illnesses ever. these people are so strong
Yeah
I have it and it’s not that bad. But I have had it my whole life.
Definitely not one of the most horrible illnesses ever. Incredibly life altering and difficult to deal with, and im not discrediting their suffering, but there are much worse illnesses people can suffer from
uhh sorry my little sister replied to this comment for some reason ......
My sleep disorder isn't that bad, but sometimes when I've finally slept well, my bones feel weak, especially my spine.
I love the Asian girl, as a POC not being taken seriously by doctors is SUCH a relatable feeling
I don't mean to sound dence but, do doctors really not take people seriously because they are poc?
@@jothecook I do believe it's something anyone can experience.
But it could also be because of similar reasons like biases. Like black women dying more often from childbirth.
@@jothecook yeah unfortunately medical rac ism is a thing, i can't speak from experience but i recommend researching it because its a very real and very serious problem that i didn't even know about until recently
@@inactive1393 wow I had no idea, I'll look into it
@nuitNo.6 Considering the numerous amount of studies done on it, yes being a POC does have things to do with it. A doctor is more likely to underestimate a POC’s pain level & not believe them. Personally, had this happen to my mother who’s doctor’s didn’t believe she was having extreme chest pain, she had a heart attack.
You can be white and not feel like you’re being taken seriously by doctors. But it’s not because of your skin color, it’s the doctor. It’s more likely to happen to POC BECAUSE of their skin color.
I really don’t want to hear about me having a victim complex when A) you don’t know me & B) you know nothing about what it’s like to be a person of color.
When Janise said “Finally I knew that it was not my fault!” I started crying. This whole video has me tearing up to hear of others like me. Unfortunately, even after being diagnosed with narcolepsy I was STILL told and am still told that it is my fault and that I’m just not trying hard enough. I honestly don’t know what to do anymore.
I'm so sorry :( People suck. Just know that there are people who know you're doing your best and are rooting for you, and I hope you can be surrounded by them one day. Sending you love
I have narcolepsy too. People don’t understand that this condition is out of our control. As frustrating as it is, remember that you are doing the best you can given your circumstances.
Honey no matter what people say, even if it's family, is never your fault and people either need to accept that's how your brain works and is a part of who you are, nothing to be ashamed of! Or they can get the fuck out of your life. Be safe.
I hate this for you because I understand completely. I was always wondering why I didn't have the same amount of energy as others my age. I blamed my weight and everything. It's hard for people to understand. My ex cheated on me because of it. My family still doesn't understand.
I’m not even aloud to talk about it in my family specially my sister who has a lot of med problems and is an actual hypochondriac. I was diagnosed about 6 months ago but I’ve had it undiagnosed for a very long time. People have a very hard time understanding it. It’s ruined a couple of my relationship and even a job I use to have. People think it’s not something that doesn’t actually exist and expect you to function like a normal healthy human and get mad when you obviously can’t
every single person with a chronic illness or invisible disability has that SAME STORY of condescending doctors who don't believe our symptoms. especially those of us who are women.... it's unfortunately so common to be written off as "stressed" or "hysterical" and not taken seriously by medical professionals
Tbh this is a rare disease- doctors aren’t magic. There will likely be misdiagnosis when looking after rare diseases because doctors aren’t actually taught about them and I’m not really sure how to fix this. Getting people to a specialist is important but when you don’t know what sort of specialist to send them too it gets complicated
And with regards to things like conversion disorder or some functional disorder- the issue Dr’s have is it’s such a fine line and sometimes encouraging that it’s not functional can make functional disorders worse.
I literally met a woman who was paralysed from mid chest down- she had been treated like it was a real injury for 6 months having tests and such. When a Dr worked out it was functional (aka no physical reason she should be paralysed) she was walking within a month. She could have spent her entire life paralysed if doctors had carried on listening to her. It works both ways
Same
Yes!
Wow 😳 I really relate to this 🙁 It took me 18 years to get a real answer/diagnosis from a doctor. I finally had to keep pushing them to do more tests rather than just concluding that nothing was wrong or that the issue was stress related after performing 2-3 basic tests.
Bring on 2021 as a psychology student and also being miss diagnosed with conversion for years, when my later I was diagnosed with narcolepsy, Postural Orthostatic Tachycardia Syndrome, and Chronic migraines I have a love hate relationship with it. I know it’s a real disorder and I truly do believe some people have it like the women in your example. I mean I went to a therapist who had social skills classes for her OCD patients twice a year and the other girl in my class was very open about her diagnosis. One class we saw version of the disorder where she all of a sudden went in a British accent. She didn’t think she was, it was like her mind was telling her brain that she had intermittent foreign accent syndrome. but I also know many with similar chronic illness to mine and diagnosed with conversion before their real diagnosis. With narcolepsy, no there is not a cure to “fix” it none of the disorder I have can be “fix”, but can be managed with medication. The exception is Postural Orthostatic Tachycardia Syndrome, you can only try to treat the symptoms but because of the unpredictabity, and hour by hour sometimes minute by minute nature with different symptoms a lot of us are considered disabled, and some of us (like me) have gone the service dog route to try and help. I use many things inside the medical tool box like diet, certain exercises (which is hard because I am exercises a heat intolerant due to the dysautonomia the umbrella over Postural Orthostatic Tachycardia Syndrome ) along with medication, and my new tool a percussive therapy massage gun to help with blood flow.
Can you do something with endometriosis? So many women have it and there are also so many women misdiagnosed or told they just can’t deal with “that time of the month”. I really would love if you could help bring awareness to this disorder
planning on this!
@@AnthonyPadilla Would you consider opening that conversation to include trans men? There's a guy called Cori Smith that has an amazing article discussing the way that endometriosis itself is overlooked- even when anyone can have it
YESSSSS, it's so awful. I would love to see that video
@@forgottencacoethes I would love to hear about their point of view
@@forgottencacoethes not to be offensive but ion really fuck wit the trans community and I would love to learn about it from women who are women
I can tell on my mom's face when she's going to have a cataplexy attack, I'll run up and bear hug her so she doesn't collapse.
That’s so amazing! I love that! I’m sure she really really appreciates that
@JordanTheYesnt it is tied into narcolepsy and is a symptom some experience where they lose all muscle strength after experiencing certain intense emotions. For example my moms is usually triggered from laughing and if nobody runs to hold her up then she would collapse to the ground. However my sister also has it and she usually had a bit more control at first and can get herself to a sitting position so she doesn't collapse to the ground.
Bless your heart 🖤
That is so wholesome, oh my god I love that. Sending the best energy to you & your family.
I have narcolepsy with cataplexy too, and you are so sweet, that’s exactly what you should do😊 And if sometimes you are not able to support her weight completely and she still falls on the ground, stay close and help her to get in a safe position so that she doesn’t hit her head on anything🙂
Hey Anthony, if you ever make a video about people with Endometriosis, I'd love to speak to you! Im 31, disabled from Endometriosis, ive done 2 different chemotherapy treatments, and 6 surgeries. Endometriosis effects approx 10-20% of adult women in America, and over 176 million women worldwide. These numbers are probably much higher than that though, because it takes on average 10 years, and 7 different doctors, in order to get a diagnosis, and the only way of diagnosis is via surgery.
I am literally an encyclopedia about Endometriosis, and would be so happy to talk about the effect it has on those who have it, and their families and friends.
Also, id just like to say, that cramps are totally normal, but *pain* is not normal, its your bodies way of telling you something is wrong. So if you experience pain associated with your cycle, *PLEASE TALK TO YOUR DOCTOR*
Just commenting on this to try and get it seen more! Such an important topic 🙌🏼
Great topic
@@amyjrobinson thanks! I sent an email for it to be a topic, so hopefully he sees it. I really think a cis male speaking about it would *really* help since it doesn't effect them, so it could bring the topic to new audiences, and hopefully help people know that what they're going through has a name, and more importantly a *HUGE* support system attached to it.
@@janetduran5480 thank you! I sent an email, so hopefully its seen, and I was able to convince whoever checks that, that it would be a good topic.🤞🤞🤞
How much pain is bad? I get painful cramps sometimes but it’s fully manageable.
" i spent a day with people with epilepsy" like this so he can see it pls
Ive been diagnosed recently and been doing my research but id love to hear from people what is their experience and learn from it♥️
Glad you got diagnosed. It took 7 years before I got a diagnosis, after we took a year or 2 tofigured out the meds I need I got resume a normal life. Hope things go smoothly for you!
I’ve only had one seizure so far. I’d love to hear about epilepsy from the people who have it.
@@lisakay2810 it took 3 years of focal epilepsy , i got diagnosed when i had my first seizure , although it took years for me and im on my 2nd/3rd month of medication , im glad that i had the opportunity to be diagnosed and get the treatment and care needed for my condition , im still processing it but ill return to my normal life soon hopefully.
I would love to do this ive had epilepsy for about 7 years now and so many people dont understand it. The one thing that got me through it was having others to connect to and talk about my situation
One of my old managers had epilepsy, I’d love to hear more people talk about their experiences
He should do a “the world of ptsd” cause as a person with post traumatic stress disorder I’d find it interesting to hear from others with the same struggles an how they deal with it on a day to day basis and how they build themselves back up with positivity while ptsd being such a negative gloomy/foggy feeling ✨could y’all get some likes on this so he might see it✨
An also I just wanted to say if you happen to see it I absolutely love ya work an that you give these people a way to verbalize their stories an struggles and how they help others understand or maybe even deal with the same issues that happily shed some awareness an light!! I’m just happy that you’re basically saying not everything is black n white an there are gray areas that not everyone sees an I think it’s amazing! Keep it up💕🖤✨
Hey Anthony look up Jesse Eging he's definitely someone yoy want to talk to about PTSD
Yesssss ! I hope it'll be inclusive of c-ptsd as well.
Yes
And C-PTSD 🥺
"I'm asian. There's no way I give up my rice"
A QUEEN. I LOVE THIS GIRL
i like your profile pic 😌
@@inactive1393 i like yours too
my piano teacher had narcilepsy and slept through a piano performance. i was a little kid so i thought she was being disrespectful but now i’m aware of the language for the dysfunction. Thank you anthony as always.
My sister has narcolepsy with cataplexy. Janise's story reminded me of the time my sister was cooking breakfast in middle school and she held on to the spatula for so long that the handle melted into her palm. We were goofing off, and I now know that we had triggered a sleep attack. She was standing, and seemed awake but she was in REM and the burn could have been a lot worse if I did not notice that the plastic was melting and I literally had to push her away from the stove.
Our kitchen is a no joke zone, especially when my little brother is around, that boy is a safety hazard. 😂
When my sister was diagnosed, every friend and family immediately accepted it, because all of my sister's mishaps and "quirks" growing up were actually symptoms. It all made perfect sense. It was a relief to everyone that she was now getting treatments that help her.
You don’t trigger sleep attacks….. cataplexy is triggered
A para-professional at my school was talking with some other para-professionals and she said "Does anybody else wish they had narcolepsy? Like, you get to fall asleep easily!". Tbh I wanted to slap her, you should never want a disorder.
Oh hunny I’d have lost my shit😂 I’ve never been able to relate to people enjoying sleep because it’s always been something I hated about myself and had to avoid.
I fall asleep while screwing an electrical box thingy, that's not a good experience
People have said something similar to me about my diabetes, yeah people suck.
“I wish I had diabetes that way I could get scheduled snack breaks”
Exactly.
I wish you slapped her
I have a severe case of narcolepsy with cataplexy, I wouldn't wish it on my worst enemy. I've almost died because of it a few times, sometimes my whole body will become paralyzed and I'll be laying there feeling like I'm suffocating because I can't control my own breathing, waking up for me is painful and sometimes I can't make it to my medication that's an arm reach away. If you think you or someone you know might have narcolepsy, be sure to get a referral to a sleep doctor, there's more to life than suffering.❤️ (Ama I don't bite)
Although I have mild narcolepsy, I relate to this a lot. ❤️ I’ve had sleep attacks in public, then having to walk home in that state... the amount of times I cross the road without checking traffic 🤭😢
I have a mild case of narcolepsy, how do you explain it to your employer so that you don't come across as lazy?
@@trevbuchet6777 If you are in the US narcolepsy is a protected disability, which means you can't get fired for it and your company has to make modifications to help you manage it. Tell your HR person and your boss. Get documentation if needed--a note from your doctor, NOT your diagnostic paperwork. And ask your boss to do some research or provide them a link to a video like this one so they can understand. I did it and it was weird, but it makes me feel more secure.
@@trevbuchet6777 depending where you live there should be rules against getting fired/looked down upon in the workplace, you shouldn't be able to be fired for things outside your control. I would explain that not taking scheduled prescribed naps could be dangerous due to narcolepsy, neglecting your needs could put yourself and others in harm's way and as the employer they need to acknowledge that. But before I was diagnosed my managers let me sleep on the clock because I did my work plus others despite being a part-time worker. I hope everything works out for you
(｡•̀ᴗ-)✧. Best of luck.
I’ve had cataplexy before in the pool and almost drowned :( I don’t swim anymore because of it
this video actually helped me realize my excessive daytime sleepiness was a problem, and now 2 years later i'm 1 year diagnosed and being treated for narcolepsy. thanks for this
Anthony is just one of the best interviewers I’ve ever seen. He is so compassionate, respectful, and willing to cover topics no one else will. We Stan a respectful king...
Yes
can yall make this comment viral so he can consider interviewing suicide hotline dispatchers-
That would be so interesting
yesss !!! Make this the top comment
Ouuuh, that would be a good one
Yes that would be very interesting. Its definitely not a fun job haha
!!
Hi Anthony! I’m epileptic and would absolutely love to represent people suffering with epilepsy. There are many misconceptions and tons of misinformation about seizures and epilepsy in general and I think it would be awesome if you could use your platform to bring attention to those! Thank you for covering topics and making your audience aware by speaking to people who have personal experience. I appreciate this series so much!
I would looove to hear more about it, it is a very interesting and misinterpreted disorder. Hope he is going to do this soon.
You can email him through the email in the video description! would be a very interesting video
I also have epilepsy and have been waiting for a video on that topic! I'd love to hear from more people who have different types of epilepsy, as well!
@@laurenhuston206 im an epileptic as well and tbh ive been waiting forever for him to do a video on epilepsy like it is just something that truly needs the awareness he can give
This! I'd love an epilepsy video.
I couldn’t imagine even having this. I feel so bad.
you haven't finished the vid
@@Ismail-lj4wg yes but i already know abt narcolepsy...💀
my husband wants me diagnosed. he swears i have it. i will sleep last night 8-3:30 and wake up exhausted. i will sometimes be in the passenger seat of the car and talking and 5 min later snoring after the convo ended. my husband said with how sudden i fall asleep and i dont realize it completely everytime, hes worried about me driving. i am scared to drive for other reasons so i dont
i have narcolepsy ! was diagnosed two years ago :) it was a struggle , especially with school, but after being on medication it’s getting a little easier. you learn to live life a little differently i guess you know , but in my case i wouldn’t say it’s too terrible 🖤
@@chloem.949 i would definitely talk to your doctor about getting a sleep study done!
Oh boy, Janise saying 'For the first time it's not my fault' hit really hard as a neurodivergent person 😥 I feel that
Me too
Same
same
Janise is super relatable. The feeling of knowing something is going on with you and just being fobbed of, misdiagnosed and told you're not trying hard enough. I had a therapist who really did help me with a lot of things, but her "motivation comes from doing! You gotta make yourself do it, the motivation isn't going to magically come to you!" talk was really pretty damaging for my then-undiagnosed ADHD self. Finding out that I wasn't just lazy and flaky was freaking revolutionary
Jinkx Monsoon introduced themselves as having narcolepsy when they entered Ru Paul's drag Race. And yet when they fell asleep there was still a story line about how everyone thought they were lazy. Which I thought was rather stupid.
I remember watching this right after my diagnosis. It made me feel so horrible about myself, but Jinkx's confidence & pride in themselves & how they didn't let their diagnosis stop them from achieving their goals was empowering to me.
My coworker has narcolepsy and one day she missed one of her medications and when someone made her laugh she was down, just the burst of any feeling (good or bad) made her fall. I now know that she can fully hear me but can't move, sometimes she can move her thumb and that lets us know she's okay. Sadly she can't get her license and it's hard to work for her
Yeah, that’s usually the most stressful part. I’ll usually collapse outside of the cinema and people will gather round and ask if I’m okay but I just can’t respond. It’s like my brain is there but my body isn’t.
That's wild! Some of my seizures are like that. I can hear everything and know what's going on but I'm frozen. It sucks
that happens to me too!!! it’s really funny and it makes me laugh harder i’ll be on the ground for like 5 minutes. driving is a lil hard without my meds but i can normally do it i rarely miss my meds tho.
Ugh, the Psychiatrist ruining that one girl's diagnosis makes me so mad. As a therapist in training I'm so sad that professionals like that exist and jeopardize people's health. When physical properties are worrisome it's our JOB to make sure nothing physical is wrong with people, BEFORE diagnosing them with a thousand mental disorder. Smh
@Jack Snow Depression is a hard to diagnose kind of thing...
@@lilskipper4683 Its the most commonly diagnosed disorder. It's not hard to diagnose. At all.
@@AnxietyRat yes and because of that it's often misdiagnosed. Do ur research before you start coming at someone for the false info you believe.
@@lilskipper4683 Its not false info, my guy. ANY disorder can be misdiagnosed. I also literally have multiple mental health disorders 🤷♀️. Anxiety and depression are extremely common. That's just a fact. I'd ask you to do YOUR fucking research but we both know that won't happen. I can sleep well knowing I've done mine and what I say is literally backed up by professionals in the field.
@@AnxietyRat If it gets misdiagnosed then it's hard to be certain that the person has depression. Often times people have been diagnosed with it and don't even have it but just have similarities to those with it. So I really do think you should do ur research before you come at me again.
And is there really a necessity for such language? Honestly it doesn't help anyone's case when they start effing and jeffing at someone.
I was devastated when I wasn’t chosen to be one of the people interviewed because I was scared Narcolepsy wouldn’t be correctly represented. Watching the video, I couldn’t agree more with everything said! I would have had nothing to add because they nailed it XD
I know what you mean, I was crossing my fingers as I started the video XD. I've seen people paint it in a weird light and people who have pretended to have it. Glad to see it talked about in a truthful way.
I don't have narcolepsy, but I can't imagine how amazing it must feel for something you have to be represented properly ❤️ happy for you!
That’s so good I am happy you feel represented!
well i dont think it would ever be misrepresented when interviewing people that actually have it lmao
@@verminscum I mean, yeah, you're right. XD I guess, I meant I was relieved that they were not only self aware about how it affects their life, but they were able to explain the science and teach about Narcolepsy itself. I see a lot of Narcoleptics in my Facebook group that I wouldn't want representing the disorder as a whole XD
I love seeing these ones on chronic illnesses. I would love to see one on women’s long term conditions (PCOS/Endometriosis/Adhesions) and the stigmas surrounding them and ESPECIALLY doctor’s diagnosis on women’s issues and believing in people’s experiences
Endometriosis especially yes! And IC!
Also ms
And fibromyalgia. Unfortunately it’s looked over in most cases and affects a lot of people
@@rylieruiz5447 i definitely want to see one on fibromyalgia cause i think i have it and during research I've seen that there is so much misinformation/lack of information (and its also really hard to diagnose)
Yes!!! As someone who has debilitating endometriosis and who struggled to get properly diagnosed, I support this
I wish these were shown in health class. I would rather hear from a person with specific conditions talk about their conditions instead of someone who has no experience with these conditions talking about them. For example I don’t want to learn about depression from someone who doesn’t experience depression.
I agree
I have a psychology class in this year of school, in the first semester we had lessons about anxiety, depression and OCD.
As a person with most symptoms for all those 3 illnesses, it was painful for me to hear the teacher explain to me what my pain feels like... aka something that I KNOW too well what it feels like....... because I do infact have that painful experience......... Judging by the way the teacher explained those illnesses to us in such a simple manner, I could tell that she lacked some qualifications to make us truly understand what those illnesses were like >_>
@@danab0440 I understand and I agree, it would be more reliable, relatable... and closer to the reality. Mental illnesses already are hugely different from person to person and many times it's hard to find a common path or synthoms between people who share the illness, imagine to have to do it with someone who doesn't even know it..
In general, I think that the best teacher is the one who acknowledges its limits (I use its for both genders) and knows that no one in the world can be prepared on everything...sometimes you should simply and light-heartedly give the space to someone who knows the matter better than you thanks to its experience. It's a form of correctness and respect that many teachers confuse with a loss of authority, while it actually is one of the most precious virtue a teacher could have, at least for me.
This would be cool. However it's unlikely to work alone. Having a generalized idea of a disability is overall better, but both would be nice.
Yeah these would have been so much more helpful than some washed up UConn sports science major who won't say the words "penis" or "vagina" during sex ed
As a narcoleptic, I appreciate you talking about this. It’s so misunderstood
It seriously is... I wish employers & educators knew more about narcolepsy.
As a narcoleptic, I am so excited for this video! I submitted to be a part of it, but ironically, I slept through the deadline so my submission was too late to be considered. Whoops.
Is that you in the picture? You are georgeus 👍😍 love from another narcoleptic 😊
Like a true narcoleptic 🤣
@@miegravgaardxoxo it is, although its a few years old now. Thank you!!!
Janise talking about fighting for yourself made me cry. She's right. Never stop fighting. You deserve better. :)
I have some kind of undiagnosed sleep disorder but a lot of my symptoms are similar and hearing their experiences made me feel so validated, my sleep issues have always been overlooked and I’ve always been told I’m just not trying hard enough so to hear that I’m not alone fills me w/ such relief. Even if I don’t have narcolepsy, hearing people talk about sleep experiences is really validating
Same here ! I don’t know whether I have sleep apnea or something else. The symptoms I’m hearing here are so relatable. I wonder if the two things have very similar symptoms. I’ll have to look that up. I’ve had sleep issues ever since I can remember.
have you spoken with your doctor about hyper somnolence? After years of
sleep studies I was finally diagnosed, and treatment has changed my life.
@@larysamcmullan7321 I haven’t, I’ll look into it though thank you so much!
I agree. I was misdiagnosed with narcolepsy for years but after a couple years was finally diagnosed with idiopathic hypersomnia
you're not alone! 🤍 i have narcolepsy type 1, but i am in the r/narcolepsy discord server & there are so many people with different types of hypersomnia sleep disorders there. would love to have you ^_^
My girlfriend has narcolepsy and she often hallucinates when we go to bed or wake up. we talked about her condition and she told me not to worry but this video also clears some things up for me. thank you ❤
Thank you for supporting your girlfriend's journey with narcolepsy.
I just wonder who has to fix Anthony's ceiling after every intro lmao
Someone is gonna get R/wooooshed here, i just know it
😅💀
@@XemeraldXD i actually looked at the replies to see if anyone has lol
@@thxu4_the_venom657 same
lmaooo u right
As someone with epilepsy, I would love to see an episode of you interviewing others with it!
“I need my rice...” UM YES. WE STAN HER. I CANT LIVE WITHOUT RICE.
I love her!
WE STAN AN ASIAN QUEEN YESSSSSS
Absolutley, life without rice is simply no life at all
@Domi B put that with some enchiladas and I think that you got yourself the perfect meal
Okay no offense to your comment AT ALL but how is this comment that says "stan" okay but the comment like just before this says "stan" and they get bombarded with hate comments for using the word?? 🤔
This just reminds me how terribly poor Jinkx Monsoon was treated. The girl was basically bullied on TV because of having narcolepsy and nobody talked about how deep this stuff actually gets.
That was my first thought when I saw this video!
dude if i was a company i'd sponser the hell out of this series
As a 17 year old with narcolepsy, I've been waiting for this one!! Thank you, Anthony. :’D
Aw can you say what a daily routine is like?
@@sapphirequartz567
Oof, well, I had a real “pull myself up by the bootstraps” mentality while I was in school. I napped for hours each day when I got home. I was just barely managing my sleep around soccer, violin, and school. (but honestly, I slept through countless events and appointments anyway)
Besides the napping, I just learned to cope.
I was medically withdrawn from school almost two years ago, unrelated to my narcolepsy, but that was when my symptoms started progressing and I was napping four or so times a day AS WELL AS sleeping for 8.5 hours each night. I got a sleep and nap study conducted and was diagnosed then.
These days, I don't have a solid routine, but I do my best to work around my sleep instead of the other way around all the time. I usually take one small nap a day and sleep from 8-9 pm to 6-7 am.
Teagan Youmans oh thank you! It really is hard.
Me too! I’m 16 and NEED people to know I’m not just lazy or drunk or have a bad home life. We need more representation on popular platforms like this!
Wait, same
I really want Anthony to interview people with ADHD.
coming soon!
As someone diagnosticated with Narcolepsy and ADHD I'm looking forward for this ! It's sooooo mentally draining... Having an hyper active brain but also being super sleepy/slow body/reflexes... My buds told me sometimes they can even have a talk with me sleeping... I'm litteraly replying and talking to them... sometimes my answers makes no hell sense at all.
@@ZeoHusky Lol, we're out there!! I have chronic fatigue and ADHD also. My wakefulness medication is actually an ADHD medication but it does nothing for my ADHD ironically lol 😭🙃 Sending you good vibes ~*~
@@ZeoHusky that must suck so much. I’ve heard there’s a correlation between adhd and sleep disorders, but I assumed wrongly that it was mostly insomnia.
I have adhd and can barely function when I haven’t slept well for a few days, honestly I’m impressed with your willpower and whatever else you’ve used to get through that. 🙌🙌👌
@@AnthonyPadilla ADHD GANG
As someone with narcolepsy I almost cried when I saw you made this video. It sucks so much that this disorder is so misunderstood and makes living very hard. Being constantly told by people who don’t know what narcolepsy is that I should be able to control it and that I’m being lazy has taken a huge toll on my sense of self worth. Seeing so many people in the comments being so kind and supportive is really really uplifting and seeing these people talk about it makes me feel so much less alone. One thing I didn’t notice any of them actually use the term for was sleep paralysis. This is by far the scariest symptom I’ve had and it’d be great to get a cure for it. For anyone who’s never heard of or experienced sleep paralysis, it’s basically when your brain wakes up before telling your body to wake up. So what ends up happening is you hallucinate (oftentimes they are terrifying hallucinations for me) and you can’t move or speak. I get these sleep paralysis episodes in twos and usually end up too scared to let myself purposely sleep for a day or two. Definitely a symptom that needs to be talked about and addressed more by doctors.
I also have narcolepsy and you described perfectly the scary combinaison of sleep paralysis and hallucinations / terrifying nightmares! Fortunately, one of the meds I take has completely erased those symptoms (but I’m not sure that TH-cam would allow me to say the medication’s name..)
@Léa Harvey I'm sure you can, I've seen a few people bring up medications like zoloft and adderall in comments.
As someone with narcolepsy thank you so much for being so respectful and understanding. You are a beacon of light Anthony. 💙
aww this is adorable
Ahhhh a fellow narcoleptic lesbian I see...
@@abbiexx1953 same here!
I love this channel. It’s so educational and shows the spectrum on these disorders that people don’t think about.
Also Anthony I love that sweater.
The sweater reminds me of Pewds 😄
Well hi Azula
I didn't know you watched Anthony Padilla
@@deathvideogame azula is the best
I was diagnosed with idiopathic hypersomnia earlier this year after my mom (who has narcolepsy type 1) motivated me to get a sleep study done. Now that I seem to be on a medication that works life is more manageable. I appreciate the education on this condition instead of continuing the stereotypes.
For years my father refused to see a doctor about his symptoms. Then when he was about 35, he was driving my mom, my brother (3 at the time), and I (6) home and suddenly fell asleep at the wheel. My mom was able to reach the hand break and the truck stopped sideways in the middle of the road. Luckily the roads near my house are almost always empty and no cars were around when it happened. But, if we had gone off the road we would've crashed into full grown pine trees. He talked to the doctor's soon after 🙃
How's he doing now?!
@@kip4833 Much better! He's been on medication ever since! Of course he purposefully takes the occasional nap, but not even close to how often I do lol
Big hugs, what a journey.
ah i really hate how people just can't get something drilled into their head until they've actually encountered the risks for themselves. it's like someone who will never wear a seatbelt until they get severely injured in a car accident because of it... these things that could've been prevented if they had listened earlier.
There's something cathartic to see other people who have it say the same things you feel inside too. Narcolepsy sucks.
So true! You are not alone. These kinds of stories are so important to remind us of this.
When Janise is talking abiut advocating for yourself and the struggles of misdiagnosis, I really felt that. I almost teared up at her story. I went through a very similar process with systemic lupus and I hate that we all have to cycle through a series of doctors not only misdiagnosis but usually saying it's all in your head or hypochondriac. You have to get so sick before they finally test and then it's like oh 👁👄👁 why didn't you get a blood test before?
right! my mom has lupis and she would always tell me how she went through mulitple diagnoses and being brushed aside before they reached the conclusion. she taught me to always fight for myself and my health issues 💪
Yes. I have a genetic disorder and I am still undiagnosed.
I didn't take my mom, she is bipolar and does not live locally, but that whole half of the family has it, my mom has it, my doctor didn't give me forms, and I have enough symptoms for diagnosis though a mild case, though all the records are very old because people in my family that have it tend to die and everybody else is afraid of the doctor.
The doctor said basically I didn't look like I had it 🙄 (I keep myself healthy so I don't spontaneously die), refused to look when I did the hand sign and I was shaking too hard to do it at first, which is worth 2 points and he gave me 6 of 7. Sent off a test he knew would fail to find the family specific mutation, which is not known for mine, promised to send me to a cardiologist either way but refused when this nonconclusive test came back negative. It was 500 dollars.
Honestly my faith in being listened to was seriously harmed by that doctor. I walked out of the hospital earlier than I was told the appointment would last and cried (I knew the test would be negative). I have since found a family health history form to fill out but I am so anxious when I look at it.
When I get up the courage and money/ history I'll go upstate to where they have a center. Okay I'll work on it this week.
It's marfan's syndrome. Rarely see it, as it is rare, but the doctors on ER misdiagnosed it and the dude died.
Also my cousin was 2 years older than me when he died. I am 25.
The doctor was talking like he saw it daily for decades, which is impossible given its prevalence, and people seeking care must have pretty severe cases otherwise they wouldn't know.
I wish my mom had brought me when I was a kid, but she is bipolar and unmedicated.
i love the personality of the asian girl she’s so emotive she sounds more awake than i am
i lost it when she said ‘i need my rice’
she just said _narcolepsy opened her eyes to others struggles_ just thought it was a funny irony i had to point it out
She’s totally adorable! Love her 💜
I have been diagnosed for 1 year and seeing this makes me so happy and less alone🥺🥺
You’re definitely not alone! It can get really tough and you’ll feel insecure about yourself and worried but in the long run you’ll learn how to cope and feel proud of yourself. Because at the end of the day, you’ve just fought a chronic illness -you are the strongest person in every room!
The most important thing to remember is there’s nothing ‘wrong’ with you. You’re no less perfect than you were before your symptoms and this illness will only make you a stronger person Xx
I don't know anyone else in real life that has narcolepsy so I understand the loneliness. I've joined a couple online communities for narcolepsy. I'm able to ask questions and hear other people's stories
same! I have been diagnosed for 1 year but have been living with narcolepsy for over 12 years. the struggle is real and continuous but it's so nice to see I'm not alone! ^^
@@TheFuzbud888 you are definitely not alone! Wakefulness and big hugs sent your way.
Right? Me too and I've been diagnosed for 13 years now. :-)
My mom has narcolepsy and it is very difficult for her to navigate through life. My heart goes out to her and everyone else who has been diagnosed with this sleep disorder. ❤️
as someone who has narcolepsy, I really appreciate that anthony is taking the time to give us a platform.
Me too, the media really likes to shit on us.
@@abbiexx1953 trueeee
As someone with narcolepsy I was sort of scared to watch this since its so misunderstood and misrepresented, but as always Anthony is an amazing interviewer and did well to put a pretty wide lens on it :')
I had to drop out of highschool because of narcolepsy aaaand its interaction with/amplification of mental disorders. Luckily for me I'm good at tests and got my GED easily, but some aren't so lucky! It's pretty tough. I'm also thankful that once I started doing what I like to do, and things that keep me active and engaged, my condition improved immensely. Now I work in environmental conservation, soon to be a wildland firefighter (yes, chainsaws and all) and/or search and rescue worker. No, I typically don't tell my employers I have narcolepsy because it's not legally a disability and its very hard to explain to someone that its not just randomly instantaneously falling asleep. If I feel an oncoming sleep attack or if I'm tired from a restless night, I swap out just like everyone else should.
... If I weren't on medication that mutes my cataplexy though, that might be a problem. Lol. (I joke, again I'm lucky that so long as I don't have too many stressors, my narcolepsy and cataplexy are both manageable)
Thank you for sharing your experience!
I still haven't watched the OCD one for the same reason. I'm scared.
Same lol! Thanks for sharing!
When Janise said that her chronic illness made her mre tolerant and accepting of other people and their struggles I really felt that
Same here
It gave me so much empathy for others. I now never, ever call anybody "lazy". You never know what someone is going through.
As someone with Narcolepsy and was diagnosed wrong 20+ times, I was excited for this one. Thank you Anthony for showing the struggles of the day to day and diagnosis problems.
I can't thank anthony enough for bringing this disease to the forefront. I've been struggling for 10 years and it's very isolating. It makes me feel not so alone if people understand
Agreed!
I’m so glad someone did this. I’ve been living with narcolepsy and cataplexy for 7 years now. I am i only 25 and this weighs on my life heavy. You just have to push threw it daily and it can be depressing as hell. It’s like you can’t have a regular job, driving is scary, it’s hard to live by yourself and the people in your life have to be very understanding. Being there is no cure things often feel hopeless. The drugs have bad side effects and are not always available. We have to put more effort into this, please support the research so we can find a cure.
You should do a day with Immigrants, people who've crossed the border by either, waking, being smuggled in or by sea. And how their whole experience was.
This would be awesome, but please please please protect their identities!
That would expose them..
@@caprisunlover4732 It can be like the person mentioned above. Cover their face and they can just tell their story without giving their real names or personal information.
Political/war refugees too!
@@deirdredelarosa2273 would that not be a crime on Anthony's side
as someone with epilepsy i can definitely relate to the point about media misrepresentation. i was diagnosed at age 7 but had no idea until i was 17 because flashing lights didn't bother me and i was never on the ground shaking with foam coming out of my mouth (although that does happen to some). would love it if you made an episode about epilepsy
seconding this we need a video about epilepsy!!
I was diagnosed when I was in middle school, but only after I was taken to the ER after my first grand mal. Learning about epilepsy, I've had it for at least a year beforhand, just with a different type of seizures 🙃
Those months before I was diagnosed gave me extreme panic attacks and depression because I didn't know what was happening to my body and still had to carry on with daily life.
That one dude shouting out his boys at the end, so wholesome
Rock lee the handsome devil of konoha👼
Didn't expect him to give me a shout out. Been friends for 9 years now.
My former boss had narcolepsy, she educated me a lot on disability
I have severe narcolepsy, which I’ve struggled with since school years. I was always falling asleep during class, while studying, etc. Not only was I not diagnosed, my parents were always mad about it. I fell asleep all through college and graduate school classes and studying times. I never finished any of the readings. I didn’t get diagnosed until I was 44! Once I was driving, got sleepy and I nodded off and when I opened my eyes, thinking I had just closed my eyes for a few seconds, it was 45 minutes later past my exit, but I was still driving intact on the road. It completely freaked me out. I turned around and drove home wide awake and shook up. When I was diagnosed years later, the sleep doctor was unfazed, saying « Yes, that’s called automatic behavior. Your body was asleep while your brain was awake ». Living with narcolepsy has certainly made life interesting, especially my vivid « hypnagogic states » or when dream and wake states blur. I’ve tried many medications, some torturous like Xyrem requiring me to set an alarm to wake up at 3am to take a second dose. In the end I just stuck with a stimulant that made my brain feel less dazed and sleepy. I would take a cure in a heartbeat if it were available! I had a couple of good days when I first tried Xyrem and remember waking up feeling so well rested and feeling so positive (the fatigue puts you in a low grade depression I think), I thought, is this how normal people feel? Is this how it feels to get a good night’s rest? I had never felt that my entire life! Thank you for making this video, Anthony, and for your videos in general. It really made me reconnect with this part of my health again, reminding me of my struggles, and I appreciate your making more people aware of narcolepsy.
Oh man Xyrem. I remember feeling so well rested but after a month ish the depression hit me like a ton of bricks, and that was on top of my usual depressive disorder.
I kinda wanna see anthony spend a day with suicide survivors
Edit: I just realised this comment can come off as insensitive and I'll try to clearify what I mean, I'm honestly just very curious about what someone could be thinking or their whole experience with suicidal thoughts. It'll also bring more insight to other people who don't understand what being suicidal and attempting is like. In the end, I just kinda wanna know.
This language is unclear. Do you mean survivors of attempted suicide, or survivors of families where one or more people attempted/committed it?
There's SO many tho. He would have to host auditions.
@@breetoldyouso the first one
@Domi B I think there can be many different causes to suicide for example severe depression- many believe these people suffer from mental illness and their suicide attempts may not be a conscious decision so if they survived, they can be considered survivors.
TW: death and suicide attempt
My fiance, bless his soul, has described his suicide attempt to me before. Just the way he described it.. He had died with a BAC (blood alcohol concentration) level of near .5%. Which is lethal to pretty much anyone. He weighs about 130 lbs.. That much alcohol killed him. He had died and was resuscitated on the way to the hospital. It was a suicide attempt and he died for 6 minutes.... You know what his logic was for doing it? He wanted to know if there was an afterlife. By the grace of God, the way he describes it. There is one. People reportedly talk about seeing "white light" and dead family members when they die.. Some people see nothing at all. He got the ladder. He saw his dead family. Members of his family he's never met.. He can't even talk about the whole situation without bursting into tears. He can recall floating up from his body (like a soul leaving its host). My fiance is a very logical and straight forward kind of person, but he definitely believes in God since that happened. Definitely wasn't very religious before hand either. It's a very touchy subject that a lot of people don't like talking about and I don't blame them. It's hard to even fathom what they went through during those experiences.
Watching this video I realized all of my symptoms and experiences could be deeply rooted with narcolepsy. I used to just joke “hahaha yeah I probably have narcolepsy” as a passing joke talking about stories how I can fall asleep anywhere, doing anything. I haven’t been properly diagnosed yet but watching this video made me realize I probably should go see someone about this. Thank you ❤️
I said that so many times that people actually still don't think I am serious when I tell them about my diagnosis! Definitely look into it! :)
As someone with narcolepsy, this is the most accurate, informative video i've ever watched. I was diagnosed at 25 and once my dr. explained everything to me, I was like: oh, this makes a lot of sense. I'm not just clumsy, and I don't just get easily distracted, my brain is actually trying to shut me off. I remember being at the jewelry lab (I'm an industrial designer), and all of the sudden the place started smelling like burned hair, so that made me realize something wasn't ok. I had fallen asleep while welding a jewelry piece and I had no idea, so I burned my hair. That wasn't even the moment in which I realized I had to check if everything was okay. Pretty wild things happened later and that made me go see a neurologist.
Thank you so much for bringing awareness about this condition and for being so incredibly polite and professional.
I know it’s not, but that’s a sick pewdiepie sweater man
THAT WAS MY THOUGHTS EXACTLY 🤣
Pewdiepie x Padildo merch collab when?
As a narcoleptic person myself, I have been waiting for this video!
"let's name her snail" *coughs in Snail*
@Snail hey get back to work!! lol
I highly recommend spending a day with Maladaptive Daydreamers. It's really interesting and most importantly: VERY MISUNDERSTOOD.
I feel so bad omg- I can’t imagine being paralyzed when u sleep, completely out cold and still waking up exhausted
It sucks because I can sleep 16 hours straight and it’s just never enough.
Friendly reminder please don’t self diagnose yourself. Even if you have similar symptoms. They should be formally diagnosed by a professional.
Yes, pin this
Exactly! Sleep deprivation causes microsleep, and most people don't even realize they are sleep deprived! Pulling all-nighters, having too much caffeine and other sleep disorders (like sleep apnea) can cause sleep deprivation. Please see a doctor *if you can* !
thank you!
Sadly, Narcolepsy can cost thousands of dollars to diagnose. While self diagnosis is usually bad, sometimes you have to to a certain extent because you can't afford to get diagnosed, like with autism.
Cataplexy is almost exclusive to narcolepsy (though on rare occasions it can be a standalone condition) so having it is a major reason to ask for a sleep study.
Also, sleep doctors most often do not deal with narcolepsy and are very hesitant to diagnose and treat it. My first and second sleep doctors didn't understand it at all, so if you get diagnosed and still feel misunderstood, go find a new one.
I’m watching this instead of working, I think I made the right choice
I have narcolepsy. Throughout my life I’ve always had peers, educators, and employers tell me that I’m faking it. It’s tough out here for us sleepy folk. I felt really seen through this video
I love the way Janise explained her experience and I got chills when she told the story of not giving up on yourself
janise's speech at the end about fighting for yourself and getting the help/being treated the way you deserve was so powerful it almost brought me to tears
ME TOOOOO
When she said "yes! I'm not crazy" I wanted to laugh and cry at the same time. I can't imagine this being my reality
I never felt so seen before in my life!!! She said exactly what I said when I finally got my diagnosis 😭😭🤍
I love how he talks about every disorder or everything people are uncomfy to talk about
As someone with Narcolepsy with Cataplexy, this video is so greatly appreciated Anthony. Thank you for doing what you do, and bringing awareness to such a rare sleep disorder. 🥰
I remember watching this video around the time it came out, not relating to anyone in the video. I came back today, and I have been diagnosed with narcolepsy for less than a year now. The symptoms ramped up quickly in the past 3 years, I was confused, I didn’t think it was narcolepsy because of the way it gets portrayed in popular media. Even now, those around me don’t fully understand what I am going through. They try to give advice, not know what else to say, but when you’ve heard the same spiel about exercising, eating good, etc and knowing that no amount of doing that will make your brain regulate your sleep wake cycle the way it is supposed to is frustrating. I’m on the path to getting a medicine that will help me stay awake throughout the day, but my hope is that one day the medicine that targets the root of the problem is widely available and affordable for everyone that needs it.
My friend is being tested for narcolepsy soon and its great being able to hear what it can be like to help me better understand what shes been experiencing. Thanks for this.
Please let your friend know that she is not alone, and that there are resources and organizations out there to connect with others living with narcolepsy! Project Sleep, Wake Up Narcolepsy, and Narcolepsy Network are a few of the leading organizations in the US.
I have narcolepsy and its one of the most challenging things I've ever been through. People have said that they wish they had it but no, no you don't. It's awful. I've had family members tell me its all in my head that every young adult has this issue but no thats false, narcolepsy sucks and is more then just being sleepy.
Edit: just finished the video. I was also misdiagnosed with conversion disorder. AND I have an autoimmune disease lol. This is very informative 🤔 definitely a lot of pieces falling into place.
Wild coming back to this video now being tested for narcolepsy after being treated like a nuisance and rude for my symptoms for years
Can we just take a moment to say how cute Janise is! Her struggle to get properly diagnosed was so difficult and eye opening. As she said- We deserve to be heard and get proper treatment, respect and love. I learnt a lot as per usual!
when i have really bad episodes of depression i experience a lot of these symptoms. the people that have to go through that daily are so strong.
Having an invisible disorder is hard, especially when it’s sleeping disorder. I’ve had so many people brush me off as lazy or people trying to cure me. All that does is make me even more disheartened. People try too hard to help. Sometimes all we need is for someone to just stay for once. Even just to listen.
Honestly seeing all these stories and watching this video makes me feel less alone in this struggle. Thank you everyone for sharing and being open about it.❤
Also, thank you Anthony! ❤️
Anthony can you do an interview with *Coma Patients Recovery*
Would like to know their experiences thereafter and perception of Time.
One thing that interests me the most is: If a young child goes into a coma that lasts into adulthood. When they awake, were they still childlike? Were they able to mature relatively quickly?
He did already
yes, they are sometimes