I spent a day with CHRONIC PAIN SUFFERERS
I spent a day with people who experience CHRONIC PAIN to learn the truth about living with incessant, agonizing pain. Sponsors ▸betterhelp.com/padilla to get 10% off your first month!
🎙THE PODCAST (UNCENSORED)
Spotify ▸ open.spotify.com/show/5aOLuPe...
Apple ▸ podcasts.apple.com/us/podcast...
💥NEW YOUTOOZ FIGURE: youtooz.com/products/anthony-...
🧨HUGE thank you to:
▸ Kelsey - linktr.ee/kelseydarragh
▸ Zach - / tryguys & / korndiddy
▸ Ryan - instagram.com/neurogum/?hl=en & getneuro.com/
🗯MORE EPISODES…
▸ PTSD - • I spent a day with peo...
▸ TERMINAL ILLNESS - • I spent a day with peo...
▸ ADHD - • I spent a day with peo...
🎥Crew
▸ Creator, Director, Writer, etc. - Anthony Padilla
▸ Executive Producer - Alessandra Catanese
▸ Producer, Co-writer & Research - Elise Felber
▸ Director of Photography/Gaffer - Kathy Sue Holtorf
▸ Social Media Manager - Mallory Myers
▸ Editor - Mike Criscimagna AKA Mork Crispy
▸ Assistant Editor - Patrick Horba
▸ Assistant Editor - Ash Duckworth
▸ Sound Editor - Gareth Hird
▸ Post PA - Levi Villalpando
🎵Theme Music Composer - Matt Good AKA The King of Emo
🖼Portrait painted by: Rhianna Robles - / zerogattsu
🦥Slade mascot built by: The Pastel Prince - / @theepastelprince
📺3D animations by: Jacob Dalton - / jacobdaltonvfx
📢BE ON THE SHOW
▸ If you are part of an underrepresented subculture or live a lifestyle you feel is not widely understood and would like to be interviewed by me, email inquiry[at]pressalike.com with your subculture in the title of the email.
❗️You dug this deep into the description. You owe it to yourself to subscribe ▶ kzhead.info_cent... or get more at / anthonypadilla & / anthonypadilla
come back next week for *I spent a day with SURVIVORS OF HOSTAGE SITUATIONS* UNCENSORED ON SPOTIFY ▸ open.spotify.com/show/5aOLuPenneHbhLh05fmkeu UNCENSORED ON APPLE ▸ podcasts.apple.com/us/podcast/i-spent-a-day-with/id1550213250
Hello
alright
Okey dokey artichokey
Hiiiiii
thank you for the video anthony o(^_^o)
"if I'm not talking about it, I'm in pain. If I'm vocalising it, something is really going wrong" Damn that resonated so hard.
Yep. For me too.
Same
People really don't get it until you burn yourself or get hit by something or anything else people would cry in pain and you can just shrug it off because you are always in pain and you are used to it.
@@darkswarn Legit, the lady that does sports massage on me (cause let's be real anyone else is just too gentle), went for one recently and asked me how I'm not screaming when she works on the psoas and the glutes. I just shrugged.
YUP. I have chronic pain from an accident and it took me 5 years to get on medication for it because I kept thinking my debilitating pain wasn't "bad enough" to need medication. Despite being an 8/10 at least once a week. Finally accepting the medication route was me accepting that my pain is only going to get worse, and not better.
I love how Zach shout out is just: “listen to disabled people”
And then stares intently at the camera until his time runs out 😂
Not all heroes wear capes 🙌
@@LauraDora124 heroes :D
@@neverg0nnag1vey0uup edited, thank you 🤣
@@LauraDora124 no, thank you for not being angry at me for correcting you Np tho lol
As an 18 year old with chronic pain, the hardest part has been accepting the fact that I’ll never be pain free and I might have to take meds for the rest of my life. It’s almost been a year since I’ve been diagnosed and I still can’t stop feeling anger and disappointment that my body won’t work properly. Thank you for this video, I feel extremely validated.
I was 23 when I first started feeling what is now the chronic pain I deal with. Its normal to be frustrated or grieve the fact that you may not live the life you thought you were going to. But therapy can help you deal with those thoughts and emotions
same. Sorry to hear you deal with it. What condition do you have?
As a fellow pain sufferer I’m wishing you all the best.
There is definitely a grieving phase. It's hard to accept you don't have as much control anymore. It's completely normal. I'm sorry you're going through this. I have been sick since age ten. I can't say that it gets easier to accept as time goes on but it is easier to understand what you are capable of without overdoing it the more you've had something. I still hate having to rely on medication but some really helps. Make sure you have good support for your mental health because that is closely linked to chronic pain. I hope that things improve for you.
I’m 20 with chronic pain and I’ve had it since I was 15. It’s a long hard road.
i’m so glad you have younger disabled people with chronic pain speaking freely about their experiences. being diagnosed at 24 meant nobody believed that i’m in constant pain because i’m “too young”
exactly the same for me... i'm 27 and suffer from chronic back pain and cooonstantly get the 'oh but you're too young to have back issues!'... smh
Same my chronic pain started when I was 8 (that’s the youngest time I could remember it) and I didn’t get a diagnosis till 16 so 9 years possibly more. Anyways I’m 19 now and just starting to manage my chronic pain.
@@frozencoke1 now i’m 29 and still get that response but at least not as often as before. plus now i have more proof than ever…
@@MochiJelly4877 never to late to start and things can and will get better and easier 💖
@@aamberrosee mhm my mother has started to develop chronic pain and my mum (aka my auntie) has arthritis. Having chronic pain for pretty much all my life (it was noticeable to others when I was 8 but started earlier than that). Means that I can very much relate and they can have somebody to talk to about their pain. Something I wished I had when I was growing up, I did talk to them about my pain but I could tell they never quite got it. But I am very happy that I can at least talk them through this hard time. Even if I wished that they never had to go through this. My mother is at the stage of struggling to find a diagnosis. I’m going to go with her to her next appointment cause I know I hated not having someone to relate to.
“Proving I’m in pain” is an issue with my family. I can tell my sister that I suffer from migraines and that I messed up my knee when I was in high school and it instantly becomes “tired from what?” “You’re just lazy” and I felt like I shouldn’t vocalize any kind of pain or illness to anyone EVER. It gives me such anxiety to have to call out sick, I feel bad for leaving g them short staffed and I see myself as a diva :/
Same thing happened to me. I was always the "whiner" or "lazy". When in fact, I was dealing with PMDD and fibromyalgia and getting severely depressed and having panic attacks as a result of the painful and confusing symptoms.
MIGRAINES omg yes I’ve had them since I was 11 and people just say “oh you have a headache, just take Tylenol” “oh one of those days, yeah my head hurts sometimes too” No I have a migraines, all the time. Its debilitating. I work through them because I have to pay bills but if I just can’t get myself too with the extra bad ones they don’t believe me when I call in. It’s sucks. They’re not even considered a disability but migraines severely impact my life
It’s so hard but also what helps me is to understand that people can’t even imagine to be in pain ALL the time. Yes. Also as I smile.and make jokes.
But yeah, friends/family/loved ones who doubt you when they should be supporting you just wind up causing all kinds of NEW problems in addition to the ones you are already dealing with. It's heartbreaking. Those are the people you'd think you could trust to hear about your problems. That's why one of my best support systems is people like me. People who actually know what it feels like to hurt all the time. And I've found them here on the internet
@@BlinkinFirefly If you dont have support, join an online community. I visit the chronic pain subreddit. My arthritis isolated me, but its nice to have a community of supportive people going thru the same thing as you. It sucks when you're family cant relate and they assume youre lazy
“To get a diagnosis is so affirming” that is so true, often people think of diagnosis’s as bad things but in reality they’re the first step in managing pain. To have your pain validated when you suffer from an invisible illness (I do myself) means everything
So true! Even for me with "only" really painful period, I had to go to four different doctors to get somewhat a diagnosis (that my pain is probably caused by the shitty position of my uterus) but I still didn't get any useful treatment and had been living on birth control pills for almost 6 years now. The pain comes back even harder, if I dare to stop taking the pills
YES🙌🏼
I totally agree! that's what I'm striving for when it comes to my own chronic pain!
💯
Yes yes yes yes yes 👍
My sister started showing signs of rheumatoid arthritis, and didn't get it checked out for almost a year. There was a lot of 'oh, well I probably slept wrong', 'I wore that heavy backpack yesterday', 'I've been playing too many video games', denial. Eventually she went to the doctor after she realized she couldn't even brush her hair without being in extreme pain. After a year or two with basic treatment, a new rheumatologist asked her how much pain she was still in. She said "It is an acceptable baseline of suffering". The rheumatologist looked at her and said "the acceptable baseline of suffering is none. Let's try this new medication.". That was the first time anyone had really taken her pain seriously, even herself.
telling someone to just think their way through pain is like telling someone having an asthma attack to just breathe better.
It's sad to know that they are in constant pain. Sending much love to all of those who suffer from chronic pain 🖤
@Ramon Lopez Okay yet I’m 14 years old and I’ve had chronic pain my entire life that has messed up my entire childhood and teen years, I don’t even go out because of it while I watch other kids running around having fun, atleast 30 year olds don’t want too go too the park too swing on the playground unlike kids who have chronic pain.
@@venusthepenus exactly same
@Ramon Lopez then tell that to all my doctors and my chronic pain. i’m 15 and have chronic pain. stop looking at age factors and more genetic factors, and history/injury factors. most time age plays VERY little role in how things like these develop. it’s purely ignorant to say it’s just age. because its NOT.
@MamaWuf I edited it
Thanks man
“You don’t look sick.” I probably heard this a million times now. i hope you can do more of this people with invisible diseases. As someone who has one, I believe the reason why these are happening is because of the lack of information and awareness. Thank you Anthony for doing what you’re doing.
For real. I suffer from severe chronic tendinitis and I love having that equalized to “some tennis elbow”.
For real. I suffer from severe chronic tendinitis and I love having that equalized to “some tennis elbow”.
Couldn't agree with you more. Having amazing folk like this highlighting what is going on under the surface and remove the stigma is so desperately needed
mental illnesses included! I have one and the stereotypes around it is so inaccurate
I hope so too there are so many different illnesses that are touched by chronic pain but can be so much more, id like to see jessica kellgren fozard on or back on for a invidible illness episode as she says everything so clearly and can really help people understamd things
I literally nearly cried at the 'mourning your past self' section. For me it's a constant journey of processing all of the people I could have but now will never become. Thank you for sharing this message.
For real. That was a huge part of the process for me. Learning my new limitations and accepting that I probably would never be as good as I was again was hard but necessary. It took years but it made me more comfortable with myself
For real. That was a huge part of the process for me. Learning my new limitations and accepting that I probably would never be as good as I was again was hard but necessary. It took years but it made me more comfortable with myself
It's crazy. Took me 8 years to understand...but not totally accept...been through chronic pain since 2012. No-one else knows how horrible it is to not being able to do what you used to (and society wants of you) understands it as much as other chronic pain sufferers. ❤ Love.
Yes. I relate to this so much. Mourning the life I never got to have
i’m still learning that. the mourning process is so hard and i don’t think i’ll ever leave it
"It starts in the brain, but not that way!" I think ppl forget that the brain isn't just for thoughts, there are chemicals & neurons & such that can really mess you up. No matter how much you "think the pain away" its not going to happen. Hang in there guys. ♥
THANK YOU!!!! It’s like saying just think those crazy thoughts to someone who’s Schizophrenic!! The brain is so powerful like you said it full of chemicals & neurons. If that was the case not one person would suffer…🥺🙏🏽💜
My father has a chronic headache. He always discribes it as a tight rope being around his head. He has days where he can barely get out of bed because of the pain. Thank you Anthony for spreading awareness. Not many people realize chronic pain is actually a thing.
that's called a tension headache I'm pretty sure
@@TheTrueForbidden its chronic so it is chronic pain and its a lot worse than your average tension headache.
@@bigboy-gw8me I never said it wasn't bad, I was just pointing out what it might be called
Has he tried remedial massage/needles? My neck dislocates often and leaves me with 2 day long migraine. I go to remedial massage regularly and have these needles put in my neck, it's held off the migrains so far but I still have to be careful
I have chornic migraines.. and theres times where i think that im being shot.. its horrible. Its not as bad as when i was a kid. But everyday is horrible. So bless your father for going through something so tough..i cant handle mines
Ive heard about kelseys and zach’s stories about chronic pain many times and i am very glad theyve been chosen for this interview :] hearing their pov with a more in-depth conversation is really insightful and informative
Same!!!
i’ve heard Zachs but not kelsey’s
Same, I think people in general keep on forgetting that Zach have a condition that forces him to in constant pain.
@@gumicherryblossom8015yes! People are often so rude about his participation in physical activity saying "he didn't even try" and stuff as if he isn't probably in unbearable pain. People often conveniently forget about chronic illness and other very valid limitations in this regard.
Love the profile hereheheh
Literally just today I had a specialist tell me that my pain is 'normal' yet I am confined to a bed, a dark room, and so exhausted I sleep 20 hours. People REALLY need to listen to disabled people, their pain is real and dismissing it only results in more pain
Yay AMPS buddy! It sucks, and though it is fading for me, after a month of intensive in hospital pt and ot last Christmas, it still takes maintenance and is super draining. A bunch of other side conditions also are impacting me pretty severely, and it sucks feeling guilty for being a burden even when it’s something you really never got a say in. Hope you are doing ok, with some bright moments to help you along the way!
Doctors just DON'T care, it's insane, it's especially hard when you're poor and your insurance gives NOTHING for even temporary help. If you don't know what you have, you just have to search online. Having an issue like this really makes you despise the HC system, atleast here in the US. So my mom, the one who deals with this, not me, has vouched to never even go unless absolutely dire, and as said, let it pass.
this is so so sad to hear... as a current medical student i can tell you there are HC professionals (and newcomers) who want to listen to all the concerns of patients, esp those concerns that are not heard. i know that's a top priority for me! i totally understand that for many, all you have experienced is HC pros who dismiss you and it's tiring to advocate for yourself. keep switching doctors until you find one who will pay attention to you and don't give up hope! we are out there :)
@@zarahshabs7936 My family has been constantly switching and even tried many out of town for it 😩 After I sent that comment had a situation of one who didn't even provide wheelchairs for people that can't walk around a huge department - and the main issue, he got mean to us and put us down for being patients like what even!? It just has been a topic for us that we can't escape and could just complain about tons lol. But anyways, thanks for your work! It's just been our experiences and of course goodluck to well, people who do good simply.
me to btw using my sisters acount
same here
I live in a privileged family so paying for private doctor consultations isn’t a big deal for my parents, yet still the treatment I have received from doctors was extremely dismissive.
Thank you for making this episode, Anthony! My mom suffers from so many chronic pains, and illnesses that she's practically a case study. Just a few things to name off that she has been diagnosed with are that she has Lyme Disease (assumed she got it from an infected cow's milk when she was a child in Guatemala), bone spurs in her ankles, arthritis in her hips, bulging discs in her back, trigeminal neuralgia, and fibromyalgia. She's diagnosed with a new chronic pain almost every year. So many doctors have told her "you don't look sick" and it pisses my father and I off when they say that. My mom started to become depressed because so many doctors were telling her nothing was wrong with her. Finally a doctor started giving her proper diagnosis after a decade of searching for doctors that would listen. Even with all these pains, she still powers through it. She tries to exercise and cleans her house while my dad works. She doesn't work because my father and I don't want her hurting herself for a company that won't give a shit about her.
Holy crap… your mom is so strong. The fact that’s she can even walk sounds painful. Your mom is amazing
Your mom sounds like an incredibly strong woman! (now go tell her I said that lol)
Wait a minute, ahh ik you when I use to watch RWBY.
Your mom is simply amazing, as are you and your dad for giving her the support to soar. I have many chronic illnesses, some of them are physical, along with invisible illness, which is nausea 24/7. It is depressing not feeling whole, sometimes feeling I can’t contribute to society, yet alone my family. But with the help of loved ones, we all keep trying. What a blessing it is to have a Dr. Listen and treat her. God bless her, you, your family. Keep going! You example is beautiful example of true strength!
your mom sounds amazing
From someone who suffers a lot with chronic pain, it’s so relieving to see others finally talk about it. I’m very young and I’ve been suffering with it since I was 8 and now I’m turning 18 very soon. It’s nice to know that other people know what it’s like and that others struggle the same way . Thank you for bringing light to this and helping others understand what we go through
Omg hey simlar storys
I’m also a chronic pain sufferer, started when I was 10, and I’m turning 19 in just a few days. I don’t remember my life before pain and that’s so sad.
The same thing with me I am turning 18 this month, I fought my doctors for a diagnosis, but I still feel as though I am not diagnosed with the right thing. It is nice to see successful people further along in their healing journey. I hope one day I can get there too.
You couldn’t have said it any better for us alike.
I don’t suffer from chronic pain, but I thank you guys for sharing what it’s like. I am in scouts so being able to relate to others is very important. So you guys sharing means a lot, and I hope you guys can push through! Good luck!
Normally seeing Zach in try guys videos, and how happy and joking he usually is on there, and then the idea of him literally screaming at a doctor really goes to show how little his doctor was listening. And how much pain he truly deals with.
I have endometriosis, it’s a chronic illness, degenerative and has no cure. I’ve always got a baseline of pain just as Zach described. When I’m having a bad flare up, which can happen anywhere at anytime, even tho I take hormonal therapy every day (which has messed with my mental health severely) I look like I’m pregnant, can’t stand, feel nauseous and often throw up. If happened on a bus once, and I sat on the disabled seat as there were no other seats. I’m a teenager, I look “healthy”. But it was either sit there or sit on the floor, mind you there was no one else who got on the bus for the rest of my trip. This has happened a few times and almost every time someone will feel the need to tell me I’m doing something wrong for sitting when I physically cannot stand. 1/5 people are disabled, and 3/5 disabled people have an invisible disability or illness. Never question someone’s struggles just because of what you can see, particularly when it’s a stranger you know nothing about. I’ve also been told just to take ibuprofen, I had to fight for a diagnosis, I asked for help about having severe pain during sex and a male doctor told me to have some wine and just bare it because it’s supposed to be better for the man. I’ve doctors refuse to believe my condition could be as bad as I experience because I’m young, even though every woman in my family has it, and many of them have even had hysterectomies (removal of female reproductive organs) to get rid of their pain. My pain is real, it affects my life every day, I now have severe anxiety surrounding medical professionals because of how hard I had ro fight for my own body and pain to be taken seriously
I have endometriosis as well and the bus story resonated so hard! I've had so many side eyes when sitting down even though there were older people around etc. but my was so bad I would have fallen to the floor if I didn't sit. Although, nothing beats my anger over being told repeatedly in middle school that "pain on period is normal" while I was literally throwing up from pain every month in the nurse's office. I was only diagnosed after almost dying from an ovarian cyst in hs. I hadn't slept in a week from the pain and was literally contemplating doing a home surgery on myself in the middle of the night because it seemed like a self-administered surgery in my kitchen was the only thing that would make my pain better. I wish you the best of luck. I also do recommend looking into IUDs. They're not perfect but they changed my life because the pill was making me hella suicidal and the pain is much better than it ever was on the pill.
I have something called generalized vulvodynia and it's similar. Burning pain during sex and sometimes just burning pain for the hell of it. It's thought to be nerve related but doctors aren't really sure why I have pain. I just do and it sucks
I understand your pain and am so sorry.
@@pokelover02 I know I saw that!! So amazing to hear people talking about that in endo awareness month 💛💛
I have it as well and I can’t begin to explain how much your story just hit home with me. You are not alone ❤️❤️
YES THANK YOU ANTHONY! -Someone who suffers from chronic pain
Truly a great moment for all those who have chronic pain. I have chronic pain too.
I’m buzzing rn too see that chronic pain is being taken seriously, all the doctors and people around me have ever done is palm me off, so I’m really happy too see the awareness of it be brought too light
@@benanstey7188 Honestly! I was crying the entire time watching this! Those of us who have chronic pain are strong! much love to the rest of you!
I also have chronic pain and I have had it since I was 14 years old. It feels so good to see ahd hear other people that have chronic pain.
ITS AMAZING TO SEE OTHERS WITH CHRONIC PAIN!!!! sometimes I feel rlly isolated n seeing ACTUAL PEOPLE who have chronic pain talking about similar experiences made my day!!!!! :^)
Man I couldn't imagine going through such intense and unbearable pain for such a long period of time, while remaining as positive and chipper as the guests who appeared on the interview- that takes a immense amount of a different kind of strength When Anthony asked about pain becoming apart of identity, I thought back to my grandma who was in a really bad accident when I was younger, and her pain kind of consumed her and turned her into an irritable and angry person. Although she passed away two years ago, I think that she's finally free from the pain and able to be back to the person she was beforehand.
You get used to faking it. When I was really little, I didn't know I had ADHD and masked that, then I started having multiple chronic symptoms (some were food intolerances, other hypermobility, still in the decade long process of getting diagnosed), and I was forced to hide that as well, even as things got worse. Eventually when I was around 19, it came to a point where I couldn't deal with stuff and had bad meltdowns. Now, usually when I do go out in public, or go to social events, I have to spend time before and after taking extra care of myself, so I can be at my best when I'm around people, then stay in my bed with a heat pack for the next day. So you don't see people at their worst, regardless of what they're dealing with, unless you live with them. My mom has MS and the two of us often struggle and find it hard to function if we're both having bad days.
I live in chronic pain and I have been for almost four years, I'm still a teenager. It eats my soul, slowly but surely. the pain is constant 24/7 which sucks.
Wow. These replies. It’s honestly really interesting to see everyones experiences. Really.
I've had chronic pain for almost 9 years now and personally I think having a positive attitude and mindset helps not only the pain but life in general. Medical professionals have just been pulling me around in circles instead of helping but they can't take away or toy with my positivity and happiness
@@TheDeviIDogg I really like the way you think
I'm 19, and the most frustrating thing is explaining that I'm in pain. Some days I can't walk, other days I just am hurting. As soon as I could talk, I was complaining about my back and hips. I'm going to the doctor for the first time in years this week. I've always been pushed to the side, so I'm really nervous I'll be ignored.
Good luck!! It’s so scary especially when you’ve had doctors who won’t listen. I hope you can get a diagnosis and the support you need.
❤️
Good luck! It really sucks when doctors don't take a patient seriously like, that's what you're a doctor for?!! Hopefully everything went well!
@@wallflower7278 thanks, it didn't go as well as I'd hoped. Maybe I should find a different doctor some day T-T
@@needtoread_2382 yes. I really hope u meet a doctor that will give u a straight answer. It will b frustrating but I hope u get there soon. Good luck w it and I hope u do wtv u can atm to feel better Xx
“To get diagnosed is so affirming” this hit me so hard, it took me 5 years to get diagnosed.
I was born with chronic pain. 18 years. still not diagnosed. No end in sight.
@@reidleblanc3140 I come back 10 months later realizing I mightve been misdiagnosed for convenience Its so difficult to get help at least here in the US it is I hope you are doing better and if you arent Im sorry and wish you the best as a fellow chronic pain haver 💕
7 years and counting - and that's just for the ovarian issues :/ if we're including the potential Ehlers Danlos Syndrome, we're looking at a lifetime of 21 years
11 years of searching here, but dealing with it for basically my entire life. Still no answer. You are not alone 💕
Yes! Not chronic pain, but I got diagnosed with bipolar disorder in 2019, my life changed for the best after that, before everything was so confusing, I lost so many relationships, money, I was made fun of. I am so glad that I’ve been receiving therapy and medical treatment, my mom calls my psychiatrist an angel on earth because she returned her daughter to her
The timing of this was incredible. I was finally diagnosed with Ehlers Danlos Syndrome a week ago today, after years and years of being written off and dismissed by medical professionals. It’s so important to raise awareness and understanding of chronic pain.
Congratulations on your diagnosis!!!!! I'm currently in that process, so i know just how hard it can be to get a proper diagnosis :)
I also have hEDS and I really really hope that you push through it. There are plenty of resources that can help you out too !
I have hEDS, and finally getting that diagnosis was incredibly validating. I hope you can find a treatment plan that helps you 💕
So happy you were able to figure out what's happening! I have a specialist appt next month due to hypermobility and joint pain and pots-like symptoms so I'm curious if I'll end up in a similar boat! This video came at such a perfect time
Welcome fellow zebra!! I am so glad you got your answer!!
Update: His shout out to listen to disabled people…yes!! Wow, as a disabled person myself, I just want to thank Zach for giving me the verbiage of “your body is spending energy in ways that you can’t see, and there’s just nothing left for up here”. Really resonated with me. There are many days where I struggle to “make myself” do even the most basic tasks because I’m exhausted.
I know those feels all too well and my heart goes out to you and everyone who deals with that
I struggle so much with this too. Today I are breakfast, made 2 of 3 needed calls, and took my pills. Might not seem like much to others, but this was huge for me.
@@JuJuBird *hugs* I know how this feels so much. Some days, we only have like three spoons, and that's it. On days where I have so few spoons, I try to remind myself to be gentle to myself, and be proud of the small accomplishments. Even getting out of bed can be an accomplishment to us chronic pain sufferers
I have nerve damage in my spine and arm. This was incredibly relatable and emotional to watch.
I have one of the conditions in this video. Its hard to talk about the pain and its hard to listen about other's pain because its super emotional.
As someone with EDS, I appreciate that this episode has started conversations about chronic pain. However, I feel like we've heard Kelsey and Zach's stories before because they already have such huge following and platform. As much as I like them both as people and have followed them for several years, I feel like it would have been better to use this opportunity to hear from lesser known content creators or (ideally) people who aren't content creators at all because the lifestyle that they live isn't at all the same as your average person with chronic pain. We don't all have the same access to the different kinds of pain relief mentioned in the video, for example, and flare up or not, we still have to do the usual morning commute to work etc.
Or we live alone and have no support from others
Yeah this honestly. I am happy for them both but they seem to be very lucky in their situation compared to the average person suffering with chronic pain. I want to see someone who has to manage a job or school and maybe even kids as well to talk about how they manage it. Personally I am working part time in retail and still had to ask for less hours because I am just so fatgiued and burnt out after dealing with the pain from when I do work. It's too fast paced and physically demanding, and I am struggling to get a job outside of retail and food.
These people can work. Where are the people truly crippled by chronic pain, living in a constant state of wanting life to end.
I have EDS H type (& 2 other chronic issues), if anyone else here does I’d love to chat with others❤
I have the vascular type of EDS I have yet to see any content creators with it..
I broke down crying listening to this. I’m eating my dinner in the dark away from my family with a ton of past due homework because I’m in constant pain (chronic migraines and fatigue). It doesn’t sound like a big deal but it dramatically lowers my quality of life. I’ve been dealing with this for the past 5 years (I’m a teenager now). I’ve visited countless doctors, have had countless tests, I’m still not diagnosed. They thought it was my diet, my exercise, my vitamin D, my sleep, my hydration, my breathing, fluid on my brain, my teeth, my voice, allergies, or simply just made up in my head. I’ve missed out on so many opportunities or haven’t reached my fullest potential because I physically cannot. I joined water polo only to miss a quarter of our games and practices (and wishing I missed more *due to my pain during and afterwards). I never finish my homework because I never feel physically well enough. I struggle to focus in class and my participation grades are awful. I feel like I burden everybody anytime I say I don’t feel well, or that I am overreacting. As a young person, it’s hard enough to keep your mental health intact without having something test your pain threshold every single day.
Wait you say you joined a water polo team and then said you wish you could miss more practices, so why are you even on it? Why aren't you just quitting?
@@Thenoobestgirl I realize I worded that a little confusingly. I meant that I felt so bad physically afterwards, or performed so badly due to my pain, that I wish I had taken that day off. I genuinely enjoyed being on the team and the sport though. Sorry for the miscommunication!
Please consider listening to a podcast that drastically shifted my perception of my pain: “Ologies” episode- “Dolorology (PAIN) with Rachael Zoffness” Nov 10, 2021
Have you ever had an upright MRI? I started having chronic migraines when I was really young and it turned out that I had a Chiari malformation. It’s positional, so it’s more noticeable when you’re vertical, can worsen with physical activity, and hurts less when laying down. I got my first migraine when I was 9, started daily meds when I was 15, and they turned chronic daily by the time I was 20. Also if you haven’t seen a neurologist (ideally a pediatric neurologist), you should. Frequent migraines in anyone under 18 isn’t normal. You owe it to yourself to see someone who knows what they’re doing and can do their best to help you through this.
I just want to say that I hear your pain and I'm so sorry. I know I cannot help you much through words on the internet. But I have chronic illnesses myself and I feel you when it comes to feeling like you have lost so much of your life. Especially seeing others your age being able to do things you need to gather all your strength to do breaks my heart. I don't know if you have thoughts of ending it all like I do sometimes but I'll say this: Please hold on on the days when you feel like there is nothing worth living for. Because you are strong and there will be a moment when you can say that it as worth staying here for.
I've struggled with Chronic pain for about 6 years now and when the notification for this popped up I started to tear up. People often dont seem to understand or even want to try to understand what chronic pain is like. And with how respectfull Anthony is during all these interviews makes me very excited to watch this
fair fair
Sinch this comment is getting traction I'm gonna post this here in hopes of helping more people: Try CBD!!!!! It literally gave me my life back and took it from unbearable to 'wow I can actually do things sometimes!' It also help with the anxiety, depression, sleep issues and more symptoms that may come with your illness. Do it! (and if you try it and it works find a good reliable supplier on Alibaba and buy this shit in bulk! I bought 150 grams a few months ago and it saved me literal hundreds if not thousands of dollars, and I'm not even halfway through my batch despite giving it to my horse as well lol)
I got close to tears as well. I've been in chronic pain since i was 17 (Ehlers Danlos Syndrome) its heartwarming to see other people spreading awareness. They way Anthony even knew what questions to ask, like the identity becoming pain. And mourning the life they had
@@Thenoobestgirl yeah cbd is amazing I have constant headaches and my hand has a pins and needles 24/7 but cbd nums both really well and helps me sleep
@@lilmeowmeow6784 a fellow spoonie!
I totally relate to this. I was recently diagnosed with fibromyalgia because my doctor couldn’t figure out what I had. I had constant pain in my legs. Clothing was painful, just wearing a bra felt like I was wearing a back pack full of bricks. I couldn’t later clothing for winter. I was constantly dizzy and fighting migraines. It was just getting worse and worse. I couldn’t walk. I felt best laying down. One day it was so bad that I couldn’t get out of bed in the morning. My dad and his gf took me to the hospital. Turned out I had hypothyroidism and adrenal insufficiency. Your thyroid is supposed to be between .5-5.0. Mine was 24.60. But the real issue was the adrenal insufficiency. My blood pressure was 60/40 when I got into the hospital. Which is close to death. The reason I felt better laying down is because it was making it easier for my blood to get to my important organs. The doc asked me at one point it I wanted to be resuscitated if needed. I had to actually think about it because of the pain. In the car to the hospital I thought I was dying, I didn’t think I would make it. And I was thinking about who would take care of my dogs, who would get which items of mine etc. happy to say the meds are helping and I’m on the mend. Today was my first day leaving the house since getting sick and going out to do something. It felt amazing!
I have fibromyalgia as well, I’m proud of you :)
Gentle hugs….I also have that. I was diagnosed when I was 21yrs old. I am now 45yrs old.
I’m really so happy for you, that’s amazing ♥️
Many women in my family have it, and the way family politics spun it into a gendered lazy performance is terrible. It is no joke, and not these women are not faking it to get out of things ugh One thing that wasnt said in the video is that pain is not linear. I myself have permanent nerve damage in my arm, and some days I cannot write more than my signature on a receipt, other days I can type for hours (college student), and so I have to plan my study schedule far in advance to accommodate for a flare up, and then contact any labs or exams coming up for accommodations. My school does accommodate me, but the stigma is still there and when a professor will not comply, I have to get the access center to put some heat on them! It shouldnt be that way, but at least my school now recognizes my chronic pain.
as someone who suffers from chronic migraines this was such a nice video. My pain has always been ignored, yet i’m in pain most days. “it’s just a headache”, but i can’t even move when i have an attack. i wish chronic migraines were more recognised as the disability they are
Omg I have chronic migraines too!! Yess I totally agree, hope he makes a video about it:)
I have fairly frequent migraines and I grew up believing they were headaches "with symptoms" until my doctor told me I was experiencing migraines.
Me too..it moved me to tears. It feels like no one sees what we go through until something like this comes along.
Yes!!!
Godbless you and may all of us get through this and tough times, we are strong and survivors and whether or not we are strong 🙏🏼❤️❤️❤️❤️❤️
I almost want to send this to every person who has told me, 'Your pain can't be that bad?' or 'Are you sure your diet, exercise...can't you try MORE to cure yourself?' and say, fuck you. Because chronic pain is literally what it says on the tin, it is constant, chronic pain and it is a pain you cannot describe. Fireworks, hot needles being pierced into your skin, electric shocks...and even now we are called liars, told we look healthy and we can't possibly have so much pain if we are young (I was diagnosed at 21 and told hey, just take ibruprofen because you are too young to be ill). For all my fellow chronic pain sufferers, I hope today is a good day, and there are people out there who will believe you, who will help you, and videos like this one is a step in the right direction for us being seen and heard.
this ^
You’re so right. I had ONE doctor that treated me with appropriate medications to try and relieve my pain. I have MS, and a myriad of other conditions, and the stigma that comes with chronic pain is so gross.
thank you ♥️
It's also hard when you develop an immunity to those medications, too. I've been given different pain killers and steroids for most of my life, and they all ended up in the same way: I became immune to the dosage and they have to push it up, or they did more harm than help. That's a big reason why I have gastritis. Those medications have torn up my stomach to the point where I can barely eat without some pain. Sometimes Ibuprofen, Tylenol, some steroids, etc. is not good for you, if you have to take them constantly, and are given those as the only answer someone can give you.
@@c.h.carnahan8799 This comment is 100% spot on, with the conditions I have I was told I could have major reactions to different medications, and my doctor hit a point of going, so what do I put you on? Because it's going to be a risk and you could have bad side effects, which guess what, happened. Ibruprofen being recommended for day in, day out pain sucks, and I remember having inflammation of my ribcage and the doctor said, oh i see you have this condition? Oh yeah, I heard the pain suuuucks. I laugh cried at her, because she had no idea, and all I was told to do was down some ibruprofen and suck it up!
Zach saying "I'm the strongest person I know" honestly hit my heart and soul. I have Ehlers-Danlos Syndrome, among many other things aka, I got hella chronic pain. And I've said the same thing about myself for years. Chronic pain suffers are SO fucking strong we have to be or else our situation would be even more crippling than it already is and I just wanna say, good job to all of us, proud of u guys
I have EDS hypermobility and a bunch of spinal issues…you’re not alone!
Also hypermobile (no EDS but still colagen deficient)- it sucks but we are so much more!!!! Proud of y'all!
In no way am I trying to undermine this type of chronic pain, because all chronic pain is terrible and soul-sucking. It really is terrible everyday and the more you think about it, the more you become aware of it. And there is a lot of comparison to pre-ill you. But I wish there was a video for non-injury related pain. Something like fibromyalgia or migraines is different than nerve damage from a fall, and it's a similar but different story of getting treated and diagnosed by a doctor. There's a lot more trying to prove the pain, prove how serious it is- and we're often written off as drug seeking when many would prefer to be drug free while pursuing pain relief. Hell, just being diagnosed and taken seriously would be a vast improvement for chronic pain sufferers everywhere. Anyway, the point of this is to say I'd love to see a part 2, where maybe there's a dialogue for "natural" or psychosomatic chronic pain.
As someone who suffers from fibromyalgia: yes PLEASE.
yes i would love to see a video showing other types of chronic pain! I have chronic migraines and kyphosis (spine related) and neither are due to injury even my parents try to undermine the pretty much daily struggle I have and rn doctors have only told me to take ibuprofen or excedrin for the migraines, for the kyphosis I was told to take physical therapy but my parents refuse to pay for it
Agree. I’m in year 50 of fibromyalgia. For me not too bad first 28 years. Raised 6 great kids with many work and school related moves. My pain became debilitating to the point of wanting death. Several compassionate drs. tried but couldn’t help. Chronic fatigue hit around this period as well. I was referred to a pain clinic. Put on 15 mg. Morphine sulfate twice daily. I stayed on that dose for 16 years and 6 more moves. Kaiser took it away and I have suffering beyond belief! Trying to not suicide! Pure hell. Drs. only answer has been “ I’m sorry, but there’s nothing we can do “. And, You DO know that Euthanasia is legal in California, don’t you?” Politicians have come between patients and the doctors. Wrong. Sad and cruel. I’m in my ‘70’s and was able to raise my family and support my husband in his career until I was about 65. I had a lot of pain but I could function. Countless younger people also suffer with severe chronic pain and like me, have lost all hope. I can die but imagine the fear of believing that your endless suffering could last 30, 40 or more years!! So many have and will suicide.
Fibromyalgia here 👋 I’m 22 and have been diagnosed with a severe case of fibromyalgia. I have to take lots of meds to even function day to day. I’m on 7 pills daily just for my fibromyalgia. It’s so frustrating having a chronic illness that people can’t see because they don’t understand just how much you’re struggling. Some days in the grocery store I really need the motorized scooters, but when I used them one time I got nasty looks like I shouldn’t be using it. Looking young and healthy when you’re really suffering works against you sometimes. I don’t use the scooters. I have to park close to the entrance to stores because of my pain and fatigue but if I get a handicapped tag for my car, people will give me nasty looks for parking there. Having an invisible illness sucks because you can be in horrible pain and no one will believe you. Some days my legs buckle because they’re so weak, my hair is falling out, and I feel like fainting doing normal daily tasks. I’m so tired of feeling this way and I’m only 22. I don’t even want to think about the years ahead.
@@draculaissus6120have you tried Aimovig for chronic migraines??? Changed my life! I went from having 20+ migraine days a month to 5
This hits me so hard. My mom has had Rheumatoid Arthritis since before I was born which is a terminal disorder that causes inflammation and can attack any part of the body. She has lived in pain for the majority of her life and she is honest with us. She said there are times that she was in so much pain that if someone gave her a bottle of poison and they told her it'd make the pain stop she'd take it instantly. But she has continued to fight and even though her condition will never improve she never gives up. Even today where her RA is attacking her eyes, she's doing everything she can to be a great mom and grandma to my daughter and niece.
RA is awful. Sending love to you and your mum
terminal? dont you mean incurable?
@ninakoch1799 The term “terminal” usually refers to a progressive disease that is incurable, irreversible, and does not respond to treatment. A terminal illness is an illness or condition that can not be cured and is likely to lead to someone's death. While her RA won't kill her within a year like many see terminal conditions like cancers. it is severe enough to have deteriorated nearly every joint in her body as well as been the cause of all her pain/issues. The condition itself or complications from her deterioration will be what ends her life. These are the terms her team of Dr's have used, so it is what I use as well.
my chronic pain has left me housebound, unable to attend school and in a wheelchair, i really appreciate awareness about it so people know that it’s not just a bit of aches and pains
Do you have a dx? Are you getting actual pain mgmt (nerve blocks, meds, etc) or are you getting that "you're too young" crap?
@@Anonymous-54545 i’ve been through several hospitals and doctors and now i’m at a new pain management service, the problem is they don’t really take a medication approach and it’s honestly really unclear what they’re gonna do with me. I don’t have high hopes for them. i would love to try the things you mentioned but my opinion goes in one ear and out the other for everyone
@@Anonymous-54545 i am however on pain meds prescribed by one of my other hospitals
I don't have chronic pain, thankfully, but I can't move around for more than 10 min without getting severe back pain and have to couch it again. With you being wheelchair bound you probably can't walk either. So take care!
I remember in high school, the place I went to was all one level, so a few students who needed mobility aids went there for that reason. I was still managing okay at that time, but now I need to wear compression garments (mostly socks and gloves), and often other special clothes to get around without things going tingly or me getting too dizzy. It's not easy, but with proper support, can be done. I've seen a lot of advisors and counsellors to get through university, as well as switching to part time, and online when possible. Dealing with the bus in the winter is hazardous for my health, because if I slip and dislocate something, then bam, pinched nerve and I can't get up. I frequently have a pinched nerve down my left arm due to my neck bones getting stuck out of place if I turn my head too fast. It's painful, and going to physio once a week to fix it isn't sustainable. So I try to play it safe, and just deal with the average level of nerve pain at home.
I suffer from fibromyalgia, it’s very emotional to finally see some media recognition of invisible disabilities. I came here as a previous fan of both Zach and Kelsey and they’re both but especially Zach have been huge for me , the only thing I wish is that we ever touched on how much being poor like the majority of people are myself included are affected, these treatments listed all cost a lot of money and they have the privilege of being able to try them and see what works, people like me just have to live with it and get dependent on potentially dangerous drugs to deal with it or just be completely useless at least in my case. That said I still absolutely adore them , thank you for acknowledging us because it feels very isolating when it seems like nobody realizes what we go through is real and we’re not exaggerating to get out of doing shit. I love that Zach didn’t even say anything about the try guys lmao I love that dude.
Ive got fibro too!! its so nice to get some publicity :>
I found out this week that I have fibromyalgia, but I've been dealing with chronical pain over 10 years. I felt your comment in my bones (pun intended) 🥰🖤
I also have Fibromyalgia was so excited to see this video in my sub box!
@@TiaEliz same
I just realized I chose poor wording for part of this, I didn’t mean previous fan of the two like I’m not anymore I just meant that I previously already knew who they were 🙈
Her saying if she's not talking about it, she's in pain but vocalizing means something is wrong resonates deeply with me. I have stage 4 endometriosis and possibly fibromyalgia on top of it and I tend to not say anything unless I literally feel like I am going to die. I feel like a lot of people get fatigue when it comes to listening to my pain and symptoms. They can escape it, I can't. I got a divorce from my husband this last year because he said I was "always in pain" and "I talk about endo too much" and "I am overreacting and it isn't as bad as I make it out to be". He also told me my endo is a huge inconvenience on him, and that my all over joint pain isn't real. I wish there was more education on how chronic pain affects us and our mental health, and relationships. I have a hard time trusting new people and letting people in because most people don't understand, or don't care to understand.
I've been living with a stomach illness all my life. My first GI doctor (male) referred me to a therapist for anxiety. After 4 years of intense psychiatric treatment, the doctors believed me. I had been living in pain for years and I mean I still live in constant nausea. I found a lovely GI doctor (female) who not only diagnosed me after about three test, but also emotionally supported me through an ED and medical trauma. Although the OG doctor did save my life by recommending me for therapy, he also dismissed me and made me feel like just another anxious female. I'm now diagnosed with gastroparesis, gastroesophical reflux disease, functional dysphasia, and generalized abdominal pain. I also have nerve damage in my bladder ( I have little sensation) and other organs due to an infection. Sexism and misdiagnosis of female born people is real. female born people are 4x more likely to have gastro intestinal problems but male born people are 4x more likely to be diagnosed. Female born people are dismissed due to our reproductive systems and emotions and it caused me to live 17 years without proper treatment. Listen to disabled and chronically ill people
This!!!
I really liked when Ryan said something like “if you put a frog in hot water it will jump out right away, but if you put it in regular water, and slowly make it hotter, they’ll just burn and not realize, that’s me.” Idk it just felt deep.
I think Zach said that, not Ryan. But yes, I love that analogy!
It was Zach
Zach saying "You are your own responsibility" resonated what my mom said when I was diagnosed with MS, "You are your own advocate." While I do have a chronic illness, I am lucky enough to not be in constant pain. My heart goes out to the people in this video and all others who are having to fight everyday to not be in pain.
My mom has MS. I'm not sure what my nerve pain is caused by as my MRIs were fine, but I definitely have pain, both nerve pain and joint pain. Between the two of us, it's not easy, but we manage and help each other out. I do hope I can move out on my own, but thinking of all the stuff I'd need, and the kind of house layout I could manage isn't the easiest, especially in a housing shortage. Allergies mean I can't live in apartments as even a duplex is bad enough to get everyone's laundry smells in my house. My mom and I both have good and bad days, and we've found some ways to manage (with scheduling time off, using things that help like compression garments and allergy masks, as well as dietary needs), but on the bad days, it's bad, and I've had to advocate for myself and my needs so many times throughout my education. 24, and finally in my last semester of my degree.
Just a quick one to say you're not alone. Fellow MS'er here. I know MS is riddled with various issues but I'm glad for you that chronic pain isn't one of them 🧡
It's very difficult for some people to advocate for themselves however such as those with autism or people who have social anxiety etc
I have fibromyalgia, Ehler's Danlos syndrome, and permanently injured hands, so I relate to this a lot. One of the main theories behind the intense fatigue fibromyalgia causes is that our bodies become physically exhausted processing pain signals all day.
How did you get diagnosed? I’m scared of doctors and have bad health anxiety and panic attacks, I’m even scared to tell a doctor about my pains but I’m hurting everywhere… back, arms, legs, neck, both side of chests… it’s awful and I have no idea why
Would be great to do one when you spend a day with someone with Ehlers-Danlos Syndrome (EDS) a group of underrecognised genetic connective tissue disorders. Often we are predisposed to ALL of these at once. So life is a super painful existence. It's often not diagnosed til later in life when these kinds of pains are irreversible. Most patients my age have chronic and acute pains from head to toe. It's never a competition, and everyone's reality and pain is their own, but we are so under-recognised (and it's much more common than most health professionals realise) that many people do not believe us when we describe our disorder, the multiple daily dislocations, the chronic fatigue, the dysautonomia, the gastrointestinal issues, the isolation and our pain.
You should do "I spent a day with people who have fibromyalgia". Both my best friend and I suffer major fibromyalgia (another form of chronic pain/fatigue) and it is LIFE altering. From fibro fog, deep body aches, and the inability to do simple things like driving and cooking and even showering.
@Ylva I mostly have chronic fatigue and migraines in top of a bit of brain fog. My best friend was diagnosed at 14 with fibro and was recently diagnosed with some other new stuff 😬 it's not an easy life but we try and make it the best we can and out husbands are just a long for the ride 😂
Yup same here. A phrase I often tell people to help them understand the true lack of being able to do the thing is when I tell them that showering is tiresome. Imagine one of the most relaxing events in someone's day being turned into the biggest energy suck. Imagine having to rest after a shower. Hell Imagine having to rest after taking a rest. 😂
@@chelseakuwahara2197 literally. Washing my hair makes me breathless and feel like imma fall over or pass out. I explain to people that the aches I get are like when your sick and feverish and your body has those deep muscle aches
@@ryannstarr4729 Yuppp exactly! I had to shower tonight after being in a flare all day and thankfully my husband joined and helped. It made it so much easier and combed my hair in the shower and out. Sadly not everyone has someone there to help in those tough times and I really feel for them. Showers by myself are so tiring. It's like someone took all my spoons at once 😂
@@chelseakuwahara2197 yesss! I refuse to shower when I'm home alone unless I absolutely have to
Zach just saying “listen to disabled people” made my disabled brain happy
Your username is such a mood
I remember before my diagnosis, a friend of mine at the time asked me if "I wanted to be sick" No, I don't, but I feel like a fucking crazy person when my doctors keep telling me my pain is just in my head or that I'm overexaggerating. Getting a diagnosis meant that my pain was real and valid. It also gave me a better idea on how to attack it and face it everyday.
As I’m currently in a pretty bad chronic pain flare up, I have to admit I cried through this whole video. Chronic pain makes me feel so alone, and seeing someone vocalize what I’m going through helps so much.
As someone with an invisible illness/choronic pain it makes me so happy to see someone make a video about this. Have been dealing with fibromyalgia since about middle school and im 24 now and if it wasnt for practicallly yelling at doctors to take me seriously for years and forcing them to refer me to specialists I never would have got diagnosed and likely wouldnt be here today. I kinda wish they talked about the stigma of certain pain medication and how its necessary for some of us who dont respond to anything else yet were getting our meds lowered if not stopped entirely even though were using them responsibly. Would be cool to hear from people with fibro and eds if you ever make another video on this topic!
I'm also 24, but really started complaining at 17. I'd already found out I had hereditary food intolerances and found food that worked, found that I wasn't low in any vitamins as I supplemented those, but still had pain. I'm waiting to see a connective tissue specialist about EDS, as a lot of my pain is from bones sliding out of place, often pinching a nerve in the process (mostly with my neck and right arm). I have other nerve pain too, frequently in my hands, feet, and face, sometimes up my legs, and it's not easy. I personally have gotten side effects from everything I was given for pain, except Tylenol, which doesn't help much with the nerve pain. I wish more testing was done on chronic conditions, because I'm just managing with heat and/or cold packs, vitamin drinks (mostly for POTS, getting dizzy if I stand too long), and physio, doesn't really help the in-the moment issues, like my forehead being really tingly right now and making me feel like pulling my eyebrows out. But pain meds give me nightmares so bad I wake up sweaty and anxious. It's a journey for sure.
As someone who recently got diagnosed with EDS and Fibro as a teenager, it's wonderful to see other people who've gone through the same things that I have here. I feel like if Anthony made a video about them, it would be a bit easier to explain what we go through everyday.
I second this - the stigma against pain patients who need medications was not spoken about at all and as a chronic pain patient (Crohn's, endometriosis, adenomyosis, multiple deformed joints) that is my biggest struggle!
I agree. It would also be cool to hear more about when doctors just have no answers. With my fibro, my doctors were just like “…well, we can TRY these different things, but the likelihood of any of them doing anything is super hit or miss, and there’s no cure, good luck!”
Omg your story is so similar to mine and we are the same age! It’s so hard being young and having such a life altering condition but knowing there’s others in the same situation is extremely validating 🥰
Zach is always such a delight and I so appreciate him sharing so much of his stories with others
“Yes daddy” was probably my favorite line from Zach ever
Im so glad that someone with actual ankylosing spondylitis talked here. I was diagnosed at age 19, because when I was 13 I had lumbar pain and the doctors just told me "nah its because you dance in your group at school" and like 3 months later i had to get lumbar surgery because of the pain. STILL they only diagnosed me at 19. What hurt the most, is that when I was at uni (im 30 now) my friends all wanted to go out to dance, drink, do normal things you know, and i'll have the worst time because i was tired, in pain, but all the friends told me "you look good, you dont look sick" like GIRL MY DISEASE ITS HIDDEN.
I would love to see this expanded into just invisible illnesses in general, and dive into the spoon theory and others' disbelief as well! I know as someone with an invisible disability I think it would be really helpful to the community.
yes! i have crohn’s disease and i would love exposure on it. it’s such a taboo illness that people who have it don’t often talk about because it’s slightly uncomfortable. i just want to be able to share with people why i poop 7 times a day 😭😭
Yes same! I have chronic fatigue syndrome, eds and dysautonomia and I related to alot of what these people go through! But there are so many things to talk about when it comes to invisible illness that I'd love to see it talked about more!
I'm SO glad you touched on how physical pain affects mental health. I've dealt with chronic pain for 3 years now due to a car accident and poured so much money into treatments to have it undone by another accident which caused my mental health to tank. So many people don't realize how truly exhausting it is to be in pain day in and day out but slap on a face to make it seem like you're okay.
im so sorry :( im wishing you well
My husband has the same disease as Zach. He's so good at masking the pain that I often forget he's dealing with it 24/7. I honestly wish I could fill that caregiver role more, but usually there really is nothing I could do to help.
my boyfriend has it as well. it really sucks to not be able to help their pain. lots of days he has trouble just walking. I know how you feel in that caretaker role and I'm sure he appreciates you and everything you do ❤
I have AS too. My heart goes out to you and your husband. When chronic pain is part of the equation, it impacts everyone.
as long as you're trying Shannon, i know that means the world to him. i often feel so bad at how frequently i mention my pain to my boyfriend. and he really tries to help. he's not perfect at it, and i don't expect him to be. i often deal with the pain in silence because it's just happening that much. but it really helps to at least voice when it's hurting. sometimes that's all that's needed, to be able to complain and have someone who loves you know, even if they can't do anything about it. you're awesome for being there for him whenever you can
I have Ankylosising spondylitis, the same as Zach and I had listened to his story after I was diagnosed. Yet this interview was much more in depth about the brain/psychology part of a disability/chronic pain which I appreciated. I cried at the part about feeling like a burden to other people and trying to prove that you’re in pain. As well as mourning your past self which I felt like I was alone in, I started geting pain at 16 I’m now 21. My pain feels like it’s back to the beginning when it was unbearable and uncontrollable. I also wanted to point out to other people that might also be going through a really bad flare up etc. When Zach said I’m not defined by my pain, my pain isn’t my identity it isn’t me and I’m not letting it control you. There has been once or twice that I’ve felt like that but right now at a time when the pain and disease is winning in my battle, I want people to understand that I myself am suffering and I guess letting the disease win and I am letting it define me. And that’s ok to a certain extent, I understand that I need a wheelchair if I go out, I need to ask for help, I need to sometimes cry about my past and my future that might be difficult, etc. Just know if your going through that stage right now your not alone. I know it sounds really depressing and negative but as kelsey said it’s a journey that you can start over about trying to heal yourself. Sending positive vibes to anyone that is in pain and suffering and depressed right now, cause I knows it’s hard but eventually I don’t know when but we will get through it.
i’m worried I may have AS too, i’ve been to several doctors about really bad hip/tailbone pain flare ups that leave me unable to walk at times but haven’t gotten any answers. During my flare ups i also get chest pain and sometimes eye pain, do you experience any symptoms like that?
@@livelovelaughx315 I have AS myself and yes, pain can definitely be in the chest, and certainly the eye. The reason I was even diagnosed at all was because my eye was severely inflamed and If I didnt get the right medication in time i could have had severe damage to my eye. So please do be very careful when you experience pain in one of your eyes, and if a red spot appears please save yourself and ask for prednison eye drips, when you are diagnosed ofcourse.
@@livelovelaughx315 Also have AS, and I never had the eye symptoms, but my rheumatologist asks me about it every time I see her. It's very, very common.
I've been disabled in some capacity my whole life but when I was 17 I tore a ligament in my knee and I couldn't see a doctor because I didn't (and still don't) have insurance. It was hard but it got better and I eventually was able to start working out regularly when I was 21. But then working out made my other knee tear and dislocate after 6 months. I had lost 60 pounds, 10 lbs a month. Worked out 5 days a week for 2 hours a day, LOVED IT! I loved who I was becoming. I had never seen a version of me that was happy let alone happy in my skin. I was everything I'd ever hoped to be and I could see a bright future for me .... Then my knee blew... I remember I cried not because of the pain but because I had been here before and knew what I had just lost... I'm still mourning who I almost was. I had spent my whole life depressed, disabled, fat, and feeling like an alien only to finally feel something positive and have it ripped away from me. Turns out I have EDS so my tendons or something is really stretchy and because of that its easier for things to dislocate (I'm now having problems with my hips and shoulders but my knees were the first) Every day I wake up at a lvl 5 pain minimum and fluctuate between 5 and 8 daily. And because there is nothing anyone can do (doctors are incompetent, surgery needs insurance and I would need someone to care for me afterwards and I have no one) I just survive on taking4 ibuprofen 2 Tylenol 2x a day, apply voltaren arthritis cream, burn with a heating pad (my back is SOOOOO scarred), and smoke green. If I didn't have even one of those items I'd go insane. I actually recently wrote a poem to help me through the mourning process of the self I could've been and almost was. Here it is: "Oh how beautiful she was. So glistening in perfection. She was everything I'd ever aspire to be. I held her hand once. Or was it a dream? A dream I had long ago, never quite achieved. My heart still yearns for your presence. My soul ever waiting. On the day I hold your hand once more And two becomes one." TL;DR My knees betrayed me as soon as I found my potential. Caught a glimpse of my best self and it was taken from me. Here's a poem in my mourning.
My mom has a extremely rare disease and goes through pain daily every minute of the day yet she still gets up to help us,teach us and be me and my sisters mom It shows how strong these people are no matter what they go through they are still the bravest people ever
💜
Sinch this comment is getting traction I'm gonna post this here in hopes of helping more people: Try CBD!!!!! It literally gave me my life back and took it from unbearable to 'wow I can actually do things sometimes!' It also help with the anxiety, depression, sleep issues and more symptoms that may come with your illness. Do it! (and if you try it and it works find a good reliable supplier on Alibaba and buy this shit in bulk! I bought 150 grams a few months ago and it saved me literal hundreds if not thousands of dollars, and I'm not even halfway through my batch despite giving it to my horse as well lol)
@@Thenoobestgirlfirst of all thank you! My mother has tried CBD and it works pretty well for her I believe Considering all the stuff we’ve tried (IVIG etc) i like that CBD is a more natural help
I love the diversity he puts in his videos and how nice he is
I like how this channel is "inclusive" but done the right way, y'know?. Like, something like twitter only can dream to be. Or something.
@@GattiJuanIgnacio inclusive for the sake of being informative rather than just for a good look
@@getaids exactly.
i was recently diagnosed with Amplified Pain Syndrome after going through 4 rounds of chemotherapy and dealing with Avascular Necrosis for 6 years. the segment where the talked about “mourning yourself” really struck home because, it’s not just a one time occurrence. i am in a continuously cycle of mourning my past, healthy self and i mourn for my future because i’m not sure how old i can get. this video makes me feel seen, thank you for producing this and making me smile about my life today :)
Anxiety plays such a huge part in my pain. I was doing so well, then needed to take my daughter to several appointments every single week, an hour away in very heavy traffic (5-6 lanes bumper to bumper). By the 4th time, I had so much pain over my entire body, it was becoming difficult for me to walk. So when people say, “you just need to get out more,” they really have no idea.
People telling me to get out more are idiots. It’s so arrogant to offer advice that could be the opposite of what you need. If getting out more was helpful to me, I would simply do that. I don’t need someone to come up with that idea for me. I feel ya.
As a chronic migraine victim, this is a good way to learn of other people's pain. Thank you Ian!
Ian?
Ian?
tf is ian
Lol mixed up the smosh names
@@ptr4410 Did it as a troll lol. I just remembered Anthony's face when someone called him Ian in some video.
I have Ehlers-Danlos, endometriosis, and potentially (hopefully not) Lupus(praying I get it ruled out by my rheumatologist). Unfortunately I was born with all this, my severe chronic joint pain started around age seven. I have no idea what it feels like to have a single day not even pain free, but with no pain above a four. It has literally been decades. I have the left knee of an eighty year-old, according to my orthopedic surgeon. I can't sleep without medication, my hips, knees, lumbar spine, shoulders, and wrists prevent ANY comfortable position. I have been suicidal off and on for decades. I was heinously bullied(emotionally and physically) in school. I have been on crutches roughly 70-80 times in the past 27 years. At least. I lost count. I can't even say functioning is a struggle because much of the time I can't function. Just surviving is a struggle. My EDS diagnosis was a relief because I finally knew the name of the monster under my bed, but it absolutely shattered my heart. Endometriosis was less of a "surprise" my grandmother suffered very much f on it. The Lupus....I am terrified to find out. My sister was diagnosed with Sjorgens(I can't spell that lol), and she talked to her rheumatologist about me, and he REALLY insisted I get tested. And I am terrified. It KILLS my knees, hips, and back to just wash dishes for five minutes. I don't feel human sometimes... It's caused severe Generalized Anxiety Disorder, Panic Disorder, and depression. Funny thing is, people that don't know me well have no idea if I am having a good pain day(4-7) and I can suffer through not using a cane. They say ai am so happy and bubbly, they would never guess. I definitely went through a mourning period. I will always hurt. I will never hav kids. I will never be "normal". But I have learned to laugh. To joke. To live with it. It is often absolute hell. But I do it, because I want to live.
I have EDS and endo too! I've found that the concept of being in some level of pain 24/7 is really difficult for most people to wrap their heads around. I'm between a 2-4 every day, yet when I'm vocal about it, it's closer to a 7. It takes a lot for people with chronic illnesses to speak up about our pain because we are manipulated and gaslit into believing it's normal or not that serious at a young age. Looking back, I was dancing on two dislocated ankles for an entire year as a kid. I thought I had just twisted them and the adults in my life turned a blind eye because I was good at tolerating the pain. It's always the bubbly kids that are described as "brightening up the room" that hide the hurt the best, so we get ignored.
@@mayasiegel4169 lol, I horrify people sometimes. Last fall I stabbed the absolute shit out of my finger with a scaler(don't worry, it was right out of the autoclave, sticking out of the sterilization pack, sliced it pretty good). One of my coworkers freaked out, legit concerned, and ai was just like, "whups. I don't think I need stitches, it's cool, gimme a band aid", and her eyes were as huge as dinner plates hahahha. She was like, that's a freakin deep cut doesn't it HURT????? And I was like, eh, yeah, it's cool though, I deal with so much worse on the daily. She actually looked scared of me 😆😆😆😆😆 We tend to have a MAJORLY high pain tolerance. 99% of the time people have no clue I can barely walk, I am good at hiding it. Like what was said in the vid, if I am complaining about, it's at least an 8 on my pain scale(prob about a 20 on a "healthy" person's lmao)
@@lizthedisjointedzebra692 oh yeah. My first major dislocation was at a youth group retreat and the doctors there thought I was faking the dislocation because I wasn't in much pain and popped it back in myself before they got there. Limped through multiple airports the next day. My 10 is probably a 40 on a "healthy" person scale. I've felt it before and it really screwed up my perception of pain and elevated how much I can tolerate. I'm also pretty good at hiding my limp if something is dislocated or subluxated and won't sit right. Most people are in shock when I tell them that I'm walking pretty normally next to them with a subluxated knee lmao. Hurts, but it's not the worst I've dealt with.
I have Endo too. Some days I wish to die.
The EDS foundation has started publishing a ton of research so fingers crossed we'll all have help of some sort soon. Some types of eds are now being reclassified as somewhat common, too, so there's hope for more research funding. I have vascular and hypermobility, on top of a half dozen other comorbidities caused by both. A good support system has helped a ton with exchanging tips and tricks on coping daily. Hang in there and never hesitate to reach out. It's ok to not shoulder it all alone.
I suffer from severe, treatment-resistant depression and this resonated so strongly with me, as well. Hearing you ask about mourning my past self struck such a heavy chord with me; it’s something i’ve been bringing up in therapy so much and it’s so so hard to navigate. Depression is an invisible illness, too, and i also struggle with people understanding what i’m going through and how it affects my abilities. I’ve been having a difficult time because I don’t want to have to unveil my disability to get to people to understand what i’m going through, too. It’s a valid reason, but it’s also very personal and i don‘t like having to share it with so many people, especially in school or work settings. I’ve been burned by it before at a past job and I’m scared it’ll happen again.
I think we want to love ourselves, but it’s strange how we’d also rather rot into the soil as a nutrient than navigate this mortal coil and human skin. It’s not easy trying to be open with everyone about the part of us that makes us feel broken wether it’s hydraulically squeezing depression, brain melting anxiety, or something else thats really special. Talking to people about those lowest moments might get them out of your head temporarily but it’s like a mental scar and somehow doing other things glances at that scar and then you fixate, tunnel, or bury yourself in various forms of negativity. I thought i was different when i was young but i didn’t realize i was living with physical disabilities and that the mental ones were just about to join in. The slow breaking of ones body and psyche in my eyes would be torture, so ask me how i’m doing i’ll say existing is torture. I don’t wanna feel like a net negative to society but i don’t see where i bring value to anything besides just another perspective or statistic. Hopefully i find something that i feel brings value to not just others but myself, the darkness cannot be contained we can only try to shed light on it.
Wish you all the best💖
@@bluefired6757 💕
@Kay I'm so sorry. I have depression too and it just sucks. One of the things I hate the most is not being able to talk about it with anybody because they wouldn't understand. Hope things get better for you
I’ve been suffering chronic pain since I was 13- it’s been multiple years and doctors still don’t have an answer and they truly just don’t care.
DAMMIT, ANTHONY. I wasn't expecting to cry at work so early in the morning! I am a childhood cancer survivor, battling Neuroblastoma five times and being told I had 0% chance of making it. Clearly they were wrong about that part haha, but after a couple years of "normal life," the pain started and built over the years, being compounded by falls and injuries. I have had severe chronic pain for the last four years, starting when I was 25. Right now, I feel stuck in a loop of depression, C-PTSD, and pain. It feels hopeless at times because more and more things are going wrong in my body, most likely due to the treatments I received. I just want to say thank you to Zach, Kelsey, and Ryan for sharing your stories. Every word that was said echoed true in my heart and really made me have to examine the suffering that I am causing myself by letting this loop take hold. Thank you for giving me a tiny spark of hope when it was about gone.
♥
@@BlinkinFirefly right back atcha.
ur literally so strong wow
Sending you love and spoons!
As a person who was born with chronic pain this was really interesting to watch, I feel not so alone anymore.
Oh love, you are not alone. I think of all of us I've never met in pain and I pray everyday!!
I suffer from fibromialgia it stared after the birth of my first daughter 7 years ago I felt so alone my house burned down last month we lost our dog we all got out safe it's sent me into an horrific flare up I felt so alone I feel so guilty that i can't play with my kids
As someone with chronic pain, it sucks and abled people make every day harder for us than it should be. We don’t even have marriage equality in this county but people who aren’t disabled just don’t care at all to even know that much
Spoonie hugs
Omg zach’s explanation of how docs don’t listen, I understand that. I’ve got fibromyalgia, which obviously isn’t as severe as these chronic pain problems but it’s still a chronic pain thing and whenever I tell a new doctor about it, they’re like ‘oh you’re too young , you’re just over reacting’ even tho I’ve been diagnosed by a rheumatologist and sometimes just have to explain my pain to the new docs and even when I mention fibromyalgia, they still say I’m too young- I’ve been diagnosed since I was 14 and I’m now 22 but yeah, they always say I sound 50 and don’t believe me
I was diagnosed at ten. You're not too young.
There are also different severities of fibromyalgia
Being an epilepsy sufferer, I would love to see an episode talking about it. It really does fuck up your life to no end.
I think that would be very cool! my mom struggles w/ it aswell as my brother but he doesn’t really have them that much but he does have it me & my brother take care of her / try to help her as much as we can & from an outsiders view its scary but alot of people assume alot & i feel like that would be cool to educate ppl so people can learn i certainly would love to learn more aswell :)
Tell me about it. The emotional part is the worst.
Agreed. I stopped the seizures but the brain damage and memory loss is horrible and forever and the day migraines I got with mine ahh
@@allysonb210 I dnt have memory loss since I got my anti seizure meds changed. Maybe ask your doctor. I was also on topamax for a year to control migraines and it worked, the side effects were worth it. Also I wear glasses with a special filter for white light that also helped pretty much eliminate the migraines. I get two migraines per month max, some months no migraines at all. Maybe ask your doctor what can you do to make it better.
Same, I have had all types of seizures- grand mal, absent and focal. Fucks me up, Stopped me from doing SO MANY things I love.
I'm so happy you covered this. I don't feel so alone dealing with all my chronic issues that cause me constant chronic pain
I’ve learned a lot about chronic pain during this video, it’s really awful i’m happy that people like you who have it feel more seen.
You are never alone, spoonie!
@@MinPinSteve thank you 🥺💕
As a EDS, fibromyalgia and arthritis patient I can honestly say Im in pain 100% of the time. I dont know what life is without pain. Now after an injury I potentially have CRPS and it feels like someone is literally lighting my skin on fire all day. My pain never ends and ill never know life without pain. I wouldnt wish this life on my worst enemy.
As a *very young* teenager dealing with chronic joint pain, I get called dramatic for it constantly and the amount of times I'm told that I need to "work out more" because I'm just "out of shape" is BULLSHIT.
If you’re watching this as someone without chronic pain - please know how lucky you are. Live your life to the fullest! So many of us cannot ❤️
bless you, I wish you guys the best (I don’t suffer from chronic pain and watching this makes me feel so lucky)
I was basically born with my fibromyalgia and dysautonomia. It started out as leg cramps that had me up and screaming at night. That turned into back pain at just around 5-6 years old. I remember one time playing with my lps and having to lay down and play cause my back hurt so bad. It still does hurt a bit but there is all over pain now. I haven't been in school since the first few months of 9th grade. I'm a senior now. I don't have a job and can't drive so I practically have no social life. The only time I'm around other teens my age is in youth group once a month or when I volunteer for around 5 hours at church every so often. I've tried everything from CBD to acupuncture to yoga. Nothing. I'm on a guaifenecin protocol that seems to help a little and a salt retaining pill that helps my dysautonomia tremendously. I'm on a few other things to help side effects (ibs n depression etc) otherwise I'm just living life and taking it day by day. It's honestly boring as hell but I'm used to it as this point.
Have you every heard of Ehlers-Danlos Syndrome? Your story sounds really simar to mine and I've got it, was miss diagnosed with Fibro tho cuz they didn't know what else was going on with me. We're the same age and I also haven't been to school sense the first few months of 9th grade. No job, no school, can't can't drive so I also don't have any friends and it sucks. I'm thankful for the internet tho. I've got dysautonomia and a bunch of gasto issues too. The chronic pain and just being chronically ill is just a nightmare to say the least...
*hugs* it sucks how isolating chronic pain can be. but hopefully you can get creative with finding ways to be social and keep busy. that's what i've had to learn to do. it's a journey finding your own niche with chronic pain, that's for sure.
I have ibs as well! It flared up extremely for 5 straight years but luckily through a managed diet that causes flare ups and slow building my diet back up from 5 plain foods to many foods it has gotten better!
I have fibromyalgia as well! I get brain fog too. It’s nice that someone else is vocalizing about it too.
I also have fibro CBD does help me but you need an extremely high dose and you need oil and topical I also smoke thc everyday it's my only relief
I’d love to see you interview people with ME/CFS. It’s something I’ve suffered with since aged 13 and got diagnosed with at age 18/19. We often struggle to be seen as having a ‘real condition’, we suffer from fatigue 24/7, chronic pain and mental impairment due to the fatigue and pain. It can be triggered from trauma, accidents, genetics or just have no specific cause. It really is helpful seeing these videos helping validate that there is SOMETHING WRONG and we’re not just being dramatic.
As someone who's under 13 and have had chronic Neuro arm pain since 8,this hits hard. There's not many people who understand, so I'm glad you interviewed them to help people get an outside perspective and help people understand:)
“ Every decision I make today is defined by my pain. That said, my pain does not define me.” TRUTH! I work on this everyday of my life. I am NOT my illness.
It took years for me to be diagnosed and when I was it was a relief like “see! I told you something was up!”
I was diagnosed with fibromyalgia at 17, its been 8 years now, and the thing I am most terrified about is that things get worse. The worst part is trying to help people understand weather I need help, or need to get motivated. So many times that I needed to go to the hospital, and ended up listening to a "list of all things that you did wrong, and that's why you're in pain" or the "you can do it, you're in NOT THAT MUCH PAIN".
You should do another one of these because there are some many different types of chronic pain conditions.
Hey Anthony! It's Kylee (I was in your agoraphobia episode) Thank you so much for talking to people with chronic pain and addressing the struggles that come with living invisible pain. The questions you asked were so important and really drew attention to important issues to what we struggle with Another phenomenal interview 👏 You're really doing amazing work For everyone else seeing this Like I said, similar to Kelsey, I struggle with agoraphobia (for different reasons but my chronic pain is also a factor. Honestly the only reason I didn't bring it up in my initial interview was time constraints 🙏) Anyway, I myself have fibromyalgia, chronic pain disorder and a currently "undiagnosed" condition, Which is most likely Multiple sclerosis (MS) (The symptoms/evidence is there but it can be expensive to test for) My pain is often worsened by my CPTSD and anxiety Something that really stood out was listening to everyone talk about the inhuman or completely un-empathetic treatment they received from doctors because I know exactly what they're talking about Doctor's are trained to look for "drug seekers," not to find or treat pain. It took me over 10 YEARS to actually get diagnosed because everyone I came I across treated me worse than garbage because they ASSUMED I was drug seeking and refused to believe me. (Which says a lot about how we handle drug addiction as well but that's another conversation) When Zach mentioned how reaffirming that diagnosis was...I felt that I remember crying when I received mine. You feel crazy when everyone is against you, you can't sleep and all you know is pain. Even Kelsey talking about the science of pain, I had to do that Truly amazing job to everyone who spoke out about their pain in this interview It's not an easy subject to be open about And again, Thank you to you Anthony for giving so many important topics the platform they need I would honored to be in another interview in the future ☺️
❤️❤️❤️
I relate to Zach so much... I've been struggling with AS since I was about 13 and I've also watched my father struggle with the same disease. It means a lot to have more awareness brought to this.
Same, I really hope it becomes more mainstream to know it. It's a mouthful to say though. Maybe we all could have been diagnosed quicker if more primary care doctors knew about it and not just rheumatologists.
My husband has AS, his father has it too. When his dad was in his 20s AS wasn't something most doctors even knew about, so he went through a lot of experimental testing trying to find a solution- one of those tests put him in a wheelchair for over a year. I'm so thankful that it is at least recognized now and there is medication available, but I really hope that we continue to learn more!
It's so true how when you start thinking about it, you realise how much of your body is in pain. Like I know my hands always hurt and if I'm sitting my hips might start hurting. But it isn't until I think about it that I feel my ankles, my toes, my left shoulder, my knees, my everything.
Zach is the greatest and I just love how open and honest he is whenever he speaks about his life - not just his illness or his pain but just life in general. He has no problem sharing his experiences no matter how tough. 🥰
My mom has extremely bad Chronic pain and health issues and to this day she still can't get unemployment or even disability benefits. The reason is because they simply don't believe her, chronic pain is so hard to grasp and if you don't experience it yourself you have no idea how agonizing it's. I just wish she could get more help like she deserves but doctors are just simply biased because it's Chronic pain. Just like mental illnesses, any issues that are "invisible" doctors are always biased against it which just makes it more of an issue.
Idk what type your mom has, but it's worth trying CBD. It might possibly be a life changer for her like it was for me.
@@Thenoobestgirl Yes that's the only thing that helps her sleep at night and allows her to eat and feel as comfortable as she can be. It can only help with so much though :/
As someone with EDS, my first mobility device came in today (a cane) and felt so alone. This videos helps to reassure
Hey, have you heard of Jessica Kellgren-Fozard? She makes a lot of types of videos, but some of it is about her EDS and other conditions. There's also Footless Jo who is just starting to use a wheelchair and has been making content about getting used to the idea of having a mobility device. You're not alone out there. I'm not disabled so I don't know what you're going through, but I'm sending love and support from afar. Congrats on your cane! I hope it has made life a little easier for you these past 7 months or so!
❤️
My mom has trigeminal neuralgia and this video has given me a glimpse into how she feels everyday. It truly breaks my heart. Thank you for bringing this to light.
Have EDS and haven’t been diagnosed with any chronic pain disorder but i’m constantly in pain and this video is actually helping my think through a lot of this stuff. i’ve never not been in pain and hearing about other people having a normal life before and not being able to live that anymore really hurts.
i have chronic pain due to a medical condition called EDS and other chronic diseases. thank you for making this video i’m so glad we are finally being seen! i was diagnosed close to 10 years ago and i was told for years that i was depressed and that i was faking and that’s so hard to hear when you’re 7-10 years old that you’re faking when you’re really hurting. everything said in this video is so true so thank you so much for making videos like this.
which type of EDS if you don't mind me asking? :) hEDS sufferer here!
@@ZenobiaSE i have EDS type 3 hyper mobility
@@katiebright686 ah the same then! :D hope you're doing good!
"i was told for years that i was depressed and that i was faking and that’s so hard to hear when you’re 7-10 years old that you’re faking when you’re really hurting" wow I resonate with this so much! I have hEDS too as well as POTS, Fibro and other things.
I'm getting tested for EDS hopefully sometime within the next few months. My dad's family has a history of "double jointedness," which just means hypermobility in outdated terms. It seems like those of us who are gluten intolerant also have joint issues, so I'm seeing if there's a link. My pain started as a teen where it was dismissed as growing pains, but now I'm in my 20s, and realizing dislocating joints isn't normal, and what I was told was tendinitis, was actually a bone in my neck pinching a nerve causing issues down my arm... Yeah, not fun, but thankfully I have a good physiotherapist that's helping me.
thank you so much for bringing light to this. As someone with chronic pain (EDS, Fibromyalgia, Chronic Fatigue and Migraines) it’s so easy for others to brand you as ‘lazy’ or say you’re exaggerating. Having this on such a large platform is amazing for awareness💛
Omg, been there so much with being called "lazy" or "exaggerating". My dad was the worst with that. On good days nobody worked harder than me. But on painful days, I just could not function, and for the longest time truly believed I "wasn't trying hard enough". When in fact, the pain was real and the causes were real. Never stop fighting for your health! ♥
I have the same condition as Zack. I am 37 now and was diagnosed when I was 24 after years of begging for help! Dr's defo ignored me because I didn't look ill. Eventually Rheumatology saw me and getting a diagnosis was so hurtful but relieving. I am in pain 24/7 but it varies through the day. I am also a full time critical care nurse. People in healthcare, colleagues are very uncaring, they just assume I am ok as I look fine outside and don't complain a lot. Today I had to go home because the pain was so so bad. My dr here in Scotland is good but Chronic pain is definitely not being taken seriously. It frustrates me. Much love to anyone experiencing chronic pain.
I love this so much as someone with chronic pain, and I would LOVE to see a video about fibromyalgia as it's all mental. Having fibro is a Rollercoaster because there isn't a physical reason why you should even have pain, it's a neuropathic issue where your nerves either send the wrong signals or enhance the signal so a simple sensation is unbearable.
Zach does such a good job with describing what he’s going through
Please consider doing "I spent a day with US Immigrants" (all types). Idk if that would be possible or not, but there's a lot of stigma and lack of knowledge about how intricate and exhausting the process of getting into (and staying) in the country actually is.
I love Anthony, as a chronic disease patient (SLE Lupus) and a healthcare worker thank you for using your platform for a wonderful cause. Invisible pain is the hardest to diagnose because you can’t prove pain. Even as a Lupus patient it took me 6 years to get diagnosed. By then I had developed other complications. You touched on such poignant parts of what it is truly like for all patients that live through chronic pain and disease. Thank you!
Hey fellow lupy. It's just so hard. I'd love to see an episode with lupus and similar
as a chronic pain sufferer this video really spoke to me and i feel that i can send this video to others to better convey what i'm going through. it's so difficult to effectively convey to people around you that the invisible pain you experience is real and depletes you of energy and has a mental toll on you. many able bodied people often forget that someone might be going through immense pain even when they look physically able and well
My dad has Trigeminal neuralgia, and watching him fight through attacks writhing on the floor when I was younger was horrifying. I am SO glad that he is still alive and okay, but it hurts to know that a person you care about is hurting. Chronic pain is not a joke, and I will do my absolute best to advocate for people who deal with it for the rest of my life.
My uncle took his life when I was a tween due to his chronic pain following a motorcycle accident years prior. Thank you Anthony and (brave awesome amazing lovely) guests for this episode.
As a medical student with a chronic pain condition, this video is so important and also affirming. As someone who has been on the patient side, begging for relief and being met with, “you’re young and healthy, just use Tylenol” by physicians who are my faculty drove me into a deep depression. I felt subhuman. Once I got diagnosed and got the correct treatment, I’m back to 70 percent of my previous functionality. It took one simple MRI to diagnose.
As long as they know which MRI to do 😅 I’m sorry you have to go through this, I wish you the smoothest journey 💚