My wife was called crazy before be her EDS diagnosis. My brain tomorrow reduced (not eliminated) how much I was called crazy. EDS is nice because people don't generally have preconceived notions about it
I think people forget that they're only seeing what the creator wants them to see. Of course they're not going to see people laying around fighting migraines or dealing with other ailments because that would not be good content. And that, to me, would seem more like it was fishing for attention and sympathy rather than just speaking openly about a condition. People are just.......strange.
Not only that but most people who suffer with invisible illnesses have been conditioned to suck it up and to feel shame. For most of us it's a mortifying thought to show ourselves at our worst.
Yep, a 2 hour video of someone lying in a bed occasionally groaning with hot/cold packs on hardly is a video of the century, which is sadly often the reality.
if people see your complaing to much they will call you a baby and an attention seeker, but if your always appear to be happy they think you should be less happy and show people your pain. You cant win. I have never given a crap what other people besides my loved ones think of me, and never explain my self. I have had strangers demanding me to explain myself many times. Why do I have a smile on my face if I am in pain. Why am I parking in a disabled parking space if I am abeled body, or they think I am to young to be disabled. They dont know what an invisible disability is.
Bingo. Because on the bad days, they don’t see you, because you can’t get out of bed and don’t have energy to shower! The idea of what life is truly like would just boggle their minds and it seems they can’t process it. It’s very frustrating.
Thanks for being willing to listen to my venting, Leon!! Usually I'd say "its alright!" but this is the one time I think I'll just say its really not alright - I'm honestly okay, but felt the need to vent and let it out....so thanks again. 😉
@@FootlessJo I know you have heard it enough today but once more sorry someone turned their toxicity towards you. You are brave and you choosing to do the surgery shows that. Some going through the same thing may not have been able to bring themselves to terms with having elective surgery despite pain relief but would in turn suffer bc they were afraid of the procedure. Your journey may even help people face that fear and have it done and realize that it was worth it so kudos! Ignore naysayers and live life for Jo and no one else. You're happy and that's all that matters. You're somewhat if not completely paid free and your life is better. Your life. Screw them. I admire you
Ahh so sorry Jo some people can be so nasty I am living with cronic pain and get comments about it. I try to think that when people are being like that it means they r lucky enough to not of experienced it although that is not an excuse you should still try to be understanding. ❤️
Ditto. I developed the same illness my mom has, so I was diagnosed pretty early, and I kept getting, “But you’re so young! That’s an older person illness. You must be mistaken.” Well, let me phone my specialist and enlighten them that they’re wrong. 🙄 Do you also get people telling you random stuff they say should fix you? Like, “Go on the keto diet, it’s great for inflammation and you’ll be set in a few weeks.” Or, “A green juice cleanse every month will change your life.” I know it’s well meaning, but... if it was that simple, I’d not have tangoed with this so long that my illness would be able to vote, if it existed separately than me! 😂 Hang in there; it’s highly unlikely, but maybe these people will learn, in time.
I can’t express how powerful your words are. You found the words I’ve never been able to find. I’ve had chronic pain and migraines for 20 years. I am constantly fighting to make people and doctors believe me. Thanks for speaking out
This topic brings to my mind the old saying, "don't judge a person until you've walked a mile in their shoes". I have to admit that I wish that could happen, sometimes in a vindictive way with some people.
Yeah, I do admit sometimes I think about how some people who made light of the situation would crumple and go to the ER after ten minutes. 😅 It’s like telling a depressed person to just be happy, which is also completely ridiculous and scarily common.
I understand your frustration. I hope venting helps. I'm happy to listen. I hope this deters the people who say things like that but actually aren't jerks. People today just say things without thinking of how others feel or without thinking of how credible the words coming out of their own mouth even are. Sometimes people speak just to hear themselves too. Don't forget some people are just jerks too. We can't all be nice people. And we can't all be nice all the time either. I've said hurtful things I sure do regret. It's still frustrating though when people make such personal attacks. It seems like they make these comments as if you don't actually read them and only other commenters are seeing them so they think they are basically whispering behind your back. It's cowardly actually.
Me: *Goes to hospital in intense, obvious pain* Doctor: "I see you have a history of mental illness, it's probably just anxiety" Thanks. Appreciate it. Good job.
ZombieDoll I get that any time I go to the ER for something. I literally sliced my finger down to the bone and they didn’t even want to give me stitches, they told me I was overreacting and put a bandaid on it.
oof. I've been there, I was dealing with weird symptoms for months, fatigue, tingling legs, shortness of breath etc. And because I've been diagnosed with general anxiety allllll the doctors I saw were just like oh thats anxiety. And those can certainly be symptoms of anxiety, but my anxiety had never presented in that way before. I finally found a doctor who agreed to do like, an extremely simple blood test and turns out I was severely anemic. Took me five months so find a doctor who would be willing to order one, very basic blood test.
@@ljean5471 I had/have similar symptoms, as well as chest pain and palpitations. It wasn't until a friend was like "Hey this sounds like the thing that I have" and I went to my doctor and she was like yeah, makes sense. Then finally, 6 years later I get a diagnosis of POTS, which explains the chest pain, palpitations, fainting, etc. Once I had the diagnosis life got easier because I could point to it and say this is what's wrong. Until I got kidney stones and a kidney infection and doctors were like "Are you sure it's not just your period?" Which resulted in mu using her mum voice on the doctor
Laura Blatherwick I have iron deficiency anemia and yeah, it’s really weird the seemingly random symptoms. We’d have had no clue if my mom didn’t have it as well. And I still get people telling me, “oh eat this, it has a lot of iron, you’ll be fixed.” Wellll since my body can’t absorb iron correctly, it won’t do any good, but thanks for thinking it’s that simple, and I could figure out maybe higher intake would help! I know sometimes people aren’t trying to be jerks when they say condescending stuff like that, but truly, if it was so simple, we wouldn’t NEED doctors and we wouldn’t have chronic conditions because we’d just fix what was wrong! It’s like telling a depressed person to just choose to be happy instead. It’s condescending and damaging and not helpful in any way, shape, or form. I really hope you’ve gotten a good doctor and treatment plan; I’m getting retested next week because I’m having the restless leg issues and taking weird extra little breaths, and my lips are super pale and tinged with blue when I wake up. Not ideal. If the test isn’t clear one more time (I also have Lupus and some autoimmune reactions can artificially inflate some of the numbers we’re looking at) I’m going to need more in-depth blood work, so, here’s hoping. I hope your medical team stays on top of it, so you never get that ill from this again. Be well. 🌷
@@SunflowerSpotlight I hope you can find some good answers/solutions, chronic health stuff is never fun, also new symptoms should never be taken lightly, by patient or doctor, so good you're staying on top of it and I hope you find some relief, and don't have to deal with people talking to you like you don't understand your own body
"That's exposing a vulnerability.... Please don't hurt me with it." I felt that statement on so many levels, that feeling of fear for being so raw and open with people was put into words so eloquently, Jo. So much respect for you, dude! Keep on shining
I've never understood why some people feel the need to pressure others into justifying their health, mental or physical. I have several mental illnesses, and I absolutely feel you on the diagnosis thing you mentioned... Getting my diagnoses was one of the scariest things I've ever been told, but it was also extremely validating. Keep on keeping on, you've got a new subscriber here, from Colorado :)
You inspire me. Chronic pain is incredibly frustrating by itself. I have been "happy and healthy" for my whole life and recently I've been having stomach problems that solutions keep getting put off and so being new to being in pain every day. But I'm happy you are here. Thank you for brightening my day today. Keep fighting girl. We are here for you
I am so sorry Jo, even as a able bodied person I've experienced people not believing me, and it hurt, I needed their help to resolve a situation and they made it very clear that they thought I was making up a story even though i was telling the complete and honest truth, and it hurts to watch others belittle people for things they know nothing about. Stay strong Jo, we'll always be here to support you!
THANK YOU for saying all of this!! I live with chronic pain and illness and this is all so real for me, it's nice to see others feeling the same way (though I wish we didn't have to deal with that crap at all). Love your channel and I'm so glad I found it!
I understand this honestly, I've delt with severe depression for a while now and theres people that think I'm making it up or lying, or don't realize how bad it really is and they think that I'm exaggerating when I'm really not. When they see me or hear from me its moments where I'm feeling okay and doing better, but they aren't around for the times I'm not. It makes it hard for me to talk to people about it because of this, they just see me as a happy person with nothing wrong. It sucks you gotta deal with this too, some people just don't understand.
Having an invisible illness doesn’t mean you should be treated like your symptoms are non existent. It is not a fair “game”. There is a lot of issues with people and the medical community. You don’t need to justify yourself. Screw them. I learned that people that care about me don’t question me struggling and they are understanding if I feel ready to explain myself. I appreciate you talking about Jaqui she was a big influence for the EDS community( which I am a part of) but also the chronic illness community as a whole. And those that judge are toxic and those that also have chronic illness that judge are just here for the “competitiveness” love you Jo. You are you and I appreciate you.
I’m so sorry Jo, I really really am. You’re not alone, we are here to support you. And to anyone else who sees this comment just know that you are VALID! And we’ve got each other to lean on. You don’t have to struggle alone. ❤️ much love to all who need it, and much love to you Jo ❤️❤️❤️❤️❤️
I admire your character so much Jo! Not only are you such a advocate for those with chronic pain (fortunately I do not experience), but you are such a well rounded, considerate, empathetic, understanding. I felt compelled to self reflect after watching this video. I can find myself being somewhat of a hypochondriac. Because I have taken for granted the ease of which others accept my ailments and injuries as legitimate. Thank you for this video and thank you for being you!
My wife and I have EDS and countless related illnesses, including intractable pain. We both know exactly what you're going through. You're not alone, thank you for speaking out
Jo, you are awesome. As a parent of a kid with special needs who doesn't "look" like she does I've dealt with this before too. It sucks. Vent away and educate folks Jo, you rock.
Footless Jo! When a person with deep empathy, such as yourself, comes across a person completely lacking in empathy then the result is terrible pain on the part of the empathic person. This is my feeling on the matter. Getting a glimpse of another person's soul & seeing only the Abyss... Painful. Meanwhile - Give thanx for who & how you are. Your capability of love & joy in life are gifts both to yourself & to those you communicate with. love Steve Holliday
From a fellow Jo (from N.Ireland ☘️) I am sooo very sorry for all the negative comments u must receive on a daily/regular basis 😔 as a fellow mental health warrior I am truly soooo very encouraged and grateful for ur videos, vulnerability and authenticity!! What u are giving voice to is making a difference! What you have been saying on your journey is sooo valid and valuable and I truly am so very thankful to have come across ur feed (not long before ur trip here!) and I know I can’t take away the negative comments but together we can make a difference in a positive way - one honest, real, very valid & valued truth at a time 🥰❤️😘 know if u ever visit this part of the world again u have a big Irish thank u awaiting!! 🥰🥰❤️❤️❤️
You really are amazing in the fact that you do manage to get out of bed everyday and im so proud that you have managed to find reasons to stay here and not leave this world. anyone who questions if someone has a mental health condition when you are telling them that you have a physical illness is sick.
Omg my heart hurts for this. I am grateful though that this video is not another setback in your health because you are amazing and doesn’t deserve all of this! From a chronic to another, you are SO amazing. Sending all my love and thanks for putting a light on this matter!
This video hit real close to home for me. I have Cystic Fibrosis and am, admittedly, very mobile and active for some with that diagnosis. It’s a blessing and a curse. On the one hand, I get to live a mostly normal life (playing sports, attending college, etc.) but on the other hand, when I actually do have a flare or just feel genuinely crappy to the point that I have to slow down and take time to recover, I am immediately labeled as lazy or unmotivated. And if I explain that it’s because I have this serious illness that literally kills people so yeah, sometimes I need to take a nap instead of go out to dinner, suddenly I’m such an attention seeker and how can I be sick if I look perfectly healthy. Doctors have even put off giving me the round of antibiotics I’m asking for because my lung function ONLY dropped 10% but I haven’t lost weight and my blood oxygen is normal (in other words, I look really healthy). And there was a brief period a few years ago where I made some TH-cam videos about my experience with CF, and as soon as the comments about wanting attention or making things up started coming in, in just stopped posting. It wasn’t worth it. I spent my whole life trying to educate people on my illness and I just got tired of it. It wasn’t worth it anymore. But I love your channel and literally cannot fathom how people can watch you and leave anything but nice comments. You’re just too upbeat and fun to watch. Guess they can’t handle the positivity (because all sick people are supposed to be miserable and grouchy, right?)
I had the same problem at the beginning of my pancreatitis. One hospital told me not to come back because I was wasting my time and there. Now if I go to the hospital i am seen as a drug seeker. So I have to go through my dr if I need to go to the hospital. Then while I have a bed on a floor I have problems. The nurse don't believe I'm in pain. I feel your pain. Take it on day at I time
And what do you want to bet that all along the walls in the hospital and on the walls in the units, they have those signs stating what the "core values" are for the hospital. Getting 'ATTITUDE" from nurses certainly does not fall in line with the typical core values hospitals would like you to believe they ascribe to.
I’ve always tried my best to avoid the hospital because of that happening to so many people. My Dad’s a doctor, so hopefully his sway would help protect me a bit, but I’ve never wanted to put that to the test. I’ve been sick since I was 11, and I was always really scared of having to go. Just my age makes people think I’m not being honest, or just wanting drugs to sell to “friends,” or something. I remember being in so much pain that I couldn’t speak. I thought I was speaking, but my parents couldn’t understand what I was saying. I was so frustrated because it was so hard to try to talk. We thought my appendix may have burst. Even then, having vomited from pain and fighting to not black out, I told them I’d refuse to go to the hospital if they called an ambulance. I knew one “wrong,” move and I’d be labeled a drug seeker until I moved. I’m so sorry that happened to you. It’s horribly unfair. And now with the backlash against the opiate crisis, a lot of people who are just trying to exist are getting pulled into the crossfire. I know of a few people who committed suicide not too long after the law changed in my state; they were forcibly tapered, their pain was horrible, they lost their jobs because they couldn’t work like they had been, and they were going to lose their houses. All of it caused one of their marriages to snap. And that was just... it. I hope one day we stop demonizing people for the illnesses they have, and instead greet them as equals worthy of respect and empathy, but I know by then so much more damage will have been done. I hope you have a support system now. I know it may be trickier, due to the demographics of chronic pain, but I still hope you’ve got people either IRL or online who can help when things get tough.
@@SunflowerSpotlight I have a support system, but no ones knows the pain I'm in. For me that's more frustrating part. To fully understand my chronic illness which chronic pancreatitis it help to know what kind of pain I feel. Since I not a woman I can't use child birth as a knowen pain. I have read and heard that women would rather be in child birth than have pancreas pain. Thank you for understanding what I go through on a regular basis. If we don't wake up soon as society we will not be able to fix this problem and the stats of chronic illness and suicide the number are going to be so high suicide will be the only answy. I do not know why I'm alive other than my wife making me fight every day. I also have 4 kids from two different marriages. I also have 120lbs king German Shepherd who also needs me daily. I have been out of work since September 1 last year. I am getting a long term disability. I getting a pain pump to help me win my battle but I have been fighting for 10yrs but the damage is done. Good luck in the journey that we call life.
I have many chronic illnesses as well as a very long medical history. I also am still in the process of getting answers for my chronic pain. I agree 10,000% with everything you said I couldn't have said it better.
Wow! You do not have that syndrome! Your videos are intelligent and quite fun to view. You take the good with the bad in your life. You are always real with us. I am guessing even pet videos will get their weird viewer, now and again. Stay calm and stay safe⚘
Uuuugggghhhhh I relate to this SO MUCH. I have a circadian rhythm disorder which makes it impossible for me to go to bed or wake up at normal times most of the time, and I had a doctor for YEARS give me a bunch of new antidepressants, basically tell me to “try harder”, and NEVER DO A SLEEP STUDY FOR SIX YEARS just for me to do one and find out that I was waking up every two minutes all night, and then find out my melatonin production was way off. While I was suffering and “trying harder” and blaming myself, my last year of school was ruined by a school administrator who called me “disingenuous”, refused to give me medical accommodation, interrogated me about my symptoms and diagnosis, gave me panic attacks, and ruined my marks and threatened my future. And he was just the worst example. Even people in my own family don’t believe me or don’t understand. It is SO soul destroying when you think that you’re just broken and lazy and you’re never going to thrive and everyone around you is telling you that that is right, even when they supposedly care about you. People who haven’t been through it should mind their own damn business and find another freaking hill to die on, because this one is just inevitably harmful and destructive.
Thank you for talking about this. It's exactly what I needed today. I'm currently trying to figure out why I fall asleep constantly. It's to the point where it's at dangerous times, like driving. I've been managing it so no one can tell how bad it really is, so they all assume it's not that bad. This helped just to hear others struggling similarly because of their ability to not "seem disabled". So thank you.
THANK YOU, THANK YOU, THANK YOU, THANK YOU, THANK YOU, THANK YOU, THANK YOU, for making this video. Please don't ever wonder why us "normal, but ill folks, love you so much! Helen of Troy, Joan of Ark, Rosa Parks, etc., so join the crowd of STRONG women who try to make a dent in this world! Blessings, Grannie Annie from Maine
This is exactly why I love your channel and your content because I relate so much and I love to see you be honest with everything. My husband was in the Marines when I began having some very scary migraine episodes, I've had chronic migraines for most of my life, but this pain was like no other pain i'd felt before in my skull. There came a day where I was home alone, and an episode hit, I lost my vision, I was screaming in pain, puking from it, crawling on all fours around my empty house trying to find my phone to call 911. It lasted for 3 hours. The rest of the day I was unable to focus, to the point it scared me, I was losing memory and freaking my husband out when he was starting to realize I was losing instant memory. Then that night I began losing feeling in the left side of my body, and then started the aggressive shakes I had no control over. My husband rushed me to the ER on base, where they sat me down and laughed at me literally laughed at me, then refused me treatment, no one did scans, no one checked me out, they put me in a bed for 3 hours and then told me I was wasting a bed and moved me to sit in the waiting room. After everything, they gave me a bottle of ibuprofen and told me not to misuse ER services and gave me a PAMPHLET that listed the reasons to go to the ER which listed most of my symptoms! The nurse told me I probably had a little headache not even a migraine, and that maybe I was getting my period and to go home and take some ibuprofen. It was terrifying and humiliating and thank goodness it didn't end up being something serious with my brain. I got to my PCM and she checked me out thankfully, I'm on medications now to control it but it has changed the way I have to live my day to day life. People don't realize how much a diagnosis is needed for so many reasons, and that it's not as simple as going to see one doctor, you usually have to find multiple doctors because the majority will most likely not listen or take you seriously.
I’m fairly new to your channel and I just want to express how much I appreciate you speaking out about this. My younger sister deals with an invisible illness as well (Ehlers- Danilo’s Syndrome) and it hurts so much when people think that her pain is fake or that she must be lazy or silly to be spending so much time out of school to take care of herself. Thank you for spreading awareness!
PREACH! Wow wow wow. Thank you for sharing, I can relate to the not feeling valid because I don't have an official diagnosis. For years my family thought I was 'the kid who cried wolf' and I stopped believing anything was wrong with me. This led to more issues. THANK YOU for being open with your story. You're inspiring me to put my story out there.
I am SO GLAD you made this video.. i connected so much to everything you said. Lately at lest, ive felt this way. This whole year ive had such a BAD pain in my right wrist, ive never had any trama of any kind to my wrist. Punch some walls as a teen, i draw and color a lot, and I'm a waitress. When i tell people im in crippling pain over just grabbing bread off the shelf, they look at me, using my hand all day like "well your still using your hand and wrist, it must not be that bad." No it is, its constant, some times are better than others, but even right now, i feel a pain in the middle of my palm.. still using my hand.. because i have to..
I have chiari, too, and same experience as you. Both terrifying and liberating to find out the source of my issues. I'm sorry you're dealing with all that you are, but I'm so glad to see your sense of humor (sarcasm is awesome), and as upbeat as you can, but allow yourself to be down when you're down.
Jo you hit this one so dead on. I have had anxiety and depression since I was in my teens but did not get diagnosed until I was 23. I am now a few weeks away from 47 (holy cow) but I have spent since I was 23 listening to people say "why are you anxious there's nothing wrong, you just want attention" I have let fear dominate most of my adult life bc I was never understood it validated. Never told everything will be ok, only that it was stupid to be scared when there's nothing wrong. It's not chronic pain but I understand COMPLETELY why this gets under your skin. Love you Jo..... keep hanging in there girl you got this!!! Thank you for bringing awareness to those who may not understand how much comments like that can hurt someone!!!❤️❤️❤️
I totally understand what you are going through Jo. I have been dealing with sever knee pain for the past six months I had gotten it x-rayed and the doctors saw nothing and counted it of as growing pain and refused to take me seriously even though I could barely walk on it. I finally got answers 3 weeks ago and found out that it was an easy fix just a dislocated knee cap. My younger sister's friend told me time and time again that I was faking it because I didn't look like it was that bad.
I understand your frustration. It’s hard when people just do not believe you and don’t want to believe you. Just because you don’t always show how you feel doesn’t mean it doesn’t exist. I have had bad experiences with doctors before and good ones. But I still feel hurt in a way at times about what one doctor said to me right to my face when I was a kid.
Thank you so much for making this video and talking about it. I'm so sorry that you've also had to go through this too. It's so hurtful when people don't understand that you're not lying. You're telling the truth, but they don't believe it. It doesn't fit into their mental box, it's something they haven't seen, thus they find it to be fake. The doctor's appointments that went that way still hurt, and when I see new doctors for the first time I'm always scared. Nobody should need to feel scared that their doctor won't listen to them; but it can happen way too often for me to fully feel safe. Unfortunately that forum was one of the top results when she passed away. That really hurt. I've also gone through those phases of self-denial; Is it all in my head? Am I causing this? No. Of course during a flare up I'll be reminded of that; but sometimes it's easy to think that when you are having a good day. A good day doesn't make you completely healthy. A good day is great! It doesn't mean that your illnesses aren't valid. An hour, day, week, month, etc. without as many symptoms doesn't make everything go away. People should know that saying things like that is harmful. Doctors and other medical professionals saying things like that is extremely harmful. I'm very thankful for the kind doctors I regularly see. I'm very thankful that after two appointments of me being very nervous, my new neurologist listens to what I have to say and although he hasn't seen it before, he treats my symptoms as valid. I remember my nuro-ophthalmologist making sure to assure me that I wasn't "crazy," and how she assures everyone of this. My cardiologist and his assistant have always been very kind and knowledgeable. My primary PA-C has never once made me feel unheard, she understands and cares. My ortho makes sure that any treatments or tests will be in my best interest. My urologist is one of the most calming people I've met. (Which is good, because my gosh I was nervous for that first appointment and the urodynamics study. Not as scary because they were so nice!) My psychologist is just such a nice guy to talk to! Still need to find a gastro that won't make me cry, and an allergist, but these gems of doctors exist. To the people still struggling to be acknowledged and heard; I'm sending all of the internet huggles. I hope things will be much easier for you soon! You are valid. Your life matters. Your happiness matters. Your comfort matters. You matter! Again, thank you for making this video and I hope that you have a wonderful day with lots of puppy kisses. :)
I believe whole heatedly that you are the MOST POSITIVE CHRONIC PAIN experiencing person that I have ever seen!!! I am a chronic pain survivor. I call it that because I have survived. I exist to the best of my ability I have had to be my own best advocate in my medical journey. I too hate the opiate highway that exists through most of the country these days. I am unfortunately forced to deal with it because my state is not open to alternative methods or I would definitely be using those methods. Sorry, I’m getting way too off base here, but I tend to when I’m passionate about a subject like you are too.😘 stay true to yourself & let the rest fall to the side of your highway Jo.... love❤️❤️❤️
Thank you, honestly more people need to hear this, I feel crazy on a daily basis with chronic illness and I'm glad we're not alone. we need a little more understanding and empathy in this world
I watched my mother go through a very similar situation before she was diagnosed with fibromyalgia after years of telling her doctors that she has chronic pain and fatigue. This video and message is so important and hit so close to home for me and I hope that people learn that this kind of thing happens WAY more often than it should. People like you speaking out is so important to ending attitudes like this. Thank you Jo!
My husband and are going threw the same thing it's hard to keep calm cause whatever we try to improve that chronic pain or sickness is . Yea we look ok but the IS STILL THERE PEOPLE!
I was heartbroken when Jaq passed away. She touched so many people. I still think about her often and am so, so sad for Judd and Harlow. I am in your chronic pain community. People who say things like what you experienced are ignorant!! It makes me so sad to see you this upset. I know you realize this is part of being a TH-cam vlogger. You did the best thing.... just block them. You are providing such a great insight into what it is like as an amputee and a chronic pain warrior. Take a deep breath and “consider the source” as my Mom would say 💗. Keep on keeping on. There will always be ignorant, ugly people in the world. Please, please don’t let it get to you. You are an inspiration to so many. Sending you a special hug 🤗
Important commentary. I have a chronic disease with observable impact on my walking and strength but still I have people say they can't believe I'm I'll because I don't look sick. It is such an affront when your life is altered and your experience is minimized. I appreciate your vehement response and advocacy for the chronically I'll and those in chronic pain. Thank you!
I absolutely feel this. With a nonverbal learning disability and chronic major depression and anxiety, a lot of folx don’t realize or acknowledge the legitimacy of what I’m constantly coping around until my symptoms show up glaringly obvious. I’m sorry that people are so awful to you.
Hey Jo! I just wanted to say thank you for this video. I am also chronically ill and I 100% understand not being taken seriously by people or doctors. It's a really awful situation and your videos are really helpful to me. It's really amazing to see someone who is as open as you are. I get so excited when you have a new video out. Just wanted you to know that you really make a difference to me xx Love from NZ!
YES! YES! SO MUCH YES!!!! Migraines since I was 7, Osteoarthritis for 18 years, EDS (undiagnosed because my 3 medical doctors just wave me off when I mention it). And now we can’t get pain medication!!! You have every right to be mad/upset/bothered. ❤️❤️❤️❤️❤️
I felt all of this so much! Seriously, you haven't lived until you're teaching half the doctors about your illness because it is taught so rarely in medical school. For me it's all invisible, and hard to diagnose and you can start to wonder if you're just crazy. people's general thoughts being "you got out of bed it can't be that bad" when it took every ounce of your being just to do that. chronic pain and illness are no joke. even without a diagnosis yet, being dismissed overall needs to stop. it only further delays diagnosis and possible treatment. thank you so much for speaking out about this Jo! ❤
You are seriously amazing. You have such a deep understand of your feelings and are so incredibly respectful of others feelings, even when that are extremely mean and not from a good place. I am the same age as you but I seriously look up to your level of understanding. As someone that struggles with mental illness I hope to one day be able to have your positivity and understanding. Also, I just moved from Colorado Springs a couple months ago and I so wish i could have had a friend like you there! I throughly enjoy watching your channel. It’s like a breath of fresh air. Keep doing you. ❤️
THIS IS SOOOO IMPORTANT!!!!!! It took me 3 years to be diagnosed with an autoimmune disease. I was bullied and had rumors spread about me in high school because I missed so much school, and the person who told me that they were being spread wouldn’t tell me what they were saying because she knew it would hurt me. I’ve had chronic debilitating migraines for 3 years, and the amount of people that have said “oh I get headaches too” or “you don’t look sick so you can’t be in that much pain” drives me crazy. It can be so frustrating to get people to understand and believe your pain. They don’t see the days where we can’t get out of bed because of pain and having zero energy to move. They don’t see the hospital visits, and the realistic fear of being in so much pain you think you’re dying. I’d never wish chronic pain and illness on anyone. So sad that people can be so judgmental. Sending love you’re way❤️
I’m sorry this happened :( I’ve also felt in a few instances in my life that I was making things up because other people weren’t taking it seriously, and that really sucks. It’s never fun to feel like you’re going crazy, especially when someone else is making you feel that way.
Thank you for addressing this! As someone with multiple chronic illnesses who often feels like I am faking it due to the opinion of other I appreciate you standing by the people on line who choose to share their lives online dealing with chronic pain and chronic illness.
YES YES YES!!!! I was diagnosed with spina bifida / tethered spinal cord at age 20, after a lifetime of nerve damage-related problems (neurogenic bowel and neurogenic bladder, leg weakness / problems etc.) and doctors telling me it was all in my head. 20 years of chronic back pain and 3 spinal cord surgeries later, I am accepting that I HAVE these illnesses and that I DIDN'T cause them. Thanks for speaking out Jo!!
I understand how you feel xx I was dismissed by doctors all the time until they found out I had water on the brain I was Called an attention seeker my mum called ILL! People don’t understand what we go through!
Good that you spoke up! And never take people seriously who think you're making things up just because you've decided to NOT be miserable and instead be a genuinely positive person who can take on a challenge. We're with you!
I’m so sorry, Kelleigh. I’ve been sick since age 11 (since it was similar to my mom’s symptoms, I got a diagnosis quickly, at least) and it’s been the bane of my existence. There’s a certain kind of cruelty to not just be sick but to then have salt put on the wound by people not believing you or blaming you for not coping well or whatever. I’m so sorry it’s been your experience as well. I hope you either have or will get some form of support, either in some understanding friends or from people online you network with. We become so isolated so easily, and it’s important to see that we’re not alone. If just pain patients had our own country, it’d be bigger than China, with more people. You’re not alone. I hope things get easier, or if they don’t, that you’ll have people to support you through it, because your pain is valid and you do not deserve to go through it alone.
Your pain is so valid you don’t deserve those mean comments the way you cope with your pain and share your story is sooo incredible thank you for sharing your story it shows people That they can be strong even when they feel their worst😊
I am sooo happy you talked about this. I understand what you are going through, I go through this myself. I have a scoliosis (bend in my spine), am hypermobile and have diabetes type 1. This is al not visible (exept my scoliosis a bit). People never take me seriously when I tell them how tired I am all the time or how in conflict I am with myself about working more hours in a week and also taking enough time to rest. It’s an ongoing battle. I am soooo thankfull that I have a boyfriend who understands me and also is my best friend because a lot of my “friends” dissapeared as soon as I started expressing my true feelings sometimes. Some people just arren’t interested when you open up, they just like you when you are high energy all the time. It’s really sad to me, I always try my best to listen to people and create relationships in wich both persons feel free to be true. Thanks for talking about this! I only found your channel a few days ago, but I already saw so many nice videos from you.
Jo you have been such a motivator for me talking about real life shit that goes on with chronic pain. My leg goes paralyzed when in a flare. I get migraines daily. I have depression and anxiety. I am so happy you are on here and it's crazy to me that people can be so rude. Love you chick you are truly the best
If you haven't lived it, you should trust the experiences of those who have... Thanks for sharing your experiences! Continue to take very good care of yourself!!!
So many people don't understand what it's like to live with chronic illness, especially when that illness isn't visible on the outside. Hang in there, and just know that you're better than the people who say these mean things.
i have chronic migraines (reason unknown as of yet) and i've only just found your channel and your videos have been so relatable and informational. what you said about how sometimes doctors don't even listen is so true and i'm so sorry you get comments and stuff like this.
Greetings from one of the people who had one of your videos pop up in their timeline because of TH-cam. You are right to have this bother you. Thank you for speaking up because it educates those of us who aren't usually in this community but TH-cam decided we should be.
It’s so refreshing to see/hear someone else stand up for all the wrong in this world. I won’t be the one to say to not let them get to you. It happens to the best of it. Just remember, you are you for a reason. You’ve been given a voice and a platform to share your experience. Kudos to you for standing up for you and so many others!
Mental health is one of the biggest examples of what happen when you’re suffering and no one can see it. I also look like a healthy twenty year old, and not even my doctors believe my pain. You even start believing that maybe you have to do something extreme so people starts seeing you, even when you’re fighting every second not to end things. Your channel makes me feel like I’m not alone in this journey, even if our situations are so far away from being similar. So thank you, for that.
Ah, the sorrows of having an "invisible illness". I've had this happen to me a lot. Nobody can tell I have lupus, chronic migraines, or a sleep disorder. Nobody can tell how fatigued I am, how nauseous I feel, how much effort and energy it requires to have even a 10-minute conversation. Because I'm walking, and talking, and have a smile on my face, they assume I can do anything. Even my doctors get annoyed that I cancel so many appointments, not understanding that due to my sleep disorder, it's almost impossible to wake up during business hours, without the alarm causing a migraine and feeling too sick to leave the house (even with a driver). I also have problems because my arms are really weak, so I need help lifting things. When I used to travel, I would ask the check-in girls at the airport to please lift my suitcase onto the ramp. I NEVER got a good response. They would glare at me as if I was a super diva who was treating them like servants. They would refuse to do it until I explained why I needed help. Same at the train station- the black employee assumed I was being racist. Why should I have to give my entire medical history to get a few seconds of assistance from a stranger? Why can't they give the benefit of the doubt, and assume I have a good reason for asking? Most people are just jerks. Sometimes I feel like wearing a T-shirt listing all my illnesses and their symptoms- maybe that would help me catch a break when I venture out into the cruel world. But I shouldn't have to do that. Anyway, hang in there, Jo. And don't let the ignorance of strangers get to you.
I’m so sorry. People always make it about them, when it’s not really a big deal if they’re healthy. It drives me nuts. I’ve been sick since I was 11, so now my illness could vote if it existed outside of me (if only it’d take me up on the offer!). I’ve seen the horrible sides of people they save for people they think are safe to kick around, and it’s... frustrating and depressing. I, I hope you have a support system, either online or in real life, with some people who get it either from empathy or living some version of this. I hate how it isolates us and makes us feel like we’re alone or weird or wrong for being ill. If just people with chronic pain had our own country, it’d have more people than China, isn’t that nuts? But because we become so isolated, we don’t get to realize that, and the power we have as a group. I kind of want to start a group, maybe on the Line app, for people with pain, so we can vent, share coping tips, that kind of thing. So many of us are going through this and we don’t need to deal with it by ourselves. Anyway, regardless, I truly wish you the best. Your pain is valid, and you don’t deserve to be treated like you have been.
@@SunflowerSpotlight Thank you, your message means so much because you're the only one who responded. I already have to deal with an invisible illness out in society, and then I end up feeling invisible here because my comments are usually ignored by everyone- even though this is supposed to be a supportive community (and yet I see other people getting support). So thank you for being the only person to hear me and see me, and show you care. I'm so sorry for what you've had to go through, too. I actually have zero emotional support in my life. I have no friends or family- not even internet friends. I've been meaning to find an online support group, but haven't had a chance to. I've been dealing with my illnesses all by myself, for years. It's so incredibly hard, I just feel like giving up so much of the time. I would love to join your group, if you start it. Could you please let me know? Or even if you don't get around to it, and you just want an internet friend? Please let me know, and take care 🌸
LittleLulubee Hey! It was nice to hear from ya! This is weird... I got an email notifying me about a reply from you, and I could read it there, but I don’t see it here? I guess it’s either just a glitch, or maybe Jo saw it and is concerned about the possibility of real world info being exchanged and took it down (which doesn’t seem likely at all) or it’s also possible you felt weird about reaching out, and if that’s the case, that’s totally fine and I get that. But, if it was a weird TH-cam fluke, I’d love to talk with you and be a net friend; it bugs me how hard being sick makes it to network as get a sense of community with people who get it. There’s an app called Line, and until I get more savvy on Discord, I think it’s a good way to go for people; it doesn’t have to be associated with a phone number or email address or your name, so it’s not very identifying if people don’t want it to be. If you look up PhoenixSphinx, that’s me. 😅 You could just message me and let me know it’s you. I don’t really have people in a pain group yet, since I just finally got fed up with things now, lol, but if you don’t mind just talking with me until I contact some other people, well, just having each other for support is better than nothing! And again, if I didn’t see your message because you changed your mind after posting, no worries, and sorry I didn’t get the hint! 😅 Regardless, I hope you can find support to make things a little easier. For a lot of people with chronic pain, modern medicine can’t really make things a lot better, but, at least with support, the isolation aspect loses some of its strength. It’s crazy what people can endure if they have friends by their side. I hope to hear from you, but either way, be well. 🌷
@@SunflowerSpotlight Thanks so much for writing back! I think it was just a TH-cam glitch. I've had that happen before, where it looks like there's no replies, but then I refresh the page and the replies appear again. Anyway, I will totally find you on Line! The only thing is I have a new smart phone but haven't hooked it up for service yet. It might be a month or two before it's hooked up. But as soon as I have that taken care, I'll get in touch, ok? I would love to be online buddies with you, yay!! 😊🌸 Talk to you then, take care!
Some people are so judgmental and awful - invisible illnesses are so difficult to deal with already, without someone being so insulting... ugh. Keep on keepin on Jo. Sending you love from my Pack and I ❤🐶
Thank you for addressing this issue. I have chronic migraines as well as some other issues but look “healthy “. It’s really frustrating and just makes me angry the way lots of people treat me as well as my friends that also have these issues. Please keep helping us support each other. Thank you.
Jo, Jo, Jo, Jo...As if you don't have enough to put up with!! What you have said lo these many months have done nothing but make me want to reach out to you. To grab you! To hold you! To protect you!! (I figure, at least, Brian has got a pretty good handle on that, however.) But alas!! Despite his or your parents or your friends intentions and my very, very imagined intentions, we cannot protect you from that woman and her misguided thoughts and ways. For that, I am sorry!! But those people, read her, are severely shriveled lost people who need to make others feel bad so that they/she can feel good. You are enough!! You are good!! You are cool!! You are beautiful!! You are as close to perfect as any of us can be! Smile and know that!!
I’m so sorry you had to make this video but glad you did. Maybe the good that will come from this whole social media universe is that we will SEE into our judgmental hearts and maybe change. I know your struggle somewhat. I get really upset with the “know it all” vibe. You are doing great things despite the struggle and for that I thank you.
Jo, you’re not alone. As you know I’m a bilateral BKA and from the waist up you’d never know I have a problem. But I too get painted with the same brush as you. This is one reason I generally refrain from commenting on U-tube, you being the one exception. As always hang in there and don’t let them get you down.
I'm so sorry that you have to deal with people like that. But thank you so much for being brave enough to talk about it. I am one of those new people you talked about in the video, and I am so loving your videos and positivity. I have an "invisible disability" and am way too familiar with your story. I cannot count how many times people assume that I am faking it or being dramatic. I have had doctors tell me this as well. I think that women are treated this way more than men when it comes to illness, especially if no one can see it. So good for you for being brave enough to confront that kind of thinking! Again, I am absolutely loving you and your videos, keep on keepin on!
Jo I totally understand how you feel. People have said to me over the years that with my disability it's mind over matter. If I put more effort into my life, the limitations I have will fall away and be "normal"... how about no... no one will ever understand what I go through and I hope that they never will... I thank you for having the courage to hit the nail on the head...
I get what you mean about being relived after getting a diagnoses. In deal with constant pain. People tell me I have growing pains. The doctor didn't really look into it. Its so frustrating. It might be something that is easily solved. Sometimes I even doubt it. I understand what your saying. Thank you for putting it into words and risk more bad comments.
I complete understand and struggle with where you care coming from. I look like an "able bodied" 21 year old women but I struggle with a long list of invisible illness and I am struggling to gain accommodations at my workplace because I "look and sound ok" We all have to stick together on these things!
Jo, you are so not alone in this & for that comment to have hit you like that makes TOTAL sense to me. Even just hearing you talk about it & how it affected you made me so goddamn furious. It took 17yrs for me to get dx with Ehlers-Danlos Syndrome, and a further few years before my Dysautonomia & Gastroparesis were diagnosed. I spent months, as a teenager, trying desperately to get help for what was absolutely Anorexia Nervosa, but was constantly denied treatment because I wasn't "underweight enough" to qualify for an AN dx -- and because of that, drs accused me of "pretending to be sick". Since my dx, I've STILL had to deal with COUNTLESS medical professionals who didn't believe that my chronic pain was as bad as it is, simply because I "present well". I'm so fortunate to have a GP who gets it, but I'm so traumatised that I've had panic attacks in the lead-up to appointments with him, even though I know logically that he has my back. And that's just medical professionals -- people with actual training & qualifications. Everyday people have been even worse. This shit causes real harm to people like us and we deserve to have that experience acknowledged & validated. You're absolutely not alone 💖
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Doctors will call you crazy until they find the problem: then they ask why you waited so long for treatment.
My wife was called crazy before be her EDS diagnosis. My brain tomorrow reduced (not eliminated) how much I was called crazy. EDS is nice because people don't generally have preconceived notions about it
I’m sorry people can be so toxic. Keep being you!! :)
Thank you I have to fight for me with my chronic illness
It's crazy how rude and mean people are on the internet but in person everyone is nice ....
Cowards.....
I think people forget that they're only seeing what the creator wants them to see. Of course they're not going to see people laying around fighting migraines or dealing with other ailments because that would not be good content. And that, to me, would seem more like it was fishing for attention and sympathy rather than just speaking openly about a condition. People are just.......strange.
Not only that but most people who suffer with invisible illnesses have been conditioned to suck it up and to feel shame. For most of us it's a mortifying thought to show ourselves at our worst.
Yep, a 2 hour video of someone lying in a bed occasionally groaning with hot/cold packs on hardly is a video of the century, which is sadly often the reality.
@AsHLiegH-MaRie HoPe some days you win with a shower
if people see your complaing to much they will call you a baby and an attention seeker, but if your always appear to be happy they think you should be less happy and show people your pain. You cant win. I have never given a crap what other people besides my loved ones think of me, and never explain my self. I have had strangers demanding me to explain myself many times. Why do I have a smile on my face if I am in pain. Why am I parking in a disabled parking space if I am abeled body, or they think I am to young to be disabled. They dont know what an invisible disability is.
@@lizkimber and how do you hold the camera? My days like that I am lucky to find the ice packs, the phone or camera are not on my mind at all!
The best thing I read that I think is appropriate is - I don’t look sick and you don’t look stupid, looks can be deceiving.
😂😂😂😂😂😂 Great way of putting it😂😂😂
YES!YES!!YES!!!
Bingo. Because on the bad days, they don’t see you, because you can’t get out of bed and don’t have energy to shower! The idea of what life is truly like would just boggle their minds and it seems they can’t process it. It’s very frustrating.
Literally love that
Sorry you had to put up with that crap. I feel it's always good to vent!!
Thanks for being willing to listen to my venting, Leon!! Usually I'd say "its alright!" but this is the one time I think I'll just say its really not alright - I'm honestly okay, but felt the need to vent and let it out....so thanks again. 😉
@@FootlessJo I know you have heard it enough today but once more sorry someone turned their toxicity towards you. You are brave and you choosing to do the surgery shows that. Some going through the same thing may not have been able to bring themselves to terms with having elective surgery despite pain relief but would in turn suffer bc they were afraid of the procedure. Your journey may even help people face that fear and have it done and realize that it was worth it so kudos! Ignore naysayers and live life for Jo and no one else. You're happy and that's all that matters. You're somewhat if not completely paid free and your life is better. Your life. Screw them. I admire you
Ahh so sorry Jo some people can be so nasty I am living with cronic pain and get comments about it. I try to think that when people are being like that it means they r lucky enough to not of experienced it although that is not an excuse you should still try to be understanding. ❤️
Ditto. I developed the same illness my mom has, so I was diagnosed pretty early, and I kept getting, “But you’re so young! That’s an older person illness. You must be mistaken.” Well, let me phone my specialist and enlighten them that they’re wrong. 🙄
Do you also get people telling you random stuff they say should fix you? Like, “Go on the keto diet, it’s great for inflammation and you’ll be set in a few weeks.” Or, “A green juice cleanse every month will change your life.” I know it’s well meaning, but... if it was that simple, I’d not have tangoed with this so long that my illness would be able to vote, if it existed separately than me! 😂
Hang in there; it’s highly unlikely, but maybe these people will learn, in time.
I can’t express how powerful your words are. You found the words I’ve never been able to find. I’ve had chronic pain and migraines for 20 years. I am constantly fighting to make people and doctors believe me. Thanks for speaking out
Ditto! I literally crying from just... It's so relatable, and it's...
This shouldn't be the way it is. These stories should be rare, not the norm.
This topic brings to my mind the old saying, "don't judge a person until you've walked a mile in their shoes". I have to admit that I wish that could happen, sometimes in a vindictive way with some people.
Yeah, I do admit sometimes I think about how some people who made light of the situation would crumple and go to the ER after ten minutes. 😅 It’s like telling a depressed person to just be happy, which is also completely ridiculous and scarily common.
I understand your frustration. I hope venting helps. I'm happy to listen. I hope this deters the people who say things like that but actually aren't jerks. People today just say things without thinking of how others feel or without thinking of how credible the words coming out of their own mouth even are. Sometimes people speak just to hear themselves too. Don't forget some people are just jerks too. We can't all be nice people. And we can't all be nice all the time either. I've said hurtful things I sure do regret. It's still frustrating though when people make such personal attacks. It seems like they make these comments as if you don't actually read them and only other commenters are seeing them so they think they are basically whispering behind your back. It's cowardly actually.
Big, *big* hugs, Jo. ❤️ I'm so sorry you have to deal with these people.
Me: *Goes to hospital in intense, obvious pain*
Doctor: "I see you have a history of mental illness, it's probably just anxiety"
Thanks. Appreciate it. Good job.
ZombieDoll I get that any time I go to the ER for something. I literally sliced my finger down to the bone and they didn’t even want to give me stitches, they told me I was overreacting and put a bandaid on it.
oof. I've been there, I was dealing with weird symptoms for months, fatigue, tingling legs, shortness of breath etc. And because I've been diagnosed with general anxiety allllll the doctors I saw were just like oh thats anxiety. And those can certainly be symptoms of anxiety, but my anxiety had never presented in that way before. I finally found a doctor who agreed to do like, an extremely simple blood test and turns out I was severely anemic. Took me five months so find a doctor who would be willing to order one, very basic blood test.
@@ljean5471 I had/have similar symptoms, as well as chest pain and palpitations. It wasn't until a friend was like "Hey this sounds like the thing that I have" and I went to my doctor and she was like yeah, makes sense. Then finally, 6 years later I get a diagnosis of POTS, which explains the chest pain, palpitations, fainting, etc. Once I had the diagnosis life got easier because I could point to it and say this is what's wrong. Until I got kidney stones and a kidney infection and doctors were like "Are you sure it's not just your period?" Which resulted in mu using her mum voice on the doctor
Laura Blatherwick I have iron deficiency anemia and yeah, it’s really weird the seemingly random symptoms. We’d have had no clue if my mom didn’t have it as well. And I still get people telling me, “oh eat this, it has a lot of iron, you’ll be fixed.” Wellll since my body can’t absorb iron correctly, it won’t do any good, but thanks for thinking it’s that simple, and I could figure out maybe higher intake would help! I know sometimes people aren’t trying to be jerks when they say condescending stuff like that, but truly, if it was so simple, we wouldn’t NEED doctors and we wouldn’t have chronic conditions because we’d just fix what was wrong! It’s like telling a depressed person to just choose to be happy instead. It’s condescending and damaging and not helpful in any way, shape, or form. I really hope you’ve gotten a good doctor and treatment plan; I’m getting retested next week because I’m having the restless leg issues and taking weird extra little breaths, and my lips are super pale and tinged with blue when I wake up. Not ideal. If the test isn’t clear one more time (I also have Lupus and some autoimmune reactions can artificially inflate some of the numbers we’re looking at) I’m going to need more in-depth blood work, so, here’s hoping. I hope your medical team stays on top of it, so you never get that ill from this again. Be well. 🌷
@@SunflowerSpotlight I hope you can find some good answers/solutions, chronic health stuff is never fun, also new symptoms should never be taken lightly, by patient or doctor, so good you're staying on top of it and I hope you find some relief, and don't have to deal with people talking to you like you don't understand your own body
"That's exposing a vulnerability.... Please don't hurt me with it." I felt that statement on so many levels, that feeling of fear for being so raw and open with people was put into words so eloquently, Jo. So much respect for you, dude! Keep on shining
I've never understood why some people feel the need to pressure others into justifying their health, mental or physical. I have several mental illnesses, and I absolutely feel you on the diagnosis thing you mentioned... Getting my diagnoses was one of the scariest things I've ever been told, but it was also extremely validating. Keep on keeping on, you've got a new subscriber here, from Colorado :)
You inspire me. Chronic pain is incredibly frustrating by itself. I have been "happy and healthy" for my whole life and recently I've been having stomach problems that solutions keep getting put off and so being new to being in pain every day. But I'm happy you are here. Thank you for brightening my day today. Keep fighting girl. We are here for you
I am so sorry Jo, even as a able bodied person I've experienced people not believing me, and it hurt, I needed their help to resolve a situation and they made it very clear that they thought I was making up a story even though i was telling the complete and honest truth, and it hurts to watch others belittle people for things they know nothing about. Stay strong Jo, we'll always be here to support you!
As a chronic pain sufferer - PREACH IT SISTER!!! ❤️
THANK YOU for saying all of this!! I live with chronic pain and illness and this is all so real for me, it's nice to see others feeling the same way (though I wish we didn't have to deal with that crap at all). Love your channel and I'm so glad I found it!
I understand this honestly, I've delt with severe depression for a while now and theres people that think I'm making it up or lying, or don't realize how bad it really is and they think that I'm exaggerating when I'm really not. When they see me or hear from me its moments where I'm feeling okay and doing better, but they aren't around for the times I'm not. It makes it hard for me to talk to people about it because of this, they just see me as a happy person with nothing wrong. It sucks you gotta deal with this too, some people just don't understand.
From someone who has a benign tumor in my knee and took months to figure it out, thank you so much! I appreciate you and we support you!
Having an invisible illness doesn’t mean you should be treated like your symptoms are non existent. It is not a fair “game”. There is a lot of issues with people and the medical community. You don’t need to justify yourself. Screw them. I learned that people that care about me don’t question me struggling and they are understanding if I feel ready to explain myself. I appreciate you talking about Jaqui she was a big influence for the EDS community( which I am a part of) but also the chronic illness community as a whole. And those that judge are toxic and those that also have chronic illness that judge are just here for the “competitiveness” love you Jo. You are you and I appreciate you.
I’m so sorry Jo, I really really am. You’re not alone, we are here to support you. And to anyone else who sees this comment just know that you are VALID! And we’ve got each other to lean on. You don’t have to struggle alone. ❤️ much love to all who need it, and much love to you Jo ❤️❤️❤️❤️❤️
Thank you. That was really compassionate of you. ❤
I admire your character so much Jo! Not only are you such a advocate for those with chronic pain (fortunately I do not experience), but you are such a well rounded, considerate, empathetic, understanding.
I felt compelled to self reflect after watching this video. I can find myself being somewhat of a hypochondriac. Because I have taken for granted the ease of which others accept my ailments and injuries as legitimate.
Thank you for this video and thank you for being you!
Wow, just wow. Obviously that person is completely ignorant.
you’re one of the best, strongest, and smartest youtubers on this platform.❤️
katie :/ well said! You help so many and for those of us that need it please remember how appreciated you are! X
I suffer from chronic pain. Most people or doctors don’t believe me. They think I just want pain killers. So frustrating! So sorry Jo!
Patty Chavez!
Stay strong darl.
love
Steve Holliday
My wife and I have EDS and countless related illnesses, including intractable pain. We both know exactly what you're going through. You're not alone, thank you for speaking out
Jo, you are awesome. As a parent of a kid with special needs who doesn't "look" like she does I've dealt with this before too. It sucks. Vent away and educate folks Jo, you rock.
Footless Jo!
When a person with deep empathy, such as yourself, comes across a person completely lacking in empathy then the result is terrible pain on the part of the empathic person.
This is my feeling on the matter.
Getting a glimpse of another person's soul & seeing only the Abyss...
Painful.
Meanwhile - Give thanx for who & how you are.
Your capability of love & joy in life are gifts both to yourself & to those you communicate with.
love
Steve Holliday
From a fellow Jo (from N.Ireland ☘️) I am sooo very sorry for all the negative comments u must receive on a daily/regular basis 😔 as a fellow mental health warrior I am truly soooo very encouraged and grateful for ur videos, vulnerability and authenticity!! What u are giving voice to is making a difference! What you have been saying on your journey is sooo valid and valuable and I truly am so very thankful to have come across ur feed (not long before ur trip here!) and I know I can’t take away the negative comments but together we can make a difference in a positive way - one honest, real, very valid & valued truth at a time 🥰❤️😘 know if u ever visit this part of the world again u have a big Irish thank u awaiting!! 🥰🥰❤️❤️❤️
You really are amazing in the fact that you do manage to get out of bed everyday and im so proud that you have managed to find reasons to stay here and not leave this world. anyone who questions if someone has a mental health condition when you are telling them that you have a physical illness is sick.
You give off the vibe of being a awesome, intelligent, genuine, honest, brave person!!!!! Keep being authentic you! Because u inspire me everyday!
Aww goodness what a kind thing to say! Thank you so much!!!
Omg my heart hurts for this. I am grateful though that this video is not another setback in your health because you are amazing and doesn’t deserve all of this! From a chronic to another, you are SO amazing. Sending all my love and thanks for putting a light on this matter!
This video hit real close to home for me. I have Cystic Fibrosis and am, admittedly, very mobile and active for some with that diagnosis. It’s a blessing and a curse. On the one hand, I get to live a mostly normal life (playing sports, attending college, etc.) but on the other hand, when I actually do have a flare or just feel genuinely crappy to the point that I have to slow down and take time to recover, I am immediately labeled as lazy or unmotivated. And if I explain that it’s because I have this serious illness that literally kills people so yeah, sometimes I need to take a nap instead of go out to dinner, suddenly I’m such an attention seeker and how can I be sick if I look perfectly healthy. Doctors have even put off giving me the round of antibiotics I’m asking for because my lung function ONLY dropped 10% but I haven’t lost weight and my blood oxygen is normal (in other words, I look really healthy).
And there was a brief period a few years ago where I made some TH-cam videos about my experience with CF, and as soon as the comments about wanting attention or making things up started coming in, in just stopped posting. It wasn’t worth it. I spent my whole life trying to educate people on my illness and I just got tired of it. It wasn’t worth it anymore.
But I love your channel and literally cannot fathom how people can watch you and leave anything but nice comments. You’re just too upbeat and fun to watch. Guess they can’t handle the positivity (because all sick people are supposed to be miserable and grouchy, right?)
Taylor Mattern oh oh oh :((((( you r describing me dear ...... so difficult ......
I had the same problem at the beginning of my pancreatitis. One hospital told me not to come back because I was wasting my time and there. Now if I go to the hospital i am seen as a drug seeker. So I have to go through my dr if I need to go to the hospital. Then while I have a bed on a floor I have problems. The nurse don't believe I'm in pain. I feel your pain. Take it on day at I time
That's terrible Kurtis! I'm really sorry!
And what do you want to bet that all along the walls in the hospital and on the walls in the units, they have those signs stating what the "core values" are for the hospital. Getting 'ATTITUDE" from nurses certainly does not fall in line with the typical core values hospitals would like you to believe they ascribe to.
@@olliojenarter it happens more than you think. But if it there own kind it's a different story
I’ve always tried my best to avoid the hospital because of that happening to so many people. My Dad’s a doctor, so hopefully his sway would help protect me a bit, but I’ve never wanted to put that to the test. I’ve been sick since I was 11, and I was always really scared of having to go. Just my age makes people think I’m not being honest, or just wanting drugs to sell to “friends,” or something. I remember being in so much pain that I couldn’t speak. I thought I was speaking, but my parents couldn’t understand what I was saying. I was so frustrated because it was so hard to try to talk. We thought my appendix may have burst. Even then, having vomited from pain and fighting to not black out, I told them I’d refuse to go to the hospital if they called an ambulance. I knew one “wrong,” move and I’d be labeled a drug seeker until I moved.
I’m so sorry that happened to you. It’s horribly unfair. And now with the backlash against the opiate crisis, a lot of people who are just trying to exist are getting pulled into the crossfire. I know of a few people who committed suicide not too long after the law changed in my state; they were forcibly tapered, their pain was horrible, they lost their jobs because they couldn’t work like they had been, and they were going to lose their houses. All of it caused one of their marriages to snap. And that was just... it.
I hope one day we stop demonizing people for the illnesses they have, and instead greet them as equals worthy of respect and empathy, but I know by then so much more damage will have been done. I hope you have a support system now. I know it may be trickier, due to the demographics of chronic pain, but I still hope you’ve got people either IRL or online who can help when things get tough.
@@SunflowerSpotlight I have a support system, but no ones knows the pain I'm in. For me that's more frustrating part. To fully understand my chronic illness which chronic pancreatitis it help to know what kind of pain I feel. Since I not a woman I can't use child birth as a knowen pain. I have read and heard that women would rather be in child birth than have pancreas pain. Thank you for understanding what I go through on a regular basis. If we don't wake up soon as society we will not be able to fix this problem and the stats of chronic illness and suicide the number are going to be so high suicide will be the only answy. I do not know why I'm alive other than my wife making me fight every day. I also have 4 kids from two different marriages. I also have 120lbs king German Shepherd who also needs me daily. I have been out of work since September 1 last year. I am getting a long term disability. I getting a pain pump to help me win my battle but I have been fighting for 10yrs but the damage is done. Good luck in the journey that we call life.
Thank you SO MUCH for making this video. This kind of thing has to be spoken about! Sending you love and know that you are heard and believed xxx
I have many chronic illnesses as well as a very long medical history. I also am still in the process of getting answers for my chronic pain. I agree 10,000% with everything you said I couldn't have said it better.
Wow! You do not have that syndrome! Your videos are intelligent and quite fun to view. You take the good with the bad in your life. You are always real with us. I am guessing even pet videos will get their weird viewer, now and again. Stay calm and stay safe⚘
Uuuugggghhhhh I relate to this SO MUCH. I have a circadian rhythm disorder which makes it impossible for me to go to bed or wake up at normal times most of the time, and I had a doctor for YEARS give me a bunch of new antidepressants, basically tell me to “try harder”, and NEVER DO A SLEEP STUDY FOR SIX YEARS just for me to do one and find out that I was waking up every two minutes all night, and then find out my melatonin production was way off.
While I was suffering and “trying harder” and blaming myself, my last year of school was ruined by a school administrator who called me “disingenuous”, refused to give me medical accommodation, interrogated me about my symptoms and diagnosis, gave me panic attacks, and ruined my marks and threatened my future. And he was just the worst example. Even people in my own family don’t believe me or don’t understand. It is SO soul destroying when you think that you’re just broken and lazy and you’re never going to thrive and everyone around you is telling you that that is right, even when they supposedly care about you.
People who haven’t been through it should mind their own damn business and find another freaking hill to die on, because this one is just inevitably harmful and destructive.
Thank you for talking about this. It's exactly what I needed today.
I'm currently trying to figure out why I fall asleep constantly. It's to the point where it's at dangerous times, like driving.
I've been managing it so no one can tell how bad it really is, so they all assume it's not that bad.
This helped just to hear others struggling similarly because of their ability to not "seem disabled".
So thank you.
THANK YOU, THANK YOU, THANK YOU, THANK YOU, THANK YOU, THANK YOU, THANK YOU, for making this video. Please don't ever wonder why us "normal, but ill folks, love you so much! Helen of Troy, Joan of Ark, Rosa Parks, etc., so join the crowd of STRONG women who try to make a dent in this world! Blessings, Grannie Annie from Maine
This is exactly why I love your channel and your content because I relate so much and I love to see you be honest with everything. My husband was in the Marines when I began having some very scary migraine episodes, I've had chronic migraines for most of my life, but this pain was like no other pain i'd felt before in my skull. There came a day where I was home alone, and an episode hit, I lost my vision, I was screaming in pain, puking from it, crawling on all fours around my empty house trying to find my phone to call 911. It lasted for 3 hours.
The rest of the day I was unable to focus, to the point it scared me, I was losing memory and freaking my husband out when he was starting to realize I was losing instant memory. Then that night I began losing feeling in the left side of my body, and then started the aggressive shakes I had no control over. My husband rushed me to the ER on base, where they sat me down and laughed at me literally laughed at me, then refused me treatment, no one did scans, no one checked me out, they put me in a bed for 3 hours and then told me I was wasting a bed and moved me to sit in the waiting room.
After everything, they gave me a bottle of ibuprofen and told me not to misuse ER services and gave me a PAMPHLET that listed the reasons to go to the ER which listed most of my symptoms! The nurse told me I probably had a little headache not even a migraine, and that maybe I was getting my period and to go home and take some ibuprofen. It was terrifying and humiliating and thank goodness it didn't end up being something serious with my brain. I got to my PCM and she checked me out thankfully, I'm on medications now to control it but it has changed the way I have to live my day to day life.
People don't realize how much a diagnosis is needed for so many reasons, and that it's not as simple as going to see one doctor, you usually have to find multiple doctors because the majority will most likely not listen or take you seriously.
I’m fairly new to your channel and I just want to express how much I appreciate you speaking out about this. My younger sister deals with an invisible illness as well (Ehlers- Danilo’s Syndrome) and it hurts so much when people think that her pain is fake or that she must be lazy or silly to be spending so much time out of school to take care of herself. Thank you for spreading awareness!
PREACH! Wow wow wow. Thank you for sharing, I can relate to the not feeling valid because I don't have an official diagnosis. For years my family thought I was 'the kid who cried wolf' and I stopped believing anything was wrong with me. This led to more issues. THANK YOU for being open with your story. You're inspiring me to put my story out there.
I am SO GLAD you made this video.. i connected so much to everything you said. Lately at lest, ive felt this way. This whole year ive had such a BAD pain in my right wrist, ive never had any trama of any kind to my wrist. Punch some walls as a teen, i draw and color a lot, and I'm a waitress. When i tell people im in crippling pain over just grabbing bread off the shelf, they look at me, using my hand all day like "well your still using your hand and wrist, it must not be that bad." No it is, its constant, some times are better than others, but even right now, i feel a pain in the middle of my palm.. still using my hand.. because i have to..
I have chiari, too, and same experience as you. Both terrifying and liberating to find out the source of my issues. I'm sorry you're dealing with all that you are, but I'm so glad to see your sense of humor (sarcasm is awesome), and as upbeat as you can, but allow yourself to be down when you're down.
Jo you hit this one so dead on. I have had anxiety and depression since I was in my teens but did not get diagnosed until I was 23. I am now a few weeks away from 47 (holy cow) but I have spent since I was 23 listening to people say "why are you anxious there's nothing wrong, you just want attention" I have let fear dominate most of my adult life bc I was never understood it validated. Never told everything will be ok, only that it was stupid to be scared when there's nothing wrong. It's not chronic pain but I understand COMPLETELY why this gets under your skin. Love you Jo..... keep hanging in there girl you got this!!! Thank you for bringing awareness to those who may not understand how much comments like that can hurt someone!!!❤️❤️❤️
I am sorry hope you feel better
I totally understand what you are going through Jo. I have been dealing with sever knee pain for the past six months I had gotten it x-rayed and the doctors saw nothing and counted it of as growing pain and refused to take me seriously even though I could barely walk on it. I finally got answers 3 weeks ago and found out that it was an easy fix just a dislocated knee cap. My younger sister's friend told me time and time again that I was faking it because I didn't look like it was that bad.
This channel and multiple others have helped me to be a lot more aware of the whole disabled community etc. Thank you Jo!
I understand your frustration. It’s hard when people just do not believe you and don’t want to believe you. Just because you don’t always show how you feel doesn’t mean it doesn’t exist. I have had bad experiences with doctors before and good ones. But I still feel hurt in a way at times about what one doctor said to me right to my face when I was a kid.
Thank you so much for making this video and talking about it. I'm so sorry that you've also had to go through this too. It's so hurtful when people don't understand that you're not lying. You're telling the truth, but they don't believe it. It doesn't fit into their mental box, it's something they haven't seen, thus they find it to be fake. The doctor's appointments that went that way still hurt, and when I see new doctors for the first time I'm always scared. Nobody should need to feel scared that their doctor won't listen to them; but it can happen way too often for me to fully feel safe.
Unfortunately that forum was one of the top results when she passed away. That really hurt. I've also gone through those phases of self-denial; Is it all in my head? Am I causing this? No. Of course during a flare up I'll be reminded of that; but sometimes it's easy to think that when you are having a good day. A good day doesn't make you completely healthy. A good day is great! It doesn't mean that your illnesses aren't valid. An hour, day, week, month, etc. without as many symptoms doesn't make everything go away. People should know that saying things like that is harmful. Doctors and other medical professionals saying things like that is extremely harmful.
I'm very thankful for the kind doctors I regularly see. I'm very thankful that after two appointments of me being very nervous, my new neurologist listens to what I have to say and although he hasn't seen it before, he treats my symptoms as valid. I remember my nuro-ophthalmologist making sure to assure me that I wasn't "crazy," and how she assures everyone of this. My cardiologist and his assistant have always been very kind and knowledgeable. My primary PA-C has never once made me feel unheard, she understands and cares. My ortho makes sure that any treatments or tests will be in my best interest. My urologist is one of the most calming people I've met. (Which is good, because my gosh I was nervous for that first appointment and the urodynamics study. Not as scary because they were so nice!) My psychologist is just such a nice guy to talk to! Still need to find a gastro that won't make me cry, and an allergist, but these gems of doctors exist. To the people still struggling to be acknowledged and heard; I'm sending all of the internet huggles. I hope things will be much easier for you soon! You are valid. Your life matters. Your happiness matters. Your comfort matters. You matter!
Again, thank you for making this video and I hope that you have a wonderful day with lots of puppy kisses. :)
I believe whole heatedly that you are the MOST POSITIVE CHRONIC PAIN experiencing person that I have ever seen!!! I am a chronic pain survivor. I call it that because I have survived. I exist to the best of my ability I have had to be my own best advocate in my medical journey. I too hate the opiate highway that exists through most of the country these days. I am unfortunately forced to deal with it because my state is not open to alternative methods or I would definitely be using those methods. Sorry, I’m getting way too off base here, but I tend to when I’m passionate about a subject like you are too.😘 stay true to yourself & let the rest fall to the side of your highway Jo.... love❤️❤️❤️
Thank you, honestly more people need to hear this, I feel crazy on a daily basis with chronic illness and I'm glad we're not alone. we need a little more understanding and empathy in this world
I watched my mother go through a very similar situation before she was diagnosed with fibromyalgia after years of telling her doctors that she has chronic pain and fatigue. This video and message is so important and hit so close to home for me and I hope that people learn that this kind of thing happens WAY more often than it should. People like you speaking out is so important to ending attitudes like this. Thank you Jo!
Thanks for remembering Chronically Jacquie, she was a special spirit and I'm so grateful she shared her life with us, it really helped! ❤️🙏💞
You are such a bright spot in this world. You keep doing you, Jo! I admire you for you. ❤
My husband and are going threw the same thing it's hard to keep calm cause whatever we try to improve that chronic pain or sickness is . Yea we look ok but the IS STILL THERE PEOPLE!
I hear your voice, and feel your pain. I am sorry this world can be so cruel. Stay brave 🏵️
I was heartbroken when Jaq passed away. She touched so many people. I still think about her often and am so, so sad for Judd and Harlow.
I am in your chronic pain community. People who say things like what you experienced are ignorant!! It makes me so sad to see you this upset. I know you realize this is part of being a TH-cam vlogger. You did the best thing.... just block them. You are providing such a great insight into what it is like as an amputee and a chronic pain warrior. Take a deep breath and “consider the source” as my Mom would say 💗. Keep on keeping on. There will always be ignorant, ugly people in the world. Please, please don’t let it get to you. You are an inspiration to so many. Sending you a special hug 🤗
Important commentary. I have a chronic disease with observable impact on my walking and strength but still I have people say they can't believe I'm I'll because I don't look sick. It is such an affront when your life is altered and your experience is minimized. I appreciate your vehement response and advocacy for the chronically I'll and those in chronic pain. Thank you!
Some people are just plain jerks. The real gems are the ones who are able to power through it. Love you and your vids!
Thanks for your lovely encouragement, Celeste 😊
I absolutely feel this. With a nonverbal learning disability and chronic major depression and anxiety, a lot of folx don’t realize or acknowledge the legitimacy of what I’m constantly coping around until my symptoms show up glaringly obvious. I’m sorry that people are so awful to you.
Hey Jo! I just wanted to say thank you for this video. I am also chronically ill and I 100% understand not being taken seriously by people or doctors. It's a really awful situation and your videos are really helpful to me. It's really amazing to see someone who is as open as you are. I get so excited when you have a new video out. Just wanted you to know that you really make a difference to me xx Love from NZ!
YES! YES! SO MUCH YES!!!! Migraines since I was 7, Osteoarthritis for 18 years, EDS (undiagnosed because my 3 medical doctors just wave me off when I mention it). And now we can’t get pain medication!!! You have every right to be mad/upset/bothered. ❤️❤️❤️❤️❤️
I felt all of this so much! Seriously, you haven't lived until you're teaching half the doctors about your illness because it is taught so rarely in medical school. For me it's all invisible, and hard to diagnose and you can start to wonder if you're just crazy. people's general thoughts being "you got out of bed it can't be that bad" when it took every ounce of your being just to do that. chronic pain and illness are no joke. even without a diagnosis yet, being dismissed overall needs to stop. it only further delays diagnosis and possible treatment. thank you so much for speaking out about this Jo! ❤
You are seriously amazing. You have such a deep understand of your feelings and are so incredibly respectful of others feelings, even when that are extremely mean and not from a good place. I am the same age as you but I seriously look up to your level of understanding. As someone that struggles with mental illness I hope to one day be able to have your positivity and understanding. Also, I just moved from Colorado Springs a couple months ago and I so wish i could have had a friend like you there! I throughly enjoy watching your channel. It’s like a breath of fresh air. Keep doing you. ❤️
THIS IS SOOOO IMPORTANT!!!!!! It took me 3 years to be diagnosed with an autoimmune disease. I was bullied and had rumors spread about me in high school because I missed so much school, and the person who told me that they were being spread wouldn’t tell me what they were saying because she knew it would hurt me. I’ve had chronic debilitating migraines for 3 years, and the amount of people that have said “oh I get headaches too” or “you don’t look sick so you can’t be in that much pain” drives me crazy. It can be so frustrating to get people to understand and believe your pain. They don’t see the days where we can’t get out of bed because of pain and having zero energy to move. They don’t see the hospital visits, and the realistic fear of being in so much pain you think you’re dying. I’d never wish chronic pain and illness on anyone. So sad that people can be so judgmental. Sending love you’re way❤️
I’m sorry this happened :( I’ve also felt in a few instances in my life that I was making things up because other people weren’t taking it seriously, and that really sucks. It’s never fun to feel like you’re going crazy, especially when someone else is making you feel that way.
Thank you for addressing this! As someone with multiple chronic illnesses who often feels like I am faking it due to the opinion of other I appreciate you standing by the people on line who choose to share their lives online dealing with chronic pain and chronic illness.
YES YES YES!!!! I was diagnosed with spina bifida / tethered spinal cord at age 20, after a lifetime of nerve damage-related problems (neurogenic bowel and neurogenic bladder, leg weakness / problems etc.) and doctors telling me it was all in my head. 20 years of chronic back pain and 3 spinal cord surgeries later, I am accepting that I HAVE these illnesses and that I DIDN'T cause them. Thanks for speaking out Jo!!
I understand how you feel xx I was dismissed by doctors all the time until they found out I had water on the brain I was
Called an attention seeker my mum called ILL! People don’t understand what we go through!
sorry to hear this jo ignore them❤️❤️
People sometimes “give off the vibe” of being ignorant and uneducated... I love ya Jo! You’re awesome!
Anita Vaughn haha this made me smile! 😊💜 sending love right back to you & yours!
Good that you spoke up! And never take people seriously who think you're making things up just because you've decided to NOT be miserable and instead be a genuinely positive person who can take on a challenge. We're with you!
As another chronically ill, chronic pain person...I am so sorry. You are an inspiration to everyone!
I have experienced this as well. You are so brave! Thanks for bringing this difficult subject up!
I suffer from chronic pain and chronic fatigue which to everyone else means I'm just lazy, so as best as I can, I understand 💜
I’m so sorry, Kelleigh. I’ve been sick since age 11 (since it was similar to my mom’s symptoms, I got a diagnosis quickly, at least) and it’s been the bane of my existence. There’s a certain kind of cruelty to not just be sick but to then have salt put on the wound by people not believing you or blaming you for not coping well or whatever. I’m so sorry it’s been your experience as well. I hope you either have or will get some form of support, either in some understanding friends or from people online you network with. We become so isolated so easily, and it’s important to see that we’re not alone. If just pain patients had our own country, it’d be bigger than China, with more people. You’re not alone. I hope things get easier, or if they don’t, that you’ll have people to support you through it, because your pain is valid and you do not deserve to go through it alone.
Your pain is so valid you don’t deserve those mean comments the way you cope with your pain and share your story is sooo incredible thank you for sharing your story it shows people That they can be strong even when they feel their worst😊
I am sooo happy you talked about this. I understand what you are going through, I go through this myself. I have a scoliosis (bend in my spine), am hypermobile and have diabetes type 1. This is al not visible (exept my scoliosis a bit). People never take me seriously when I tell them how tired I am all the time or how in conflict I am with myself about working more hours in a week and also taking enough time to rest. It’s an ongoing battle. I am soooo thankfull that I have a boyfriend who understands me and also is my best friend because a lot of my “friends” dissapeared as soon as I started expressing my true feelings sometimes. Some people just arren’t interested when you open up, they just like you when you are high energy all the time. It’s really sad to me, I always try my best to listen to people and create relationships in wich both persons feel free to be true.
Thanks for talking about this! I only found your channel a few days ago, but I already saw so many nice videos from you.
Jo you have been such a motivator for me talking about real life shit that goes on with chronic pain. My leg goes paralyzed when in a flare. I get migraines daily. I have depression and anxiety. I am so happy you are on here and it's crazy to me that people can be so rude. Love you chick you are truly the best
If you haven't lived it, you should trust the experiences of those who have... Thanks for sharing your experiences! Continue to take very good care of yourself!!!
So many people don't understand what it's like to live with chronic illness, especially when that illness isn't visible on the outside. Hang in there, and just know that you're better than the people who say these mean things.
i have chronic migraines (reason unknown as of yet) and i've only just found your channel and your videos have been so relatable and informational. what you said about how sometimes doctors don't even listen is so true and i'm so sorry you get comments and stuff like this.
Greetings from one of the people who had one of your videos pop up in their timeline because of TH-cam. You are right to have this bother you. Thank you for speaking up because it educates those of us who aren't usually in this community but TH-cam decided we should be.
It’s so refreshing to see/hear someone else stand up for all the wrong in this world. I won’t be the one to say to not let them get to you. It happens to the best of it. Just remember, you are you for a reason. You’ve been given a voice and a platform to share your experience. Kudos to you for standing up for you and so many others!
Mental health is one of the biggest examples of what happen when you’re suffering and no one can see it. I also look like a healthy twenty year old, and not even my doctors believe my pain. You even start believing that maybe you have to do something extreme so people starts seeing you, even when you’re fighting every second not to end things.
Your channel makes me feel like I’m not alone in this journey, even if our situations are so far away from being similar. So thank you, for that.
Ah, the sorrows of having an "invisible illness". I've had this happen to me a lot. Nobody can tell I have lupus, chronic migraines, or a sleep disorder. Nobody can tell how fatigued I am, how nauseous I feel, how much effort and energy it requires to have even a 10-minute conversation. Because I'm walking, and talking, and have a smile on my face, they assume I can do anything. Even my doctors get annoyed that I cancel so many appointments, not understanding that due to my sleep disorder, it's almost impossible to wake up during business hours, without the alarm causing a migraine and feeling too sick to leave the house (even with a driver).
I also have problems because my arms are really weak, so I need help lifting things. When I used to travel, I would ask the check-in girls at the airport to please lift my suitcase onto the ramp. I NEVER got a good response. They would glare at me as if I was a super diva who was treating them like servants. They would refuse to do it until I explained why I needed help. Same at the train station- the black employee assumed I was being racist. Why should I have to give my entire medical history to get a few seconds of assistance from a stranger? Why can't they give the benefit of the doubt, and assume I have a good reason for asking? Most people are just jerks. Sometimes I feel like wearing a T-shirt listing all my illnesses and their symptoms- maybe that would help me catch a break when I venture out into the cruel world. But I shouldn't have to do that. Anyway, hang in there, Jo. And don't let the ignorance of strangers get to you.
I’m so sorry. People always make it about them, when it’s not really a big deal if they’re healthy. It drives me nuts. I’ve been sick since I was 11, so now my illness could vote if it existed outside of me (if only it’d take me up on the offer!). I’ve seen the horrible sides of people they save for people they think are safe to kick around, and it’s... frustrating and depressing.
I, I hope you have a support system, either online or in real life, with some people who get it either from empathy or living some version of this. I hate how it isolates us and makes us feel like we’re alone or weird or wrong for being ill. If just people with chronic pain had our own country, it’d have more people than China, isn’t that nuts? But because we become so isolated, we don’t get to realize that, and the power we have as a group.
I kind of want to start a group, maybe on the Line app, for people with pain, so we can vent, share coping tips, that kind of thing. So many of us are going through this and we don’t need to deal with it by ourselves. Anyway, regardless, I truly wish you the best. Your pain is valid, and you don’t deserve to be treated like you have been.
@@SunflowerSpotlight Thank you, your message means so much because you're the only one who responded. I already have to deal with an invisible illness out in society, and then I end up feeling invisible here because my comments are usually ignored by everyone- even though this is supposed to be a supportive community (and yet I see other people getting support). So thank you for being the only person to hear me and see me, and show you care. I'm so sorry for what you've had to go through, too.
I actually have zero emotional support in my life. I have no friends or family- not even internet friends. I've been meaning to find an online support group, but haven't had a chance to. I've been dealing with my illnesses all by myself, for years. It's so incredibly hard, I just feel like giving up so much of the time. I would love to join your group, if you start it. Could you please let me know? Or even if you don't get around to it, and you just want an internet friend? Please let me know, and take care 🌸
LittleLulubee Hey! It was nice to hear from ya! This is weird... I got an email notifying me about a reply from you, and I could read it there, but I don’t see it here? I guess it’s either just a glitch, or maybe Jo saw it and is concerned about the possibility of real world info being exchanged and took it down (which doesn’t seem likely at all) or it’s also possible you felt weird about reaching out, and if that’s the case, that’s totally fine and I get that. But, if it was a weird TH-cam fluke, I’d love to talk with you and be a net friend; it bugs me how hard being sick makes it to network as get a sense of community with people who get it. There’s an app called Line, and until I get more savvy on Discord, I think it’s a good way to go for people; it doesn’t have to be associated with a phone number or email address or your name, so it’s not very identifying if people don’t want it to be. If you look up PhoenixSphinx, that’s me. 😅 You could just message me and let me know it’s you. I don’t really have people in a pain group yet, since I just finally got fed up with things now, lol, but if you don’t mind just talking with me until I contact some other people, well, just having each other for support is better than nothing!
And again, if I didn’t see your message because you changed your mind after posting, no worries, and sorry I didn’t get the hint! 😅 Regardless, I hope you can find support to make things a little easier. For a lot of people with chronic pain, modern medicine can’t really make things a lot better, but, at least with support, the isolation aspect loses some of its strength. It’s crazy what people can endure if they have friends by their side. I hope to hear from you, but either way, be well. 🌷
@@SunflowerSpotlight Thanks so much for writing back! I think it was just a TH-cam glitch. I've had that happen before, where it looks like there's no replies, but then I refresh the page and the replies appear again. Anyway, I will totally find you on Line! The only thing is I have a new smart phone but haven't hooked it up for service yet. It might be a month or two before it's hooked up. But as soon as I have that taken care, I'll get in touch, ok? I would love to be online buddies with you, yay!! 😊🌸 Talk to you then, take care!
You do good things, and I’m sorry you have to deal with bad things.
Some people are so judgmental and awful - invisible illnesses are so difficult to deal with already, without someone being so insulting... ugh. Keep on keepin on Jo. Sending you love from my Pack and I ❤🐶
Thank you, thank you, thank you for expressing this. You speak the absolute truth.
Thank you for addressing this issue. I have chronic migraines as well as some other issues but look “healthy “. It’s really frustrating and just makes me angry the way lots of people treat me as well as my friends that also have these issues. Please keep helping us support each other. Thank you.
Jo, Jo, Jo, Jo...As if you don't have enough to put up with!! What you have said lo these many months have done nothing but make me want to reach out to you. To grab you! To hold you! To protect you!! (I figure, at least, Brian has got a pretty good handle on that, however.) But alas!! Despite his or your parents or your friends intentions and my very, very imagined intentions, we cannot protect you from that woman and her misguided thoughts and ways. For that, I am sorry!! But those people, read her, are severely shriveled lost people who need to make others feel bad so that they/she can feel good. You are enough!! You are good!! You are cool!! You are beautiful!! You are as close to perfect as any of us can be! Smile and know that!!
I’m so sorry you had to make this video but glad you did. Maybe the good that will come from this whole social media universe is that we will SEE into our judgmental hearts and maybe change. I know your struggle somewhat. I get really upset with the “know it all” vibe. You are doing great things despite the struggle and for that I thank you.
Jo, you’re not alone. As you know I’m a bilateral BKA and from the waist up you’d never know I have a problem. But I too get painted with the same brush as you. This is one reason I generally refrain from commenting on U-tube, you being the one exception. As always hang in there and don’t let them get you down.
I'm so sorry that you have to deal with people like that. But thank you so much for being brave enough to talk about it. I am one of those new people you talked about in the video, and I am so loving your videos and positivity. I have an "invisible disability" and am way too familiar with your story. I cannot count how many times people assume that I am faking it or being dramatic. I have had doctors tell me this as well. I think that women are treated this way more than men when it comes to illness, especially if no one can see it. So good for you for being brave enough to confront that kind of thinking! Again, I am absolutely loving you and your videos, keep on keepin on!
Jo I totally understand how you feel. People have said to me over the years that with my disability it's mind over matter. If I put more effort into my life, the limitations I have will fall away and be "normal"... how about no... no one will ever understand what I go through and I hope that they never will...
I thank you for having the courage to hit the nail on the head...
I get what you mean about being relived after getting a diagnoses. In deal with constant pain. People tell me I have growing pains. The doctor didn't really look into it. Its so frustrating. It might be something that is easily solved. Sometimes I even doubt it. I understand what your saying. Thank you for putting it into words and risk more bad comments.
Good luck Jo , Im sorry that you deal with such Chronic pain ,
I complete understand and struggle with where you care coming from. I look like an "able bodied" 21 year old women but I struggle with a long list of invisible illness and I am struggling to gain accommodations at my workplace because I "look and sound ok"
We all have to stick together on these things!
Jo, you are so not alone in this & for that comment to have hit you like that makes TOTAL sense to me. Even just hearing you talk about it & how it affected you made me so goddamn furious.
It took 17yrs for me to get dx with Ehlers-Danlos Syndrome, and a further few years before my Dysautonomia & Gastroparesis were diagnosed. I spent months, as a teenager, trying desperately to get help for what was absolutely Anorexia Nervosa, but was constantly denied treatment because I wasn't "underweight enough" to qualify for an AN dx -- and because of that, drs accused me of "pretending to be sick".
Since my dx, I've STILL had to deal with COUNTLESS medical professionals who didn't believe that my chronic pain was as bad as it is, simply because I "present well". I'm so fortunate to have a GP who gets it, but I'm so traumatised that I've had panic attacks in the lead-up to appointments with him, even though I know logically that he has my back.
And that's just medical professionals -- people with actual training & qualifications. Everyday people have been even worse.
This shit causes real harm to people like us and we deserve to have that experience acknowledged & validated. You're absolutely not alone 💖