9 Chronic Illness Misconceptions

Flare ups can be horribly timed and sometimes they can be greatly timed and you have no say in the matter Just stop judging people and questioning the legitimacy of their illnesses. Thanks Hey guys, I’m Izzy and today I’m talking about chronic illness misconceptions, so let us begin It’s the same day to day and if we could do something yesterday, that means we can do it today This is a huge misconception of chronic illness and it really really bothers me So, for example, I can walk the stairs some days and other days I really can’t and it’s because It’s dependent on how my joints are feeling if they’re hurting me, how much my heart is bothering me from my POTS, if am I going to feel like I’m gonna faint if I walk up this flight of stairs or am I gonna feel okay, you know, and every single day is different sometimes you know how you’re going to feel so you know to do an activity or not to do an activity and other times you don’t really know and sometimes you just give it a shot and other times you’re like it’s not worth it or I don’t want to take the risk and That’s okay but I just find it really offensive and it hurts my feelings a lot when somebody questions the legitimacy of my illness Because it’s not the same every single day and I certainly don’t want to have to be like well I could walk the stairs yesterday I don’t really feel like I can today but I’m gonna do it anyway because I did it yesterday and then feel horrible You know what I mean? Okay, that was like a main one I just had like put a lot of energy into because that one really pisses me off Next, a flare up is caused by something that you did. Of course Every chronic illness is different and I don’t mean to speak for every single chronic illness for this but for the most part And in a lot of chronic illnesses know you oftentimes did not do anything to cause your flare-up. Some days I have a high pain day and I have absolutely no reason as to why I’m having such a high pain day You know, it doesn’t make any sense, or why did my gastroparesis flare? I don’t know It doesn’t mean that I ate the wrong foods. It doesn’t mean that I ate too much. It’s just happening. If I’m having fun and I’m laughing, that means that I’m feeling okay and That’s really not true. It really sucks when like people assume that. I can still have fun and enjoy my life and do things that I like and I can be laughing with my friends That doesn’t mean that my pain is gone or my nausea is not there. It is, You just have to learn to get past it You know somebody without these chronic illnesses if they experience some of the symptoms I experience, they might not be able to function in that Circumstance in like any circumstance that I could really. Like they’d probably be home not feeling great and you have to learn to live with it That’s the way it is, and on particularly bad days You can’t live with it and that’s okay But on the days where you can or the days where like you just might be able to make make it through you can have fun and You know, that doesn’t mean that you’re feeling great. There’s always another treatment option that you have not tried. This is a really big Misconception and it honestly leads to you a lot of blame on the person who has the chronic illness like well Have you tried this or well, why didn’t you try that medication or have you tried this, you know? You don’t need to try every option first of all Like there are different reasons as to why people don’t try everything But also sometimes people try every freaking option and there is no option. The point is it’s a chronic illness Sometimes the symptoms can be managed. Sometimes they can’t because somebody’s feeling bad don’t think that they’re being lazy and not trying anything because they probably are and if they’re not there’s probably a reason for it and that reason could Be financial. It could be I don’t even know religious like whatever it is. It could be just scared or side effects or Allergies to all medications or something. I don’t even know but like I just hate how people assume that if you’re still having symptoms Like you just haven’t tried the right thing because that’s that’s not that’s not the case. That’s not what it is Sometimes there isn’t a thing Resting before doing something that you want to do will ensure that you’ll be able to do it – also false. Like I said chronic illnesses are really unpredictable and sometimes you really want to do something and You’re doing really well and then suddenly you’re doing horribly and they can have just horrible timing. Flare-ups can be Horribly timed and sometimes they can be greatly timed and you have no say in the matter And so if you are resting that mean you’ll be fine to do something and you know, that’s just the way it is It’s not always something that you do or don’t do that will change around your symptoms Sometimes it just happens and a lot of the times it just happens This is similar to something that I’ve said before, but if you have a chronic illness you can tell – no, again I look happy I look pretty I look I look well put together, you know And that doesn’t mean I feel good surely not at all. So, just because I put makeup on my face or Like I’m wearing clothing doesn’t help or mean I feel good, you know. Maybe it took a lot of effort to do those or maybe it didn’t and I still just feel horrible whatever like But you can’t assume that somebody feels good that way, you know. If you have a chronic illness and you’re exercising, you’re being stupid. No, no, no. No, you’re not being stupid If you can exercise and your doctor agrees with you that you should exercise, it’s a really good thing and Like what’s really difficult sometimes for me to convey to somebody is Yes on a good day when things line up meaning I’m you know, none of my symptoms are horrible I Can go to the gym and do elliptical, you know, for example, I can’t really lift weights I can do certain ones and for like two minutes, you know, things like that, but I can do the elliptical And sometimes the bicycle but I have a lot of pain when I stand for 10 minutes and people don’t understand how that how You can do both, you know, how like you can struggle so much to stand yet you can do the elliptical, you know, and yeah, well first of all sometimes It’s you’re going to the gym – know, it’s probably going to hurt or make your symptoms worse or whatever But it’s for the greater good and also Like you’re preparing for it and it’s for something that’s like really worth it Whereas like standing it’s not but also they are different activities and like for me standing is something that’s way more painful than walking and I wish I Exactly knew why I know like certain reasons why but not the full reason I know people who go to the gym and it doesn’t Mean that their endometriosis isn’t horrible like what like of course their endometriosis can be horrible But they can still go to the gym maybe depending on the person depending on the day and their symptom levels Just stop judging people and questioning the legitimacy of their illnesses, thanks. I have two more: if you had a different outlook or you know, like a more positive outlook Your chronic illness would be better. Oh, it’s one pisses me off a lot a lot of lot. I have such a positive attitude I really do and I’m not I believe that your your mind does have power to make you feel good or not good You know, and I think that there is something to be said about having a certain type of attitude And you know, like maybe positive thinking can be helpful But in no way it’s not gonna cure your chronic illness unless you solely have a psychosomatic chronic illness which you probably don’t like it’s it’s just it’s so Invalidating when somebody tells me that like it’s all about my attitude I’m just like you know what it’s also about my genetics and the way my body is So you can stop putting the blame on me and my, you know The way my attitude basically or my thoughts because like you don’t even know me I don’t know it just like it bothers me a lot and I Think that people should put emphasis on Like your attitude, I think that and like how you look at things I think that’s really important. But like in no way is that going to cure you at all. Like that’s it’s it’s really not, like it might help you manage a bit with your symptoms, you know Which is great. And the last one Because we’ve declined your invitations in the past a lot It’s okay to stop inviting us places. I Really want to say no to this. I think it’s really hurtful if you you know, so I remember like for me tenth I mean not tenth grade, sophomore year college was the time where it was very difficult for me to go do things Um, probably like that was like one of the most difficult times. My stomach was the worst, my fatigue was so bad, And I was just like in a lot of pain. I didn’t, I couldn’t really do anything like I couldn’t go to that party I couldn’t, I didn’t want to go to that that activity because I really didn’t feel well But sometimes I did feel well enough to go or you know I didn’t I I don’t want to be I don’t want to feel left out It’s already sucky enough that I need to stop going to things. But please just keep inviting me because Sometimes I might say yes and sometimes I might say no or I might always say no or I might always say yes but regardless, it feels so good to be invited. You feel included and Even though you’re gonna feel horrible that you’re not going, how much more horrible would it be to not ever even be invited and not be able to go? Keep inviting us. Even if we can’t go and even if we keep saying no, and please don’t take it personally For me now. I don’t usually say no. I’m like in such a better place health-wise than I was but when I did You know, I was just people would ask me and then I’d say I’m sorry I really can’t but maybe we could do something at my place I’m trying to like to see or they could do another day and come over something like that But then if they stopped inviting me like it really just really hurt my feelings and I couldn’t be crazy mad at them about it, but it’s just, it feels Good to be invited. So, I hope you enjoyed this chronic illness misconceptions video Let me know in the comments if you can think of any other misconceptions I know that there are a bunch more, I actually wrote way more than this down and I sort of just had to pick my favorites, so that’s what I did. Um, and thanks for watching this video and Subscribe if you want to see more videos, bye guys

68 thoughts on “9 Chronic Illness Misconceptions

  • OMG the 9th one hits me so hard 😥😥 please don't take decisions for me because I can do it myself 😕 ppl doing this don't actually think about how much they hurt your feelings and let you feel that you are excluded just because of a health condition but at the end I think ppl who are worth spending time with would always understand and care💛

  • i don’t hear endometriosis mentioned often in chronic illness vids and i finally got diagnosed 2 weeks ago so that mention made me weirdly happy haha

  • 4 and 5 are my pet peeves, yes, they're all frustrating. I hear 8 the most, though, despite that I am an optimistic realist.

  • Good job once again, Izzy. I hate the “if you think more positively” and “have you tried XYZ?” so much!! As bad as having a chronic condition sucks it’s made so much worse when we feel so underestimated and simply misunderstood.

  • People: "But you were fine yesterday"
    Me: "and that was yesterday, today's a different day, your point?"

    Edit: I think my second most annoying thing being said, especially with increased heart rate or flare ups and seeing a medical professional is "are you sure it isnt anxiety?"

  • That last one really tugs my heart strings. I lost a lot of friends when I got sick because it was inconvenient or they didn't believe me (aka they were shitty anyways) but even the ones who did stick around have slowly trickled off of inviting me places. At first they would and I'd say yes whenever I could but eventually they stopped. It's hard. Being sick is so isolating and it's important to have people around you who will encourage you to be out in the world whenever possible but it's also hard to be mad about it because you know they're not doing it maliciously. It's just difficult to navigate all around.

  • I have so many people saying that if I eat healthy and cure my gut my stomach issues and joint problems will disappear. If it was that easy do you really think I’d still be this way? Lol

  • All of these misconceptions are so relatable. I've experienced all of those things. I just try to ignore people who aren't empathetic and think they know more than you. I don't have EDS but I do have chronic back issues and other chronic conditions which I have learned to live with.

  • These are all very true! Thank you for making this video! I understand exactly what you mean by an illness being different one day from another and because I could do one thing one day doesn’t mean I can do it the next. I also cannot stand to be called lazy! Blessings to you!💛

  • Have someone say “You need to go to another dr so they can cure you”. You want to slap them and say it’s not cureable now go away. Or “ you just laid down for an hour you should feel good now no one else laid down “. Again slap them .

  • I always get told I’m a hypochondriac and that I probably am just self scanning or it’s anxiety. And it really pisses me off because no one knows what I feel like other than me. I do complain a lot and maybe I shouldn’t because it’s making people look poorly at me. I don’t mean to complain a lot. I just feel alone.

  • Omigosh, the standing vs elliptical thing rings so true with me. I sometimes feel like I want to hide the fact that I do exercise sometimes because it makes me feel fake, even though I know how I will be affected.

    Thank you for making these videos! They're awesome.

  • I know this has nothing to do with this particular video, but I remember you mentioning in a different video that you get presyncope instead of fainting. I would love to see a video about what presyncope is like for you! I too get presyncope instead of fainting, and I just want to learn more about it!

  • Wow! So many relate-able points here! The stairs – omg. Right on! Some days it's not a big deal but other days you really need a rest after going up the stairs. And it makes no sense why it's different.

    Thanks Izzy! Great video!

  • Izzy, you are right on target with everything you said. My daughter and experience all of these from family, friends, my daughter's school teachers and administrators, and a couple of my coworkers. The school part is why we chose to homeschool. Thank you for trying to make people aware of the challenges faced by chronically ill people.

  • I relate to ALL of these. But #6 & #7: Oh boy. I stay in shape because it’s what helps me be able to function. If I don’t, I decondition very quickly, and my ability to function goes away. Sometimes I feel better moving, other times I feel better standing or sitting. I can’t do any of these for too long; I have to keep shifting positions and activity depending on what my body needs at any given moment. However, I look like I’m in pretty good shape (former dancer from long ago), and I think that definitely makes people doubt me, especially because I also can hide pain really well (#3?). I have constant pain; I just don’t always show it. I just try to remember that most people aren’t intentionally hurtful, and I use these opportunities to educate people. Thanks for doing the same!

  • Thank YOU! It would be nice if you could make another video with the other miss conceptions that you couldn't fit in the first video and maybe add in others that people put in the comments?
    miss conceptions below:
    * Why don't you get "exercise" and walk like a "NORMAL" Person.
    * Well your test came back "NORMAL" and it must be in your head? If you had a certain Disability it would of showed up on a test. Stop being a "Faker".
    * (From another Disabled person). If I can do that you can do it too.
    * Why don't you work harder? We without Disabilities have to work hard just to keep you with Disabilities alive?
    * I don't think you can do this or that very well so that's why we didn't include you.
    * Stop trying to use your Disability just to get Free stuff or to get out of things.
    * Try to Look "Normal" Don't look like your Disabled and you should never consider yourself Disabled just say you are differently able.
    * The way you move your leg or body part doesn't match up with what you say you have.
    * Why didn't you "CHARGE" your chair? If you would of charged your chair it wouldn't be dead and we wouldn't have to be helping you home.

    These are things that came to mind and there is more where that came from. I have had people say most of these things to me. It is so important that people without Disabilities try to realize what it is like when you run into a barrier. This last SAT 07 SEP 2019 I was at the Gateway Plaza Mall in downtown Salt Lake City Utah. Around the Olympic Legacy Fountain. They had an event and the mall blocked off the (2) Two Elevators with fencing. They blocked off the crosswalk that had a smooth curb cut that was easier to drive my chair down and cross. I was told that I could use any of the curbs in the mall but even know these curbs are Zero Sloped Curbs doesn't mean I can get up or down them. The person acted like it was no big deal as if they would have no problem doing it if they were in the same position. I have had people tell me "If there is a barrier just go around it". They don't take into account that, that takes More Power in my chair and it takes 10 hours to charge it.

  • One of my pet peeves is people constantly judge us if we complain a lot. We complain a lot because we go thru a lot and sometimes it feels good to talk about our chronic illnesses because we just need to get it off our chest and sometimes it feels good to talk about it because we are always wanting to educate people about chronic illnesses. We just want people to understand what we are going thru!!!! For some of us it’s an invisible illness and that makes it even more frustrating. Thanks again for another great video Izzy! You do such a great job educating thru your vlogs! xoxo🤗

  • on point four as well: SOMETIMES YOUR DOCTOR HAS NO IDEA THAT THAT OPTION EXISTS. not everyone can see a specialist (look how many autonomic specialists are out west for an example that pertains to me. im in Montana my nearest one is literally eight hours away in Seattle). I see a cardiologist because its the best i can do and I've had to tell him stuff about POTS before that he didnt know because it simply isnt his wheelhouse but he does his damndest to both listen and care for me because there really isnt a logical better option outside of moving interstate which i can neither afford nor manage alone.

  • Even though I stayed in bed and studied all day the day before a 25% test at uni, 30mins before the test my ribs decided to dislocate (PAIN) and lay on my stomach making me throw up…worst timed dislocation ever.

  • I really get it when people stop inviting you. It’s the most hurtful thing ever. And I know they probably don’t mean it, but it can feel so bad when people do that.

  • Number 8 really gets me! My family keeps telling me that my illness will go away if I just stayed positive and hoped for a cure!

  • I'm sorry but I have to disagree on the 4th one. Here in Finland most people do not know about all treatment options. I have been SO godd**n happy when people have been notifying me of new treatment options. It's not rude to want to help in my opinion.

  • I'm so glad you touched on this. Even people in my own family just dont get it. My husband blames everything on anxiety. He does'nt get that my being under a lot of stress is one of the triggers for my auto-immune to flare up. My sister does'nt get how I can be fine at lunch time and be in bed, down for the count at dinner time. You know what…they dont need to get it but theres such a thing as saying to yourself I dont understand this illness and be supportive rather than condemning. It's not fun when your friends call earlier in the day and say " Hey, do you want to go for dinner tonight" your feeling good so your all about it. Come that evening you might not be able to bend your legs and have to cancel. Fortunately my friends are great about it. Can you tell this is a really touchy subject for me. I dont get why this happens either. This disease has a mind of it's own and I just have to roll with it. If anyone wants to trade their healthy life for mine with my "Fake Illness" please let me know. I have a rare auto-immune called MCTD. It's a mix of Lupus, Scleroderma, polyomyocitis. Sorry this was a long rant but I'm so sick of feeling so awful and because you look ok no one gets that you feel so bad or how quickly you can go from good to bad. Thank you for spotlighting this.

  • People often tell me that my GI issues got worse as I ate less types of food and smaller amounts and that’s simply not true. It’s the other way around! I started eating this way as my symptoms got worse. It makes me feel sick to eat otherwise😕
    They will say stuff like:
    “I bet you would feel so much better if you just ate more and all kinds of food.” They don’t understand only we know our bodies more than anyone.

  • Ms. Kornblau your videos are full of truth and inspire me. I have horriable experiences with most doctors so much so that I have opted for German Herbal Medicine, Natural Medicine.
    Thank you for all of your videos. I wish you all the best.

  • I have had people say to me "you don't look sick" If you were sick you would be malnourished looking. It must all be in your head." To which I responded; "Are you a doctor?"

  • I've been told many times by different doctors that lack of motion can worsen joint pain AND joint injury (especially if the spine is involved at all). There are many reasons for it, but it sort-of explains why standing is so hard for people like us while on a good day I can go on a 30-40minute walk

  • Going through a flare-up currently (I get vertigo and therefore lots of nausea)
    Gettin’ real tired of people suggesting I’m pregnant 😂🤮
    Thank you for brightening my day with this video! 💕

  • I find it very hard and frustrating with what treatment options you can get covered by insurance really depends on your geographic and financial circumstances. You can easily fall into the grey area where you need more help than you can financially afford and you don't qualify for any programs that could possibly be a great help, because you make too much or too little to fit the set income qualification box. Or at least that's what I've experienced with my own experiences.

  • I'm so glad your video came up in my suggestions. I have narcolepsy and could relate to all of these so much. I think a lot of people also don't understand that sometimes with a chronic illness how you're feeling can change very suddenly. Idk about you, but I can be laughing and feeling okay one minute and then be exhausted the next. It feels awful to have people doubt me or think I'm making it up because of how fast things can actually change. Loved this video everything was so well said. Definitely subscribing!

  • My serious pet peeve…when my spouse that’s perfectly healthy says “your not well because you don’t eat right” or “it’s your attitude, you can make yourself better if you just think your fine” but if I didn’t have this devoid of empathy brat, I wouldn’t have insurance.

  • I love these videos and it goes show was people with chronic illnesses face. I've lost so many friends to my illnesses or friends who can't understand what I am going through. Dealing with multiple illnesses and constant surgeries suck and a lot of times I just would like some support but it's never there. My friend never invites me to anything or I am always the last thought. I even feel guilty when I have to cancel but, I am always made to feel like crap when I have to reschedule.

  • love these videos. you should definitely make part 2s of these videos! they are so relatable and ive actually sent a couple to a few people just so they could watch and sort of understand more about how what they say is wrong or hurtful.

  • So true!!!!!!!! I'm only 26 and I was diagnosed with degenerative Arthritis with joint damage shown on CT scan images.. It's very painful. Extremely. People think I look healthy. I never knew I had degenerative Arthritis until a radiologist read my scan. I didn't know young adults get that. I live healthy but I still have it.

  • Number 7 is so relatable. I dance and people always question how I can dance but I can't play contact sport. Or why I can dance but I wear a wrist brace and can't write with pen and paper. They are very different from each other and I can pick my own battles. Why would I want to participate in school sport which causes me pain and little enjoyment when I can save that pain to do some thing that I love even though it still brings me pain.

  • Thanks for this! I've just been diagnosed with EDS at age 48 (along with my 36 y/o brother and 75 y/o Mum), and trying to explain to old friends that I've had these symptoms all my life is the biggest issue so far. The 3 of us have been seeing doctors about the symptoms all our lives, but no-one connected the dots and I have felt for years that it's all my fault my body doesn't work like other people's. One friend in particular is having a problem with it, don't know why, but she is getting more supportive now that my employers and doctors are taking it so seriously. Still a bit peeved she wouldn't take my word for it, but it's been a massive (although incredibly positive!) change for me, so I guess it will be for others too, especially because I've been hiding all the symptoms I could due to shame all these years. Keep up the good work, lovely! There's a middle aged woman in London who needs all the guidance she can get lol.

  • Exercise yes! I have rheumatoid arthritis and if I don't get even a small walk in per day, I'm in the worst pain at night. I do some easy yoga also, sometimes it's a fight with my body but it's worth it.

  • The 7 one really pisted me off!!!!i have chron disseis and im a fucking dancer! Five days a week! For the last four years. And you say that the only thing that make me happy and forget for a little that im cronicly ill is stupeid?!?

  • I'm on the way to getting answers for chronic pain and the one I hate already is "if you exercise more you wouldn't be in pain"
    Well exercise makes it worse so f off!!

  • Yes! #2, 3, 4…(omg I feel like I'm always explaining that I have tried everything there is!),#6:you are so cute BTW, ppl say to me, "ah you look pretty, I'm happy your getting better,"…like thank you, but no, just no. #9: this one is so hurtful, sucks to not be invited. LOVE this video & your channel💚

  • Hey, Izzy girl I agree with you about people myth they have concerning chronic health issues. Well, I had two aunties who would say you must be praying the wrong prayer why God haven't healed you yet. Or, they would say you must done something bad that's why God let you get sick. Then there's why your in bed its only 1:00 pm in the afternoon. And finally I get this stupid question why your going to bed so early its just 7:00 pm your too young to be going to bed so early. Folks need to stop hassle people about their condition and move on. It drives me crazy some of the stuff people say to you. Thanks Izzy for sharing some of your pet peeves people say to you. Take care and have a great day.☺

  • Another misconception, is you’ll just feel better if you exercised. My dr has said this to me as well, cause yes it is shown to help pots. But I get so frustrated cause I’ve tried all the med options my doctor has and life changes and haven’t seen any improvement, and it’s nearly impossible to work out when you always feel like your going to pass out. And it feels like they, including my doctors are blaming me cause things just aren’t working.

  • Sobbed through this video. Thank you for sharing and being someone who understands. So hard when everyone says, "well, you don't LOOK sick!"

  • I think outlook is important. Accepting limitations but not being defined by them is good. But other people who don’t have a chronic illness don’t get it. They say stuff like oh if you put your mind to it you can do anything or if you had a better outlook on your condition you could do that thing. I either wanted to be a medical doctor after doing my undergraduate or become a researcher in the field I did my undergraduate degree in. And because hEDS and POTs etc, are annoying and I can’t deal with the symptoms some days, those careers for me aren’t going to happen. But that’s ok, if I pushed myself I would burn out and life doesn’t always turn out how you expected it to, and sometimes the path you go down is better and fits you and your skills better than the one you wanted in the first place.

  • Can you make a video about all the times there’s been awkward moments due to a chronic illness. Including people’s reactions, assumptions story time. I never know how to explain to people in short time frames because they dont know the symptoms straight away when I just say hypermobility or whatever..

  • I wonder if you'd be interested in doing a video on how to make a career (how to be financially stable) when you have a chronic illness and have very little energy to expend outside of the house (even in the house for that matter)

  • Another annoying one: your physical illness must be caused by your depression/anxiety, not the depression/anxiety by a physical illness.  I don't like to deny the possibility of conversion disorder, but I'm becoming very sceptical of the way the medical profession fall into the trap of using it as an excuse not to look for and treat a physical illness.  Try going about with things hurting for no reason, having to concentrate madly not to faint, having everyone blame you for things you can't help, being knocked over by random "friendly" dogs in the street, and getting exhausted from sitting up for a couple of hours, and see if you don't become anxious!  In any case people ought to treat conversion disorder just as seriously as any other illness with the same symptoms, and it didn't ought to lead to people assuming that it rendered you immune from also developing physical illnesses.  That's like assuming that someone with chickenpox can't break their leg!We have a dreadful tendency in Western culture to refuse to believe in anything we can't see.  I've actually done it to myself.  It's only in the last few months, when the doctors started suggesting I might have connective tissue problems, that I've started taking the fact that my joints hurt seriously, and the fact that I have fatigue and am not just being lazy and undisciplined (ok, I do that as well, but it isn't the main problem), and just the general fact that I am actually ill and not just pretending.  I think sometimes it is easier mentally to condemn yourself for pretending than it is to accept that you're trapped and really can't do anything about it.

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