There is truth to a positive mindset healing the body (I have a chronic illness). It’s just not what you want to hear from someone who doesn’t know what you’re going through.
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.
Exactly, I feel you. I had a group of "friends" years ago who I thought of as family. I hustled so hard to go to everything, pushed through pain to the point of making myself sicker. I finally learned the art of declining invites when I know I'll have my period or have a lot of appts that week. I learned to rest when I'm tired and not ignore pain. You'd think friends would be happy for you when you start to take care of yourself. But nope. As soon as I stopped putting in all the effort, they gradually stopped inviting me to things, stopped trying to connect, and just faded away. I'm glad I saw their true colours and I have way better friends now. But damn, that really hurt my feelings.
I have a group of friends who I’ve know for 10 years but ever since I got sick I fear everyday I’m going to lose them because I’m too much even though they’ve said they’re here for me. I feel for you because everyday I feel to different and so alone because no one I know has what I have. My friends try to understand but they can’t. They say they’re starving and ask if I want to go get food when I have a feeding tube and can’t eat then make this face because they forgot that easily. They’re good friends but not the best friends when you’re sick or maybe I’m just making these reasons up to be alone because I can’t be loved
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.
Seriously it ok to voice that fact ur hurting or not feeling ok. I stopped talking about it cause I wasnt listened to and that's worse. Expressing ur self is important much love n hugs ❤❤
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.
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! 💕
Hi, I read your comment and I felt your pain instantly. I had a terrible attack about a month ago and couldn’t even stand with a cane. How often does your vertigo attacks come on?
I have 2 diagnosed vestibular disorders that cause vertigo (but I think that I have a third one that they're missing or that it's POTS because some of my recent vertigo feels different than the ones that match the other two diagnoses). For whatever reason, I got lucky and rarely have nausea with my vertigo, but I have vertigo every single day for many hours of the day. At one point in 2016, it was an average of 22 hours a day, but now, it's more like 10 hours per day. I am still in college, and have had vestibular stuff since birth, so I bypassed ever getting this question since that isn't usually what people assume in children and college kids, but I get weird ones regularly when I talk to my professors about it like "Please let me know the night before if you'll be too sick to come to class." I'm like...do you think I schedule my dizziness and like stick it in my calendar that I'm going to be dizzy tomorrow?? This is a request I have gotten from 2 out of every 3 professors and I'm very confused by it. I also have a connective tissue disease (they think EDS, but waiting on approval for further EDS genetics testing because the TAAD panel mutation I have was only just reclassified as likely benign), and like 10+ other chronic, invisible health conditions. It is horrendous! Sending wishes for many more steady days in your life ahead.
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!!
@Michelle & Leona - Clean Beauty & Chronic Ill Life people thing anything can be fixed with exercise and eating changes. But that is definitely not the case! Pisses me off!!
OMG yes. I literally just had a fight with someone about this. Like, exercise helps in some cases but if one more person tells me this I just might scream. Especially since I've been told by my physical therapist that any type of exercise other than the stretches and stuff I do in PT, is not good, and is hurting my body in the long run.
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.
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 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
Like it’s a good thing to have a healthy balanced diet but nah it’s not gonna cure a chronic condition, might make it more bearable because the body does need plenty of nutrients to run well
"If ur so sick all the time maybe should see a doctor" I got this all the time. I felt like I lived at my drs before my recent diagnosis(36) and that they dismissed me alot. Just Growing pains(past the age for it) its stress its my weight then no its ur diet then it's in my head it's not that bad or we dont know some ppl just cant feel there arms n legs for no reason(actual happened still no diagnosis on that one). This is what many esp women face for For years!
Thank you for the video! I have chronic back and neck pain and I always get the "Have you tried swimming?" I know people do it in a good way but the looks I get when I say that I had to stop swimming at 12 because it caused me to be so much worse...
Yes, one physio at last said to me, you have to build up to swimming, you can't do it yet. It's the general advice that gets me, taking no account of your situation, muscle strength, difficulty with transport etc.
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.
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.
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.
Its painful when your parents doesnt believe you about you having chronic illness. My mom is like "nobody is perfectly healthy" it's TRUE but I'm pretty sure it's not normal for 17 years old to have iih, depression, adrenal insufficiency, and high blood pressure. I literally have no support system except my school nurse, and counselor.
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.
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🤗
PREACH! I have Endometriosis and dancing can help my pain, but standing for a long time or walking for a long time can make it worse. I appreciate you for making this video :)
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.
Thanks for sharing your thoughts. It is a year old video so I am going to go look for your newer videos. I hear my Mom in so many of these statements. Even though she knows me well, she hopes all my chronic illnesses will go away. Peace to you.
I love how you said that you can still enjoy your life or be having a good time and it doesn't mean that your pain is gone. That one resonates especially with me because I cope with humor so much. Just because I'm laughing doesn't necessarily mean I'm okay!
i really feel that 9th one!! and it's so hard to explain to people why it hurts. i've had people not tell me about events because they "didn't want me to worry about it if traveling there would exert myself too much" etc and like, i understand they're doing it out of a place of compassion (albeit very misguided lol) but still... like someone else said in the comments just let me make the decision about if i go or not for myself! thank you for this video izzy!!
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.
Others not understanding our chronic illness and saying hurtful things is quite tough. I feel the same quite often. People don't understand how you can be 100% ok one day and completely bed bound the next in alternating ways. I also have dysautonomia and a leak heart valve. Being a guy I listen quite often the hurtful "you are just not fighting it", "you are just being weak, if you are strong willed you can do it". Others sometimes don't have an idea of how much of a fight you have to take to get up from bed, put clothes to wash and hang them. I think the worst of all was when I had difficulties breathing because of medication side effects and my friends were reluctant to get me to the hospital because "I did not look sick enough".
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.
Everything you're saying I completely agree with. I feel like I have something going on that's been going on for years. Aches, pains, fatigue, push crash cycles, anxiety, depressive episodes. Not official label given. My thoughts have been 'am I imagining it?...... I'm definitely not imagining this........or am I imagining it?!' I've searched online and seen various health professionals over the years. One dr recently said..'is it just you?'. Maybe it is, maybe it isn't. Inflammatory markers always come back negative. I am a little hypermobile in some joints. This is what's led to me finding channels like yours. I'm sorry you suffer so much, and I would never want to negate everything you are going through by telling you about my issues. It's just difficult to keep struggling isn't it.
Thank you! This was really well done and I'm sure a lot of us can relate. Some of my other pet peeves: People trying to catch me cheating on my anti-inflammatory diet to prove that I'm faking it. No, I'm just human and love food. People being surprised that I'm "still" sick. People accusing me of not "wanting" to work. People trying to shame me for not doing things for other people (that I can't even do for myself). Then there are those lucky few people who "used to" have the same condition. It's a miracle!
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?"
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.
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!
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.
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!
Thank you! ♥️. I hate when people or Doctors think because I am walking and talking the day they see me, that I am lying about my pain and imbalance. Same with pain meds! They work for me, but I’m a bad person because I take pain medication. UGh! I am missing a kidney and most over the counter medications are dangerous for my health and don’t work.
This video ☝️, have people judge you is so hard when they don’t even know a fraction of what people with chronic illness go through. This video was great, thank you for making this
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 .
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!
When I got sick of Graves disease people had no idea about it ,my parents even had no idea how it can affect you psychologically,I almost became psychotic ,my anxiety was insane(together with all the other physical symptoms) and I remember my friends being mad at me for not going out with them, eventually they ALL stopped inviting me and I stayed alone ,it really bothered me at the begining but now it doesn't anymore,they simply don't understand,I also hate other chronically Ill people that accuse me of not trying hard enough at the time ,like my diabetic friend telling me her illness is worse and that I don't try enough ,it's hard
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.☺
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 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.
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.
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.
Izzy, this video is what I wished I could have had to explain to people what I'm going through. I watched this with tears pouring down my cheeks and a smile on my face. Getting my diagnosis felt like a weight off my shoulders. Sending lots of love and hugs. Xoxo From Austin Tx
I have been off Facebook for nearly 9months. But I ALMOST want to post this to Facebook for my friends to see... but I hate Facebook too much. Thank you Izzy!
I went to physical therapy for two years to be able to exercise as much as I do, THANKS, and even then I don’t go as much as I’d like. But even though I exercised for 75(!!!) minutes on Tuesday, my POTS symptoms have been too bad to go since. Like, I probably shouldn’t pass out while using gym equipment. Oh and GOD that last one hurts. It definitely happens. At this point in my life I tend not to make plans in advance, because I never know how I’m going to feel...but most people my age will ONLY make plans in advance.
also, a positive attitude is hard to maintain when your body isnt working properly. its just a biological fact. I have spherocytosis, main daily symptom is fatigue. And when I reach a certain exhaustion level, my positivity goes out the window and it gets VERY HARD to regain control of my mind and mental health at that point.
Similar to the one about Inviting. People assume bc you say no to a certain activity that means you don't like it. I enjoy ice skating and bowling but I often say decline bc it can be painful or takes too much out of me. Then they started going ahead and doing those activites without asking me and their reason was because I don't like those activites. That hurt bc bad enough I cant do it but it felt like my freedom to choose or my liberty of having likes and dislikes was taken away by assumptions. If someone with a chronic illness says no to something dont assume they dont like it and think you have the right to tell them it's because they dont enjoy that activity. It sucks bc you cant get mad and explain yourself every time but it hurts since I actually enjoy a lot of things but cant do them. The last thing I want is to be told what I like and dont like and then be excluded.
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.
With the why haven't you tried all the treatments to illness? I would also put it the affordability to able to get treatment/ appointments, medications, natural remedies, etc, or the test or treatment not offer in the town or state you live in or not cover in the country you live in. Not cover by insurance. So many other reasons why. I totally understand your video and thank you for post it. My doctors have only figure out a few things but still in the test phase and trails of treatment.
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.
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.
I agree with all nine misconceptions!!!! My chronic illness is a result of being hit by a car while crossing a street!!! My chronic pain becomes worsts when I become cold!!! My body will "lock up" and I will "black out" and become very fatigued!! I have to use a wheelchair while in the Airport!!! My family loves me!!! But they won't accept the "limitations" of my chronic illness!!! So, I enjoy the isolation from others instead of being "verbally " abused by my family & friends!!! They want the "old" person who was very active, enjoyed traveling, created "fun" times for others and who exercised on a regular basis!!!
I have chronic daily migraines, no thyroid (removed bc of cancer 15 yrs ago), and type 1 diabetes. If I ate or didn't eat everything someone suggested to cure any or all of these I swear i would have to live on kale, cinnamon and goji berries. The "if you ate better you'd be fine" attitude (thus blaming me for all of my chronic illnesses) is my biggest pet peeve.
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..
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.
Definitely not me trying to learn how to treat people because I've thought and I've been told that I lack sympathy/compassion and I'm afraid of finding out that that's the truth...
My mom just told me today "Why don't you try ~~~?". I knew I was gonna do it but I was kinda hesitant at the time, cuz considering the time and effort I'm gonna put into it, I need some time to fully determine it. And SHE SAID, "You're NOT DESPERATE enough, if you're desperate you're totally gonna try it" :( I explained to her that this has nothing to do with being desperate, and things are ok now but still:/
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.
One time I had a friend tell me that it’s boring when they come to my house because all we do is sit around and never do anything. In all fairness to her this was early on in my diagnosis so she didn’t know to much about it but it still was kinda annoying.
Hey Izzy, one of the ones that pisses me off is that if we are trying to figure out what is going on with out bodies, we are a hypochondriac and it's just our anxiety causing the symptoms. This pisses me off because getting a diagnosis in Canada is really hard, we have under a handful of EDS specialist in the country. I've had three doctors state that I meet the criteria for ClEDS and CEDS and VEDS but I'm still waiting to see a geneticist. Until they figure out if it's VEDS a variety of doctors won't do work on me like the gasterenterologist to see what is going on or take biopsies, so the best we can do is look at the symptoms and my family history. I was having a pain flare and lost motion on the left side of my face. We have a family history of silent strokes but not fibromyalgia because it wasn't diagnosed in the past, it could be either but we can't rule out strokes yet. I hate when I have to tell people I'm really not well and then they don't believe me so I inform them that I may have had a silent stroke and then they think I'm a hypochondriac. So annoying.
I have a problem with nausea and throwing up that we’re trying to get diagnosed but we haven’t yet and so when I say I’m too sick to go anywhere my friends are like just take medicine and I’m like it just doesn’t go away and it’s hard to say no.
We HAVE to be put together even though we are dying on the inside! Because if we don’t then we are thought of being lazy, selfish and disrespectful. Or even not a good employee! I try to have a positive attitude but it’s hard to at times. I have EDS and Hello, people it causes me to have extreme pain. Try to understand that and quit being rude and mean! Epilepsy is a chronic disorder and people think that ALL epilepsies are the same: nope, there are different types of seizures. Mine are Either Absent ( petit Mal) or Grand Mal seizures. And yes, I may have to decline going to eat with you or going out shopping with you BUT know that I really want to do those things but I can’t because I’m not feeling well or I am in such high pain right now and I wouldn’t be able to enjoy our time together.
i have kidney disease and it is cronical I was born with it and I have heard everything from follow this duet to you should be healthy I had tubes sticking out of me as a child and was pushed away by society and my family no one cares I experienced violence and discrimination and am tired of people saying sick it up or it could be worse it is horrible I want people to see who I am not what I am
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.
Sometimes I’m fine for a week, and can do everything without consequences. Other times, I am in constant pain for weeks because I rode my bike.🤷♀️ it sucks. And people shouldn’t judge me for it.
“If your positive you can be able bodied”
If I break your leg just be positive and you can walk
😂😂😂😭😭🤚 yesss
There is truth to a positive mindset healing the body (I have a chronic illness). It’s just not what you want to hear from someone who doesn’t know what you’re going through.
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.
Exactly, I feel you. I had a group of "friends" years ago who I thought of as family. I hustled so hard to go to everything, pushed through pain to the point of making myself sicker. I finally learned the art of declining invites when I know I'll have my period or have a lot of appts that week. I learned to rest when I'm tired and not ignore pain. You'd think friends would be happy for you when you start to take care of yourself. But nope. As soon as I stopped putting in all the effort, they gradually stopped inviting me to things, stopped trying to connect, and just faded away. I'm glad I saw their true colours and I have way better friends now. But damn, that really hurt my feelings.
This is EXACTLY what happened to me
I have a group of friends who I’ve know for 10 years but ever since I got sick I fear everyday I’m going to lose them because I’m too much even though they’ve said they’re here for me. I feel for you because everyday I feel to different and so alone because no one I know has what I have. My friends try to understand but they can’t. They say they’re starving and ask if I want to go get food when I have a feeding tube and can’t eat then make this face because they forgot that easily. They’re good friends but not the best friends when you’re sick or maybe I’m just making these reasons up to be alone because I can’t be loved
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
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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.
Seriously it ok to voice that fact ur hurting or not feeling ok. I stopped talking about it cause I wasnt listened to and that's worse. Expressing ur self is important much love n hugs ❤❤
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.
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
Right
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! 💕
Hi, I read your comment and I felt your pain instantly. I had a terrible attack about a month ago and couldn’t even stand with a cane. How often does your vertigo attacks come on?
I have 2 diagnosed vestibular disorders that cause vertigo (but I think that I have a third one that they're missing or that it's POTS because some of my recent vertigo feels different than the ones that match the other two diagnoses). For whatever reason, I got lucky and rarely have nausea with my vertigo, but I have vertigo every single day for many hours of the day. At one point in 2016, it was an average of 22 hours a day, but now, it's more like 10 hours per day. I am still in college, and have had vestibular stuff since birth, so I bypassed ever getting this question since that isn't usually what people assume in children and college kids, but I get weird ones regularly when I talk to my professors about it like "Please let me know the night before if you'll be too sick to come to class." I'm like...do you think I schedule my dizziness and like stick it in my calendar that I'm going to be dizzy tomorrow?? This is a request I have gotten from 2 out of every 3 professors and I'm very confused by it. I also have a connective tissue disease (they think EDS, but waiting on approval for further EDS genetics testing because the TAAD panel mutation I have was only just reclassified as likely benign), and like 10+ other chronic, invisible health conditions. It is horrendous! Sending wishes for many more steady days in your life ahead.
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!!
@Michelle & Leona - Clean Beauty & Chronic Ill Life people thing anything can be fixed with exercise and eating changes. But that is definitely not the case! Pisses me off!!
I have to be careful when exercising but it's better on good days but there are certain ones I can't do
OMG yes. I literally just had a fight with someone about this. Like, exercise helps in some cases but if one more person tells me this I just might scream. Especially since I've been told by my physical therapist that any type of exercise other than the stretches and stuff I do in PT, is not good, and is hurting my body in the long run.
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.
"Did you try everything?"
Well, yeah actually, because there are no treatments for my condition. It sucks, it hurts, but it's how it is.
Right
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!
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 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
UGH SOOOOOO ANNOYING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Like it’s a good thing to have a healthy balanced diet but nah it’s not gonna cure a chronic condition, might make it more bearable because the body does need plenty of nutrients to run well
Thatbinchnikimajaj❤❤
"If ur so sick all the time maybe should see a doctor"
I got this all the time.
I felt like I lived at my drs before my recent diagnosis(36) and that they dismissed me alot. Just Growing pains(past the age for it) its stress its my weight then no its ur diet then it's in my head it's not that bad or we dont know some ppl just cant feel there arms n legs for no reason(actual happened still no diagnosis on that one). This is what many esp women face for For years!
Thank you for the video! I have chronic back and neck pain and I always get the "Have you tried swimming?" I know people do it in a good way but the looks I get when I say that I had to stop swimming at 12 because it caused me to be so much worse...
Yes, one physio at last said to me, you have to build up to swimming, you can't do it yet. It's the general advice that gets me, taking no account of your situation, muscle strength, difficulty with transport etc.
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.
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.
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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.
Its painful when your parents doesnt believe you about you having chronic illness. My mom is like "nobody is perfectly healthy" it's TRUE but I'm pretty sure it's not normal for 17 years old to have iih, depression, adrenal insufficiency, and high blood pressure. I literally have no support system except my school nurse, and counselor.
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.
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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🤗
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I unintentionally rolled my eyes 😅 this hit hard lol. Great video!
Standing is waaaay more painful than walking for me.
PREACH! I have Endometriosis and dancing can help my pain, but standing for a long time or walking for a long time can make it worse. I appreciate you for making this video :)
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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.
Thanks for sharing your thoughts. It is a year old video so I am going to go look for your newer videos. I hear my Mom in so many of these statements. Even though she knows me well, she hopes all my chronic illnesses will go away. Peace to you.
I love how you said that you can still enjoy your life or be having a good time and it doesn't mean that your pain is gone. That one resonates especially with me because I cope with humor so much. Just because I'm laughing doesn't necessarily mean I'm okay!
i really feel that 9th one!! and it's so hard to explain to people why it hurts. i've had people not tell me about events because they "didn't want me to worry about it if traveling there would exert myself too much" etc and like, i understand they're doing it out of a place of compassion (albeit very misguided lol) but still... like someone else said in the comments just let me make the decision about if i go or not for myself!
thank you for this video izzy!!
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.
Others not understanding our chronic illness and saying hurtful things is quite tough. I feel the same quite often. People don't understand how you can be 100% ok one day and completely bed bound the next in alternating ways. I also have dysautonomia and a leak heart valve. Being a guy I listen quite often the hurtful "you are just not fighting it", "you are just being weak, if you are strong willed you can do it". Others sometimes don't have an idea of how much of a fight you have to take to get up from bed, put clothes to wash and hang them. I think the worst of all was when I had difficulties breathing because of medication side effects and my friends were reluctant to get me to the hospital because "I did not look sick enough".
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.
Everything you're saying I completely agree with. I feel like I have something going on that's been going on for years. Aches, pains, fatigue, push crash cycles, anxiety, depressive episodes. Not official label given. My thoughts have been 'am I imagining it?...... I'm definitely not imagining this........or am I imagining it?!'
I've searched online and seen various health professionals over the years. One dr recently said..'is it just you?'. Maybe it is, maybe it isn't. Inflammatory markers always come back negative. I am a little hypermobile in some joints. This is what's led to me finding channels like yours. I'm sorry you suffer so much, and I would never want to negate everything you are going through by telling you about my issues. It's just difficult to keep struggling isn't it.
Thank you! This was really well done and I'm sure a lot of us can relate. Some of my other pet peeves:
People trying to catch me cheating on my anti-inflammatory diet to prove that I'm faking it. No, I'm just human and love food.
People being surprised that I'm "still" sick.
People accusing me of not "wanting" to work.
People trying to shame me for not doing things for other people (that I can't even do for myself).
Then there are those lucky few people who "used to" have the same condition. It's a miracle!
Yes, and the ones who accuse you of "faking" because you use a cane as given to you by physio, because they have seen you for three seconds!
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?"
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.
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.
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!
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.
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!
This! I actually really struggle with my own feelings that I caused my flare up
Thank you! ♥️. I hate when people or Doctors think because I am walking and talking the day they see me, that I am lying about my pain and imbalance. Same with pain meds! They work for me, but I’m a bad person because I take pain medication. UGh! I am missing a kidney and most over the counter medications are dangerous for my health and don’t work.
This video ☝️, have people judge you is so hard when they don’t even know a fraction of what people with chronic illness go through. This video was great, thank you for making this
Sobbed through this video. Thank you for sharing and being someone who understands. So hard when everyone says, "well, you don't LOOK sick!"
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 .
Hi there, Great video and I’ve got a chronic illness too! It’s great to be in this community which are so supportive
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!
When I got sick of Graves disease people had no idea about it ,my parents even had no idea how it can affect you psychologically,I almost became psychotic ,my anxiety was insane(together with all the other physical symptoms) and I remember my friends being mad at me for not going out with them, eventually they ALL stopped inviting me and I stayed alone ,it really bothered me at the begining but now it doesn't anymore,they simply don't understand,I also hate other chronically Ill people that accuse me of not trying hard enough at the time ,like my diabetic friend telling me her illness is worse and that I don't try enough ,it's hard
ugh i wish all the friends i lost understood these things! such a great series, izzy ♥♥♥
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💚
Thank you for letting me hear this. I am my own judgie person. It’s true. I am trying to live my life as best as I can and this is OK!
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.☺
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 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.
Lol I hecking love you and your videos!
Plus I relate to ALL of these!
I can relate so much. Especially to the last one. My friends never ask me to do anything anymore. It sucks.
gelasjams call and ask them to do something
Thank you so much for educating people on so many subjects. We need more people like you out there ❤️
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.
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.
Izzy, this video is what I wished I could have had to explain to people what I'm going through. I watched this with tears pouring down my cheeks and a smile on my face. Getting my diagnosis felt like a weight off my shoulders. Sending lots of love and hugs. Xoxo From Austin Tx
I have been off Facebook for nearly 9months. But I ALMOST want to post this to Facebook for my friends to see... but I hate Facebook too much. Thank you Izzy!
I went to physical therapy for two years to be able to exercise as much as I do, THANKS, and even then I don’t go as much as I’d like. But even though I exercised for 75(!!!) minutes on Tuesday, my POTS symptoms have been too bad to go since. Like, I probably shouldn’t pass out while using gym equipment.
Oh and GOD that last one hurts. It definitely happens. At this point in my life I tend not to make plans in advance, because I never know how I’m going to feel...but most people my age will ONLY make plans in advance.
Great video. I have Crohnes Disease, Rheumatoid Athritis, and osteoarthritis in my hips and you are spot on.
Omg number 7. PREACH TRUTH.
also, a positive attitude is hard to maintain when your body isnt working properly. its just a biological fact. I have spherocytosis, main daily symptom is fatigue. And when I reach a certain exhaustion level, my positivity goes out the window and it gets VERY HARD to regain control of my mind and mental health at that point.
Similar to the one about Inviting. People assume bc you say no to a certain activity that means you don't like it. I enjoy ice skating and bowling but I often say decline bc it can be painful or takes too much out of me. Then they started going ahead and doing those activites without asking me and their reason was because I don't like those activites. That hurt bc bad enough I cant do it but it felt like my freedom to choose or my liberty of having likes and dislikes was taken away by assumptions. If someone with a chronic illness says no to something dont assume they dont like it and think you have the right to tell them it's because they dont enjoy that activity. It sucks bc you cant get mad and explain yourself every time but it hurts since I actually enjoy a lot of things but cant do them. The last thing I want is to be told what I like and dont like and then be excluded.
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.
YES to each and every one of these! Thank you for the great video. ❤
With the why haven't you tried all the treatments to illness? I would also put it the affordability to able to get treatment/ appointments, medications, natural remedies, etc, or the test or treatment not offer in the town or state you live in or not cover in the country you live in. Not cover by insurance. So many other reasons why.
I totally understand your video and thank you for post it. My doctors have only figure out a few things but still in the test phase and trails of treatment.
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.
tbh you have every right to be sassy (even mad) for the things you have to put up with
You’re so right Izzy! Thank you xxxxxx
Thank you for this! I have MS (Multiple Scleroses) and recently am Diagnosed with GP ( Gastroparesis)
Yess, so annoying to hear these misconceptions! Thanks for the video : )
Amazingly helpful video, as always!
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.
I have Fibromayalgia endometriosis arthritis and so on. Your video is spot on
I agree with all nine misconceptions!!!! My chronic illness is a result of being hit by a car while crossing a street!!! My chronic pain becomes worsts when I become cold!!! My body will "lock up" and I will "black out" and become very fatigued!! I have to use a wheelchair while in the Airport!!! My family loves me!!! But they won't accept the "limitations" of my chronic illness!!! So, I enjoy the isolation from others instead of being "verbally " abused by my family & friends!!! They want the "old" person who was very active, enjoyed traveling, created "fun" times for others and who exercised on a regular basis!!!
Thanks Izzy. Having a shit time. Just appreciate something that sounds reassuring.
No in 37 yrs I haven’t thought to try that 🤦♀️
I have chronic daily migraines, no thyroid (removed bc of cancer 15 yrs ago), and type 1 diabetes. If I ate or didn't eat everything someone suggested to cure any or all of these I swear i would have to live on kale, cinnamon and goji berries. The "if you ate better you'd be fine" attitude (thus blaming me for all of my chronic illnesses) is my biggest pet peeve.
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..
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.
Wonderful video! I get all of those a lot.
Definitely not me trying to learn how to treat people because I've thought and I've been told that I lack sympathy/compassion and I'm afraid of finding out that that's the truth...
I love this video i always come back to it when i feel blamed
My mom just told me today "Why don't you try ~~~?". I knew I was gonna do it but I was kinda hesitant at the time, cuz considering the time and effort I'm gonna put into it, I need some time to fully determine it. And SHE SAID, "You're NOT DESPERATE enough, if you're desperate you're totally gonna try it" :(
I explained to her that this has nothing to do with being desperate, and things are ok now but still:/
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.
One time I had a friend tell me that it’s boring when they come to my house because all we do is sit around and never do anything. In all fairness to her this was early on in my diagnosis so she didn’t know to much about it but it still was kinda annoying.
7:04 *reads text on the screen* If that's what you have to do to get your point across...
Hey Izzy, one of the ones that pisses me off is that if we are trying to figure out what is going on with out bodies, we are a hypochondriac and it's just our anxiety causing the symptoms. This pisses me off because getting a diagnosis in Canada is really hard, we have under a handful of EDS specialist in the country. I've had three doctors state that I meet the criteria for ClEDS and CEDS and VEDS but I'm still waiting to see a geneticist. Until they figure out if it's VEDS a variety of doctors won't do work on me like the gasterenterologist to see what is going on or take biopsies, so the best we can do is look at the symptoms and my family history. I was having a pain flare and lost motion on the left side of my face. We have a family history of silent strokes but not fibromyalgia because it wasn't diagnosed in the past, it could be either but we can't rule out strokes yet. I hate when I have to tell people I'm really not well and then they don't believe me so I inform them that I may have had a silent stroke and then they think I'm a hypochondriac. So annoying.
Exactly 💕 thank you for saying this!
I have a problem with nausea and throwing up that we’re trying to get diagnosed but we haven’t yet and so when I say I’m too sick to go anywhere my friends are like just take medicine and I’m like it just doesn’t go away and it’s hard to say no.
You said it all
We HAVE to be put together even though we are dying on the inside! Because if we don’t then we are thought of being lazy, selfish and disrespectful. Or even not a good employee! I try to have a positive attitude but it’s hard to at times. I have EDS and Hello, people it causes me to have extreme pain. Try to understand that and quit being rude and mean! Epilepsy is a chronic disorder and people think that ALL epilepsies are the same: nope, there are different types of seizures. Mine are Either Absent ( petit Mal) or Grand Mal seizures. And yes, I may have to decline going to eat with you or going out shopping with you BUT know that I really want to do those things but I can’t because I’m not feeling well or I am in such high pain right now and I wouldn’t be able to enjoy our time together.
Can you make a video of dealing with chronic illnesses through college?
ok so i got a daily harvest add before this video guys i think karens are taking over
i have kidney disease and it is cronical I was born with it and I have heard everything from follow this duet to you should be healthy
I had tubes sticking out of me as a child and was pushed away by society and my family no one cares I experienced violence and discrimination and am tired of people saying sick it up or it could be worse it is horrible I want people to see who I am not what I am
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.
Sometimes I’m fine for a week, and can do everything without consequences. Other times, I am in constant pain for weeks because I rode my bike.🤷♀️ it sucks. And people shouldn’t judge me for it.
Yessss standing (showers) are so much harder then walking!!!!!!! 😂😂😭😭 I can’t explain it... but this is sooo true!
Omg yes
Hope you got a shower chair