"You just" are the two words that can shut me down the hardest. Experience has taught me that this means the speaker has good intentions but absolutely nothing else to contribute: not facts, not experience, and certainly not empathy. It's massively discouraging, and so lonely.
You're so right but you missed when people say "you should volunteer more so that you don't think too much about your pain" and also "you are paying for sins in your past"
I recently got diagnosed with ME/CFS, probably from Long Covid (possibly had it before but on milder side, not sure), and almost definitely have POTS..and my life is slowly crumbling away. I cant walk very far, even within my house. I cant be upright for too long. I would LOVE to do the things (exercise, hobbies,socializing etc) people are suggesting that healthy folks take for granted. I cant, because they make me deteriorate. Even my parents who are my caregivers (sometimes unintentionally) invalidate me and pressure me to do things that make me worse. Having such a severe chronic illness has opened my eyes to the people in my life who truly have my back, and those who don’t.
Your symptoms will come and go, then you will get new ones. 28 years here, the pots didn't start until 3 years ago for me. A million different symptoms. I knew it was going to happen when covid first started.
Absolutely fabulous video. 👌 ❤ Nailed it in so many ways. Worst phrases ever "maybe if you".....Or......"did you try"...... "well at least". If they dont have chronic pain/illness, they won't get it. The end. Take care 😊
👆DING, DING, DING!!! Especially the "Well at least"! Talk about the ultimate put-down! You're so right, they will not understand. Why can't people just have a listening ear? They ask "why didn't you make it to the --- (family picnic, restaurant, graduation, ect.) You try to explain....and that is where they stop hearing you ... because what works for them...they assume will work for every human being. We know that that isn't true, some of us are sick/crippled all the time, although there may be an occasional day where we may get up enough gumption to make it out the door for a few min. or a couple hours if we are lucky. And unlike my former brother in law who witnessed my mother make it to the bathroom on her own once or twice, does not mean she was FAKING IT when she mostly could not!
Needs to be sent to everyone that knows someone with Lyme disease. "Are you sure it's not all in your head" I hear almost daily. Anyone who says " there is always someone worse off" has never had Lyme Disease.
SO TRUE! I never knew about Lyme, but I’ve actually had decades of Lyme, and now at 69, I have it bad! No one understands Lyme, so they can’t believe that my son and I both have it. The pain is horrendous, and my life right now has been ruined. Don’t let it define you is whether meditations have said. It doesn’t work unless I have heavy pain meds, which my son steals, so that’s trauma and PTSD. Long story! It’s sickening.
There is a understanding between Mental health sufferers that you never compare people's suffering. What I had seen and read about Lyme disease it can be added to this list.
Just wanted to also say that by all these judgements that people put on us, it causes a separation, as being judged or devalued and unheard or seen is hard to take when in one moment you are seen out, dressed and washed and someone says, see, you can do it, you just need to make the effort.....they have absolutely no idea how much effort it has taken to get to that point, to line up all your ducks in a row, get past the pain/fatigue etc to be able to get to one appointment or some such thing... The separation in those statements and isolation is immense and the loneliness that ensues adds to this whole journey of being chronically sick....and so, your video SAYS IT ALL, SUCCINCTLY....thank you so much...xxx
Ageism and chronic illness is just as bad when you get older too. Everyone, I mean everyone assumes what's wrong with you is based on your age and don't care as much. Yet, its possible to be very healthy and active up into your 60's sometimes beyond. Also, "have you tried" and "you just need to" are so patronizing and ridiculous. I can't tell you how many times I've personally shut people down/up by telling them all the things I'm doing or trying to improve my health on my own. They literally have no comeback and get upset with me for wanting better for myself!! Honestly, most people who don't suffer don't want to do the work to help someone who is.
Thank you for that video. I have chronic migraine and chronic pain (amongst other chronic health issues), I can't count the number of times people have asked me if I tried this or that (acupuncture, yoga, going gluten free, etc)... I tell them "I have tried everything but thank you for your concern". Nowadays, I only get angry when it's coming from health care professionals trying to recommend completely ridiculous stuff ("have you tried cold showers?" ... I'm allergic to cold, but maybe an anaphylactic shock is what I need, thanks) or when it's clearly stated in my file that this course of treatment/action has already been tried and failed or is already in place, but they just didn't bother to read it. My now ex-psychotherapist, after a year, went with "I think you would benefit from massages and physiotherapy rather than just talk therapy", I had to remind him that I was going to PT 2x a week.
Absolutely brilliant.....All the things I’ve heard and felt over the years, very succinctly put. Know I’ve felt, put down, undermined, not heard and devalued by all you have said here, even tho i know sometimes people were well intentioned, the result was to feel devalued and not really seen or heard, until in some way a person in my world got sick and then they came to me for my input....cos as being chronically sick for 30 years, we know this stuff, (always proactive in trying everything out there to help ourselves)even if we cant put a finger on how we are being undermined at a particular time by authorities or some so say person in our world, we get it how people can be dismissed and devalued in their world of chronic sickness. Thank you so much for this video, bless you and keep up your great work, love your videos and wish you so well in your health and everything. Xxx
Georgina stone yes absolutely. When we invalidate someone’s entire experience (and I do believe there are people who are well intentioned and poor intentioned both represented here) we do essentially devalue all the things that come with that experience. It’s terrible being on the other end of that but I hope this helps at least some well intentioned folks see their harm and do better 🙏
I suffer from chronic neuropathic pain mostly down my left side after a medical procedure, my spinal cord was damaged, I've had the same sort of comments said to me, some people have no idea.
Ihave endured this for yrs. It is EXTREMELY frustrating unhelpful, and downright insulting. EVERYONE KNOWS MORE How to live w/ what I endure, than I do!!!!! I decide more and more to condense my circle of "friends". I have enough STRESS w/o that. Unfortunate, but when people are unteachable for yrs. , what is left to do???
THIS! you just landed yourself a new client in Michigan if you're still in practice for telehealth counseling; all I've ever wanted is a therapist who actually knows how to help and not further hurt chronic pain/illness patients! You r the FIRST professional I have heard saying things that make sense and that I totally agree with and would feel safe talking to you. Most "counselors" DO say these extremely hurtful awful things and more that just drive me as far away from professional therapy as possible
I suffered from chronic illness. I went to my doctor and spoke about my suicidality , he responded by saying " do you know how many people I have saying that in a week ????" Well I just shut up and shut down . On and on it goes . I just don't talk about it any more. I just carry on as best I can .
A lifelong friend actually told me I take too many pills. I completely agree with your statement of needing the medications to stay alive. I have Sarcoidosis and it has damaged most of my organs.
Girl, I love every point you bring on here SO MUCH!!! I WANNA SEND THIS VIDEO TO ALL MY FRIENDS... Wait, all the friends I have left they have chronic disease as well, they don't need it... Or actually yes, they do, for their friends... If they still have any non chronicly I'll friends... Whatever. Thank you so much!
Thanks for making this video, I'm surprised it doesn't have more views, but that's the way the ball bounces with TH-cam. one has to make hundred or even thousands of videos to start to get noticed. With the exception of the age thing, I don't know I guess people use that one as much with me, but I have heard every one of these a thousand times, and every single time it's like nails on a chalkboard. I'm keeping a little journal on myFacebook about me trying to go through this little challenge I'm putting myself through to try and see if I can correct my illness a little bit, and people jump in there and just start saying the same s***. "Oh, bro it's all in your mind even if you have a physical illness you can use the power of your mind and the power of positivity to heal yourself. You're just not ready to heal yet." and I want to just smash stuff when I hear that. Are you kidding? Like I haven't spent hundreds or thousands of hours trying to do every power of positivity f****** course on the face of Earth? And I still got worse? or the, "yeah I go to the gym bro, I'm feeling a lot better about my life since I started hitting the gym.." And I would like to force them, kind of like the ghosts that Scrooge had, to go back to the times that I was at the gym to try and be healthy, and watch the times that even after making weeks or months of progress I finally just crashed and couldn't go back to the gym for a couple of months and everything in my life of fell apart because of my illness being triggered every single springtime I don't know I guess these people mean well but it's almost like they're insulting me. I unfriended a guy on Facebook today because he literally responded this morning after trying to tell me how it was all about in my mind, and that he knows because he went through the same thing I went through with depression and anxiety, when that's not at all what I'm going through... That he learned how to beat it, and I just needed to be more positive.. Yeah, maybe the picture of the glass of beer that you have on your profile probably is how you're treating your illness right now with all the positivity that that alcohol gives you.. When I told him he was drunk, he deleted all his comments. Then the next day, he comes back and tells me "you're not ready to heal yet." f****** pure insulting! Where's all his positive attitude if he's going to come here the next day and actually try and tell me that I'm not ready to heal? What happened to the 20 comments about "positivity bro"? I guess that hangover made him a little less positive in the morning
Yes I totally get it! I’ve been very sick this past year so I haven’t had a chance to make more videos but I’m hoping to start putting out new content soon. I’ll try to address these experiences too! Thanks for the feedback 🙏
@@ImagineLifeTherapy One Day at A time, since I actually wrote that last comment I found out there's a good possibility I have Lyme disease. Haha. Life goes on man.
That’s what I have! Was sick for almost 9 years before I found a doctor that would finally agree to test me. I was super positive for an acute AND late stage infection too. Bleh
@@ImagineLifeTherapy I'm still in the early stages of finding out after dealing this this for 20 years roughly, maybe more, and having the medical community SUCK for 10 years of me actually trying to figure out what it was let alone get it treated. I have 1 doctor that is awesome while all the rest have been shit. My current GP isn't bad either but she gave up after I took a list of tests to her includiung lyme and the 1st lyme came back positive but the western blot did not come back positive. But that's where my specialist who has been awesome since I was lucky enough to find her picked up the slack. Trying out Antibiotics as we speak.
@@GeeseFX oh good! Remember if you feel sicker they’re working. Especially after being sick that long. Epsom salt baths help! I wish you luck - it can be a long grueling road 🙏
And then they turn around and say, "Don't take it personally"...... 🙄😑 Ankylosing Spondylitis both SI joints are fused,and have the HLA-B27 gene. I also have Fibromyalgia, congenital spinal stenosis in my neck (born with a narrow spinal canal), bilateral cubical tunnel, bilateral carpal tunnel, osteoporosis, depression, anxiety, C-PTSD. AND I am immunocompromised, I take it for Ankylosing Spondylitis....
The worse for me is the "if you wanted to you would" attitude, nothing stresses me out like having to constantly explain and argue with people over my capabilities, like you can just turn off your illness to suit their agenda. I think that's how I ended up with like one friend lol
Unfortunately in my mother in laws case she does nothing that her Drs tell her to do as far as following an anti inflammatory diet, PT after surgery she chooses not to participate, takes her opioids in the first 3 days so the next 4 days she has nothing for pain; it makes it hard to feel sorry for her with her auto immune diseases and also makes it hard to have empathy after 17 years of her not following any medical directives.
As if the Only way to look disabled is if we were to have a ?leg? growing out of our neck or some other very obvious disablement. (please lease forgive me if you have a leg growing out of your neck, I truly sympathize!) They truly don't understand biology at its basest level. Our internal organs are just that...Internal!!
You just get fed up with trying to explain why you just cannot go for a walk, or really do anything despite all the years of trying and always suffering after effects if you do try.
I’m married to a personal trainer who nags me all the time and it’s upsetting. He can’t understand lack of exercise didn’t cause this nor will fix it!!!
The best thing to do is ask permission ‘is it ok if I offer some advice?’ ‘Do you need support right now with what you’re going through?’ If they say no - respect that and honor their wishes. If they say yes, follow up with ‘what do you need? How can I best support you?’ Instead of determining what they need yourself. They are the best experts of their own experience and should be at the center of determining what their own needs are.
@@ImagineLifeTherapy I think that is one category, yes. But that category needs its own video and doesn't belong in THIS one. Your title is about the other category.
You asked, so I answered. No this is not addressed in the video (hence it not being in the title) as I already mentioned in my other post because that is not what this video is about.
@@ImagineLifeTherapy I thank you for this answer. I am talking about a patient I met in my line of work. She is in need of help, but she seems downcast and suspicious of my offer to talk over the topic. She gave me her phone number so I can call her. I gave her a list of videos to view online with her daughter's help to see them. She doesn't speak English, and I am her interpreter. I'd like to give her a call, but I was wondering if it would be better to ask her if she has questions about the material or topic. If she doesn't, then there's my answer -- and I will invite her to call me any time, but I won't intrude further because she seems to prefer where she is at. Do you share this perspective?
THANK YOU!! Oh my stars, I’ve heard all of this so many times. It took me 32 doctors to get to the root of the problem. My spinal canal is too small for my spinal cord. So, while I have herniated discs, and arthritis, and fibromyalgia, diabetes and bone spurs so thick in my next that 4 seconds on a pull and release traction bed put me into tears (I’ve passed only 26 kidney stones so pain is subjective ) people still give me break through advice! It’s absurd. I went for nerve ablation, 3 sessions and approximately 27 needle insertions (oh that’s right, I cannot stand needles) I got terrific results. Nope, in fact the numbing agent did not stop me from feeling those needles in my neck bone. So please, respect that those of us in constant, every minute of every day pain don’t need advice like “eat more mustard because it’s got turmeric in it” or “there is no doubt that acupuncture is the one time fix you need”. Be respectful that our whole lives have changed forever. For me it was giving up work. I had planned to work the rest of my life. I love classic cars. I have two that I cannot wrench on because I can’t stand, bend, flex, etc because my hand arms get and legs go numb and I’m know to pass out. And don’t be like my family who wants to hold me to the fun, silly guy I was when I DIDN’T HURT ALL HOURS DAY AND NIGHT, and there is nothing zero that doctors can do to help a 61 year old man replace or repair his entire spinal system. Cannot be done. Excellent video, btw. You touched a nerve!
I’m beginning to wonder about that and “dirty electricity”, something I recently found out about. I have a plug near my head while I lie in bed and it’s not grounded. It’s a 1958 house. Ugh! Anyone want a roommate?
This is a personal and professional view from almost a decade of working with people living with chronic illness - the solution is don’t say these things. I go into a LOT of detail about why these statements are harmful and the impact they can have, so the fact that you’re taking this perspective is curious. Just being mindful to avoid using these phrases equates to countless ways you can do better when supporting someone with a chronic illness.
Ok -- WHAT ARE THE SEVEN THINGS??? WHAT ARE THE BETTER WAYS TO SAY THEM INSTEAD?? This is not a correction, Amanda, but a judgemental tirade INSTEAD with a sardonic attitude. Touché, I guess....🙄
I gave the 7 things - in the video - let’s manage expectations here : the video title is not ‘7 things never to say to someone with chronic illness AND what to say instead’ it’s just the ‘7 things not to say’. - I’m happy to create a follow up video with ‘what to say instead’.
@@ImagineLifeTherapy maybe it's me... I didn't hear 🙉 a clear count down - but a digression into how some people start telling others how to live their lives without being invited to do so. That is off the POINT. I was really interested in the point being made in your title. Am I wrong?
@@debrahurtado5491 you literally asked ‘what are better ways to say them instead?’ And ‘what about people who need help but won’t take it when you offer it to them’ - so I was answering that question - not off point from what you asked The numbers of the items are in the video. Did you watch it? There is a visual element of you’re watching it. If you’re listening and not watching the visual element, I have clear points where I enact a ‘thing someone tends to say’ and then explain why it’s not appropriate. I don’t say 1. 2. Etc that is in the visual element of the video at the bottom.
I am chronically ill and I am so tired of people, especially family members, who tell me I just need to exercise. UGH!!!!
Omg yes I have ME/CFS exercise make me worst and every freaking doctor send me to do it
"You just" are the two words that can shut me down the hardest. Experience has taught me that this means the speaker has good intentions but absolutely nothing else to contribute: not facts, not experience, and certainly not empathy. It's massively discouraging, and so lonely.
Thank you for validating my chronic illness by putting this video out.
You're so right but you missed when people say "you should volunteer more so that you don't think too much about your pain" and also "you are paying for sins in your past"
I recently got diagnosed with ME/CFS, probably from Long Covid (possibly had it before but on milder side, not sure), and almost definitely have POTS..and my life is slowly crumbling away. I cant walk very far, even within my house. I cant be upright for too long. I would LOVE to do the things (exercise, hobbies,socializing etc) people are suggesting that healthy folks take for granted. I cant, because they make me deteriorate. Even my parents who are my caregivers (sometimes unintentionally) invalidate me and pressure me to do things that make me worse. Having such a severe chronic illness has opened my eyes to the people in my life who truly have my back, and those who don’t.
Your symptoms will come and go, then you will get new ones. 28 years here, the pots didn't start until 3 years ago for me. A million different symptoms. I knew it was going to happen when covid first started.
Absolutely fabulous video. 👌 ❤ Nailed it in so many ways. Worst phrases ever "maybe if you".....Or......"did you try"...... "well at least". If they dont have chronic pain/illness, they won't get it. The end.
Take care 😊
👆DING, DING, DING!!! Especially the "Well at least"! Talk about the ultimate put-down! You're so right, they will not understand. Why can't people just have a listening ear? They ask "why didn't you make it to the --- (family picnic, restaurant, graduation, ect.) You try to explain....and that is where they stop hearing you ... because what works for them...they assume will work for every human being. We know that that isn't true, some of us are sick/crippled all the time, although there may be an occasional day where we may get up enough gumption to make it out the door for a few min. or a couple hours if we are lucky. And unlike my former brother in law who witnessed my mother make it to the bathroom on her own once or twice, does not mean she was FAKING IT when she mostly could not!
As someone with multiple comorbid chronic conditions, please allow me to say thank you for this video. Now we just have to make it go viral.
Health professionals are guilty of this too, making u feel like ur not thst bad, or saying u look like u walk alot??
Something doctors say is “it’s just a migraine” like it’s the common cold and it will go away. I have never felt so dismissed in my life.
Needs to be sent to everyone that knows someone with Lyme disease.
"Are you sure it's not all in your head" I hear almost daily.
Anyone who says " there is always someone worse off" has never had Lyme Disease.
SO TRUE! I never knew about Lyme, but I’ve actually had decades of Lyme, and now at 69, I have it bad! No one understands Lyme, so they can’t believe that my son and I both have it. The pain is horrendous, and my life right now has been ruined.
Don’t let it define you is whether meditations have said. It doesn’t work unless I have heavy pain meds, which my son steals, so that’s trauma and PTSD. Long story! It’s sickening.
There is a understanding between Mental health sufferers that you never compare people's suffering. What I had seen and read about Lyme disease it can be added to this list.
Just wanted to also say that by all these judgements that people put on us, it causes a separation, as being judged or devalued and unheard or seen is hard to take when in one moment you are seen out, dressed and washed and someone says, see, you can do it, you just need to make the effort.....they have absolutely no idea how much effort it has taken to get to that point, to line up all your ducks in a row, get past the pain/fatigue etc to be able to get to one appointment or some such thing...
The separation in those statements and isolation is immense and the loneliness that ensues adds to this whole journey of being chronically sick....and so, your video SAYS IT ALL, SUCCINCTLY....thank you so much...xxx
Georgina stone thank you for sharing 🙏
Imagine Life Therapy ...thank you so much for responding directly, that means so much too.....blessings...😘
And funny!!!
Ageism and chronic illness is just as bad when you get older too.
Everyone, I mean everyone assumes what's wrong with you is based on your age and don't care as much.
Yet, its possible to be very healthy and active up into your 60's sometimes beyond.
Also, "have you tried" and "you just need to" are so patronizing and ridiculous.
I can't tell you how many times I've personally shut people down/up by telling them all the things I'm doing or trying to improve my health on my own.
They literally have no comeback and get upset with me for wanting better for myself!!
Honestly, most people who don't suffer don't want to do the work to help someone who is.
relatable on every level! Working out has helped me so much but if it were JUST a matter of yoga I wouldn't still be sick 10 years later.
It is called Gaslighting from Doctors! Boy, have I had my fill of that.
Medical field is going down hill.
Thank you for that video. I have chronic migraine and chronic pain (amongst other chronic health issues), I can't count the number of times people have asked me if I tried this or that (acupuncture, yoga, going gluten free, etc)... I tell them "I have tried everything but thank you for your concern". Nowadays, I only get angry when it's coming from health care professionals trying to recommend completely ridiculous stuff ("have you tried cold showers?" ... I'm allergic to cold, but maybe an anaphylactic shock is what I need, thanks) or when it's clearly stated in my file that this course of treatment/action has already been tried and failed or is already in place, but they just didn't bother to read it. My now ex-psychotherapist, after a year, went with "I think you would benefit from massages and physiotherapy rather than just talk therapy", I had to remind him that I was going to PT 2x a week.
Time to report "professionals" who don't bother to read your medical history, out at least ask.
@@kdcbattlecreek I wish I had the energy for it.
Absolutely brilliant.....All the things I’ve heard and felt over the years, very succinctly put. Know I’ve felt, put down, undermined, not heard and devalued by all you have said here, even tho i know sometimes people were well intentioned, the result was to feel devalued and not really seen or heard, until in some way a person in my world got sick and then they came to me for my input....cos as being chronically sick for 30 years, we know this stuff, (always proactive in trying everything out there to help ourselves)even if we cant put a finger on how we are being undermined at a particular time by authorities or some so say person in our world, we get it how people can be dismissed and devalued in their world of chronic sickness.
Thank you so much for this video, bless you and keep up your great work, love your videos and wish you so well in your health and everything.
Xxx
Georgina stone yes absolutely. When we invalidate someone’s entire experience (and I do believe there are people who are well intentioned and poor intentioned both represented here) we do essentially devalue all the things that come with that experience. It’s terrible being on the other end of that but I hope this helps at least some well intentioned folks see their harm and do better 🙏
“You don’t look sick”, “you just need to”, and “have you tried” is what my Chronic Illness therapist told me. I’m dropping her.
I suffer from chronic neuropathic pain mostly down my left side after a medical procedure, my spinal cord was damaged, I've had the same sort of comments said to me, some people have no idea.
Ihave endured this for yrs. It is EXTREMELY frustrating unhelpful, and downright insulting. EVERYONE KNOWS MORE How to live w/ what I endure, than I do!!!!! I decide more and more to condense my circle of "friends". I have enough STRESS w/o that. Unfortunate, but when people are unteachable for yrs. , what is left to do???
Exactly! They just need to go through tve same pain that I go through everyday. Some people are so self- centered that they can’t relate.
All I have to say to you is thank you and AMEN! You hit the nail on the head with all of those!
I hear, “You need to….”. The medication thing is so true as well!
Great video!!!
THIS! you just landed yourself a new client in Michigan if you're still in practice for telehealth counseling; all I've ever wanted is a therapist who actually knows how to help and not further hurt chronic pain/illness patients! You r the FIRST professional I have heard saying things that make sense and that I totally agree with and would feel safe talking to you. Most "counselors" DO say these extremely hurtful awful things and more that just drive me as far away from professional therapy as possible
"Have you tried"?
The fact that people say this stuff so often has basically given me a type of agoraphobia.
Yes it can definitely have an impact that creates fear and avoidance of social situations aka social anxiety 😟
I have it too!
You just get the feeling that no matter what you say, family just do not believe you, though younhave been in a wheelchair for so many years!
I suffered from chronic illness. I went to my doctor and spoke about my suicidality , he responded by saying " do you know how many people I have saying that in a week ????"
Well I just shut up and shut down .
On and on it goes .
I just don't talk about it any more.
I just carry on as best I can .
A lifelong friend actually told me I take too many pills. I completely agree with your statement of needing the medications to stay alive. I have Sarcoidosis and it has damaged most of my organs.
Girl, I love every point you bring on here SO MUCH!!! I WANNA SEND THIS VIDEO TO ALL MY FRIENDS... Wait, all the friends I have left they have chronic disease as well, they don't need it... Or actually yes, they do, for their friends... If they still have any non chronicly I'll friends... Whatever. Thank you so much!
Excellent !
What you said was so true. I look forward to coming back to your channel. Thank you so much.
One of the worst is, what are we going to do with your mental problems? They have no idea of what brain fog we have to cope with!
Thanks for making this video, I'm surprised it doesn't have more views, but that's the way the ball bounces with TH-cam. one has to make hundred or even thousands of videos to start to get noticed.
With the exception of the age thing, I don't know I guess people use that one as much with me, but I have heard every one of these a thousand times, and every single time it's like nails on a chalkboard.
I'm keeping a little journal on myFacebook about me trying to go through this little challenge I'm putting myself through to try and see if I can correct my illness a little bit, and people jump in there and just start saying the same s***. "Oh, bro it's all in your mind even if you have a physical illness you can use the power of your mind and the power of positivity to heal yourself. You're just not ready to heal yet."
and I want to just smash stuff when I hear that. Are you kidding? Like I haven't spent hundreds or thousands of hours trying to do every power of positivity f****** course on the face of Earth? And I still got worse?
or the, "yeah I go to the gym bro, I'm feeling a lot better about my life since I started hitting the gym.."
And I would like to force them, kind of like the ghosts that Scrooge had, to go back to the times that I was at the gym to try and be healthy, and watch the times that even after making weeks or months of progress I finally just crashed and couldn't go back to the gym for a couple of months and everything in my life of fell apart because of my illness being triggered every single springtime
I don't know I guess these people mean well but it's almost like they're insulting me.
I unfriended a guy on Facebook today because he literally responded this morning after trying to tell me how it was all about in my mind, and that he knows because he went through the same thing I went through with depression and anxiety, when that's not at all what I'm going through... That he learned how to beat it, and I just needed to be more positive..
Yeah, maybe the picture of the glass of beer that you have on your profile probably is how you're treating your illness right now with all the positivity that that alcohol gives you..
When I told him he was drunk, he deleted all his comments.
Then the next day, he comes back and tells me "you're not ready to heal yet."
f****** pure insulting! Where's all his positive attitude if he's going to come here the next day and actually try and tell me that I'm not ready to heal? What happened to the 20 comments about "positivity bro"? I guess that hangover made him a little less positive in the morning
Yes I totally get it! I’ve been very sick this past year so I haven’t had a chance to make more videos but I’m hoping to start putting out new content soon. I’ll try to address these experiences too! Thanks for the feedback 🙏
@@ImagineLifeTherapy One Day at A time, since I actually wrote that last comment I found out there's a good possibility I have Lyme disease. Haha. Life goes on man.
That’s what I have! Was sick for almost 9 years before I found a doctor that would finally agree to test me. I was super positive for an acute AND late stage infection too. Bleh
@@ImagineLifeTherapy I'm still in the early stages of finding out after dealing this this for 20 years roughly, maybe more, and having the medical community SUCK for 10 years of me actually trying to figure out what it was let alone get it treated. I have 1 doctor that is awesome while all the rest have been shit. My current GP isn't bad either but she gave up after I took a list of tests to her includiung lyme and the 1st lyme came back positive but the western blot did not come back positive. But that's where my specialist who has been awesome since I was lucky enough to find her picked up the slack. Trying out Antibiotics as we speak.
@@GeeseFX oh good! Remember if you feel sicker they’re working. Especially after being sick that long. Epsom salt baths help! I wish you luck - it can be a long grueling road 🙏
And then they turn around and say, "Don't take it personally"...... 🙄😑
Ankylosing Spondylitis both SI joints are fused,and have the HLA-B27 gene. I also have Fibromyalgia, congenital spinal stenosis in my neck (born with a narrow spinal canal), bilateral cubical tunnel, bilateral carpal tunnel, osteoporosis, depression, anxiety, C-PTSD. AND I am immunocompromised, I take it for Ankylosing Spondylitis....
The worse for me is the "if you wanted to you would" attitude, nothing stresses me out like having to constantly explain and argue with people over my capabilities, like you can just turn off your illness to suit their agenda. I think that's how I ended up with like one friend lol
Unfortunately in my mother in laws case she does nothing that her Drs tell her to do as far as following an anti inflammatory diet, PT after surgery she chooses not to participate, takes her opioids in the first 3 days so the next 4 days she has nothing for pain; it makes it hard to feel sorry for her with her auto immune diseases and also makes it hard to have empathy after 17 years of her not following any medical directives.
did it hit a nerve or something?
sorry, I don't know how to put it, so it sounds better, but it's not ment as something bad..
I get " You're too young for this! " while sitting in a room of people 20 years older than I am.
My mom: Don't let your disability define you!
Me:(thinking) Try having my disabilities for a week!
Thank you for the interesting input ... (4, 5, 7)
❤ Well done ❤
The friendly comments are the worst. You don’t look disabled. Come on, don’t limit yourself. You shouldn’t xxx, and you need to try yyy. It’s endless!
As if the Only way to look disabled is if we were to have a ?leg? growing out of our neck or some other very obvious disablement. (please lease forgive me if you have a leg growing out of your neck, I truly sympathize!) They truly don't understand biology at its basest level. Our internal organs are just that...Internal!!
You just get fed up with trying to explain why you just cannot go for a walk, or really do anything despite all the years of trying and always suffering after effects if you do try.
I’m married to a personal trainer who nags me all the time and it’s upsetting.
He can’t understand lack of exercise didn’t cause this nor will fix it!!!
What about people who need help but won't discuss it when help is offered??
Who determined they needed help? When help is offered it’s often being centered by the person offering the help - not the person themselves.
The best thing to do is ask permission ‘is it ok if I offer some advice?’ ‘Do you need support right now with what you’re going through?’ If they say no - respect that and honor their wishes. If they say yes, follow up with ‘what do you need? How can I best support you?’ Instead of determining what they need yourself. They are the best experts of their own experience and should be at the center of determining what their own needs are.
@@ImagineLifeTherapy I think that is one category, yes. But that category needs its own video and doesn't belong in THIS one. Your title is about the other category.
You asked, so I answered. No this is not addressed in the video (hence it not being in the title) as I already mentioned in my other post because that is not what this video is about.
@@ImagineLifeTherapy I thank you for this answer. I am talking about a patient I met in my line of work. She is in need of help, but she seems downcast and suspicious of my offer to talk over the topic. She gave me her phone number so I can call her. I gave her a list of videos to view online with her daughter's help to see them. She doesn't speak English, and I am her interpreter. I'd like to give her a call, but I was wondering if it would be better to ask her if she has questions about the material or topic. If she doesn't, then there's my answer -- and I will invite her to call me any time, but I won't intrude further because she seems to prefer where she is at. Do you share this perspective?
Pretty good advice I would add worse thing to do is hunt for miracle cures.
THANK YOU!! Oh my stars, I’ve heard all of this so many times.
It took me 32 doctors to get to the root of the problem.
My spinal canal is too small for my spinal cord. So, while I have herniated discs, and arthritis, and fibromyalgia, diabetes and bone spurs so thick in my next that 4 seconds on a pull and release traction bed put me into tears (I’ve passed only 26 kidney stones so pain is subjective ) people still give me break through advice! It’s absurd.
I went for nerve ablation, 3 sessions and approximately 27 needle insertions (oh that’s right, I cannot stand needles) I got terrific results. Nope, in fact the numbing agent did not stop me from feeling those needles in my neck bone.
So please, respect that those of us in constant, every minute of every day pain don’t need advice like “eat more mustard because it’s got turmeric in it” or “there is no doubt that acupuncture is the one time fix you need”. Be respectful that our whole lives have changed forever. For me it was giving up work. I had planned to work the rest of my life.
I love classic cars. I have two that I cannot wrench on because I can’t stand, bend, flex, etc because my hand arms get and legs go numb and I’m know to pass out.
And don’t be like my family who wants to hold me to the fun, silly guy I was when I DIDN’T HURT ALL HOURS DAY AND NIGHT, and there is nothing zero that doctors can do to help a 61 year old man replace or repair his entire spinal system. Cannot be done.
Excellent video, btw. You touched a nerve!
Just say, "How can I help you?".
Toxic positivity
cause; microwaves
I’m beginning to wonder about that and “dirty electricity”, something I recently found out about. I have a plug near my head while I lie in bed and it’s not grounded. It’s a 1958 house. Ugh!
Anyone want a roommate?
So its just a personal view of yours then cause your not offering any solution
This is a personal and professional view from almost a decade of working with people living with chronic illness - the solution is don’t say these things. I go into a LOT of detail about why these statements are harmful and the impact they can have, so the fact that you’re taking this perspective is curious. Just being mindful to avoid using these phrases equates to countless ways you can do better when supporting someone with a chronic illness.
Ok -- WHAT ARE THE SEVEN THINGS??? WHAT ARE THE BETTER WAYS TO SAY THEM INSTEAD?? This is not a correction, Amanda, but a judgemental tirade INSTEAD with a sardonic attitude. Touché, I guess....🙄
I gave the 7 things - in the video - let’s manage expectations here : the video title is not ‘7 things never to say to someone with chronic illness AND what to say instead’ it’s just the ‘7 things not to say’. - I’m happy to create a follow up video with ‘what to say instead’.
@@ImagineLifeTherapy maybe it's me... I didn't hear 🙉 a clear count down - but a digression into how some people start telling others how to live their lives without being invited to do so. That is off the POINT. I was really interested in the point being made in your title. Am I wrong?
@@debrahurtado5491 you literally asked ‘what are better ways to say them instead?’ And ‘what about people who need help but won’t take it when you offer it to them’ - so I was answering that question - not off point from what you asked
The numbers of the items are in the video. Did you watch it? There is a visual element of you’re watching it. If you’re listening and not watching the visual element, I have clear points where I enact a ‘thing someone tends to say’ and then explain why it’s not appropriate. I don’t say 1. 2. Etc that is in the visual element of the video at the bottom.