kancell24 Posted June 19, 2010 Share Posted June 19, 2010 What annoys you about how other people react/deal with your stroke. I am so tired of people telling me they understand how I'm feeling or what I'm going through. I'm also getting a little annoyed with people acting as if they could handle what I'm going through better or that I'm some how doing this wrong. Since none of the people around me have ever had a stroke I don't know if these are common reactions from people. So what bothers or annoys you. Link to comment Share on other sites More sharing options...
mcdube Posted June 19, 2010 Share Posted June 19, 2010 hi there, I agree, it is very annoying when you get unsolicited advice,suggestions and opinions from people who dont understand. One thing that really got my pressure up was shopping with someone who was pushing my wheelchair. The shopping was for me and we went into this shoe store and the clerk asked the person with me if he could help. She said yes she is the one wanting shoes. He never once looked at me or asked me what I needed. I was so angry, I told my sister in front of the clerk. Lets get out of here I dont want to buy anything here, and we left. People just dont know how to deal with special people. As for unsolicited advice, they think they know how they would do things . My brother was one of those people, to prove to me he knew how to do things and would even try to do (what advice he was giving me) it with one hand but of course he would cheat because both his hands were working and without realizing it, the hand that was supposed to not help would help. Not much we can do about these people except try to stay away from them to keep your sanity. mc Link to comment Share on other sites More sharing options...
moonrocket Posted June 21, 2010 Share Posted June 21, 2010 What drives me crazy are people who would minimize my issues because I'm young and look just fine. :growl: I have symptoms that are invisible, like fatigue, hip pain, etc. They go, "Oh, it can't be that bad." It drives me crazy. Doctors do this, too. This is one of the reasons why I'm changing neurologist. I'm hoping a fresh neurologist will help (just out of medical school). I hope I can get someone to listen to me and take me seriously. Link to comment Share on other sites More sharing options...
ksmith Posted June 22, 2010 Share Posted June 22, 2010 I'm thinking from another point of view it's their way of trying to understand, They might see you on the outside (i.e. limp or limb problems) and assume that once in their life they've had something similar. Ok like me for example I tell people I'm always dizzy and things are spinning. I ALWAYS here 'I've been there' Ok so being "drunk" is the closest thing I can use as an axample so people understand. Does that *beep* me off? Yes ! But I would never wish a person to have what I have to understand. It's a persons way to TRY to have sympathize. What should be said Is "I'm sorry you have to go through this" Happening to us, we view words to try and make us feel better as "how dare you say that! You have no idea" It gets better I promise you. To hear it is hard. Just smile.... P.S. I'd say under my breath I'm sure you do Link to comment Share on other sites More sharing options...
ksmith Posted June 22, 2010 Share Posted June 22, 2010 moon- I have the same problem Link to comment Share on other sites More sharing options...
Indigo Posted June 24, 2010 Share Posted June 24, 2010 I've been lucky with people's responses, although I have found people to be most deluded about the dizziness. And trying to explain the fear--panicking at things that might seem like nothing. For instance, leaning on certain counter heights make me panic and feel like I'm starting to fall. I've given up even trying to explain. Also, public restrooms trigger a bunch of my issues for some reason, and I've had panic attacks and been frozen by fear--trying to explain that--because I can't explain it logically--is pretty much pointless. I've learned to just summarize why things are difficult--way oversimplifying them. I think people do usually mean well--one main issue I have is with my mom--she never seems to think I'm working hard enough and she doesn't understand the fear. She is NOT a patient person and frequently comes off as not compassionate. I've come to realize that when she's upset for me she tends to lash out at me. Also, the doctors had diagnosed a dire future (locked in, paraplegia, death)and I've made massive recovery--she's so afraid that I'll give up. My parents were the ones that refused to accept the diagnosis, and are the only reason I even got in rehab--it seems like everyone else wanted to stick me in a nursing home and forget about me. So, really, her attitude saved me--it's just that it's sometimes hard to deal with now. Link to comment Share on other sites More sharing options...
merichsen Posted June 24, 2010 Share Posted June 24, 2010 It may help a bit if you keep it in perspective and take it from where it comes. We are often frightening to many people in that we are a reminder of their own fragility and how in an instant it too can happen to them. By simplifying it or comparatively believing they could easily cope and recover, they feel less threatened. What you will likely discover as you travel through your journey of recovery is that you have far more inner strength than you had ever realized or thought possible. Those around you will admire you for your strength and then wonder if they possess the same. Take it from where it comes and keep in mind being a survivor can be a great opportunity for personal discovery and growth. Maria :mwah: Link to comment Share on other sites More sharing options...
fking Posted June 24, 2010 Share Posted June 24, 2010 Kancell, To answer your questions, I must say for me, I hear and don't hear what they say. I can't change their feelings so it doesn't bother me at all. Most of the time they say what they think and what they may have experienced with a family member or neighbor. I've learned in six years to just be me and not judge them in what ever they say to me. So nothing bothers me. I can't change nothing based on what they say or tell me. I do what I do, how I do and when I do, no one really cares anyway! Over time you'll learn to not let words hurt you nor bother you no matter how many times you have heard it said! Link to comment Share on other sites More sharing options...
Manders Posted July 21, 2010 Share Posted July 21, 2010 I stroked when I was 18 and when I tell people that, their reaction is ALWAYS the same. "Oh you poor thing..." I hate that!! Its like they feel sorry for me. I always snap back with "I'm doing fine..." What annoys you about how other people react/deal with your stroke. I am so tired of people telling me they understand how I'm feeling or what I'm going through. I'm also getting a little annoyed with people acting as if they could handle what I'm going through better or that I'm some how doing this wrong. Since none of the people around me have ever had a stroke I don't know if these are common reactions from people. So what bothers or annoys you. Link to comment Share on other sites More sharing options...
Manders Posted July 21, 2010 Share Posted July 21, 2010 I had this alot too. Mostly right after my stroke. My bosses would roll their eyes when I asked to be moved to a different shift because I cant stand that long, etc. I just look for jobs that wont show my defects as much. I currently work as a toddler teacher where I get to sit down every 5 minutes with the kids on the floor. I dont look out of place because this is typical for the job. Also, it helps ALOT when you have a boss who understands and appreciates you instead of rolling thier eyes and thinking "oh its not that bad!!" What drives me crazy are people who would minimize my issues because I'm young and look just fine. :growl: I have symptoms that are invisible, like fatigue, hip pain, etc. They go, "Oh, it can't be that bad." It drives me crazy. Doctors do this, too. This is one of the reasons why I'm changing neurologist. I'm hoping a fresh neurologist will help (just out of medical school). I hope I can get someone to listen to me and take me seriously. Link to comment Share on other sites More sharing options...
Manders Posted July 21, 2010 Share Posted July 21, 2010 We just gotta stop caring what people think. I have irrational fears of hills and escalators and I suffer from anxiety. I just joke about it and try not to make it a huge deal. For example I may go into work and say, "I had trouble sleeping last night, my stupid anxiety kept me up and I kept hearing noises." People tend to just relate instead of judge. I've been lucky with people's responses, although I have found people to be most deluded about the dizziness. And trying to explain the fear--panicking at things that might seem like nothing. For instance, leaning on certain counter heights make me panic and feel like I'm starting to fall. I've given up even trying to explain. Also, public restrooms trigger a bunch of my issues for some reason, and I've had panic attacks and been frozen by fear--trying to explain that--because I can't explain it logically--is pretty much pointless. I've learned to just summarize why things are difficult--way oversimplifying them. I think people do usually mean well--one main issue I have is with my mom--she never seems to think I'm working hard enough and she doesn't understand the fear. She is NOT a patient person and frequently comes off as not compassionate. I've come to realize that when she's upset for me she tends to lash out at me. Also, the doctors had diagnosed a dire future (locked in, paraplegia, death)and I've made massive recovery--she's so afraid that I'll give up. My parents were the ones that refused to accept the diagnosis, and are the only reason I even got in rehab--it seems like everyone else wanted to stick me in a nursing home and forget about me. So, really, her attitude saved me--it's just that it's sometimes hard to deal with now. Link to comment Share on other sites More sharing options...
lharrison Posted July 21, 2010 Share Posted July 21, 2010 hi kancell, what bother me mostly is when peopls spend alot of time staring at me because my arm looks like it doesn"t work and they always seem to stare at me so i am always thinking take a picture tit"s last longer, of coarse i don"t say that but i would really like to Link to comment Share on other sites More sharing options...
Jerseygirl Posted July 21, 2010 Share Posted July 21, 2010 I so agree with getting annoyed with people telling me they understand how I feel, or what I'm going through. Or worse yet, telling me it sounds like it's just a panic attack. I wish I were that lucky! Yes, I'm one of the walking wounded, the invisible... outwardly, you can't see most of my side effects, but that doesn't mean they're not there. I do agree it's just the normies trying to find a way to make it 'fit'... to put it into terms they can understand. But, somehow, I always wind up feeling minimized by this. It's so frustrating. Link to comment Share on other sites More sharing options...
ksmith Posted July 21, 2010 Share Posted July 21, 2010 Jerserygirl. and I couldn't agree more. My mother -in-laws she ubderstand though she said shes never had vertigo or double vision.... so how could you????? I do understand that people are trying to better understand what we have to go through but sometimes it makes it seem worse to me Link to comment Share on other sites More sharing options...
kathygrace Posted July 21, 2010 Share Posted July 21, 2010 I'm a caregiver to my husband who stroked last year. Lately I find myself saying "let it go..." alot. My Mom often comments that my husband (who has aphasia) doesn't try to talk. She thinks he doesn't try hard enough, or most recently, "he must be embarassed." Same with walking... he doesn't try. Then there was hubby's ex who told me, "well Jon (hubby's son) could make him walk!" Moronic comments abound! Some comments are made in ignorance and to those I try to educate people about the effects of stroke, but others you just have to let go and think of that old prayer, "help me to change the things I can... accept what I can't and have the wisdom to know the difference." (roughly paraphrased!) But another thing that I try not to let annoy me is perfectly healthy people who complain about trivial things. I try to be compassionate because everyone has their own trials and it isn't fair to expect them to be thankful they're not as bad off as we are, but sometimes it's just too much. When I had a particularly rough week, my Mom complained that she had no time for herself. How can that be?!? She can get in the car and go. I can't... It's often hard to remember that we all have our own perspectives. Pre-stroke I never considered being thankful I could go into the kitchen and fix myself something to eat, but now that I live with someone who can't do that, my perspective has changed. So again, I let it go rather than turn into a bitter old woman! And then I come here and read about people who do know what it's like and somehow what annoys me seems less important. Link to comment Share on other sites More sharing options...
Le Hermite Posted July 21, 2010 Share Posted July 21, 2010 Hi Folks..... This sort of thing is *so* common....And I suspect the 9 times out of ten, the Normies have no idea they are being irritating or almost insulting..... As was pointed out, they are trying to relate, but they do not have a frame of reference to relate to...Now admittedly, you might run into nasty folks occasionally, but they seem to be the exception rather than the rule.... What I've found works (2.5 years of experience....<G>...!) is to ignore it....If the people are close to you, you have to educate them them with a "Look, this is the way it *is*" approach... You are still going to deal with disbelief....remember...no frame of reference... The way I've dealt with that, is mention that I belong to this online Stroke Support group and that particular affect is common.... And I'm not making that up...There are a cluster of problems in recovery that are common...One discovers this reading the SN Forums....<G>...! I also do this when I'm dealing with my Doc or Therapists....One little qualifier...I make them explain any medical jargon that they send my way, if I do not understand it.... Now the Med folks don't do this out of any attempt to keep things mystifying...It's what they *do*...They think in those terms...That's *their* frame of reference....And remember, they are most often Normies...So you have to educate them too, in regards to your situation...Even if they have experience with Stroke Survivors... Remember....Each Stroke and Recovery is different, but there are common elements.... Hope that helps, in dealing with a common situation...... Care... Link to comment Share on other sites More sharing options...
kwaltke Posted July 22, 2010 Share Posted July 22, 2010 What annoys me is they think well its been a few years Like get on with being Normal The doctors were amazed I even lived yet I am faced with impatience all the time In example Its difficult to be the family of someone who had a massive stroke I will agree with that but I cant be all better and take over just because that is what they need me to do Karen Link to comment Share on other sites More sharing options...
turner Posted August 8, 2010 Share Posted August 8, 2010 What is worse is that look of sympathy, like when they sigh when you walk by. I have had so many people say "just call me if you need me" and only a few friends to figure out what I need and just do it. Link to comment Share on other sites More sharing options...
PennGwyn Posted August 8, 2010 Share Posted August 8, 2010 What is worse is that look of sympathy, like when they sigh when you walk by. I have had so many people say "just call me if you need me" and only a few friends to figure out what I need and just do it. I'd really rather people talk to me than just go ahead and work in my space or handle me. I'd agree that "Can I help you with {whatever}?" is better than just "Can I help you?", either because they've seen a specific need or are only willing to do so much. My parents visited for the first week or two after my stroke, and took my wife and I out to a restaurant. My left side neglect was still pretty severe; I looked down and my spoon was moving around, and that upset me (emotional lability?). It turned out to be my mom trying to help me with dessert. I KNOW she meant well. But if she had just said something first, I wouldn't have found it so upsetting -- or be still regretting my reaction..... David Link to comment Share on other sites More sharing options...
Pwilson18 Posted August 9, 2010 Share Posted August 9, 2010 HI... I TRY NOT TO GET BOTHERED EITHER FROM STARES TO COMMENTS. BUT ONE DAY AT MY WORK, THIS GIRL WAS IN A TIZZY ABOUT A PHONE CALL AND SHE SAID.. IM HAVING A STROKE BECASE OF THAT PERSON ON THE PHONE. SHE WENT ON AND ON. IT TOOK ALL MY MIGHT JUST TO NOT SAY ANYTHING! PATTY Link to comment Share on other sites More sharing options...
lharrison Posted August 9, 2010 Share Posted August 9, 2010 what i hate is when they ask me if i am interested in buying something and i tell him or her no i am not because i am not working and i am on a fixed income so no but then he or she will say yea but, so i hate when they don"t seem to listen to me when i say no thank you , they just go right on making the pitch Link to comment Share on other sites More sharing options...
Julie Craig Posted August 9, 2010 Share Posted August 9, 2010 For me-- I thoroughly dislike when peeps tell me they have a relative or friend who fully recovered from THEIR stroke......thus They know ALL & telling ME thsat I will too...........................................well, I HAVE recovered...but I still walk w/ brace+cane and caNOT use my left arm..........Just cuz THEIR Uncle Fred is recovered doesn't mean I will too or that I am NOT working hard enough!!!!!!!!!!!!!! GRRRRRRRRRRRRRRRRRR! Makes me craaaaaaaaaaaaaaaaaazzzy. :ranting: :Tantrum: Link to comment Share on other sites More sharing options...
Gavin Posted August 11, 2010 Share Posted August 11, 2010 People giving ideas never bothered me. I guess it is all about how you perceive what they are saying. None of the reactions I have received has ever struck a nerve with me either. If anything, others get frustrated I can't do what they do, but that is due to my appearing to be mostly fine after years of rehabilitation work. Despite my frustration in that as well, perhaps it is an compliment to my accomplishments? Link to comment Share on other sites More sharing options...
Guest PIJ Posted August 12, 2010 Share Posted August 12, 2010 I can relate to all the previous comments on this topic and want to share one of my more momentous experiences. I work as a forensic computer examiner and several months back I was at a meeting with a client and several counsel. As we were discussing my testimony for a trial still several months out, one of the attorneys who was obviously unprepared for encountering my disability asked “are you sure you are going to still be alive then?” This was not said with malice or any intent to offend and could even be construed as poor taste in humor (or just poor people skills). Can you imagine my reaction? I assured her I had every intention of remaining alive. That trial was last week and I am still alive and able to laugh at this lack of sensitivity. Link to comment Share on other sites More sharing options...
Dani121909 Posted August 19, 2010 Share Posted August 19, 2010 I'm glad I'm not the only one who feels like this! I look the same on the outside (except for short hair due to surgeries) so everyone assumes that I'm the same old person! I know nobody who's gone through this yet one friend in particular is ALWAYS telling me that she's 'so happy I'm back to 100%!' I want to just punch her out!!!! It sometimes makes me think I'm crazy because I DON'T feel like 100% inside at least at all! Some days I just sit & cry (maybe it does sound crazy) because I'm still trying to process everything almost 8months later.... I don't work but I'm on disability, not sure if I want to work, or what kind of work I should do.. I just feel empty or lost inside (?) sometimes.. I brought it up with my dr. & he thinks its post traumatic stress. Anybody else going thru this? I feel like I almost don't have the right to be stressed since I'm alive.... ???? But it's somewhat comforting that others get just as annoyed at 'well meaning' but ignorant people!! Link to comment Share on other sites More sharing options...
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