tag:blogger.com,1999:blog-22576999.post116283123379536645..comments2024-03-27T14:05:22.815-04:00Comments on Live With ME/CFS: Living in a World ApartSue Jacksonhttp://www.blogger.com/profile/14532098225905355332noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-22576999.post-41515108754808568862012-03-25T17:37:21.099-04:002012-03-25T17:37:21.099-04:00Just Me - Thanks for taking the time to comment. ...Just Me - Thanks for taking the time to comment. I think you misunderstood what I wrote in this post, though. I actually agree with you completely - I am always open and honest about my illness, for all the reasons you cite here. I agree wholeheartedly!<br /><br />In the situation I was describing here, most of the people DID know about our illnesses because I have talked to them many times before about it. But, even in a group that knows you have CFS, you can still feel isolated and different in their midst. Unless you live with CFS, it is really impossible to understand how it impacts every single moment of every single day. When at a social occasion, with other people talking about sports, exercise, and other things that require far too much exertion for someone with CFS, you can feel left out even though you are among friends.<br /><br />I am rarely silent (!) and am open with my friends, but I still feel alienated at times. I think we all do when out among "normal" people.<br /><br />Thanks so much for starting such an interesting discussion!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-51269550452862503912012-03-24T23:17:27.531-04:002012-03-24T23:17:27.531-04:00What a great post. I can really relate. Only I tak...What a great post. I can really relate. Only I take the opposite approach. I do explain, though briefly. At yes I do think it can and often does alienate people. <br /><br />I guess for me the lesser of two evils is being honest about my situation and not censoring myself even if means people becoming uncomfortable. I am alienated from most healthy people anyway simply through my experience of being sick. I'd rather be open about that than to be silent about my reality. And alienation is the end result either way, so I'd rather be true to my situation and alienated than silent and alienated. <br /><br />I see no reason as a sick person to go along and act as if I share the same daily reality as those who are well. I don't want to, through implicit agreement by being silent, act as if the reality some others may impose on me through their assumptions is the actual one I live. <br /><br />You're right that most people can't really understand but I'm not comfortable just being silent about things either if someone is making false assumptions about my situation. I don't get into a long explanation, but I simply correct people if they make an assumption that's inaccurate or let the person know that the given situation is one that doesn't apply to me.JustMenoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-1165140372183126772006-12-03T05:06:00.000-05:002006-12-03T05:06:00.000-05:00Dear Sue, i am very impressed how good you are abl...Dear Sue, <BR/>i am very impressed how good you are able to express what we all feel. <BR/>i am a mother with cfids and have a ten year old son with cfids.<BR/>you expressed so well what i feel daily and how hard this illness hits you, in ways others can never understand, untill you are ging through the same illness. i live at the other end of the world and it would be kind of nice if the boys could exchange some e-mails if you are intrested. <BR/>i am usually on a other message board called:www.immunesupport.com under the name karinaxx,or is their a way to exchange e-mail adr.here?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-1163797822587191722006-11-17T16:10:00.000-05:002006-11-17T16:10:00.000-05:00Thank you Sue,for expressing your feelings about w...Thank you Sue,<BR/><BR/>for expressing your feelings about wanting to be more social than you fear you appear to be, or physically feel you can be due to CFIDS. Yep, those of us with CFIDS are invisible! Yet we feel the differences inside ourselves, and can still remember who we once were. I was just trying to explain that difference to my very kind understanding (non-CFIDS) husband this week. He's so empathetic, but it's possible only those of us in an easily fatigued body know how it feels to want to do and be so much more in the world.<BR/><BR/>I'm new to searching for these CFS blogs. I know you said you feel you're between and in a divided world of those who understand CFS and those who don't, more easily understood by those who write about CFS. I'm just an anonymous voice.<BR/>But I want you to know that your expression and experience you're sharing with us is valuable.<BR/><BR/>Thank you for sharing it.<BR/>JeanieAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-1162994835801656582006-11-08T09:07:00.000-05:002006-11-08T09:07:00.000-05:00Yes, Peter, I can see how the wheelchair might act...Yes, Peter, I can see how the wheelchair might actually help in social situations. I said something like that to my husband Saturday night: that it's the invisibility of my illness that makes social gatherings especially difficult. It's different when you appear perfectly healthy. Then, telling people how difficult your life is just makes you seem like a whiner.<BR/><BR/>That said, I am very sorry to hear that your symptoms are bad enough to require a wheelchair. I know I am fortunate to be able to get around as well as I do and even to appear healthy.<BR/><BR/>SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-1162989498075637872006-11-08T07:38:00.000-05:002006-11-08T07:38:00.000-05:00i too understand exactly your feelings especially ...i too understand exactly your feelings especially at social events like our sons golf presentation evenings. but i take the opposite approach and tell people how i feel and why. this is easier because i use a wheel chair which flags up the fact that there is something wrong with me.people then take me as they find me.<BR/><BR/><BR/>peter <BR/><BR/>tenerife <BR/><BR/>my first ever blogAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-1162911413724204592006-11-07T09:56:00.000-05:002006-11-07T09:56:00.000-05:00Yes! Sue, you express this so well! One of the t...Yes! Sue, you express this so well! One of the things I said in an interview last week was that having CFS is like being under house arrest, but nobody knows. I have experienced everything you describe in this post. The disconnect between how we appear/ the social world and what our lives are actually like is one of the most difficult things for me. Even people who know me well do not truly understand how hard it is. Thanks for putting this so much better than I could!Knittahhttps://www.blogger.com/profile/15945035053199605558noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-1162858051573226072006-11-06T19:07:00.000-05:002006-11-06T19:07:00.000-05:00Sue,I couldn't have said it better. I completely ...Sue,<BR/><BR/>I couldn't have said it better. I completely understand how you feel, the isolation and the wish to be honest but fearing that you will drive others away. I think it's a common emotional reaction and difficult to know how to handle. I have encountered this many times, even from relations. <BR/>I'm able to share with my husband, a few family members and some very dear friends. I am grateful for those who do care and try to understand. I just wish there was a way to let others know how difficult it is to get through every day.Mary Annehttps://www.blogger.com/profile/15941689051872189415noreply@blogger.com