tag:blogger.com,1999:blog-2732202318489795253.post7113452262320268577..comments2022-12-13T05:09:56.088-08:00Comments on Tamara Epps: M.E. is...Unknownnoreply@blogger.comBlogger5125tag:blogger.com,1999:blog-2732202318489795253.post-578244746820012732011-04-01T08:44:57.870-07:002011-04-01T08:44:57.870-07:00Thank you for you kind and thoughtful comment Bru....Thank you for you kind and thoughtful comment Bru. You seem to have the same thinking as I do - I never claim to understand someone else's life, though I am happy for them to try and explain it to me if they want.Anonymoushttps://www.blogger.com/profile/15092117102877690831noreply@blogger.comtag:blogger.com,1999:blog-2732202318489795253.post-61237802642556685312011-03-31T21:53:29.601-07:002011-03-31T21:53:29.601-07:00People say things and have no idea how they sound....People say things and have no idea how they sound.<br /><br />How much better it'd be if they just said "I'm sorry for your pain." and then maybe offered to do something- the smallest thing- to really help instead of trying to cheer you up with platitudes that don't help in the least.<br /><br />(You wouldn't believe how many people have said to me, "Oh, I'm practically blind without my glasses too!" They have no idea what they're saying to me. That is nothing like living my life.)<br /><br />I'd never claim to understand another's experience even if I had the same illness. Every human's experience is unique.<br /><br />All I can say is, I'm so sorry for your pain, and I hope you can surround yourself with as many helpful people as possible to help you carry the burden.<br /><br />~bruFebruary Gracehttps://www.blogger.com/profile/01078037856070486022noreply@blogger.comtag:blogger.com,1999:blog-2732202318489795253.post-59009183347175136312011-03-31T08:57:18.804-07:002011-03-31T08:57:18.804-07:00Thank you both for your comments. I honestly beli...Thank you both for your comments. I honestly believe that when people try and relate to us in this way that they believe they are doing the right thing. I hope this post helps explain that a comment like that can be very harmful - you are right Debs, people just don't think before they speak in some situations. <br /><br />And Dominique, I completely agree that the title of 'Chronic Fatigue' is very inacurate, hence I tend to use 'M.E.' (and people usually show more understanding with this answer anyway). I also believe that the main problem we have is that both names are used to cover so many different aspects of disability that it would be better for there to be many names rather than one sweeping one that covers everything.Anonymoushttps://www.blogger.com/profile/15092117102877690831noreply@blogger.comtag:blogger.com,1999:blog-2732202318489795253.post-43560213125095867272011-03-30T14:08:46.147-07:002011-03-30T14:08:46.147-07:00Great job on this post.
I think people aren't...Great job on this post.<br /><br />I think people aren't just ignorant but I truly believe they have no frame of reference.<br /><br />How do we truly help someone understand that our energy levels are so bad that we are experiencing a deficit that prohibits us from doing the simplest of tasks.<br /><br />And yet, several days later, we seem to be more able.<br /><br />I think the day we no longer have to have this illness referred to as Chronic Fatigue anything will be the day that we can move forward with understanding.<br /><br />I hope you are doing better today, my friend. <br /><br />Thanks for sharing.dominiquehttp://www.4wallsandaview.comnoreply@blogger.comtag:blogger.com,1999:blog-2732202318489795253.post-25432094487025208832011-03-30T08:47:01.034-07:002011-03-30T08:47:01.034-07:00"I know what you mean, I have those days too...."I know what you mean, I have those days too." People say stunningly ignorant things in their attempts to relate.<br /><br />Since a friend relayed a tale about how folks are always asking another of her friends, "When are you gonna have kids?" I've tried to be really mindful about what I say. In that case, folks ask a seemingly innocuous question, not realizing that very personal question will actually leave its recipient crying for an hour. She very much wants to have kids, but is very much physically unable.<br /><br />After my mom died, people kept saying, "At least she's somewhere better!" Dumbasses, the point is, she's not WITH ME. I know she's no longer suffering, and I know that's good. But I also know I want very much to call her and have her call me "gorgeous" one more time, y'know?<br /><br />I try to make it a point now to say, "I'm so sorry for your loss."<br /><br />I see so many examples of this day after day. It's good for people to try and understand, but simply saying the words doesn't make it so, and in a way belittles the suffering someone who has to deal with it every day endures.Debhttps://www.blogger.com/profile/06036505968642985025noreply@blogger.com