tag:blogger.com,1999:blog-690850457652849477.post7128135774582519565..comments2024-03-19T09:10:47.280-07:00Comments on Reasonably Well: Well-Meaning But Clueless Julia Oleinikhttp://www.blogger.com/profile/04857783768340014545noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-690850457652849477.post-49426230625033566552013-07-22T07:09:59.117-07:002013-07-22T07:09:59.117-07:00I have learned that most people have no idea what ...I have learned that most people have no idea what it's like to live with a chronic illness, and 99.9% of people have no idea about Sjogrens.<br /><br />But I cut them some slack because 1) I had no idea what Sjogrens was either and 2) If I can't understand what all it does to me, how can they?<br /><br />So I use the phrase (because it literally registers with them) "Yes, it's like having Diabetes. When my insulin is cooperating, I'm having a good day. When my insulin is being stubborn, I'm down for the count. Today, I'm getting cooperation, who knows about tomorrow."Anonymoushttps://www.blogger.com/profile/08619657180526027483noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-76231692748045481512013-07-17T12:41:07.137-07:002013-07-17T12:41:07.137-07:00Thank you for your blog. So many great topics!
Be...Thank you for your blog. So many great topics!<br /> Being newly diagnosed I haven't run into a lot of comments....yet. I do walk with a cane and get stared at a lot, as I am 40 & look healthy otherwise.<br />But I have multiple life threatening food allergies and frequently get asked, " what in the world do you eat?" I answer "oh you know , meat, veggies, fruit.... the norm". Or if I'm feeling particularly fiesty I answer " I eat very well thank you". ;)Christina https://www.blogger.com/profile/14573410980007011505noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-65292489319924943762013-07-17T00:34:27.849-07:002013-07-17T00:34:27.849-07:00My primary care doctor came up with a line that I&...My primary care doctor came up with a line that I've invoked from time to time, "You're not in bad shape for the shape you're in!" It says that I'm doing all I can to live with my disease but some things are out of my control.<br /><br />BeckyJoAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-76342741252976436782013-07-16T17:12:20.556-07:002013-07-16T17:12:20.556-07:00Thank you, Julia, for this post! It has stimulated...Thank you, Julia, for this post! It has stimulated the discussion that I hoped it would, and I'm appreciating all the different responses. They gave me some food for thought on how I might interpret the sentiment behind people's comments, and respond to that sentiment rather than the emotions their words trigger for me.<br /><br />Its wonderful to be able to talk about these issues with people who really do get it! Thanks for this supportive and immensely useful resource, Julia.<br /><br /><br /><br />Anganahttps://www.blogger.com/profile/10655313284752770981noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-55970935022291391342013-07-16T13:01:05.854-07:002013-07-16T13:01:05.854-07:00Let's not take what happens on a light intervi...Let's not take what happens on a light interview show too seriously. Venus is there for several reasons - mostly, to promote her clothing line, which is a must for her, to continue her income stream when she can no longer play. I say, good for her. The hopefulness in the question is that: hopefulness. We can dash the person's hopes and tell the brutal truth, or we can have a ready response: better on some days than others, better for the moment, "reasonably well". "doing the best I can to deal with the challenges of blah blah blah (whatever is wrong)...there are many responses. Don't blame the questioner - they have no idea what SS is, the long term prognosis, or what Venus has been through since she has not been terribly specific about it.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-7467552263358891972013-07-16T11:13:03.112-07:002013-07-16T11:13:03.112-07:00I don't think there is any way to avoid afflic...I don't think there is any way to avoid afflicting the comfortable when they are clueless, and with the exception of people in our lives with mental illness, I have no problem doing so. Nicely, of course. <br /><br />"I know you mean well, and I always appreciate compliments, but this illness is for life. And it is an invisible illness,so you can't see how I feel. Today I am having a very good day. Unfortunately, I will pay for it tomorrow, though.<br /><br />So, what is new in your life?" SLCCOMnoreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-56522340269120502632013-07-16T10:58:45.715-07:002013-07-16T10:58:45.715-07:00Good answer, Kathy!
I'm sorry Anonymous. If y...Good answer, Kathy!<br /><br />I'm sorry Anonymous. If your mom has mental issues you're just stuck working with that and have to train yourself not to be bothered. My mother had issues too, and it was hard as a caregiver to do everything necessary and keep a positive attitude so as to provide the best atmosphere for everyone, even me.<br /><br />A lot of times my reply is to smile and distract 'how are you?'. It's tough when people really want to pursue it and force the issue. I for sure don't want to be 'that person' who is constantly harping on my litany of ills, boring everyone. At the same time I just feel lousy at times, and it's hard to muster energy to say something intelligent, caring, socially aware. Those of us who deal with chronic illnesses joke about lying a lot, in my circle. And then there's the person who always has to one-up everyone else. Lord save us from those people.. or becoming one of them. Frankly, there are more interesting things to talk about than my health. Many people I know don't know about my health limitations, and are surprised when I'm not along and my husband tells them what's going on that day.<br /><br />All I know is I wish I had the perfect answer all the time, but I generally settle for 'I have chronic immune issues. It doesn't go away and there is no real treatment, but thanks for caring enough to ask, I really appreciate it.' and then ask about something they care about. If they are obnoxious enough to push me or treat me like I'm a crybaby or that they doubt I've pursued all avenues, then I have no problem lowering the boom succinctly and fairly unemotionally. Especially when they're trying to sell me the newest MLM vitamin mix.Anonymoushttps://www.blogger.com/profile/04957666245194183729noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-47597051718472032362013-07-16T07:41:49.874-07:002013-07-16T07:41:49.874-07:00I've had Sjogren's Syndrome for 22 years, ...I've had Sjogren's Syndrome for 22 years, and I'm only 50, so I've had some time to come up with replies to those who mean well but say these sorts of comments. In fact I have written several articles on the subject! But one retort I've found that works for me lately that keeps the atmosphere positive, doesn't make the inquirer feel defensive and doesn't put ME on the defensive is to make a circling motion with my hand around my face and say, "All this is just smoke and mirrors." And if they need an explanation I say, "Sometimes, the worse I feel the more work it takes to look this good!"Kathy Carlton Willis Communicationshttps://www.blogger.com/profile/00358939002684590921noreply@blogger.comtag:blogger.com,1999:blog-690850457652849477.post-23814994376990439742013-07-16T06:28:03.008-07:002013-07-16T06:28:03.008-07:00I would love to have a great response, too. Deali...I would love to have a great response, too. Dealing with my mother is the worst. She is constantly telling me how much better I look (than shortly after my diagnosis). I don't get a break from my symptoms ever. Nothing has helped, and believe me, I have been to multiple specialists over the past 3.5 years, and I've tried everything they will let me try to get some sort of relief. So it really grates on my nerves to have her telling me how good I look when I feel crummy. Unfortunately, my mom has mental health issues, and she needs to believe that I'm doing well in order for her not to have a breakdown. So I usually just mumble something unintelligible, because I cannot bear to agree with her, but I don't want to hit her with the full truth, either. I wish there was a tactful way of telling her that I'm not better. Just because I'm trying not to be sad all of the time does not mean I'm getting well! I only wish it were so!Anonymousnoreply@blogger.com