tag:blogger.com,1999:blog-25073771.post2756853052130604351..comments2023-11-05T04:05:03.588-08:00Comments on A Chronic Dose | A blog about chronic illness, healthcare, and writing.: Language and the Patient Experience: The Follow UpLauriehttp://www.blogger.com/profile/10392908564921877962noreply@blogger.comBlogger3125tag:blogger.com,1999:blog-25073771.post-37954936856006275712008-10-09T14:11:00.000-07:002008-10-09T14:11:00.000-07:00Hi Laurie, I am enjoying your exploration of sema...Hi Laurie, I am enjoying your exploration of semantics in our chronic illness experience. Semantics is such a powerful part of it.<BR/><BR/>One of my illnesses is Gastroparesis. I had a test done, it came out positive, and that's that. As I live with the symptoms I know why I have them--it helps. It is easy to explain, and as a blogger, easy for me to write about.<BR/><BR/>I also have CFS. What a different story. The name is terrible and inaccurate, explaining it would take hours, and writing about it, I find much more difficult than the cut and dry diagnosis of Gastroparesis.<BR/><BR/>People are comfortable with what they understand. Naming something helps us put a border around it. Having a border around information helps us sort it out and understand it. The complexity and lack of understanding of CFS prevents it from fitting in any container.<BR/><BR/>To doctors and others trying to understand, it must seem like walking into a terribly cluttered house. Overwhelmed most want to walk right back out the door.<BR/><BR/>What joy there will be for us with CFS when it's name is semantically correct! I have no doubt it will change how we are treated and perceived by others. But, as you said Laurie, it will NOT change the symptoms or their impact on our lives.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-25073771.post-47640194656053425582008-10-09T09:25:00.000-07:002008-10-09T09:25:00.000-07:00Something I've noticed with my son is that there i...Something I've noticed with my son is that there is a big difference in before and after docs -- the ones who have known him always, even before we learned of his condition/"labeled" his troubles (McCune-Albright) treat him still like he is just him and no big deal while new docs who only know him as a kid with MAS approach him as much more complex -- it balances out, I guess -- sometimes I think that the old timers should be more concerned and the new ones should relax. I do see that people aren't satisfied at times until you name the troubles, even other little kids want a hook to hang the wheels on -- my son will say, "What's the thing I have called again Mom?" And then tell the nosy kid asking about his wheels, oh so casually, "I have MAS."catherine (fairchild) calhounhttps://www.blogger.com/profile/08956302792185482511noreply@blogger.comtag:blogger.com,1999:blog-25073771.post-4192857029026011002008-10-09T07:00:00.000-07:002008-10-09T07:00:00.000-07:00Laurie,Wow! What an awesome post. I was one of t...Laurie,<BR/><BR/>Wow! What an awesome post. I was one of the outraged patients who wrote to the New York Times about the article that proposed the theory that, basically, there is no such thing as fibromyalgia!<BR/><BR/>My fibromyalgia is no less real than the cancer I had removed a few years back. Just because doctors don't have a blood test or x-ray or a biopsy that can "see it" doesn't make it less real. The NYT article was especially troubling to me.<BR/><BR/>Fibromyalgia patients suffer greatly and this article was a <I>HUGE</I> disservice to fibro patients!<BR/><BR/>Chronically ill patients deal with pain, exhaustion, frustration, and reduced quality of life. I think there are times, though, when the most hurtful thing of all is not being believed!! <BR/><BR/>When people question the validity of a diagnosis, imply that someone who is ill is really just "lazy", or stigmatize people for being disabled... it can be almost unbearable for a patient.<BR/><BR/>Thank you for another great post. Words do matter!!<BR/><BR/>JeanneJeannehttps://www.blogger.com/profile/11454649048120118507noreply@blogger.com