It's all about the challenges of talking to healthy people about your illness and the difficult decisions of who do you explain to and how do you explain such a complex - yet invisible - illness.
I would love to hear your thoughts on this topic - what do YOU say?
I read your article and have to say it's one of my biggest hurdles. I have been unable to work, drive, do grocery shopping alone (or anywhere for that matter!) or just be upright for any length of time since 2012. When I do go out, I fear running into someone I know but haven't seen for awhile. I use a cane so I can't just answer the usual "good, how are you" to the dreaded "How are you?" question. Some have asked if I've injured myself. I HAVE entertained the idea of Just saying "yes"!
ReplyDeleteAs most people with me/cfs, I hate saying "chronic fatigue syndrome" yet I feel like I'm making more of it by calling it the more complicated sounding Myalgia Encephalomyeltis. I do, however, prefer to use the latter as it opens up the opportunity to provide an explanation.
The whole thing causes me a lot of anxiety and I don't want to fear going out of my house so I thought I might post something on Facebook. People post things all the time about illnesses in their lives, their familie's lives or their friend's. I don't want sympathy and I wouldn't be doing it for any "likes" or comments. I just want to put it out there so that when I do run into someone, or have to see friends I haven't seen in awhile, they'll know that the very fact that they are seeing me out and about means I'm doing ok at the moment and then they don't have to ask. I likely won't do this as I don't want to put myself in a position of rejection or disbelief. I had enough of that just going to doctors!
I had to go to an event held by high school friends who I generally see once a year(I'm in Canada, they are in the US) as well as acquaintances I haven't seen for years, so I went prepared with my response to their inevitable questions. I basically just said "I was diagnosed with something with a really long name that possibly may cause inflammation in the central nervous system which affects my walking, among many other weird symptoms". If they ask, I will tell them the name otherwise I change the subject to something about them.
Anyway, I stumbled upon your blog and will plan to follow it in the future.
Hope you are well today :)
Thanks so much for your note and for sharing your own story here. It's all so complicated, making our way in the "normal" world, isn't it?
DeleteIf you did decide to post something on FB or want a brief statement when people ask, I usually say something like "I was diagnosed with an immune disorder. It has some similarities with MS. The best way to describe it is that it makes me feel like I have the flu, and I have to be very careful not to overdo." That, in a short way, tells them it is serious (usually "immune disorder" does the trick there and the comparison to MS helps, too...though my friend with MS can do a lot more than I can at this point!) and lets them know I am restricted. That's just my approach. I like the way you described it to your friends, too.
Glad you found my blog! Nice to "meet" you :)
Thank you for a wonderful blog and so much information on ME/CFS. I was diagnosed with CFS over 15 years ago by a wonderful doctor who has since retired. Through a combination of behavior modification (i.e. knowing not to get too stressed, meditation, relaxation) and vitamin regimen, I have pretty much been able to keep it under control...but still get "sick" a lot. Strep, bronchitis, and ear infections seem to hit me just by hearing someone say the words! I struggle with people thinking I'm "faking" it for years...and now I just say I have CFS, Google it.
ReplyDeleteThanks for sharing your story, Deb.
DeleteThere are many "real" treatments available for ME/CFS - beyond just supplements and pacing - that can greatly improve your quality of life. Given your frequent infections, you can probably benefit greatly from some of the treatments focused on normalizing the immune system (these are inexpensive and well worth trying).
Here's a full list of what has helped my son and I the most, including the immune system treatments:
http://livewithcfs.blogspot.com/2015/08/effective-treatments-for-mecfs.html
Hope something on this list helps you!
Thanks for taking the time to visit my blog and leave a comment!
Sue