CarrieJessica Posted August 28, 2012 Report Share Posted August 28, 2012 Kind of nervous for some reason. I did it with the 30 Things You Might Not Know About Me for Invisible Illness Week. I guess now I wait and see if anyone reads it and what the response is. Here is what I shared a link to: http://boonefamilyupdates.blogspot.com/2012/08/30-things-you-might-not-know-about-me.html Quote Link to comment Share on other sites More sharing options...
JenLR Posted August 28, 2012 Report Share Posted August 28, 2012 My family is always trying to get me to post things about my illness on Facebook, but I never feel comfortable enough to do it. Good for you for opening up and sharing your struggles with so many people. Hopefully your blog post will help people understand what you're going through a little better. And I loved what you said about goodreads! It's become my favorite website, since so much of my time is spent reading now. I'm Jennifer Whitten on there if you want a new "friend" to share book recs with! Quote Link to comment Share on other sites More sharing options...
Relax86 Posted August 28, 2012 Report Share Posted August 28, 2012 I feel like I make myself appear as a total nutcase when I discuss my symptoms. I rarely talk about it. The list of ever changing symptoms still just blows my mind. I think the general public is conditioned to see anxiety....and I'm not well enough to fight that battle yet. Good luck to all who can. I admire you. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 28, 2012 Report Share Posted August 28, 2012 I have been on FB for about 2 years now, and I have never mentioned my health on it. I am so afraid that once people view me as the "sick" person, they'll only look at me in that context. That may not be a real issue for most people, but with ME it is a huge issue. I don't do sick well in front of other people, never have. I always wanted to be alone and left alone in the past when I felt bad with the flu, etc. I know it's a ME thing, but I just can't come out of the "I'm sick" closet. Quote Link to comment Share on other sites More sharing options...
bebe127 Posted August 28, 2012 Report Share Posted August 28, 2012 My friends and family know about my illness, though I don't discuss it on FB unless it is through a closed POTS group that I am a part of. Even though friends and family know, they still really don't understand, but at least most of the people on the closed groups do and it's nice to know I'm not alone and can talk to someone about how I'm feeling. Quote Link to comment Share on other sites More sharing options...
CarrieJessica Posted August 28, 2012 Author Report Share Posted August 28, 2012 It's been good for me. I am an Army wife so I am not surrounded by friends and family, its new people every 2 years. It gets so hard meeting new people and getting to know each other and never knowing how or when to say what. For me I have syncope as well as convulsions so it's not really an option to just not tell. Sooner or later people around me will see.Now I feel like its out there and off of me a bit. Now I am not a status updates about health kind of gal. I prefer amusing and entertaining to heart rate and blood pressure updates Quote Link to comment Share on other sites More sharing options...
misstraci Posted August 28, 2012 Report Share Posted August 28, 2012 CarrieJessica, I think it's neat, in fact, I thought it was so neat, I copy and pasted your "quiz" and put it on my own facebook page since I don't have a blog to put it on. Only people close to me know what I've been though,so it was kinda putting it out there for me too. I had someone comment about how strong I was and they said they loved me, awwwww.So, I think you did good, but also, like Relax says, when you don't feel well, the idea of having to explain everything or fight the battle is not worth the effort. I have been hit with the "anxiety" card more than I can tell you. It's humorous to me now, I just think, another ignorant being to add to the list of ignorant beings list Quote Link to comment Share on other sites More sharing options...
CarrieJessica Posted August 28, 2012 Author Report Share Posted August 28, 2012 so glad you answered them too. It was therapeutic for me to really put it in words at one time. I plan to Blog more often about 'life like this' so if you'd like you can follow or join or whatever it says. I try and keep it funny sometimes too. Quote Link to comment Share on other sites More sharing options...
Chaos Posted August 29, 2012 Report Share Posted August 29, 2012 Just had a chance to read your link for the invisible illness week. Good for you for being able to write that! In reading your story, it has so many similarities to my own that not only did you get to tell people about dysautonomia, you also helped validate my own experience with it. Thanks for doing that. I appreciate you being courageous enough to put it out there like that. Like others have said, I don't have the energy to deal with the darts that get thrown, especially by people who hide behind the anonymity of social media/computers etc. so I am in awe of people who are willing to stand up and do it. Thank you for being one of them! Quote Link to comment Share on other sites More sharing options...
CarrieJessica Posted August 29, 2012 Author Report Share Posted August 29, 2012 I have been surprised at the number of casual friends who have responded so well, very supportive and curious. I even had a gal message me and say when we were neighbors (Army wives, we move a lot) she thought I didn't like her because I skipped on invites or left early and never seemed 'happy to be there' I was able to tell her I wanted to be there and be there more it was just so hard. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.