I love being a member of this site. No one understands how "I" feel except someone who "knows" how I feel. My co-workers ask everytime they see me looking at this site for new discussions, new members, inspiring stories, pictures, ect.," Are you looking at that stuff again????" Like it is something terrible. It makes me feel better when I go on this site. Not worse. I guess they think "IT" will go away if I stay off of this site. Well "IT" won't. I go here to keep myself educated as well. And hoping that maybe I can easy someone's fears when they find out they have one and which treatments I have had and side effects that I have experienced. Everyone's case is different.
This site help me move on with my life a few years ago. I am thankful for people whom stay on this site so you may help others
Sorry that you experience such reactions form your co-workers. This site has been helpful for me as well. Seeing what others is experiencing, the advice that is giving and being able to try and help others has been a blessing. I can say from my past experience, part of their reaction is that they did not understand or comprehend the seriousness of an AVM, the effects and the risks that are involved. A lot of this was due to them not really knowing what an AVM is because to them, they had not even heard of it. I would ask those who made comments or had remarks if they know what an AVM is, how serious it is and the effects it can have on the body neurologically, physically and emotionally. This just doesn't effect us with AVMs but our families and friends on daily basis as well. I am thankful that this site is available and can turn to others here for the support, education, and advice.
You know, I heard the same sort of thing from someone who thought that my time on the site would keep me in a funk, be depressed and wallow in my situation. They said something like "maybe you shouldn't be around all that", like you are all contagious or something. ;)
I love this site as well, and it is awesome to stay educated as well as hopeful. Maybe, the initial belief is that AVM survivors are somehow different from everyone else (I don't believe this) and being a member of this site just perpetuates that difference is keeping others from joining. If that is the case, the "difference" needs clarification. (Just my opinion). Thank you for pointing out that it is nice to hear from others (almost 7000 members from all over the world) who have been there is some shape or form and that everyone is here for each other. I completely agree with you. :)
Just remember, 50% of the people have BELOW intelligence. You just seem to run into more of them.
Good luck to ya!
But no one thinks anything about having a cell phone attached to their fingers because they're texting, facebooking, tweeting or whatever. You are right about connecting with those who know how you feel. In fact when I'm done here I'm going to attend a live 12 step meeting for my other problem because they know where I'm coming from, only about a different issue. Add my church family and I have a great lifeline!
That should have been BELOW AVERAGE intelligence. Yikes, below average memory skills too! Apologies gang!