Multiple Myeloma Support Group

I don't like the idea of it either. Luckily, my username is so common that there are tons of hits on Google. I think it's just the world we live in now. There is no more privacy, expecially online. You would think that since this is such a personal site that they would have some safeguards, though. I think I'll remove some of my info, too. I don't need everyone knowing my personal business.

Hi Cherri, it's what I ended up doing...I get that anyone within the site can view our stuff...I just don't like the fact that punching in your username...which for some of us is a repeated username in other areas of our 'internet' life can pull up blow by blow interaction with others.

I've decided that I don't like it either. I'm actually leaving this site - I put in a request yesterday. I wish everyone the best. Thanks for your support. :)

Cherri...please consider changing your username before leaving the site. I have put in a request for that and am awaiting a reply.

I've removed my personal information and photos, I send 'messages' only and not 'hugs' as we all know they are visible.

What I found interesting when I checked the other day was each response I wrote back to people way back on this site showed up! People that have since left the site, interactions I had with them, more than likely 'hugs'...but they are still there.
The areas I see as a problem are 'discussions' etc...'hugs'...journals if not locked or restricted and any responses to others who don't lock their journals.

I personally get that anyone who really wants to find out anything you've written can source it with some investigation...it completely threw me though to find a direct entry from google into my profile here...that I don't like! As most others on here, I joined for support and advice and most importantly I want this part of my life private.
I know on my personal email I have the option of having my profile public or not...there I chose not to display...I didn't think that this was something to address here.

I found out about this quite some time ago. I deleted all my personal pictures too and I think I am going to edit my info as well.

you can change the setting of your jounals to "friends only". that way not everyone gets to read them.

I did all of that, removed information, 'friends only'...all that stuff...I removed all my personal information on my PROFILE...and that is still showing on google despite being deleted.

I personally don't foresee a problem with my information 'out there', it's just uncomfortable to me, it feels like an invasion of privacy...may sound weird considering the times we live in and the communication we use...I'm just not loving it!