Forum

facebook (still about ms)

Hi I have never used facebook before , but reading lots of posts makes me think that I should as there are lots of support groups and information sites relating to ms and the different drugs. My issue is that I dont want everyone on facebook to see what im looking at or what groups I belong to. My ms isnt a secrect but I dont want people I havent spoken to in yrs or anybody knowing my business. My husband signed up to keep an eye on what my sons were up to and everyday I get emails detailing friends of friends lifes- people we hardly know and I dont want all my details over the internet.

Any advice appreciated zoe xx

Zoe Only join closed groups, then only fellow members can see , and all posts are only on their page. I belong to a few and it works, as you say my ms isn’t a secret but don’t want every tom,dick & Harry talking about it. Gray

Hello Zoe

I’m on facebook. Like Gray says, only join closed groups.

All my post is set up to be viewed by my friends only.

Good luck x

I am in the same boat - not dxed yet so certainly don’t want my health condition spread around - I have one relation that loves to spray family news all over the net in the most dramatic way possible so I deffo don’t want them to know anything. At the same time, I would quite like to join for the support groups etc - as a carer as well as possible mser, so any tips and wrinkles would be more than welcome.

Make sure you keep a check on your privacy settings. If you feel really precious about your privacy though, facebook may not be the place for you. If you do set up an account, just be careful what you post and share. If you feel happy sharing it, then there won’t be an issue :slight_smile: X

How about you just sign up with a fake name? Just so nobody recognises you.

Sign up with a fake name?

fake name fake name sign up with a fake name and no one will know your name

Brilliant site on Facebook called women with ms, you ask to join and it is a closed site, no one on your friends list will ever see what you have written. I have had such fantastic advice on it and have helped other people. Best thing I’ve found.

Like the fake name idea, thanks!

Thelma Thristlethwaite xx

hi zoe

i belong to a group called ladies with lesions.

it’s a closed group and i only have a peep in occasionally.

the best thing is that i have made a couple of good friends who i meet up with every couple of months.

carole x