[CZZ74]

Hi everyone, I recently had a shock. I thought I would share it so that everyone would remember our commitment here to each others privacy
About 6-9 months ago my niece insisted I signup for facebook, good intentions, trying to get me to connect more.
The first thing that happened is that facebook took hold of my old business address book and invited everyone to be my friend. I should have closed it then.
but that is not what this post is about . this post is about our group here. When my niece got me to sign up it looked like thmy life might be improving . I was looking forward to the pump etc. however what actually happened was a lot went wrong and I was very ill for the next several months.


The next time I went on face book an acquaintance from this site who had become a friend, we met once outside of the site and stayed in tough through the board and emails maybe a phone call per year. However not for abut a year.

Apparently seeing the Facebook page of mine she had posted a question about my pump. then when she didn't get a prompt response she posted again. then she got mad. she told virtually the world I had a pump, demanded to know what controlled substances I was on . asked if I was still taking morphine and then verbally spanked me for not responding.
Wow was I shocked at the invasion of my privacy.
I had told no one except my family about the pump.
I felt put at high risk as she virtually told the world I was taking controlled substances. Please keep in mind I have already had to move once because someone was staling me for my oral pain meds.
Please everyone remember what ever is shared and learned here stays here.

What may not seem private to some is very private to another.
Also you never know why that person has not responded personally I had had two emergency surgeries. you know what that means all I had gained was lost.
Thanks for listening, I hope this stops someone's else from accidently invading someone's privacy or hurting them.
CZ

[Hopeless]

I am new to forums of any kind and do not use "social media". I recently got an invitation to Linkdin supposedly from my sibling. I took the bait. The moment I signed up, it appeared that my address book had been taken and I immediately resigned. I guess I was a member of Linkdin for about 5 minutes. It is proably out there permenantly now. I am NOT savvy about such stuff.

I have made several postings on NeuroTalk with the expectation that it would not be linked to a disclosed identity. Much of which I have posted IS private and between me and the people on NeuroTalk. I would hope that any information I disclose here would NOT be linked to my personal identity.

How could we get help from members if we do not disclose personal health information? We do so with the expectation that our identity is kept confidential.

I am so sorry this breach happened to you. That would cause me so much stress that my health would worsen. Thank you for sharing your experience.

[Jomar]

Any site like FB , Google +, everyone needs to go thru each of the privacy settings first thing- and only allow close/family/friends to see your posts.

You can say no the address book /contacts part.

The generic settings allow for anyone to see everything.

Read the rules/info/help pages when you join a social media site like FB.

You can still go back and change your settings and unfriend anyone you don't want to be sharing info with.

[KathyUK]

Facebook is an amazing tool when you're savvy about it. It's easy to set up your privacy so only certain people can even find you never mind read your wall. It's not scary when you set it up right and there are some fantastic CRPS groups on there that are private. Yes you're using your real name but then I have an account for my cat, so they're not that strict about IDs lol.

[Chemar]

I would also like to add that the only way anyone would know any member's identity here is if the member gives someone else that information. We do not have that info here.

We do not disclose even your email address to anyone else, and we also recommend that everyone use an alias as a user name

But members do need to remember that these forums are not private, they can be read by anyone, and what is posted is indexed by search engines. So obviously you should post anonymously and not disclose any personally identifying info here...and yes, choose wisely before you add people as friends and contacts to social media or groups where you do use your real name etc.

[Hopeless]

Originally Posted by Chemar

I would also like to add that the only way anyone would know any member's identity here is if the member gives someone else that information. We do not have that info here.

We do not disclose even your email address to anyone else, and we also recommend that everyone use an alias as a user name

But members do need to remember that these forums are not private, they can be read by anyone, and what is posted is indexed by search engines. So obviously you should post anonymously and not disclose any personally identifying info here...and yes, choose wisely before you add people as friends and contacts to social media or groups where you do use your real name etc.

Dear Chemar,

Thank you for the info. Very helpful and informative. Especially to the internet illiterate like me.

[tos8]

ALWAYS keep everything on the highest private settings on your FB. You dont personally know the person, so do NOT add them as a friend. If it hurts there feelings that you cant be facebook buddies, oh well! If your personal family and friends know about your health, ask them to not talk about it publicly. Some people dont know that and dont understand why, so explain why. I have had 2 friends ask about my health and how im doing in a post on my fb wall, I quickly deleted it, and then I messaged them and told them that I would tell them privatly, for my privacy since not everybody knows about my stuff and I prefer to keep it that way and they understood then and its never happend again. Also NEVER talk about yout meds! Not even with friends! I have talked on here about them, but I obvisly use an alias, and none of my friends come on here or family. Your meds are between you and 1 other person you know you can aboustly trust, so that way incase you need to go to the hospital and your unable to speak, that person can. And if you dont want to tell anybody at all, then keep a list on you at all times or get a medic alert bracelet (i have one) and they will keep your meds listed and all other health issues in there computer system, so that way EMS or hospital can call them and get all health info. And again, Keep your meds LOCKED up, at all times! Again its for your safety and others. Some of us are on very potent meds and alot of them, and you dont want somebody to know you have them and steal them.

[cait24]

I have to learn more about how to use facebook. There are so many good support groups out there for my medical situation and I need to take advantage of them. Right now my account is completely locked down that no one can find me on facebook. I use an alias here but feel strange using an alias on facebook. Should I have 2 facebook account. 1 under my real name for family and friends, 1 under an alias for my MG.

I feel so isolated. I need these groups. But I am afraid of repercussions especially work related. ANy suggestions would be greatly appreciated.

kathiw