A lot of us with fibromyalgia and chronic fatigue syndrome turn to the Internet for not just information, but for support and friendship. However, when you're discussing your health online, it pays to think about protecting your privacy.
The main thing to remember is this: EVERYTHING you say in public online forum, whether it's a blog comment or on a Facebook page, is indexed by search engines. That means when you (or anyone else) Googles your name, it'll all come up.
Over the past few years, I've gotten several requests to remove comments - usually by people who didn't realize that anyone at all could see them. That includes your soon-to-be-ex spouse, your boss or prospective employer, and anyone else who could have a reason to do a search for you. These days, you have to assume that people and companies will make those searches and use what you've said against you.
Here on this page, it's easy to get around that - just don't use your full name. A first name, initials, or an alias will keep your comments from being connected to you.
On a Facebook page, it's a little harder. Any comment you make there is automatically linked to your account and therefore your name. If you're concerned about privacy and still want to participate, you might want to consider creating a separate account for that under a different name. (This is only for pages that you officially "like" and comment on, not for personal accounts.)
Have you learned this lesson the hard way? What happened? How do you protect yourself now? Leave your (anonymous) comments below!
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That’s why it’s safer to join a forum like http://www.fibrotalk.com instead of a Facebook fibro group.
You post with a username, NEVER your real name.
I agree with the person above. If you belong to an online group make sure that the owner of the group has locked it. If you are not sure then always make sure to use your username.
When I ran a support group online I made sure that the group was locked to protect my members and myself. I did not want anything we wrote to each other to be traceable to my members or myself. I have ran the same group starting with MSN and then moved it to Yuku.
Do to hurricane Irene flooding my home and how it affected me I had to close my group.
Thank you for having this article to protect other people with FMS and or CFS.
DF
I must say you have given me a lot to think about. I don’t often use my given name on comments but I have here and there. And worst of all I have commented however briefly on FM pages on Facebook. Truthfully, I have no regrets over what I have written but I do suppose it would smart not to do so again in the future. I can’t help but think however, that if people were using their real names they might be more prudent in what they do write. Not on a health site or forums necessarily, as there is a need for confidentiality relating to our health issues, but on all the pages people seem so compelled to offer their opinions, which are very often cruel, thoughtless and incite-ful rather than insightful. It just seems that people would be more careful about what they say if they were saying it under their real names.