Musings of a Marfan Mom

The Privacy Line

| 20 Comments

The Mama Kat prompt I chose today was based on an email from one of her readers. Basically, the woman has been blogging for a couple of weeks and already received an anonymous comment criticizing her for using her daughter’s name and pictures, although no other personal/traceable information is given. She wanted to know what other bloggers think about this, how we handle privacy.

This was an issue I struggled with when I moved from Blogger to WordPress and changed the title and focus of my blog. On one hand, I’m a public person. I’ll answer just about any question you ask of me. The entire point of my blog is to talk about Marfan and my experience as a mother with Marfan. Because of my work with the National Marfan Foundation, it’s not hard to find out a lot about me, even without me using my last name. But, I felt that using a false name would (and perhaps I’m wrong about this) take away some of my legitimacy, that my technical posts are more believable if you know they’re coming from a real person who volunteers rather than someone with a trite nickname who might not have any real experience with the syndrome.

On the other hand, how much is too much? I’m very open about having Marfan, but I have had it come back to bite me in a job interview, thanks to Google. Illegal? Totally. Much I could do about it? Not really. I decided to forgo using my last name, just to make it a little more difficult in case some future, differently-abled-phobic employer should Google me. I also decided to create a nickname for my son. This blog is my story, not his. At this point, he doesn’t have a say in what I write, what pictures I post. But my story isn’t complete without him. So, I give him a nickname in the hopes this will grant him some privacy down the road. I also consult with my husband about what I plan to write, and sometimes my extended family as well.

I’m probably not perfect in the balance that I try to strike, but I try and will continue to feel my way.

What guidelines do you use? How did you choose those?

20 Comments

Leave a Reply

Required fields are marked *.