The things that change you.

Today I am debating whether to post a link to the news articles that I have been interviewed for. I feel that it would add something to my blog, a realness and personality. Not only that but it would be a good way to educate more on what Moebius is and really how it affects us that have it. You could see what I mean about facial paralysis and see what that looks like. In those ways it would be a good addition. 

But then, I have this anxiety about posting information about myself on the internet and more specifically, pictures. I’m sure I talked about it in an earlier blog about how someone on my Facebook friends list in 2009 took pictures from my personal page and used them to make a defaming page about me on another social media site. That completely changed my life and how I use the internet. My Facebook is now very private and only a close few people that I trust have access to my pictures. I have been called paranoid because I asked a friend to take a picture that she took of me off of Twitter or Instagram. I don’t like having my picture taken by friends and having it posted on the internet because what happened in 2009 really scarred me. And maybe I am paranoid but I can’t shake that feeling of what if it happens again and what if this time someone posts personal information about me or something like that. For a long time I was so paranoid about people on cell phones when I was out. I always thought they were taking my picture to use in a bad way. Group of friends laughing? I assumed it was about me. So you see, these things that happen in our lives, no matter how small they may seem to others can really affect lives. The ’09 incident affected mine and still does today, obviously. 

So, advice would be great. What should I do? I feel like in my quest to raise awareness of Moebius Syndrome, these videos would be very educational. But I have personal reservations about posting them and I just do not know what I should do. 


One thought on “The things that change you.

  1. Tough call. I know pictures can REALLY increase the traffic on a blog. I also understand the reluctance to put them out there. When I was in grade 4, someone I thought was a friend used the school picture i gave her to make a poster with ‘Super Freak’ written on it and then stuck it to my locker. Bitch. Anyway, I get it. You have to do what you feel comfortable with. The internet is a crazy place where anything can happen, but for the most part, it’s all good stuff when you are trying to educate and raise awareness – people will have to be searching specifically for information and they aren’t likely to flame you along the way. My advice – do what you are comfortable with but keep in mind that those who are searching might need reassurances that people with Möbius DO interviews and DO talk about their experiences. My two cents.

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