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Mental Monday: Social Media, Health and Privacy

03 Mar 14
Megan
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(c) Megan S, December 2013

(c) Megan S, December 2013

As we move into this Kickstarter campaign to raise funds for the Foggy Frog and the Pain Gang picture book I want to take a look at our social media habits.

Both in my online communities and my home life the issue of safety and privacy in sharing information online has been discussed over the last few weeks. As people become more and more reliant on technology for their communication and relationship building they are sharing more and more information about themselves online.

How do we know we’re not sharing too much?

I don’t have the answer to this question but it’s something I’ve been debating with myself and those around me. There are 2 key examples I’ve been thinking about a lot lately.

Firstly, my husband tracks his rides with an online service and I brought up the fact that it’s a bit concerning people can work out where he lives and works thanks to the information that goes up on the site that anyone can access. He acknowledged my concern and then pointed out that if anyone looked him up online (either on Google or in a telephone directory) they’d get both addresses anyway. With all the information that is available through Facebook, Twitter, LinkedIn, and other networking sites, it is now fairly easy to find out almost anything you want to know about anybody (as long as they’re online – which most people are). This scares me.

The second example is my blog and online presence. I want to be as open and honest with everyone as I can be, but how much information is too much? Especially when it comes to my health. Anyone could read what I’m writing here and elsewhere and, although I know the truth, people may misinterpret what is written or may abuse the information they have access to. For example, if I wrote about an outing I went on or an event I attended I would know that I was only able to attend that event with a lot of careful planning, scheduled rests both before, during and after, and usually with a massive payback afterwards. But someone else reading about the event may just see that I went out and had fun. They may question why, if I’m able to attend this event, am I not working, why can’t I attend another completely different event that they want me to attend, or why I claim to be unable to help out with certain activities. These kind of misunderstandings and miscommunications also scare me.

My questions for you are:

How can we protect ourselves from misunderstandings or misuse of information that is readily available about us online?

How much information do you share online about your health and activities?

 

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  1. Miss Diagnoses March 3, 2014 at 9:41 am

    I worry about this all the time. My blog and Twitter are anonymous, but I still worry! My Facebook isn’t anonymous because I only have a personal account, not a blog account, and I have the same concerns as you regarding posting about an outing or other thing. It’s worse when you are on disability because you wonder who is reading things. Particularly I worry because I have hand injuries…I worry that people will get the wrong idea because I’m blogging, so I keep reminding people that I use voice-recognition software. In regards to my fibro, I agree that people don’t realize that we need to plan to do anything and rest afterwards, so if they see us having fun they may become skeptical about whether or not we are really ill.

    • Megan S March 3, 2014 at 9:56 am

      It such a difficult thing to balance… being able to share our fun times and our experiences with those around us and ensuring people don’t get the wrong idea and think we’re just faking it all. I honestly don’t have the answer of how to deal with it.

      • Miss Diagnoses March 3, 2014 at 12:07 pm

        It sounds like attitudes in Australia about chronic illness are just as bad as here in the U.S. … So many people don’t understand the idea of good pain days and bad pain days.

        • Megan S March 3, 2014 at 12:12 pm

          I think it’s the same everywhere unfortunately!

  2. Trisha March 3, 2014 at 12:32 pm

    This is something I worry about too. I tend to not really share anything on Facebook anymore and that’s the only social media outlet that I have friends/followers that I know in person. I’ve been thinking that this is really messed up, that I should be more open with friends, family and neighbors. I think part of it is that I don’t want to be viewed as a complainer, nor do I want people with expectations of me to think that I’m just fine if I post about anything fun I do. So avoid the whole thing altogether, which does nothing for the cause of awareness. *sigh*

    • Megan S March 3, 2014 at 12:36 pm

      That’s where I’m struggling, the difference between raising awareness and being viewed as a complainer…

  3. Miss Diagnoses March 3, 2014 at 3:01 pm

    I never share about my illnesses on FB either, except for posting an article once in a while. I think healthy people will be sympathetic for a few shares, and then they just don’t respond. I watched this happen to a childhood friend who was in a car accident. The first few times she talked about her pain, she had a long thread of sympathetic comments. The next few times, she still got comments, but fewer. Now she gets one or two comments or nothing.
    I have a friend with severe, aggressive MS, and she only posts music videos and pictures. It’s true, it is so hard to negotiate that line between raising awareness and complaining. But I also think there’s something about Facebook, some kind of unspoken etiquette about not posting too negatively. (Unless it’s funny posts.)

    • Megan S March 3, 2014 at 3:44 pm

      I try and avoid posting too much on Facebook and only do negative posts every now and then. If I do post on Facebook it’s usually links to articles or comments about events about to happen.

  4. Jenn M March 4, 2014 at 6:23 am

    I can definitely understand where you’re coming from. That’s part of the reason why I discontinued my previous blog. For instance, with the videos, yeah…it seemed like I was well and stuff because I was smiling, but then yet again, that’s my temperament. I’m just an enthusiastic person–what can I say? 😉 However, I usually crashed afterwards from overdoing it and needed to rest for a couple of hours. (this is the stuff that goes on behind the camera)

    I’m trying to talk a little less about fibro and CFS on my new blog. I’ve had a couple of people doubt that I even have fibro (which offended me…why would I be faking this?). That’s why at this point, I just blog about my interests and the items I’m selling on my Etsy shop. With my health and personal matters, I save it for FB (with my closer friends–in person as well as the friends I have made through WordPress).

    • Megan S March 4, 2014 at 6:55 am

      Thanks for sharing Jenn, it can be difficult can’t it?

      • Jenn M March 4, 2014 at 8:17 am

        Definitely! 😉

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