Day 10 – #NHBPM Should people post about their (or loved ones) health on Facebook?


National Health Blog Post Month!

 

Facebook.  One of probably the most recognizable name in the 21st Century.  Whether you are on it for the games, meeting people, or finding answers.  It has been used to help start revolutions in countries around the world.  For some it is a place to post pictures of their pets and loved ones.  And then there are people who want nothing to do with it and never use it.  There are even some of us that get fed up with the changes and vow never to use it again…but most of us return.

For many of us with chronic illnesses, we use Facebook to connect with other people in our situation.  I myself belong to at least 10 different IBD related groups and pages.  I probably have more IBD online friends on Facebook than I do of my close friends and family.

Of course, when I am in the groups and pages I talk to other people and post about issues I have with my CD.  Sometimes I answer other people’s questions.  But one big topic that a lot of people in the real world ask…is should you be writing about your health on Facebook.  I am reminded of a time when a fellow IBDer, Alyssa from www.loveformutantguts.com, was in the hospital and her family didn’t want her to post pictures of herself because they supposedly weren’t flattering to her.  I remember doing a blog supporting her decision.

So why do I support her decision and where do I stand on the topic question?  Well, first let me say your body is your body and you have the right to do or say what you want to and about it.  If you are willing to share your health to other people and open yourself up to strangers..then that is your decision.  Everyone has the tools to leave the site if they don’t want to read about it.  Do I support Alyssa on posting the picture…most definetely.  If that is what she wants to do..then so be it.  Also, I think everyone with IBD should learn and see the bad side of the disease besides the good.  Nothing should be hidden.  I myself have learned to really open up and share a lot about my health online, not just on Facebook.  I am a little more cautious on Facebook because I do have friends and family that maybe doesn’t want to hear or see some things about my disease.  I try to censor my public posts so as not to offend anyone.  But if I am in a private room (which most IBD rooms are) then I feel I can open up as we all understand the issues.

But what about loved ones?  Well, are we talking about just mentioning our loved ones or are you an advocate for one.  If my wife is sick, I won’t go on rants about it.  I don’t talk about any of her problems because it isn’t my place.   If she has some horrible disease, it is up to her to say what she wants about it, not me.  Just like I wouldn’t want her to constantly talk about me without me knowing about it.  But…if your and advocate for someone…that is a whole other story.  I see so many people who are parents of little kids with IBD and they talk up a storm.  But should they?  If the kids are real young, shouldn’t they have some privacy rights?  I think this is a very big topic.  I am happy that there are parents out there looking to learn and share in the lives of their children and really learn about their disease.  I sometimes wish my parents had done that when I was young..hell, I wish I had learned more when I was young.  I was kind of lucky as there was no internet when I was growing up so my parents couldn’t tell the whole world about me.   But if there was would I have wanted them to go online and talk about me and my disease without me knowing it.  Probably not.  I would feel a little violated.  At the same time though, I know they would have meant well and were trying to find answers to help me.

Looking back at all of this..I realize I haven’t really answered the question.  I think that is because I am torn on the answer.  For myself..if I am comfortable with talking about my health and want to open up..then yes I should and people should just be happy with my decision.  As for posting about others..I think there is a big gray area and I don’t know.  Part of me says yes and part of me says no.  I guess it is how they post and where they post about their loved ones.  If they are in a private room where everyone is in the same boat and can really offer help and advice..I guess that is ok.  Should they do public posts for everyone to see…maybe not.

6 comments on “Day 10 – #NHBPM Should people post about their (or loved ones) health on Facebook?

  1. I personally think that this disease is so isolating, that we should be “allowed” to reach out without our family and friends being embarrassed. I think it’s actually insulting that friends and family would be embarrassed about our disease. They don’t have to suffer through the days and nights of pain and hospital stays and surgeries. I think we should share what we want to and loudly. If family can’t take it, they should shut up, thank God they don’t have what we do, and go to counseling to deal with their own embarrassment rather than putting it on us. Just my 2 cents. :)

    • I appreciate your comments and I will always allow them. I think depending on how bad our disease is we all will have different opinions. The worse it is, the more we want to talk and not care how people think. I know I was very conservative in what I said in the past and only recently have I started to open up.

  2. I like your discussion on the matter. I think it’s important to talk about. I have a member of my family who is embarrassed by my blog so I think I’m sensitive to it. I do care what she thinks and it hurts. It’s something I live with every day and it’s affected my entire life so I have to talk about it. Either that, or remain silent whenever someone asks me how I’m doing. I agree with you, though, when you said it’s a personal choice but one we must be aware of.

    • I think you have a great blog and never be scared to say what is on your mind. As you can see from my posts, I say what I want. On Facebook, I do watch what I say publicly only because not everyone on my friends list understands the disease. But with my Crohnie friends, I am wide open. When it comes to my family, I used to keep quiet for fear of offending them but as I have gotten older, I have changed that also. I say, keep up the great work you do and don’t let anyone change who YOU are.

  3. Well said. You and I share some opinions on this topic! Also, my entry on the dangers of hospital hairstyling is my all time most popular post. I am really glad to have friends to ask about whether to post things, because you guys have all thought about how public health can/should be.

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