I hadn’t planned on adding anything this month since I am doing the Writers Challenge and posting a post a day. But I had an idea and I want to put this out there to get some help.
This goes out to anyone reading this that has IBD. If you don’t have IBD, you can ignore this post 🙂
Ok….now that the normal people are gone, we can talk about them. He he.
What I am needing from my IBD community are some photo’s. I am planning on making a video for World IBD Day and an idea hit. Since so many of us were upset over CCFA’s handling of our condition in their advertising, I want to do a video to show just what it is truly like to have IBD. So, I need pictures of you at your worst. Do you have a bad moon-faced? Do you have pictures of your hospital stay? Maybe you have a stoma you want to show off. I want to make a nice collage of them in a video.
I will also need some triumph pictures but the majority that I need are the downside pictures. If you have some you would like to send, please mail them to firstname.lastname@example.org. If you want yourself mentioned in the picture, please give me your name, twitter handle, website address, blog address, date of diagnoses and what condition you have.
Thank you everyone for your help. I now return you to our regular programming.
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.