Love For Mutant Guts « A Guy With Crohn's

Today is Thanksgiving in the United States. It is a time when the Pilgrims came together peacefully with the indians in the area and had a feast for the fall harvest. Over time, it has become a holiday where we look back at our lives and give thanks to the things we have.

So what am I thankful for this year? There is so much to give thanks to. I can give thanks to my doctor. With so many unsympathetic doctors out there that don’t care about their patients, mine took the time to listen to me, do reasearch on his own time and put his trust in my hands to let me try a different course of treatment for my Crohn’s. So far it is working so thank you Dr. Potack.

I want to give thanks to my wife. She has stuck by my side through the good days and the bad. Through flares and scopes. When I was sick and depressed she was there to tell me everything will be alright and to offer advice. She supports my choice to go gluten free which was a life saver. Thank you Heather.

I want to thank my dog. She is a stubborn dog that likes to bark at the slightest noise in the building hallways. But she is quick with her hello’s when I come home and is there to cuddle me when I am sad. She gives me unconditional love when I need it most and never asks for anything in return. She knows when I need to be cheered up and will try to play with me. I couldn’t ask for a more beautiful soul. Thank you Sable.

This year I embarked on a new journey and started talking publicly about my disease. Out of a bad flare came a new life. I have started this blog and have met a lot of great people. I have become more involved in helping others with IBD. But without the help of others, I would never had taken the first step. I have thanked many of these people before, both privately and publicly, but today is special so I will do it again…because without their support and help, I wouldn’t be doing what I do. Thank you (in no particular order):

Kelly – www.sickgirldiary.com

Sara – www.inflamed-and-untamed.com

Alyssa – www.loveformutantguts.wordpress.com

Stephen – http://sdempster.com/ (The Road Less Traveled)

Jackie – www.bloodpooptears.com

Amanda – www.stopthinkingstartwriting.blogspot.com

Adam – www.IhaveUC.com

Jason – www.crohnsdiseasesn.com

This is just some of the great inspiration I have had this year. There are so many more people to thank that I don’t have the space to thank them all. So my biggest thank is to the IBD community. You have all opened up your heart to me and gave me so much love and inspiration. No one will ever really understand what it meant to me.

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.