Different Styles of Advocating (separate from #NHBPM)
There are a lot of things on my mind that led me to want to write a post on the different styles of blogging and ways people go about advocating for their disease. Since I honestly haven’t read very many blogs people have written about diseases other than ulcerative colitis and crohns disease, I am going only going to focus on that in this post. I have come across a wide range of blogs about IBD; Some I love, some I find absurd, and some I could take or leave. When I look back at what I needed most when I was searching for support, I realize that I needed to know I wasn’t alone. I didn’t need any tough love because I was already very hard on myself as it was. I never responded well to someone telling me what to do since there was always a reason why I was unable to do what someone asked of me. The blogs I found most helpful were those that I could relate to. That seems fairly obvious but I have recently come to the realization that we all look for different things from the blogs we read, videos we watch and doctors we click with.
As I have become more engrossed in the blogging community and have connected with other IBD advocates, I have realized that everyone has a different style of advocating. It has only been recently that I have tried not to get pissed off when I come across a fellow IBDers blog who I don’t necessarily agree with. For me, I have always needed my (sometimes) negative emotions related to IBD validated before I could begin to feel positive, less alone and more confident. This also eventually allows me to be and feel more productive. However, I have come to the realization fairly recently that there are some people who don’t need that. There are some people who don’t need to discuss negative emotions. Perhaps it is too hard to dig down deep. Only the one writing can really know the deep seeded reasons behind what they share and why they do so.
The layout and topics of my blogs are my own personal choice. I am not very technologically savvy so I like the template that is the easiest to use and also the easiest to read. I don’t care very much about how my blog looks, although I would like it to be a bit more engaging at first glance but that may be something to alter down the road. The topics of each post are emotions and/or situations that I have either experienced or continue to go through. I do try to make each post as relatable as possible to someone who does not have any type of IBD because I do believe that many people can relate to the thousands of emotions that I deal with. It is also my way of trying to get a variety of readers, not just specifically IBD patients. By bringing back my main topic to a focus that is more general, I have found that more people can relate to me. I also want to appeal to caregivers as well because I think the more they understand, the easier it is for the person suffering.
I have put a lot of thought into this topic because it has honestly been something on my mind for a while. I have seen so many blogs written by IBD patients that completely minimize what UC and Crohns disease really are. I have seen so many blogs and videos that I would just brush past if I was sitting in the hospital looking for support. The fact that people brag about their athletic accomplishments really used to bug me. I am trying my best not to filter here. My first reaction to those blogs where people claim they were just discharged from the hospital in time to make track practice was anger. I thought “how sick can this person possibly be?” and “wow, there must be something wrong with me if I can’t do X, Y, Z.” However, after mulling this topic over for quite I while I have come to the conclusion that everyone is just trying to cope. We are all doing the best we can. We are all writing the things that make us happy. We share the things that make us feel better about ourselves. Some people might minimize IBD because they didn’t have a severe case and you know what? Good for them! People with IBD who can participate in these amazing athletic competitions should show it off. So, while I have tried to look at each blog I come across with this new mentality, I realize how much better off I am not letting each thing affect me so much. I would seriously get so upset at some of the things I have seen or heard but at the end of the day, I am going to continue advocating the way I think is best, and so are other people. I know what I always needed when I didn’t have my own voice and I intend on giving that to people who need it now and in the future.
It is important to understand that we are all just doing what we can to get by. We are all doing what we as individuals need to feel better about ourselves and our lives. There is no right or wrong way to advocate for a disease. Let us all try and be a little more tolerant of each other and each other’s words. Remember, we are all just trying to cope…