We look down on those uneducated patients for not understanding their disease; Especially veteran patients who are trying to create accurate awareness for a disease that has plagued them for years. In addition, getting rid of some of the myths that are out there about Crohn’s Disease and Ulcerative Colitis is incredibly important. If the general public understood the severity of inflammatory bowel disease, it would make social situations a lot easier. Not to mention work and school environments. It would even improve a lot of people’s home lives since as we all know, even though family usually have the best intentions, if they don’t understand or believe some myth that is out there, life can get even more stressful (and frustrating!)
Anyway, this whole concept of advocacy got me thinking: what are some of the possible reasons many patients aren’t educated about their disease? There are, of course, many reasons for this but I believe one of them is about acceptance. Researching and truly understanding the disease you will have for the rest of your life takes a lot of mental strength. Sometimes, at least initially, denial is easier.
I hate it when people speak incorrectly about IBD and honestly cut them no slack if they are a new patient. I feel badly admitting that because I know everyone is processing but my thinking is: do not write about something you are not fully educated on. If you are a new patient and want to start a blog, that’s awesome! I wrote a ton in my journal when I was first diagnosed and it helped me tremendously. But, say who you are. Say you are new at this. Be up front that you don’t know everything but you are trying to cope with this new diagnosis. And refer them to other people’s blogs/websites as well as other places to get accurate information so they can understand a little bit more about Crohn’s Disease and Ulcerative Colitis (the more awareness the better, right?)
I would be interested to know what people think of these thoughts. I feel like every topic boils down to acceptance of some kind; Which does say a lot about how difficult it is to accept life with inflammatory bowel disease.