Thoughts About Uneducated Patients … would love feedback

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.

 

  • Missy Mouse

    I hear you. I’m pretty new to this disease and a new blogger. But that is actually why I started writing. I was receiving a ton of info and opinions regarding diagnosis and treatment, often conflicting, and it was overwhelming. So I dove in and have been working hard on the education piece every single day. I am hoping that for some others whom have been newly diagnosed, they can feel safe as they learn along with me. I choose to be very transparent in that I am no expert and I’m just trying to figure this disease and my own body out. I am thankful to more seasoned IBDers, bloggers and activists for helping lead the way and guiding us on this journey. But I do think it can be hard for people to want to do the research and education. I also think there is a lot of misinformation out there to latch onto. That whole BBC- Crohn’s – Junk Food story is a perfect example of bad info and bad press misinforming the public, including patients.

    • http://risaroo86.wordpress.com Marisa Lauren

      You sound like you’re doing what’s best for you and the IBD community. You writing will help newly diagnosed pts, you’ll learn more from others like you said, and it’ll be a good catharsis for you (I’d imagine!) That BBC story .. Wow :/

  • Sherri

    As a caregiver for a newly diagnosed child, my way was to try and learn everything about UC…looking back it was overwhelming and unbelievably scary…so perhaps a bit of denial set in, thinking that your case would be “easy”, for lack of a better word. I think diagnosis and acceptance and everything that goes along with it is a very personal journey. And that fact that there is no textbook/typical case makes it all so much harder…:(