Today is 14 years since I was diagnosed with ulcerative colitis, a type of inflammatory bowel disease.
As I sit here thinking about what specifically I want to say about today, I am just left sort of speechless in a way. I think I make it known that this disease changed every aspect of my life.
My anniversary post from last year goes into more detail about the day I was diagnosed, which you can read by clicking on the link below:
I guess the one thing that keeps coming up in my mind is how you approach newly diagnosed patients. There have been multiple conversations and events about the need for patients to be educated, “own their disease,” and understand everything that could come down the pike so you are never surprised.
Maybe I am in the minority but I keep thinking back to this day fourteen years ago. I was 13 and immediately put on high doses of prednisone. Things came on suddenly and fiercely. And then I was hospitalized soon after. I didn’t have time to read brochures or anything like that because I was too busy living it. I figured out how to be an IBD patient as things occurred
It wasn’t easy missing out on so much and having to micromanage and even think about things I never would have otherwise. My life for the past fourteen years has been torture. And had I known what was in store for me, I would’t have been able to maintain any semblance of hope. I had a ton of it for the first five years or so.
My point is this: I am so thankful I wasn’t forced to read up on everything related to inflammatory bowel disease. I am so thankful I wasn’t given literature about all the potential issues that could occur.
There is a balance between wanting someone to be an educated patient and not wanting them to worry about things that may never happen. And as we all know, worrying will only add to the mental health part of this chronic illness and have no affect on the outcome.
It is so great to see how different things are than when I was diagnosed in 2000. Obviously, we have so much more to go but I do see progress in research. I just hope something comes from it.