Today’s Prompt:
- Create a “care page” – a list of your best resources that someone who is newly diagnosed could go to when starting to advocate for themselves or a loved one. Remember to include sites that lead to successful self-advocacy!
I know when I first started having symptoms WebMD became my life line. By the time I got diagnosed I had narrowed it down to Crohn's or UC. I went into my post colonoscopy prepared to be told it was one or the other. It made the news less damaging. When the GI said, "Left sided colitis", it was no surprise. I even knew a lot about the meds that were possibilities and when he put me on Asacol, I had already read about it.
Being familiar with the words, and the terms didn't make me any more prepared for the LIFE. I felt very isolated and only told a few about my diagnosis. I needed to just carry on. If I told people, they may treat me differently and then it would impact my life. I wasn't ready for that. It really wasn't until my first hospitalization that I finally became more realistic that, UC was a big part of my life. I was sick. I had a DISEASE!!!! Me! A disease. It's hard to wrap your brain around. Once I was hospitalized, it woke me up that life was now different. I was different. In little ways I started to feel alone and defective. I started looking online and through Facebook for groups. I needed a connection with people who understood. I needed that community. What I found was some really great people. Being (pseudo) surrounded by others who are experiencing what you are is empowering. I stopped feeling defective and became stronger in my ability to discuss my issues. I went from thinking no one would understand to knowing there were thousands of people going through what I was and it allowed me to do something about the people I thought wouldn't understand. IBD is a difficult thing to just throw into conversation. In school today it happened. I had said that at one point I had needed 4 units of blood because I had lost so much during my flare, and a person asked, "Well how did you lose it". That's when you get to tell them that you shit blood. There's really no way to pretty that up. My number two's were always bloody? No, that doesn't dial in on the fact that blood literally POURS OUT OF YOU. Like holy shit, I'm going to bleed to death right now on the crapper. Yeah, so IBD is hard to put delicately and many people don't want to hear that. It makes it real. The reality can suck.
So here is my list of FAN-FREAKING-TASTIC sites that are empowering and educating and supportive and welcoming and helped me to move forward to tell my story whenever I got the chance. Which is often! =) I hope it helps you cope and learn you have power in your story, or maybe you will pass them on to someone you know who just got diagnosed. Or maybe you are just curious. Either way.... check them out! Thanks for reading!
No comments:
Post a Comment