The Survey

As my husband reminded me, I haven't yet posted about my experience participating in the survey. I mentioned it in early February, I think.

The survey was set up like a blog. We went to a webpage to sign in (under anonymous codes--mine was CD147, I think) and then were directed to a website with a folder for each day. We were required to visit everyday for four days in a row, for 30 minutes total each day (I assume they tracked our logins and logouts), and we answered questions that they had divided into different tabs, different pages. This is sounding very confusing. I'll stop being so specific.

There were about 12-15 participants (all with Crohn's) and one moderator, and we were supposed to read the questions for the day, respond, and read the other participants' answers and respond to them. It was helpful to login at various points in the day to see what other people had responded and see if the moderator had asked any follow-up questions.

The questions broadly covered many, many topics related to Crohn's (CD) and living with CD. And the participants were very candid, so I followed suit. It was cathartic to be open with my thoughts and hear other people being open with theirs, and find that others shared many of the same concerns that I did. The questions covered topics such as how we liked our medication, how did we prefer medicine administration (i.e., "Would you change medication if you found an equally effective one that was administered once daily as opposed to thrice daily?), how did our CD affect our daily lives (i.e., "Do you let household tasks suffer because of your CD? Which tasks specifically?" "Do you need to pack extra changes of clothing when going on errands?), how did CD affect our relationships, how did CD affect our emotional health?, etc. Very, very good things to think about in the context of similarly-challenged people.

I felt empowered and also saddened. It was good to know that I was not alone, but hard to realize--from the other people's lives--that as CD goes on, as you get older, it tends to get worse and requires more intervention (like surgery). And I noticed that people who were diagnosed younger had more troubles as they aged. I was diagnosed not early, not late, more in the middle range. And praise God that I don't have some of the problems that many of these people had: multiple needs to go to the bathroom IMMEDIATELY (which required them to know every public restroom in their town or on the route of any trip, etc.), recovering from surgeries, not being able to have a job because of exhaustion and too much time spent in the hospital.

And I also learned that there were people there who despaired of their lives, lost friendships because of their CD (or, more likely, because of the way they handled their CD), and had no relationships or church families or joy in their lives. Then, there were others who had the same level of surgeries and pain and disability who were upbeat and hopeful and led fulfilling lives, who didn't isolate themselves and asked for help and looked for the good in situations, taking every opportunity for joy that they could find. And that last group was inspiring to me. It's not that they never were sad or felt pain, but they kept themselves from despair and were thankful for what they had. Not isolating yourself was a big lesson.

Saturday I got my $75 check for participating in the survey and treated myself to (among other things) an IBD Cookbook. I'm hoping this will encourage me to be more excited about the food I CAN eat and stay healthier.

Thanks for listening.