Behind the Scenes Video: Patient at a Social Media Conference
Telling it like it is. On camera. It’s uncomfortable.
It’s very hard to talk about harsh pain. Why does pain seem so embarrassing? I even gave birth in quiet agony a few times because of that.
3 aspects of RA that are difficult to discuss
- It’s hard to talk about pain, so most of us are pretty private about the intense and constant nature of pain with RA. I strongly recommend the article about the study by Vibeke Strand from 2010. It shows the constancy of RA pain, even with treatment.
- It’s also hard to explain The Usage Principle. I recommend this blog post and the 50 comments after it. It’s what I call the “dirty little secret about RA.” Almost everyone with RA experiences it, but it’s not in the academic literature. (It’s one of several things first brought up on this blog.)
- It’s hard to function in a crowd of healthy people who don’t understand that you need help. That’s why I wrote By the Way, I Have RA.
Anyway, the other night, I took 5 minutes to talk about how hard it is and we created the following 90 second YouTube video from that. After we stopped recording, I took pain medicine and slept. I couldn’t even wash off my makeup. You know how it is when you hit the wall.
Post blog: By the way, I recorded some happier sounding videos a couple weeks ago & we’ll post asap. I learned iMovie on KB’s Mac to edit this one. And I think I’ve finally got a program that will relate my Kodak flipcam to my Dell laptop. Exciting to solve long-standing tech issues isn’t it?
- How Rheumatoid Arthritis Pain Affects Women’s Lives
- What Is it Like to Live with Rheumatoid Arthritis? Part 3: Communication Failure
- What Is it Like to Have Rheumatoid Arthritis? Part 1: The Usage Principle
- By the Way, I Have RA
- 10 Essential Facts About Rheumatoid Arthritis No Doctor Ever Told Me
NOTE: Your comments are an important resource for future readers of this post in the months to come. Please find the comment link below each post.Kelly Young. All rights reserved.