“You Look Fine” – a Wall of Confusion Surrounding Rheumatoid Disease

Tags: ,

half-lit lampost in Washington DCIf you’ve been diagnosed with “Rheumatoid Arthritis,” then we have a short poll for you of patient experiences with this disease! But first a few words about why this site exists for all of us.

Overcoming the wall of misunderstanding around a disease

When I first started blogging about Rheumatoid Disease, I wrote about The Wall. In answer to an email from a good friend who wanted to know why I would “come out of the closet to blog about RA,” I explained I never meant to be in the closet about this disease. I was actually behind a wall. And then I explained why I believe The Wall around Rheumatoid disease exists:

Now is the time when I will actually do what you thought I did already: be transparent when it is uncomfortable.

When I first got sick, I used to try to explain why I could not do things anymore. But people did not understand because they do not know about RA. People who knew me before I was sick did remember how I had been so agile and strong. However, nobody here knew me – since I moved here right before I got sick.

Sometimes, I was hurt as much from reactions to Rheumatoid Arthritis as from the RA itself. Reactions I have received include cold silence, changing the subject, comparing Rheumatoid Arthritis to a hangnail, and laughing out loud, “Yeah, right, like you are old enough for arthritis!” I was encouraged to get over it.

Why the wall exists

Out of self-preservation, people with the disease naturally stop discussing it with others. Who wants to be insulted and dismissed? While they’re suffering the worst pain and weakness of their lives? Not me.

Of course, the blame for the wall lies with Rheumatoid disease itself for being mysterious, invisible, and surreptitious. After about four years of writing about it, reading research and talking to patients and researchers, I believe it is the most maligned and misunderstood condition. And the tremendous irony is that the disease is not rare.

Taking the wall down TOGETHER is doable!

Since I was very young, I think while I’m writing. And that’s what happened that day, May 20th 2009. I wrote out my approach to transcending The Wall, my goals for this site. You can read more about that on the About page or in that original post.


IMPORTANT: The poll is a short survey and you’ll need to complete it all at once because it will only record one entry from you. If you do NOT have Rheumatoid disease, please send this link to any Rheumatoid patient you know.

Latest edition of The SPEAR newsletter went out yesterday! Check your email box or sign up to get yours HERE!

Recommended reading

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.

Click here to read all the comments or add yours!

Kelly Young. All rights reserved.

This entry was posted on Friday, November 30th, 2012 at 10:35 am and is filed under Don't miss this!. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.


The Post

Comments (61)

What do you think?