Wednesday, May 20, 2009

Transparency and the Wall

Communicating about Rheumatoid Arthritis

This post is an answer to my dear friend from Oz:
She writes about wondering why, as a woman with Rheumatoid Arthritis, I am usually so private about my health issues. She also praises me for "coming out" to write this blog. She wonders whether I had to overcome "false pride" as she did.

Wow. I never thought I was "coming out," so I thought about your letter all day. I did not ever try to keep my RA in the closet. (It is much to large to fit in there.) So, I am glad for the opportunity to explain how I got to be where I am.

No, dear friend, the reason I answer, "Fine" when asked about my health is not pride. I do not try to hide the RA. There are more complicated reasons for the lack of openness with certain people. I have always been willing to be honest about the RA, so blogging was not a giant leap for me. I love to share and network with others who are searching or hurting.

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

I could write a book - No two books: one book about the way I have been treated and a second one about all of the other RA folks who have told me the exact same stories. That's right! We actually swap stories because we trust each other.

Anyway, I won't ever write those books. Instead, I will put my energy into making a difference. My humble goals:

1) Education of the whole world about what RA really is.
2) Helping a few RA patients to get more out of their lives.
3) Be one tiny (but bright and shiny) dot in the "connect the dots" puzzle of curing RA.

So there you have it, my small friend in the sparkling red shoes!
It isn't pretty. It isn't pride. It's plain old self preservation that made me do it.

I promise I'll do my best to follow my own advice: share with those that will listen, but not feel responsible for others' denial. Sometimes, that denial is a wall that is too high to scale. Didn't I tell you that I have a disability, after all?


Gloria said...

Hi Kelly,
I'm the mom of Julia of Julia's Journal. Your daughter found my daughter's blog and left a nice comment. They have a lot in common.
I, too, have RA for 12 years now. I am so sorry to hear that you are not doing well.
My recent post explains the treatment I am using. Please go over there and read my story.
Have you had other problems from the drugs, like liver or kidney damage?
We homeschool and used to live in the same state as you do.
So nice to "meet" you!

Kelly said...

Thanks Gloria,
Seems like we have a lot in common.
Love your snow pictures - that we don't have in common. I am in Florida!
But I love snow as much as I do the beach!