Monday, July 13, 2009

If You Do Not Have Rheumatoid Arthritis, Please Read This

A Memo to Non-RA-ers

My mailbox stays full of “nobody gets it” messages. People feel lonely and frustrated because most people don’t get RA. No, I mean they don’t “get it” as in understand what it is like. Recently, we discussed the UK campaign against ignorance about Rheumatoid Arthritis.

Let’s talk about our own campaign. What are some things we want the Non-RA world to understand? Why? How can we achieve our goal?

What we want you to know

We want you to know what Rheumatoid Arthritis really is. We want to correct the myths and misunderstandings about RA. And, we want you to understand the consequences of a life with Rheumatoid Arthritis.

Think for a moment: Have you ever have tendonitis? Or “tennis elbow”? How about a sprained ankle? Maybe a dislocated finger? Heel spur? Torn rotator cuff? Broken bone? Jammed toe? Or a ganglion cyst? Maybe you have a bit of osteoarthritis in your knees? If you have, then you have a better ability to understand than you knew. Imagine that you had that painful incapacitating condition in every joint.

If you do not read any further, and you re-read the last paragraph, we will have made progress. That was not hyperbole. Rheumatoid Arthritis progresses at different rates, so your loved one may not have involvement in every joint, but you can still get the idea.

Oh, and if I may offer an ever clearer picture, add a bad case of the flu that to the cocktail. You are getting close.

Do you know which joints are involved with your loved one? Are you sure?

We also want you to see why we cannot forget about the RA for very long. Even though you cannot see it, it is eating us alive. Literally. And we are not able to make our hands or our feet do what we tell them anymore. So, if we can put it out of our minds for a few seconds, it comes back in again when we try to move.

Why we want you to know

Why do people with Rheumatoid Arthritis want the comprehension of the non-RA world? Why do we care whether you to get it? Obviously, it would be nice to have sympathy and to feel validated in our suffering.

But that is not our point.

We want you to recognize what Rheumatoid Arthritis is because your reaction to our condition is sometimes not appropriate. Imagine with me again. What would you think if someone handed you a hatchet and asked you to chop some firewood with your broken arm?

No one would do that because everyone understands what a broken arm is. So, that response to your condition would be inappropriate. It would be ignoring the reality of your broken arm or at least extremely minimizing its significance. But broken arms are not invisible.

I have entitled this principle: Recognition Leads to Accommodation. It is the reason that most of us will hold the door for an elderly person or cut meat for a toddler. If any limitation is apparent, most of us will naturally make efforts to accommodate the disability.

Rheumatoid Arthritis brings disability and usually requires accommodation. Not doing so seems cruel.

How can we help you to understand?

We can tell you the truth about Rheumatoid Arthritis, busting the myths as gently as possible. We can refuse to participate in any denial about RA or what it is doing to our lives. We can stop allowing others to dismiss us as malingerers.

From our side of the wall, that is what I see. Now it is your turn, Non-RA World. Tell me how we can help you understand Rheumatoid Arthritis. Please.

Personal thought
Sometimes, I wonder whether people would have responded any differently if my diagnosis had been a more well-known disease like diabetes, heart disease, or cancer. I like to think so. I am guessing that people treat RA the way they do because they do not get it. I am hoping that I am correct.

Note: If you found this post interesting, you might also like to read Transparency and the Wall or Use It or Lose It.

5 comments:

Jenny said...

Kelly, I have just spent the last several hours going back to the very beginning days of your blog (since I just discovered you a couple weeks ago!) I've told you already that I look forward to a new post each day...well, looking back was no exception. You have brought tears to my eyes, a smile to my face, a deep sense of understanding and a huge compassionate heart. I was especially moved (and horrified) to read about your friend at the beach, the entries dealing with false pride vs. openness, shifting sand, empathy and especially "hope in a spray can". Sorry to lump all these into one comment but I thought if someone else had just discovered your blog, they would be wise to spend some time looking back. :-) It's been time well spent! Also, this entry is also a great one. I've sent the blog link to several of my family and friends and hope it will increase their understanding, too. Thank you, friend.

Jenny said...

I just realized that you had posted links to two of the entries that I was referring to above ...again, they are a "must-read" for those who haven't done so, yet!

Kelly said...

Jenny: THANKS for the encouragement, new friend!

Newbies: Good advice from a good lady.

Hahaha. :0

Ricky said...

Kelly, I'd like to add a link to this on the http://notdoneliving.net/openletter/options page under the "same theme, different inspiration" group. Is that OK with you?

Kelly said...

Great idea Ricky. I have looked at the pages. You are doing a good work.

You can also PM me on the AB or Facebook anytime.