Monday, January 10, 2011

Edited by RA

Writing can sometimes be a pain. For me, literally. I am blessed with an autoimmune disease called Rheumatoid Arthritis (RA). That is a bit of a misnomer, as RA is neither rheumatic nor arthritic. It is a confused human body that wages war against its own healthy tissue, destroying joints, connective tissue, and internal organs, and causing a plethora of other potential debilities. It disfigures. It hinders. It hurts. A lot. It progressively worsens and it never goes away.

RA has edited my life.

But I know a real-life warrior! She battles this disease herself, but she doesn’t fight alone. Her name is Kelly Young, and she advocates for patients with autoimmune diseases, such as the one she and I share. This post today is part of a blog carnival to increase awareness of these illnesses and bring better understanding and better treatment and care to those afflicted. Thank you for indulging me a bit today, as this Aim for Perfection Editing post ventures from the realm of writing!

One thing Kelly has discovered by interacting with thousands of folks via her RAWarrior website is that RA and other similar ailments are often misdiagnosed and misunderstood, and therefore mistreated or not treated at all. I suppose I am fortunate to have received an accurate diagnosis immediately upon onset. Many are not so lucky and spend years suffering needlessly. Some are told repeatedly that they are not sick, because autoimmune diseases can be invisible. Oftentimes, symptoms do not show outwardly; there are no physical signs. Sometimes, the markers, or lab numbers, do not register in blood work. Other times, an uncompassionate physician simply dismisses the patient’s complaints.

What could be done to reduce the time it takes to receive a diagnosis in such cases? I think doctors need to educate themselves—not by reading textbooks but by listening to their patients—and stop looking at numbers and statistics to define debility. Every patient is unique. Certain symptoms can be present across the board, but sometimes they are missing from the equation. If our condition has brought us to the point of seeking help, we need you to help us.

We do not need to be doubted. We do not need to be judged. We do not need you to minimize what we say we feel. We do not need to be drugged and dismissed. We do need to be heard. We need compassion. We need relief. We need your support, because we need hope.

I have a wonderful rheumatologist now who listens to my concerns, who cares about reducing the limitations RA imposes on my life, who works with me to relieve flares and prevent further damage. She asks me questions, and she pays attention to my reply. I appreciate her very much!

People have asked me why I say I am blessed with RA when it seems a curse. My answer is simple. God has chosen me for this task. He deems me worthy to do His work. A difficult chore, yes, but I am honored to have been selected and I am blessed to receive this assignment.

Read others’ experiences and find my onset story at RAWarrior. See more blog carnival articles here.


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9 comments:

Anonymous said...

Brilliantly written with passion. Glad you have found a fine doctor.
Mark

Bethany from Confessions of an Organized Homeschool Mom said...

Excellent discourse! Thanks for sharing!

Jodi Whisenhunt said...

Mark, it does indeed make a big difference to have a doctor who cares. Thank you both for reading!

Kelly Young said...

Jodi,
Thank you for participating in the carnival. I loved this post.

I'm also thrilled when we can reach beyond the patient population to share via blogs like yours that are not always about RA. We cannot solve these issues ourselves and we need others to learn about what RA and autoimmune arthritis means. The more people know, the better the chances for early diagnosis as well.

Faith Imagined said...

Very inspiring words! My older sis has RA so I'll forward this post to her. It will bless her as it has blessed me!

Yenta Mary said...

Thank you so much for coming to visit me! Happily returning the follow ... :)

Steadfast Ahoy! said...

RA runs in our family too...mostly with the women. I feel your pain.
Rosemary

sskcraftshop said...

New follower came through blog hop...hope you will visit me at http://seemask.blogspot.com

The Owl Nest said...

My daughter has recently been diagnosed with autoimmune disease but she did not explain it to me - I think she is still trying to sort it out herself; thank you for explaining it :-)

~Val

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