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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Know When to Let Go

I sat down at my keyboard, closed my eyes, and traveled back in time twelve years. As I recorded my initial symptoms of Rheumatoid Arthritis (RA) for my friend Kelly's RAWarrior blog, little "oh!" moments kept popping up. Now, as I've mentioned here before, I am a minimalist at heart, and I usually struggle to get enough words on the page. This time, however, words gushed forth. My typing couldn't keep up with my memories. My friend had asked for two pages; I ended up with five.

I read and revised and cleaned up my contribution and sent the email flying through cyberspace. I apologized to my friend for the excessive length and told her I'd be happy to cut. She said, "No, no! It's fine as is."

A couple days later, Kelly questioned something I'd said about a particular medication. When I adjusted that section, I corrected a few other things and added an entire statement about a symptom I'd forgotten. I then sent her Version 2.0. A day or so later, I realized I hadn't attached my photo, so off it went. Today it dawned on me I'd forgotten to mention an RA related health issue I experienced in high school, and I hadn't even touched on stressors and triggers.

Writing is intimidating. As a writer, I expose my very soul when I put words on a page. I offer my most personal thoughts and expressions up for the judgment of strangers. I want the best of my best presented to minimize negative response, so I could edit and revise my work to infinity. There must be a point at which I say, "The End," and release it from my grasp, though.

As I have had to come to terms with my ailments and release what control I thought I had over this body, I also, as a writer, must let my words go. I can write and edit and rewrite many times over, but when each piece is ready, I must set my words free to accomplish their own work.

My RA onset story is indeed complete. Though I am tempted to continue revisions, it is out of my hands. I've released it and set it free to do its own good work. It is finished. The End. I pray that my experience, posted here (scroll down to second story), will benefit others who are blessed with chronic illness, and I pray that the lessons I've learned as a writer may benefit those who read this blog.