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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