Is This the Best Time to Have Rheumatoid Arthritis? Part 1: Quality of Life

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Quality of life fishing NCWe hear it all the time: “This is the best time in history to have Rheumatoid Arthritis.” How true is that? Let’s examine the facts.

But first, what RA’er can hear that said without a reaction of dismay? No one who actually has Rheumatoid Arthritis claims that there would be ANY good time to have RA. Of course, we are too polite to say it that bluntly, but it’s accurate.

“Quality of life” & living with Rheumatoid Arthritis

One study showed that RA’ers who took abatacept (Orencia) had improved quality of life as measured using standardized questionnaires. The patients felt that they could do more. But how much more? Could they do what they could do before the onset of Rheumatoid Arthritis? No. They could do more with Orencia than without Orencia. That is improvement, but it is also relative. Let’s break down that “quality of life” slogan.

How does Rheumatoid Arthritis affect quality of life?

Pain
Pain has an obvious impact upon quality of life. For most RA’ers, treatment with DMARDs reduces pain to some extent. But, there are also answers to what I call Leftover Pain. Today there are innumerable medications and therapies to treat pain

Why do I know so many RA’ers who live in so much pain? I have read research which proves that doctors routinely under-estimate the pain of their patients. Proper pain management would be one of the most dramatic ways in which modern advancements can improve the RA’ers’ quality of life.

Depression
Numerous studies have shown that depression follows Rheumatoid Arthritis like footprints in snow. RA makes an impression on a life that cannot be ignored. If severe Rheumatoid Arthritis is not successfully treated, the impression can be deep. Our Rheumatoid Arthritis and Depression post looks at this more closely.

Disability
How can you measure the impact of disability on quality of life? The statistics paint a dreary picture. Researchers say they are difficult to track due to inconsistencies in Rheumatoid Arthritis diagnosis, especially across various countries.

Career-ending disability due to RA is still extremely common. Eighty percent of people living with Rheumatoid Arthritis say that every aspect of daily life is more difficult. One-third of RA’ers no longer do the same work within 5 years of diagnosis. After 10 to twenty years, half are considered severely disabled. Two-thirds say they have difficulty getting out of bed. And one-third cannot get dressed on a hard Rheumatoid Arthritis day. (Some stats quoted here on About.com.)

Fatigue
I call Rheumatoid Arthritis fatigue the Kryptonite of Rheumatoid Arthritis. Rheumatoid Arthritis fatigue incorporates low energy, physical weakness, and rapid exhaustion all in one fine package. If you read What Causes the Fatigue of Rheumatoid Arthritis, you know that studies show that modern Biologic treatments for Rheumatoid Arthritis do reduce fatigue for many RA’ers.

Relationships
There is a frustration in not being able to describe to others the pain, weakness, and disability of Rheumatoid Arthritis. Sometimes they are too intense for non-RA’ers to imagine. This communication problem leads to improper expectations. And worse, the Rheumatoid Arthritis that causes all of these problems is invisible – unless you have x-ray vision.

All of this can bring confusion and disappointment. Difficulty in understanding how grueling Rheumatoid Arthritis is can create a barrier between people. Well people don’t want to hear about pain and illness all of the time; and RA’ers don’t like being misunderstood.

Every day, RA’ers communicate to me their aggravation that people “just don’t get it.” The strain this places on relationships is obvious. Loneliness is too often the result.

Outlook
Rheumatoid arthritis is a progressive disease. So people living with Rheumatoid Arthrits know that life will probably get harder instead of easier. Eighty-one percent of us report feeling frustrated that we are no longer in control of life.

Then again, Rheumatoid Arthritis can sometimes have remissions. And some patients with less severe RA obtain good control with drugs. Alternatively, the destruction of RA can be answered with astonishing surgical techniques. So, the forecast of the future is not necessarily bleak. But, it is still rather foggy.

Is this the best time in history to have RA? Tomorrow, in part 2, we look at QUANTITY of life: Mortality and Rheumatoid Arthritis…

Recommended reading:

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Kelly Young. All rights reserved.

This entry was posted on Thursday, August 6th, 2009 at 7:00 am and is filed under Reality Check. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

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