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

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 person with a disease 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 the patients 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 people, 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 people 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 quality of life of people with RA.

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 people with RA 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 do reduce RA fatigue for many people.

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 people without the disease 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 people with the disease don’t like being misunderstood.

Every day, people with rheumatoid disease 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:

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

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

  • August 6, 2009 at 9:48 am
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    I agree with your whole post. While I am doing fairly well (not too much pain), I still struggle with fatigue, depression, and the feelings that no one understands. I am single and the biggest reason that I really don't want to "get out there" is that I know my disease is going to get worse, so why bother. Is this the best time in history to have RA? Maybe, but it would be nice to have a cure.

    Reply
  • August 6, 2009 at 8:41 pm
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    Mallen: I have had OA and RA for years. I met and married my hubby after the disability was there. Be kind and gentle to yourself. I can tell from reading your comments, etc that you are beautiful..inside and out. Yes, many people don't understand, but some do. Smile..MissDazey understands, so does Kelly.

    PS: To everyone..there are many days I don't understand it myself. hehe

    Reply
  • August 6, 2009 at 9:03 pm
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    Understand or not, we are in the same boat together, so at least we know the score!

    Mere,
    And I agree with your whole comment, too. ;D

    Reply
  • August 6, 2009 at 11:40 pm
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    Why don't you know that I prayed every night for 10 years, begging to have RA at this time in history!!!!!! Sarcasm intended, of course. What really floors me is that when there is a drug trial, if X amount of patients have 20% reduction in symptoms it is claimed as a successful drug for RA!!!??? Do what???? I know I want more than 20%, how about everyone else?? Excellent blog as always Kelly. Please take care of those fingers. Maybe a voice recognition program would be helpful for you even if you only use it when the fingers are at war with you!! Hugs to all,

    Jamie

    Reply
  • August 7, 2009 at 3:48 pm
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    Hello Kelly,
    Kind of makes you excited that we are so fortunate to have RA doesn't it! I understood, after I was diagnosed, that I could no longer do a lot of the things I once did, or if I could do them just not at the same level of intensity. This has been the hardest on me always being active playing football, baseball, working out, racing my mountain bike and motorcycles. I have adapted, not felt sorry for myself and gone on being happy with what I can do from day to day.

    But, in my opinion, this is just an insulting statement to all RA patients. Just a marketing campaign designed by someone who does not suffer with RA day in and day out.

    By the way, Jamie is right. When I went to school, 20% was an F, not a success!

    Reply
  • August 7, 2009 at 6:28 pm
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    Jamie and Tharr,
    "20% is an F" – BWHahahaha. ;D Thanks for the laugh.

    Reply
  • December 4, 2009 at 6:37 pm
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    I think it is totally ridiculous for ANYONE to claim that there is EVER a BEST time to have a disease. So I guess if my son goes to college one day and ends up with Meningitis and his life is saved with modern drugs but he is disabled the rest of his life that is because it is the BEST time to have had Meningitis? Maybe a boy who loves soccer, cross country running, and is a guitar prodigy would not consider a life where he could do none of those things worth living. Quality of life is important. I tell you, my grandma had disabling RA with very twisted fingers. She died in the ’80’s when I guess it was not the “BEST” time to have RA. She really only took meds for pain, she used to paint with oils and sometimes she drew with pastels. She had real talent. She could not even read a book at the end. I really see no difference today in women. Sometimes I think it is because we are women. Good article, like always! I will be saving to OneNote. Maybe my family will realize I am not lying when I tell them I am really tired. :cat2:

    Reply
  • August 21, 2010 at 12:11 am
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    As someone who’s had RA for over 14 years and has needed to go to the next level of meds many times, I think our treatment choices are much better than 20 years ago. I have three REPLACEMENT PARTS-hip in 1999, knee and shouder in 2005!! I know I’d be in a wheelchair stuck in some nursing home helpless and dependent on other peoples caretaking without the new surgeries available. Somewhere/sometime in my 50’s. Even though I’ve been on Social Security Disability for 3 years and need bi-monthly help with housework, I AM FREE! Living independently in a senior apartment complex using lots of handicap helpers (bars in bathroom, raised toilet, easy door handles, emergency call necklace, etc.)

    I can still take care of myself joyfully! Choose my own schedule, grocery shop, drive…all the day-to-day options I didn’t have during my post-surgery sentences to Rehab/short term Nursing Homes from 2 weeks to three months (broken ankle from a fall).

    Thank you God and many medical pioneers for all the efforts made to help us Rheumatoid Warriors of 2010 and beyond.

    Reply
    • August 21, 2010 at 1:34 pm
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      Hi Bernadine, I’m glad to hear you are free to do more because of the wonderful technology of joint replacement. That is a very good point for anyone reading! Thanks!

      (Please don’t worry about your comment not posting right away. I will go ahead & delete your duplicate comment. It was very late here & I had fallen asleep. The comments post as I approve them. This helps eliminate spam.)

      Reply

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