Good Living with Rheumatoid Arthritis book review | Rheumatoid Arthritis Warrior

Good Living with Rheumatoid Arthritis book review

Good Living with Rheumatoid Arthritis-reviewThe book review I dreaded

“Good Living with Rheumatoid Arthritis Is More Possible Now Than Ever Before!” Can this cover claim be upheld? For months, I’ve put off reviewing this book published by the Arthritis Foundation because I hate to sound negative. Why should I feel like I am obligated to praise a book?

Whoever wrote the cover blurbs sure flattered the writers. Here is what they claim is inside:

Front cover: “Find the Tools You Need to Ease Pain, Reduce Joint Damage, Improve Mobility, Relieve Stress.”

Back cover: “In this book you’ll discover… Easy ways to improve your flexibility, reduce pain and stiffness, and manage stress.”

It sounds like Good Living with Rheumatoid Arthritis is a wonderful prescription – if it delivers.

Here’s what I didn’t like about Good Living with Rheumatoid Arthritis:

  • The tone is impractical: I felt like the writers hadn’t talked with anyone living with moderate to severe Rheumatoid Arthritis.
  • Some information was outdated. The internet keeps up with research better than books can.
  • They gave too much ink to the notion that Rheumatoid Arthritis pain is subjective and can be controlled by techniques like mental imagery and self hypnosis. This is of limited use to people experiencing severe pain from a damaging disease.
  • They presented an unrealistic view of exercise, even using the dreaded phrase “Use it or lose it.”
  • Have you ever heard of “rheumatoid personality”? They present it as what some doctors believe to be the source of Rheumatoid Arthritis pain. Can you believe this?
  • There’s more, but I want to keep this short. So, just one more thing: it’s printed on really heavy paper, so it’s too heavy to hold in our hands.

What’s good about Good Living with Rheumatoid Arthritis?

  • The authors expect doctors to talk to patients like real persons, even providing forms to prepare for appointments. However, they do not come with any guarantee of doctor cooperation.
  • They approve of the use of narcotics for Rheumatoid Arthritis pain which is not controlled in other ways. This has been a controversial topic over the years. Perhaps that is related to some of the concepts discussed in the last section. What is controversial about pain control? Nothing, if the alleged pain is seen as actual pain.
  • I infer that they envision patients as managers of their own treatment programs. Although there is much resistance to this idea in the medical community, it is the only path to “Good living with Rheumatoid Arthritis.”
  • The book includes a few short vignettes from people living with RA. This is probably the best part. It is almost like getting a little page from a blog. They are more realistic. One nurse even tells how RA made her blind in one eye and affected the adjacent ear.

Does Good Living with Rheumatoid Arthritis deliver?

Of course I also like the promises on the book cover. Too bad they couldn’t truly deliver on them. They should not feel bad about that because “easy” answers for RA are impossible to deliver. Easy answers don’t exist. Maybe that’s not the fault of the authors. They just need to find more accurate book cover editors.

I wouldn’t want to be a lawyer defending those cover claims in court.

Update 2/2010: This post raises a couple of interesting issues. The Arthritis Foundation emphasizes exercise for Rheumatoid Arthritis in this book and in every campaign. It’s promoted without regard to disease severity or response to treatment. We have had some discussion of exercise with RA on the blog already. There are lots of comments on that hot topic on the links listed below if you want to join in.

Second, there is concern that the tone of the book and several statements in it do not reflect an understanding of what it’s like to live with RA. This is also true of this article from the Arthritis Foundation about hypochondria and chronic pain.

Recommended reading

Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

15 thoughts on “Good Living with Rheumatoid Arthritis book review

  • August 4, 2009 at 8:32 am
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    I admit I have followed the blog but haven't commented before, but this one inspired me- oddly enough…I got that book from the Arthritis Foundation after I was first diagnosed; it was about a year ago now. It took me a while to realize that whoever wrote it must live on a completely different planet, probably the same one the author's of the Woman's Day article live on 😉
    I recently threw it out when I actually got myself inspired to clean (usually when I have energy I go do something I enjoy more ha ha)since I could think of no use for it. It gives some interesting tips, none of which have I ever put into practice. My experience seems to be that the Artiritis Foundation has different goals for me than I do. I don't want to hear inspiring stories of people with JRA who have gone on to do well or stories of an older woman who has RA and is happy to garden and walk her dog now…those stories are inspiring, and helpful, and educational, but they don't reach someone like me who is 24 and relatively recently diagnosed (though my doc thinks I have had it since my teens…the diagnosis process for me was lllloooooonnnnnggggg). I want better than that for myself even though I know I have to fight through a lot to get that. All that to say Kelly, that I agree with you, there is a woeful lack of understanding of RA, even from those organizations and Doctors that should understand it best. I appreciate your efforts to help and can't tell you how helpful I have found your blog.

    Reply
  • August 4, 2009 at 8:40 am
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    Good review. I think reviews should be honest like yours. Of course, the reason people write books are to sell them to a broad range of readers.

    I hate it when someone tells me to exercise or "the use it or lose it thing." I use my hands and fingers all day long on the computer,yet my fingers curled, very deformed and all but lost the use of my right hand.

    Reply
  • August 5, 2009 at 6:04 am
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    Not a sin in any way that I can see. I was snared into the upbeat stuff of the Arthritis Foundation early on in my journey. As my journey continues down the the path of RA life I find that I have become disillusioned with several notions of the AF.Don't get me wrong they have done more for RA than any other organization that I know of. However, yep… Read More you knew the but was coming, AF usually fails to reveal the everyday life in the real world of RA. They forget to include in their writings the everyday struggle to hold a cup of coffee, to tie your own shoes, to get that plate on the high shelf. Another thing that really bothers me is their magazine Arthritis Today. I have yet to see anyone in that magazine in a wheelchair!!!!!! Almost all of the personal stories are from people that work full time, go golfing, do marathons, etc. This is a good portrayal of maybe 10% of the RA population. What about the rest of us????

    Reply
    • May 24, 2010 at 11:11 pm
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      😉 I hate the commercial for RA can u do this I say NO I CAN’T DO THIS!! orenica commercial..hate them for advil,well you know the rest..

      Reply
  • August 5, 2009 at 6:05 am
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    Continuing on……. I know they try to stay upbeat for RAers, but (there it is again) what about the real world???? I guess I am trying to say that I get tired of sunshine being blown up my backside!!!!! I would think that a foundation who's sole purpose is to get out info. about Arthritis and related diseases would give everyone the straight truth sometimes. Wow, didn't know I had all of that in me. Kelly, very sorry to take over your blog. I will be quiet now.

    Reply
  • August 5, 2009 at 7:29 am
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    Note to Jamie: Thanks for expressing that about the Arthritis Foundation site and magazine. I feel similar. Sometimes I think I must be doing something wrong or even worst thinking, "I must deserve this suffering". I don't honestly feel that way, of course.

    OK, everyone..how can we get our message to the powers that be at the Arthritis Foundation site?

    Reply
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  • May 24, 2010 at 11:07 pm
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    😉 Omg I have had so many tips on RA & living w/ RA that I am sick to death of hearing use it or lost.ur goin to lose it even if you do use it..so whats the point .I just tend to agree with all of the post in reference to the books.hogwash…lol have agood one

    Reply
    • May 24, 2010 at 11:19 pm
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      Thanks, Roxie. Yeah, “Use it or lose it” just sounds good to them I guess. They don’t know. They don’t have it.

      Reply
  • February 8, 2013 at 3:54 pm
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    I do recommend exercise, with a HUGE caveat. Exercise is very personal. Some flares are so excruciating that turning a door knob causes pain as though your wrists are broken. Then, lifting weights is impossible. Swimming is great, but changing into a swimsuit requires dexterity that is impossible for some. Walking on the cement to get to the pool can be insurmountable. Blow drying your hair afterwards? With a brush? Are you kidding? You see what I mean? It is very subjective and entails a cost-benefit analysis with each person, each time. I have many different forms of exercise, depending upon my mood and the pain. Some days, it is enough to do stretches in bed. On a few lucky days, I can go to the gym. Most days, it is a compromise.

    Reply

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