Tuesday, August 4, 2009

Good Living with Rheumatoid Arthritis book review

Can this bookcover claim be upheld? “Good Living with Rheumatoid Arthritis Is More Possible Now Than Ever Before!”

I’ve been putting off this book review post because I am afraid I’ll sound negative. Why do I feel like I am obligated to praise the book because it is published by the Arthritis Foundation? Is it a sin for an RA-er to criticize the Arthritis Foundation?

Whoever wrote the cover certainly flattered the writers. Wish I agreed. 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.”

Here’s what I did not like:

The tone is impractical: I felt like the writers have not met anyone living with moderate to severe Rheumatoid Arthritis (a large percentage of RA-ers).

Some information is already outdated since science moves fast and the internet keeps up better than books can.

They gave too much print to the notion that Rheumatoid Arthritis pain is subjective and can be controlled by techniques like mental imagery and self hypnosis.

They presented an unrealistic view of exercise, even using the dreaded phrase “Use it or lose it.”

Have you ever heard of “rheumatoid personality”? Some doctors believe it is the source of Rheumatoid Arthritis pain, would you believe?

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.

Here’s what I did like:

They 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 RA-ers as managers of their own RA treatment programs. Although there is much resistance to this idea in the medical community also, it is the only legitimate basis to “Good living with Rheumatoid Arthritis.”

The book includes a few short vignettes from actual RA-ers. 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.

Of course, I also like the promises on the book cover. Too bad they could not really deliver on them. They should not feel bad about that; “Easy” answers for RA would be impossible to deliver. They do not exist. That is not the fault of the text writers. They just need to find more accurate cover designers.

All I can say is, I wouldn’t want to be a lawyer defending those cover claims in court.

Post-Blog: If the comments on exercise were startling to you, please read this post on Exercise. And coming soon: Should RA-ers Exercise? Part 2. If the comments that RA is a serious disease sounded surprising, you might read Can Rheumatoid Arthritis Kill You? If you are adjusting to life with RA, I suggest Shifting Sand.


V said...

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.

MissDazey said...

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.

Kelly said...

Speechless. ;D

jamie said...

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????

jamie said...

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.

MissDazey said...

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?