One Size Does Not Fit All

I sort of want to whine about post-MTX day misery and having a cold on top of it, but I’ve decided to spare everyone that fun.  Instead, I’m going to rant on another topic.

I posted the top ten influencers the other day, and I made sure to check out all the sites I hadn’t yet.  Some of them will be good ones to follow, I think.  Anyway, on one (http://midatlanticarthritis.wordpress.com/) she had made a list of some good books to read, related to RA.  I am always on the look out for good reads, so I put them on my to-do list.  Yesterday, sick in bed post-MTX, I decided to read Take Me Home from the Oscars by Christine Schwab.

I get why people like the book; it was an interesting read, especially with all the behind the scenes “stuff” about the entertainment industry.  But I’ve got to be honest.  Until that last chapter, she was not the arthritis advocate that people are saying she is now.  Oh, I know she’s turned around and started publicly advocating for the Arthritis Foundation and that’s great.  But I really, really hope that NO ONE looks at the first however many chapters of her book as an example for how to live with arthritis.  She was so focused on perfection, of hiding her disease, that in a lot of cases she did not take care of herself.  AT ALL.  That should not be the lesson we give the newly diagnosed: go about your life, popping pain pills and using prednisone as a fix it drug, and make the best of it.  We should not be telling people with RA that they are expected to be able to continue their pre-disease life without anyone knowing they are sick.

I wish somewhere in her book she had explicitly told her readers that following her example would be a bad idea, that pretending you are not sick is a bad idea, that using prednisone like a fix-it drug is a bad idea (she does talk about that a bit, but not to the degree I would have liked).  I wish that she had told people that it is okay if you can’t be who you were before you are sick.  She spends the whole book saying it was not okay for her to be anything less than perfect, and I get that feeling.  I get why she felt that way.  But even in the last chapter she does not give her readers permission to be different, to be sick.

And yes, I know she didn’t write a self-help book, but a memoir.  But all I could think through much of the book is that I wanted to smack her for being stupid and short-sighted.  I wanted to smack her for the lessons she’s giving people who don’t know enough about RA to know that she was being stupid and short-sighted.  Healthy people who read the book are going to get the idea that with some pain pills and some steroids, all of us can mostly function in high-pressure jobs with lots of travel and loss of stress.  But this isn’t the case for most of us.  Hell, there are going to be sick people who read the book and feel guilty because they can’t do everything that she was doing.  Or even close to that.

I get why she’s a good voice for RA; I get why the Arthritis Foundation is happy she is advocating for them.  But I just feel like her book should have come with an extra couple of chapters with some good information, with some practical advice for living with RA, with an explanation that not everyone will be able to do the things she did and get away with them, that not everyone will find a miracle drug that puts them into remission for years.  Her story is only her story and for people to look at her story as the shining example for life with RA is bullshit.  And also a total disservice to people with RA.

Ok.  Soapbox over.  Obviously I’m feeling a little sensitive about this.  🙂  I have some guilt about all that I can’t do right now, and I guess that’s pretty obvious when I’m ranting about a book!  Anyone else read and have an opinion?

 

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