I was approached by a Literary Agent on New Years Eve and asked to review a book on Fibromyalgia, put out by a *major* hospital system. He didn’t have to ask me twice! Not only was I thrilled that someone like this had found me and my little Blog, but I was also honored to be working with such a well respected hospital; one we had considered traveling to ourselves. After a few emails, he agreed to send me the book AND offered me the opportunity to interview the two Doctors who had written it. As much as I was super concerned about perfecting this interview, the questions easily flowed from my mind. I wanted to present my Readers with some super concise and meaningful questions that these two renowned Doctors could answer; tough questions, with important answers.
I got onto Amazon to look up the book, see how it was reviewed and to read a synopsis. My excitement very quickly dwindled on seeing only 23 reviews. The book had been put out several months ago, by a leading hospital, so I was shocked that it didn’t have more sales and reviews. But that wasn’t really what crushed me the most. Among other negative reviews, one of the reviewers said that the authors can “bite me”. Awesome. I read through the other reviews with a defeated heart, but ultimately decided I was going to wait to receive the book myself and determine my own opinion.
Getting that book in the mail, with such the sender being who it was, was totally surreal. Nevermind, I was also going to get to interview these experts and possibly contribute further. The possibilities flooded my mind. Until I read page one.
It was funny that I had just written a post on 10 of The Worst Comments I’ve Received Since Becoming Chronically Ill which you can find here: https://fightingwithfibro.com/2020/01/29/10-of-the-worst-comments-ive-received-since-becoming-chronically-ill-and-how-i-handle-them/ Because that’s immediately what it felt like to see them promise that people who read their book report having less pain. That’s like telling me that drinking celery juice will cure me. I was astonished how they could ever make such a claim and deeply angry and disheartened over such a blanket statement. Furious, I still decided to keep reading, hoping it would improve.
I’m sad to say, not only did it not improve, it only got worse. And ultimately, by page 55, I couldn’t read anymore. I quickly skimmed through the section on medications and found what I expected: opioids (and pain meds) are evil and they don’t work (insert dramatic rolling of the eyes here).
Despite all the opportunities that writing a positive review could have afforded me, I had nothing positive to say. So with a truly disappointed heart, I emailed the agent:
I wanted to be fair and professional and am choosing to first email you, instead of just going ahead with reviewing this book.
I was really excited to be part of this and hopeful that a book published by *** would be different.
Despite it having terrible reviews online, I went into this with an open mind and was disappointed by page one. The book begins by making blanket statements and false promises that the book can somehow lessen the effects Fibromyalgia has on people’s lives and that it will teach you to have control over a disease that, in reality, eliminates all of your control.
It goes on to later say that if you simply make the right choices, that you won’t have pain or limitation.
And the statement that “Fibromyalgia will change your life, but the changes aren’t dire” is an outright lie. If you were to ask my Husband and three grown children, they would disagree.
The book is deeply offensive, demeaning, diminishing and dismissive. This is exactly the false information I, like so many others, was initially fed about living with Fibromyalgia. That if I was a “good girl”; ate right, exercised, sought therapy, paced myself and reduced stress, that somehow I could manage the disease. That somehow I could have my old life back.
The realization that none of that is true has had catastrophic mental consequences for me and for countless others, including my Readers that depend on me.
I am living proof that this is misinformation: At disease onset, I worked for a Manhattan Consulting firm, I owned my own business and worked as an Educational Consultant on the side. I was continuing my college education and had three very active children. On average, I traveled twice a month. My Husband lovingly referred to me as Super Woman.
- At 45, I have now been sick for 8 years
- I am 117 pounds at 5’3 and closely watch my weight
- I strictly control my diet; eating an all organic unprocessed diet, consisting almost entirely of fruits, vegetables and healthy protein
- I exercise (lightly and when/if my body allows)
- I closely manage my stress levels
- I pace myself
- I meditate
- I drink 84 ounces of water a day
- I do not drink or smoke
- I ensure that I get enough sleep
- I meet with a Therapist regularly
- I meet with my Doctors regularly
And despite all of my strictly regimented “so called” controls:
- I have difficulty driving and often cannot
- I can no longer work
- I had to give up an over six figure salary
- I had to give up my business
- I am plagued by symptoms of this disease and spend countless days either in bed or on the couch
I began Fighting With Fibro specifically to fight back against the falsehoods that we can control our Fibromyalgia. The premise of this book only further perpetrates patients’ feelings of inadequacy and guilt that we are just too weak to overcome something we “should” be able to. For reference, most of my Readers have very similar circumstances to mine. I owe it to the people who rely upon me to continue fighting with honesty and integrity; not just for me, but for them.
If you would still like me to review the book and give my honest opinion, now knowing how I feel about it, I would still be happy to do so.
I still greatly appreciate you contacting me and giving me the opportunity to work with you.
Stacey Chapman, Fighting With Fibro
While I really did not expect a response, I had hoped for one. While I knew there wasn’t much he could say, I hoped he took my “speech” back to the Doctors who wrote the book. And while I somewhat hoped I could still interview the Authors, I was partly relieved I couldn’t. If this is what they put out, then it’s very unlikely I could do anything to change their opinions.
So my friends, easy come, easy go. I’m really sad it didn’t work out, I can’t lie. BUT, I can’t and won’t be someone who contributes to furthering info like this. It’s interesting to note, that my own Provider quickly summed it all up; so their take is if you’re a good girl and behave yourself, having Fibro is no big deal and they can cure it??? She, too, was saddened by this hospital system and said I could be called the perfect patient. I do everything I’m supposed to, see my Docs, follow all their advice and I’m still spend half my life on the couch.
I’d rather walk away taking a stance for myself and for all of you, then to give up even more of my soul by agreeing to further perpetuate damaging false promises. We’re in this together and I’m grateful to have you.