I Had the Chance to Work With Two Fibro “Experts” and Walked Away. Here’s Why…

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:

Hi *****,

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.

Sincerely,

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.

❤ Stace

Posted by

Fighting with Fibro and Living With Purpose. Mom, Wife, Blogger and animal lover. Fighting with Chronic Illness on a minute by minute basis; sometimes winning.

28 thoughts on “I Had the Chance to Work With Two Fibro “Experts” and Walked Away. Here’s Why…

  1. Stacey I’m so proud of you because not only did you stand up for yourself ; you spoke up for us all! I’m so thankful for you and all that you do for each and every person with this horrible disease that not many people nor doctors really understand. I have read some articles similar to what you are mentioning about what you read. The reality is there is no cure and while some things can help with the symptoms we experience it will never be a total cure. Whoever says anything different is just blowing smoke. They want to sell a book. It pisses me off so much. My life has turned upside down and I have also lost my wonderful salary and seen myself turn into someone I know longer recognize and people have the nerve to say: ‘ Really you have fibromyalgia? ‘ You don’t look like you have it’. If people would read up on it they’d see what it all entails and they’d stop minimizing what it is we go through. Stacey your AMAZING!
    Kudos to you for being true to yourself. That all that counts!

    Liked by 5 people

    1. Thanks so much, Sandy. I was incensed reading this book-it nearly had my blood boiling. It’s so unhealthy to project such bull, especially for people newly diagnosed. To say “the changes aren’t dire”….OMG. What on earth do they consider “dire” then?!?
      And I totally agree with you, there are some things we can do to somewhat help, but to say it doesn’t need to control us is ridiculous. That’s why, too, I went on about myself and gave personal details. I follow all their guidelines, do everything the Doctors say and still live half my life on the couch…..so it’s insulting to say it doesn’t control me. And it’s totally dismissive of my suffering. Of all of our suffering.
      It was a great and exciting opportunity and I’m super sad the way it turned out. But I won’t sell out for the chance at such opportunity. Even my Doctor and Therapist were disgusted. Moreso when I told them which hospital system it was.
      You know, it’s funny, one of the comments I hate most is “you look so good”. It goes up one side of me. What a bizarre way to feel about a compliment, right? But it’s almost insulting when I feel so bad I could cry. What a tangled web we’re ensnared in, right, Sandy??

      Liked by 2 people

      1. You are absolutely right. Just reading your post made my blood rise. It was important for you to tell them everything you experience. I know it’s hard to do that but it is necessary especially for people who need to wake up and see what fibromyalgia really feels like. You were so amazing Stacey and I send you hugs 🤗. We stand with you always! You are an Amazing Awesome Friend and Advocate! ❤️🙏🏻🙏🏻❤️🤗

        Liked by 2 people

      2. Awwww. Thank you SO much ❤️ Truly. I appreciate all of you so very much. And as angry as I was, I was also angry for all of you. Through our sharing, we know the real suffering and the true life of living with Fibro. And it certainly IS dire.
        But I know, for me, that having all of you helps so much. I now know I am not alone in what I suffer & struggle with, but I also feel less isolated. It’s been a huge Blessing in my life.

        Liked by 1 person

    2. I would like the chance to have the authors of that book live in my body for one week! Maybe then they would understand what living with this awful disease is all about. Unfortunately a lot of people will believe what this book says. They have no idea what 24/7 pain is about!

      Liked by 3 people

      1. I saw a few YouTube videos from one of the Doctors and thought the book may have some potential, but was sorely disappointed by page one. Sad. With their reach, they could do so much.

        Like

  2. Bravo! The truth, the whole truth and nothing but the truth. I am not surprised that the doctors are from a *major* hospital system. Through my journey I have come across doctors who have no clue, and at a large well know university hospital. It is pathetic.

    Thanks for having the integrity and wisdom to set the literary agent and authors straight! All of your posts are spot on, and though I don’t comment often due to my health struggles, this post deserves a standing ovation.

    You are the best!

    Liked by 3 people

    1. Thank you so much, Gail!! Your comments mean the world to me and were exactly what I had in the back of my mind as I wrote the agent. It was utterly dismissive and damaging-not only for me, but for all of you that I hear from. I know what we all live with and it’s criminal to say that Fibro isn’t dire. It’s just as dismissive to my Husband and kids who have lost and sacrificed just as much.
      Thank you so much for using your energy to comment. I am deeply honored ❤️

      Liked by 1 person

  3. Most unfortunate for the medical profession is that each case is as unique as the person who carries this weight.
    There is no one pill or regimen that will cure it for anyone and that drives the monolith health system crazy.
    Robin is an ardent stick-to-the-plan person to manage her fibro which includes an extremely restrictive diet and food prep. Yesterday “for no reason” she fell ill and needed to leave work early. I found her in bed and she felt like a truck had run her over.
    That’s the way this thing “works”. There is some ability to do everything to mitigate flareups…..but regardless, they WILL come.

    This morning she was better and was getting ready for work when I left for the office. She has a part time job because that is what is doable.

    I hope today you are at your optimum ok-ness.

    Liked by 1 person

    1. HA! I *love* that: optimum okayness!! You and Robin remind me of Bri and I (based on your comments).
      You’re so right!! It’s something the medical community cannot just throw a pill at and fix. If anything, pills just make it worse. But what you just described is so typical-despite following all the “rules”. If anything, one of the things that helped me the most was learning precisely the opposite. I cannot control it. It controls me. I just do my best to roll with that.
      And the cycle of remission/regression only proves that.
      People like Robin and I (and many Readers here) are the perfect case studies to contradict the entire premise of what they promise. If it were that easy, Fibro wouldn’t have a 30% Disability Rate.
      That’s fantastic Robin can work part time! Good for her!! I’m jealous. I think it’s good for the mind to still be able to. I hope you both have a nice weekend. Thanks for your insights!!

      Liked by 1 person

      1. I just read all your written words & commend you on all of them. I was diagnosed with fibromyalgia back in 2003 or 4. I’ve had many bouts with flare ups & relate with all the replies on your blog. About 12 years ago I started tripping over my tongue trying to say words, I didn’t realize that fibro might be the reason until you explained it. I also have depression which was inherited from my mom, so I’m on 90 mg of Cymbalta for that, meanwhile it does help some with my fibro. Now, I’m experiencing pain in my left shoulder & arm, this sucks because I’m left-handed. So, everything I try to do aggravates it. I also had a mastectomy on my left side back in 2018, so I asked my primary doctor if she would give me a script for an ultrasound on my shoulder & arm. Both my oncologist & orthopedic doctors said it was arthritis & do exercises to alleviate the pain. Wrong answer for me, arthritis doesn’t bother you 24/7 all the time. Now, it’s bothering me typing this on my cell phone, but I needed to vent out some of the pain & muscle aching I experience every day of the year. Thanks so much for your blog. May the Good Lord be with you during your journey in life.

        Liked by 2 people

      2. Ugh. I’m SO sorry for my extremely late response. I’ve been down like a ton of bricks. Thank you so much for reading my posts & comments. It’s so great you read through what other readers write!! I have found their contributions to be so, so helpful!! I’m glad you found some relief with the Cymbalta-I didn’t have any luck with it. I’m hoping, by now, you got your ultrasound. It’s so frustrating to be in so much pain and to be put off. It’s always been astounding to me to be in so much pain, you feel like you’re going to die and yet they find nothing wrong. I’m praying for you and sending you much love. I hope you’re having the most okayiest day you can ❤️

        Like

  4. “The book is deeply offensive, demeaning, diminishing and dismissive” – well done for not sugar-coating it. When given something to review like this there can be pressure, that feeling of not wanting to be totally honest but it’s so important, especially with something like this. You did good, Stace – books like this aren’t just ignorant and pathetic, they can be damaging and dangerous. It’s the lies but also the crushing of those with fibromyalgia and other conditions, the passing of blame on to things people have done or not done that have got them to this point. Because if you can undo it all by being good and getting everything perfect as per their suggestions, then it goes without saying that you must have got yourself into this mess too. But it’s okay, because once you fall in line and sort yourself out, it’ll be dandy.

    Garbage. Trying to make a quick buck by preying on the vulnerable, those desperate for answers and help.

    Caz xx

    Liked by 2 people

    1. Thanks Caz. I think it incensed me because I went through that dark time…..a time where I totally blamed myself for getting sick and for not being “strong enough” to make myself better. We all deal with enough day to day without having all that guilt and blame on top of it all.
      To think that a major hospital would further promote that ideology is criminal.
      It felt like an important opportunity to (maybe) help prevent someone else having to go through that same Hell.
      You understand it all too well, I’m sure. And you do a great job of breaking down those false narratives!!

      Like

  5. It’s so terribly disappointing to reach such tripe from supposed experts, isn’t it? With as many books and products I’ve reviewed, I’ve probably rejected 2-3 times as many. It’s so offensive to hear these lies and shows clearly that they don’t understand what we go through at all. The only “experts” I read now are those with the conditions I live with and not those who think they have a clue because they’ve seen a few in their clinic. That’s why CI bloggers like you are so important! Xx

    Liked by 1 person

    1. Wow. Good to know. I told him I wouldn’t promote the book until I read it and I’m glad now I didn’t. I had considered not saying anything at all-but it was just too damaging to at least discuss what I read without naming names. It was so shocking and disturbing to see such a huge entity pretty much print & promote the false drivel we read everywhere like Pinterest (although I do love Pinterest).
      I considered it may impact other opportunities, but ultimately, it doesn’t matter. Calling them out mattered more.
      What’s a CI Blogger? LOL…..

      Liked by 1 person

      1. LOL, Sorry. Chronic Illness blogger. And I totally agree with your point. It’s important to understand that even the “experts” don’t always have a clue about how we suffer. I also think you highlighted something even more important; even those with medical credentials often dangle false hope in order to attract customers, which is exactly what we are as patients in these for profit systems. I applaud your honesty and ethical handling of the situation. I think those who are doing good work will recognize that and not hesitate to work with you!

        Liked by 1 person

      2. Thanks so much Michelle. I keep missing these acronyms of yours-which is pretty silly of me, considering how obvious they are! LOL
        And *precisely* what you just said. I wish I had kept count from day one of all the Specialists and all the tests. It was an endless cycle of tests, waiting & painful disappointments. With one after another having me hold out hope. And that, of course, ending catastrophically with blaming myself and living guilt ridden. I was finally free when one Doc told me to give up and finally given a new perspective. We’ve all been there, I’m sure your story is similar to mine. But if we can try to stop this agenda and misinformation, maybe together, we can prevent another one of us suffering the same plight.
        I’m glad you’re back!! We missed you! Thanks Michelle!!!

        Liked by 1 person

  6. Damn. Damn it. That *big***… whatever! Good for you. I hope he takes your response back to them. He won’t. But he knows… that’s a start. Unbelievable this hogwash is still peddled to us, sickening it’s from a big medical group! If only I was good, I would be well… they can bite me, too! You should post the name. I’d like to write them a letter. Man, I’m mad! I can’t imagine how irate you must be! You stand tall, Stace! Bravo!

    Liked by 1 person

    1. Thanks so much, Kim!! You’d be stunned if I told you. And even angrier.
      I wish he had at least responded, which I understand why he didn’t. But as you just said-it would have been nice if he took it back to them. I’m hoping he has a difficult time finding anyone to positively review it. Then, at least, it would be evident how far off base they are. We all need to stick together!!

      Liked by 1 person

  7. I don’t know you, but I feel like I know you. lol Well said! My life’s course has been similar. I married at 29 after starting a great full-time job with the USAF. I wanted to have children and went my OBGYN sometime around age 34-35 to try the first fertility rounds that come before things like IVF. That’s when I started having unreal pain that I thought was a UTI. I was diagnosed with interstitial cystitis, and from there my migraines that I’ve had since age 12 increased 10-fold. Horrible, relentless pain. I was diagnosed with TMJ disorder and fibromyalgia. I didn’t know which of the co-morbid conditions to treat. It was like I was a human whack-a-mole game. Doctors I saw threw so many drug combinations at the problem. I felt like a failure every time I’d become worse from medication overload. I’m sensitive to a lot of the medications for all of those illnesses. I had one neurologist thank me for being such a nice patient once without explaining she was sending me back to a pain management specialist. I found out when I tried to refill my medication. I too would have been so excited to read a book from a reputable source about this dang illness. Thank you for being the Mighty advocate you are for us in Fibro-land.

    Liked by 1 person

    1. Hi Susan, I’m so sorry it took so long to respond…..I couldn’t get on my feet!! Thanks for reading and commenting. I know, it’s crazy, isn’t it, how much our lives can align sometimes? I’ve often said the same thing, trying to get a handle on anything is like playing whack a mole. It’s awful. I never know which condition is causing which symptom. Then we try to treat one condition and create a whole different new one. It’s enough to drive you nuts!!!
      I think that’s one of the most frustrating parts of the book (and living like this in general); no matter what you do or how hard you try, you fail. And each failure hurts worse than the one before. I have struggled tremendously with the guilt of getting sick and not being to make myself well……it has fundamentally changed every piece of my life. I call *that* dire. These days, I only rely on pain meds and migraine aborts. We don’t try anything new to prevent things anymore…..I just recently tried Accupuncture, hoping that would help. But after 5 sessions, it hasn’t.
      It’s really great to meet you. Thanks so much for sharing your story ❤️

      Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s