When Did the CFS & Fibro Community Become So Ungrateful?

I have been noticing a growing trend lately among CFS & Fibromyalgia communities where discontent and drama are becoming as regular as if I were watching a soap opera on television.  What is happening to our once united community that stood together because we had the one thing in common that no one else in the outside world can possibly understand? 

It really saddens my heart to see that what little energy there is to be spared among those of some with CFS & Fibromyalgia is being spent criticizing, judging, bullying and belittling the attempts of the ones who are putting our lives out here to help the chronic illness community. 

I wasn’t going to post anything about what has been going on with my own experience but I recently read about someone else online who has been working extremely hard for the Fibromyalgia community, putting her own time, money and efforts into the cause and she is being bullied like crazy.  She’s not being bullied by just anyone, however.  She is being bullied and harrassed by people who are coming to her site daily for help and guidance with their illnesse, yet sending her messages harrassing her about how she is running her site, and because she sells items on her website that are related to her cause. 

I have been going through the same thing by people who are accusing me of spam because I post about the Fighting Fatigue Fighting Back Challenge, which is the website where I am trying to create a huge national awareness campaign for Fibro, CFS & other chronic illnesses.  The campaign is to have people submit their stories, poems, and art work, etc. of how they are surviving and thriving with chronic illness. 

THIS IS A GOOD THING – IT IS A POWERFUL THING.  I AM NOT MAKING MONEY OFF OF THIS, BUT I AM BEING SENT NASTY MESSAGES AND BEING ACCUSED OF BEING A SPAMMER AND BEING CALLED AWFUL THINGS BY THE CFS & FIBROMYALGIA COMMUNITY BECAUSE I AM TRYING TO GET THIS MESSAGE OUT THERE.

Here’s the big problem that I have.  People look to sites like mine and the one I mentioned above for help, but as soon as they see something that resembles even the smallest bit of marketing or publicity, they assume that we are some kind of scammer or just doing this to make money. 

Any of us who run sites like this put far more of our own money into these sites than what we ever make back out of them because our goal is not to get rich – our goal is to help people.  For some people, they need to try and make a little income from their sites and there is nothing wrong with that.  They are providing a service, after all, so get over it.

I went into this Fighting Back Challenge with my hopes extremely high and with such high expectations and I refuse to let a few jerks out there who would rather wallow in their own self-pity than try to help make a difference ruin my campaign and ruin the message of what Fighting Fatigue and I stand for. 

For those who are bitter and angry about their illnesses – you are directing your anger toward the wrong people.  We are the ones who are trying to help.  We are the ones who have not turned our backs on you, remember that.

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Comments

  1. I totally agree. I have noticed the same thing and to be hones have been quite stunned by it. Thank you for stepping up and saying what needed to be said.

  2. Thank you Sandy for your blog. I have encountered the same occasionally in our work with the ME/CFS Worldwide Patient Alliance. We are raising money to do advertising and publicity about our horrible situation, in an attempt to get the government to take notice and increase spending for biomedical research. We are all just patients who are mad as hel* and don’t want to take it anymore. We are not making money. I’m on disability and am fortunate enough that my husband has a job right now.

    I also agree that for those bloggers that offer donations, I believe that’s just to help them survive. So many are in such dire straights…I wish I could give to all of them.

    All patient efforts ideally should be linked and publicized by the other. Not only does it bring attention to our cause, but gets picked up by the google bots and let’s hope they are watching…hehe.

    Thank you Sandy for your efforts!

    Karen Ravitz
    http://www.mcwpa.org

  3. Danease Gresch says:

    So sorry you are getting harassed by the very people who should be grateful for these websites and FB pages. How could they even think the Fighting Back Challenge put money in your pocket? When I first saw the challenge that never even crossed my mind.

    Sandy I have begun to see a lot of the folks who deal with FMS and CFS on a daily basis and who have become so used to complaining about their symptoms that it has become a part of them. It seems they don’t want real help but they only want to complain. It almost appears that if they don’t have anything to complain about anymore, their lives are over. They wouldn’t know what to do if they did suddenly find treatments that really helped them and they felt better. It’s as if they are afraid to feel better. Personally, I don’t get that. If I could only get slight relief, I would jump for joy.

    I have tried to help people in the past who just don’t seem to want the help. They are happier wallowing in self pity. I’ve taken everyone’s ideas for treatment they have used and was grateful for it. I know full well, that it may not help me since we are all different and our symptoms can be very different. But if I don’t try it, I may be missing an important element that will help me feel better.

    What I would say to anyone suffering from any of these chronic illnesses – be grateful for all of these sites that give us updates in new treatments and be grateful for friends and others who may have just the right treatment that can put you on the road to recovery. They are only trying to help you and if it doesn’t help – thank them anyway for their concern. We have to all pull together folks to find treatments and cures for these dreadful illnesses that rob us of normal lives.

  4. Paula Gonzalez says:

    I sometimes wonder why some folks can be so bitter to others. I appreicate all the work that you and others are doing to find ways to make fibromyalgia less painful today and hopefully a cure for fibromyalgia in the future.

  5. I am sad to hear that you have been so bullied. For my part, when I feel that a person who’s blogs/tweets I follow become too mired in marketing, I will simply stop following. I personally don’t feel you have strayed into marketing.
    Many people in the fibro community that have garnered a large following and are searching for an income source have slowly replaced what was once helpful content with self promotion. I won’t name names, but I will give a few examples.
    One fibro fighter I followed on facebook started with gathering followers with FM, she filled her status updates with positive quotes, and asked questions that helped us all see we were not alone. Then, about once every 2 months she would mention a fibro related item in her easy store. Slowly it became once a month, then every week, and finally daily. None of the fibro content was there, there was only jewelry sales.
    Another fibromite began by trying to spread her unique story to the world on her website. The website linked to facebook and her twitter account. The website began to feature ads (as a way to pay for the webspace) Suddenly what was one ad became a rotating header and footer,and depending on the section you visited a column at the side as well as trackback links to amazon ( where she would receive a %of the profits). Somewhere in there she created a store full of tshirts and mugs emblazoned with the clever things her readers/supporters had said. Then her tweets began to be full of ads promoting lingerie, yogurt, and celebrity jewelry. Those tweets are often repeated during a day, sometimes back to back.
    It’s a lot of noise.
    Which is my long way of saying you may not be guilty, but others have been. When everything we read draws energy we feel burned when help is replaced with marketing. For many sponsored tweets/posts/etc are a sort of noise, and too much noise triggers pain. We want community, not commerce. Sorry if we get reactionary towards others and take it out on you, we’ve learned the hard way that we need to stand up for ourselves. While we may not always be polite or eloquent, we too only want to protect our community from abuses. We are grateful for all those who use their energy and understanding to foster a supportive community. We don’t begrudge fibromites an income, we just don’t like to be tricked or preyed upon.

  6. I just stumbled upon this post, and feel compelled to reply. I’m the owner of fibroduck.com , it’s been running since September 1st 2009.

    I have to agree with much that has been said both here and in the comments. Like many of you I’ve watched the FM and ME community tear itself apart and crumble. I’ve no idea why it begun (and have no desire to know) I just wish as a community, we’d channel our energy into raising awareness instead of wasting it on fighting.

    I have also noticed the widening divide between the FM and ME communities, which saddens me, when so many of us suffer with both, why would anyone wish to segregate? Now more than ever, with the attacks on disabled people from government and press alike, are we not standing shoulder to shoulder in unity?

    For all I know the article could refer to my (or anyone’s) website, I’m female, running a huge awareness project with a shop attached. However it’s important to point out why that system is in place.

    We sell other products in our shop to cover our huge Paypal fee’s. I give out the ducks free (except for postage) Paypal now takes a minimum of twenty five pence per duck order, and the more you order the more they take.

    I am then faced with a dilemma, I either pass that fee on and start charging for the ducks, start running advertising, or I add a shop. Not wanting loads of adverts cluttering up the site, nor wanting to charge for ducks, I opted to sell other products.

    On our facebook fans page I’ve taken the decision to close our wall, this helps cut out spam and troll postings. We do occasionally get people drop by to cause problems, but it’s quickly dealt with. I hold a zero tolerance policy for trolls because we’re a campaign that’s based on fun first and foremost.

    I’ve also learnt that no matter what you do or don’t do, someone, somewhere will always complain, we can’t possibly please everybody. I’m not naive enough to think that people aren’t complaining about me or what I do, but I am confident enough in what I’m doing and where I’m going.

    Speaking as an FM and ME sufferer, rather than website owner, I very rarely visit groups, pages or message boards anymore. I have very few fellow sufferers on my private accounts, that way most of the fighting goes right over my head.

    I truly hope that whatever’s dividing our communities, resolves itself quickly. Like your site by the way, have bookmarked you :)

    Jamie

    • Fibroduck – I don’t see anything wrong with having a product and a service as your website provides or any of these do. I was not referring to your site, by the way, but it breaks my heart to hear that someone has to shut down a FM/CFS community. Many of us have poured our lives, blood, sweat and tears into these causes and to have those things crumble down around us because of stupid people is just wrong.

  7. Hey no worries I didn’t take any offence, just wanted to point out to non site owners why shops on sites are needed :)

    It’s not often I make public comments, but I feel the same as you about all the infighting, All that wasted energy could go towards forcing positive change in the right places. There’s so much more we could achieve if only we stood together and stopped fighting.

    I would advise site owners to ignore the negativity, keep your head down, just keep doing what you do, it’s all for the greater good of raising awareness. I applaud anyone running awareness campaigns, I know how much work goes in to it all :)

  8. I read this post and got worried! I have monetized by blog, like many other bloggers have done, as a way to cover my blogging expenses. I guess I could have added a “donate” button, but felt it might be better to garner a bit of income from purchases that were already being made.

    I realize that some people will be turned off by monetization, but I try to counter that with helpful articles for people living with chronic illness. I am not familiar with the sites you have been referring too, but I wish I was so I could go there and support them against this seemingly unfair criticism.

    • Hi Selena – I know it is so unfair – there is nothing wrong with monetizing the blogs that we have. What a lot of these people who are criticizing don’t realize is that many people who have these sites can’t work and their sites are their jobs. For a lot of us, we monetize certain things to cover some of our expenses and it shouldn’t really matter if we do or don’t. We are all providing a service and helping people and should not be harrassed, condemned and slandered in the process. These people need to get a grip and if they don’t like it just stay off the Internet. That’s my opinion. LOL

  9. These are just my opinions, feel free to disagree
    You are correct in saying that we who come to sites like yours are looking for help. Just like we assume when you leave the comment section you are also looking for help. That is what community is about right? Sharing in a dialogue? Helping each other.
    You see that word-help? Not marketing, help.
    You and all other bloggers that want to ‘help’ need to stop thinking that what you do is a service to be paid for. And in your own words ” get over it” + “get a grip and if they don’t like it just stay off the Internet. That’s my opinion. LOL”
    As JR said “we want community, not commerce” + “we don’t begrudge fibromites an income”

    So yes point out the increasing divide in the community, but rather than “condemn and slander” those who disagree with you and try to cover up your condemnation with a LOL maybe just maybe try to understand what they are saying.
    FYI telling people who disagree to get a grip and get off the Internet isn’t a move towards community, it feeds the trend of discontent and drama.
    Try to Remember those people who are criticizing are likely to be unable to work, and possibly find it a bit ridiculous to be asked to fund everyone else’s efforts when they may not be able to support their own. Just because one isn’t speaking in platitudes and farting rainbows does not mean they are wallowing in self pity or afraid of a cure.
    You have a blog, that doesn’t make you an Internet god, an authority, or someone worthy of either praise or funding. Constant self promotion of your efforts can be interpreted as ego and/or a sales pitch. Don’t think that interest in one of your efforts equals interest in your other efforts. Don’t equate a different opinion as drama or a breakdown of community (even if you don’t like it when people disagree with you.)

    Could have been a great topic- you let other bloggers know they are not alone if they get negative feedback, you let readers know they are not alone in feeling frustrated and used by perpetual monetizing and self promotion methods. Other bloggers were able to relate why they monetize, readers were able to express their POV . Unfortunately, you told those who do not understand they aren’t welcome as part of the Internet community. That’s a disservice to the community.
    All we want is to be heard. dont bully and belittle us because we want content not commodity. We aren’t stupid, don’t treat us as such. Of course a blogger with FMS or ME/CFS may want an income (after all that’s just one more thing we understand about life with chronic illness). We don’t care if you want to monetize your efforts. We do care if you feel belittled. We do care if your motives have moved from helping us to capitalizing on us. (wouldn’t you want to know if you were getting advice from someone who was being paid to promote something as opposed to truly believing in it?). We do see if those who claim to want to help will only do so on their terms. We know that even though we may not have been ill as long, our feelings are just as valid as those who who have been on this path longer.
    The chronic illness community is both large and diverse. From time to time we may disagree. that does not mean the community is crumbling. If those who see themselves as community leaders judge others, get angry and then use their platforms to belittle the concerns of others they are sewing the seeds of bitterness and discontent that will destroy the bonds we do share

    Sandy- I hope you can see that my comments are not meant as an attack.I know you are trying to protect yourself and other bloggers. I felt it was important to spend my energy pointing out what some chronic illness bloggers seem to have forgotten- readers are only going to read if there is content that interests them.

    Fibroduck- I think your explanation here was clearer than what is on your site, until now it never made sense that you charged for a logo others would use to promote your program

    Selena- I had never been to your site, cant wait to have a chance to look it over I went only to look at how you monetized your blog. My first impression is positive! I can’t opine about post contents, regarding is monetizing usurping content, no It isn’t overwhelming, it’s not flashing, I can see your posts without having to search around a giant billboard, plus by placing your Mary Kay link below your followers may not be considered ‘optimal product placement’ it does show that you care more about what you are trying to say than what you hope to earn.

    • Hi Nellie – Point taken and I see where you are coming from. I shouldn’t have worded my comment as I did and I apologize for sounding so harsh. I think my frustration comes from the fact that over the past 5 years I myself have done very little in the way of promotion compared to many sites out there but the attacks come so often it is as if I am doing something wrong – when I know that I am not. The only thing I have on my website are the Google ads and I do have links to Amazon books that relate to FM, CFS & IC & the other illnesses discussed on here. If I were on a site that had nothing but items for sale and no content, and it was supposed to be a CFS/FM support site, I would be leary of it as well. Don’t get me wrong. I know there are people out there who exploit this situation just as much as others are exploited. I have never thought of myself as anything like an “Internet God” just because I have a site. I do, however, feel that I have put my life out there with all of my fears, emotions and realities to help others and should not be belittled and harrassed because I have Google ads on the side of my website. It costs money to run websites, it costs money to do all of these things that many of us don’t have because we can’t work at all or like me, can’t work full-time. I do what I do to help others and it angers me that the people who criticize are the ones who – a.) would never put their names to their comments or hate emails; b.) would never take the time to try to do what many of us are doing even though we are as sick as we are but judge on what they THINK we are doing. My comment about “staying off the Internet” was meant for those who are being hypocrites by coming to our sites, participating in and asking for help, but then turning around and driving the nail in by sending the hate emails & anonymous comments. Don’t they think we can tell when something comes from the same computer whether there is a name attached to it or not? These are the people who are ruining the community – being two-faced. Not me, not the ones of us who are trying to do something to help. I thank you for calling me out on my comment and after re-reading it, I see where I was harsh and I was not being fair and could have posted something nicer and in a more respectful fashion. I respect you for very much for saying what would be hard for a lot of people to say. Thank you. No hard feelings I hope!

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