Monday, April 4, 2011

The Court Of Public Opinion

I was watching an episode of Law & Order the other night and there was a scene where they drag in a very popular and quite controversial blogger, collaring him for committing a crime. See he had quite a few virtual "enemies" and one had turned up dead. He looked at the cops and blatantly laughed in their faces. He said the negative press was almost better than the positive, it brought him tons of new readers. For once they got to his blog, checking out this rumored monster, they discovered he was not at all what he had been set up to be. He happily proclaimed this was quite a contributing factor in his popularity and expanding his audience. I marveled at his attitude and mentally flogged myself for all the pain and "taking it personally" I have indulged in every time controversy or hate has come my way. I also decided then and there I was going to take his attitude and adopt it as my new child. Or the writers of Law & Order's attitude, as he was just the actor portraying what they had written. In the 8 months I have been blogging, which led to The Fibromyalgia Crusade and the selling of awareness merchandise, I have had quite a few shit-slingers flinging it smack-dab in the middle of my direction. In fact, I had a nice little tango with one just last week.

I did some probing and as far as I can tell there is no official "I Hate Leah Tyler" fan page, yet. But I discovered plenty of "bad press" all over the place. Pages and pages written taking innocent 3-line postings and ripping them apart word by word, with a clearly mentally ill mind contorting each statement to fit into their warped mission to discredit me. Pleas to boycott my products because I am swindling sick people out of their badly needed money so I can pile it on top of my abundant riches. Accusations that I am not honest or doing enough for Fibromyalgia awareness or not focusing my efforts in the direction they thought I should. I was not at all surprised the nature of all this hate dwindled down to sources totaling less than the fingers on one hand. Sources that have come at me publicly but I shut down, for my mission, my quest for Fibromyalgia awareness is not about just one person. The Fibromyalgia Fun House is not a crazy person dumping ground, a place to spew hate and stir up a bee hive of chaos, causing stress to its members that are truly there for support and understanding, not pining for attention. I myself am not a human punching bag with which one can funnel their anger through, blaming their lifetime of injustices and problems on. And all of this discovery took me on a mental journey, beginning with the 28 year-old girl that became sick one day and never got better, and the many steps that have been taken to form her into the 34 year-old woman that somehow feels competent and strong enough to rally up the troops and march the reality of living with Fibromyalgia into a new day.

The court of public opinion is such a harsh place, as those with this diagnosed-yet-cause-unconfirmed illness know first hand. Everyone is a doctor. Everyone knows someone who had Fibromyalgia and got better from (insert potion, attitude change, diet, etc.). And then there is my all time favorite, I don't believe in Fibromyalgia. What we endure on a daily basis, just trying to win the approval to be sick from the world at large, our family, friends, doctors and neighbors, would not be tolerated if it was racially or religiously or gender targeted. Yet somehow on top of our debilitating illness we must also contend with nastiness arrows shooting at us from every direction. There is a significant amount of "toughening up" we all must rise to in order to survive life with Fibromyalgia. Pretty hard when your adrenals are shot and simply having the TV on and someone talking to you at the same times sends you into a stressed out meltdown. But it is a very necessary step to begin the process of learning how to live a new kind of life, a life with the Fibro beast managed

But just for clarity's sake I want to take a moment to set a few things straight. The Fibromyalgia Crusade is a patient united awareness campaign. This involves taking personal responsibility for the quality of your life, joining up with other patients for support, refusing to be treated like shit by anyone in your life because they do not understand your illness and spreading awareness by speaking the truth. Not shying away from Fibro but letting those you come into contact with know what it is and how difficult it makes living life. The Fibromyalgia Crusade has never and will never cost money to become a part of. Purchasing the tee shirts and awareness bands and other items that will be coming is optional and in no way a requirement to play at our party. They simply spread awareness and give us a feeling of connectedness to each other. We are small and young, just getting started. There will be many more components to come in due time. Each person can take part in what they are comfortable with, and should not feel pressure to jump through hoops to prove the authenticity of their commitment to spreading Fibromyalgia awareness. We do not exist to aggravate your symptoms or diminish your self-worth. We are here to let the world know Fibromyalgia is real, a real pain, and we are suffering and enduring the best we can but need help, need answers, need to get better! And really need to be taken seriously. So as you learn how to handle your haters, I am learning how to handle mine. And strangely enough, I am looking forward to the I Hate Leah Tyler fan page, for think of all the interest that will send our way!

Thanks for joining,


  1. Well said Leah! Props to you for spelling it out plainly. Someone will probably try to turn this around too though lol. I'm glad you do what you do. It's great to see someone who can encourage and help so many people.
    Hugs, spoons and lilacs to you!

  2. I just started my own blog, Leah, and this post couldn't have come at a better time. You managed to alleviate any and all angst I had regarding "hate mail" or comments from readers who may not be supportive of my efforts.

    Leah, you have accomplished so much in a relatively short amount of time. I commend you for your efforts, your commitment ... for reaching out to the Fibromyalgia community and starting The Fibromyalgia Crusade.

  3. Wow Leah, I loved this POST!!!
    I think you should submit this post to the NY Times and other major press. You write candidly and to the point.
    Thank You for your efforts in spreading the The Fibromyalgia Crusade!!!

  4. Dang girl I've got chills. Right on for your attitude regarding the haters, most of whom probably are ignorant about fibro in general or just like to complain. Ah the complainers of life. Needing to find fault with EVERY thing under the sun. This Crusade is marching on and NO ONE is gonna hold us back... oh dare that they shall try... ;)

  5. My daughter has fibromyalgia upon other diseases that riddler her body. She knows all about "haters". I have found from watching from the sidelines that the biggest "haters" are others with fibromyalgia. Actually my daughter was verbually attacked my members of a fibromyalgia group. Unjustly. Leah, you should talk to my daughter about haters, you two have a lot in common. Gentle Mom hugs.

  6. Hi Leah,just wanted to say I really enjoy reading your blogs...they motivate me some days,make me smile and just make me realize I'm not in this alone! Thanks for sharing your thoughts,your heart and soul.Hope you have a lilac day!

  7. Leah, just keep doing what you are doing, greatness all starts somewhere. I have wanted to yell over a blow-horn to the world many of the issues you have written about, but keep myself too busy to get started on my journey of helping others. Don't let the haters get you down, just do the right thing and you can be at peace with the decisions you make. If you look at ProHealth, he started out as something similar, but he makes tons of money and his living off of selling expensive supplements that didn't use to have any scientific support to back it up, it now has some, but my point is that he sells products that patients can easily buy from local drug store for less or a perscription from their doctor. The caveat is that he does donate a percentage of his earnings towards research and has formed a 501 C non-profit status, maybe that is the direction you might consider? Either way, you core purpose is to help others through your own struggles and I applaud you for the courage to do it. Maybe I will start the book I have been wanting to write now for 4 years.

    All my best.

    Shirleen D. (CA)