Tuesday, March 22, 2011

Why Don't Any Celebrities Have Fibromyalgia?

I had a strange and riveting dream the other night. When I woke from it I was confused and unsure what it meant. Maybe I had been watching Project Runway recently or something. But anyway, I was at a small little store, very posh and high end, with Heidi Klum and her business manager. Ms. Klum was launching a skincare or cosmetic line and they were trying to recruit me for a sales manager position at counter. I was torn, for this obviously represented a fabulous opportunity, while at the same time the panic and dread of going back into cosmetics was overwhelming. I have laid down that part of my life and moved on to something new. This blog, this cause, this. So I explained I no longer was a makeup artist or retail executive, I created an awareness campaign for Fibromyalgia, suffered from the debilitating condition myself, and was pursuing a career as a writer. Heidi turned to look right at me. In her clipped German accent she said, "You have Fibromyalgia? Don't worry dear, we will get you over that real quick." When I woke up I reviewed the dream in vivid detail, trying to make heads or tails of it. Dreaming is your unconscious filtering through your conscious, in my opinion. So what did it mean? Where had it come from? What was I to glean from this? 

And then I got to wondering why so many people have Fibromyalgia, yet we never hear of celebrities having it. Part of me wondered if it was simply access. A doctor did not tell them nothing was wrong with them when the initial round of tests came back clean. Or if so, they consulted a different doctor. They did not just settle with being told they were "just depressed" and dismissed with a prescription for anti-depressants as far too many of us are. There were more tests taken, they dug a little deeper, specialists were consulted. Or perhaps it's the wealthy who can afford functional medicine*, which is what might be needed to get control of a chronic non-terminal pain condition. They struggle for a short period and then recover enough to resume somewhat normal living. So I did a little research. The only three I could come up with that actually used the word "Fibromyalgia" were the singer Sinead O'Connor, the soap star Susan Flannery and a singer from the '60's named Rosie Hamlin I was not sure I had never heard of. Everyone else used some variation of the term "chronic pain condition". George Clooney had spinal fluid coming out of his nose at one point, Marcia Cross suffers from migraines, Paula Abdul was rumored but again that "chronic pain condition", and an addiction to prescription meds, was all I could really find out about her. Oh and a plethora of pro-football players suffer from some pain ailment or another. To that I wanted to say no shit Sherlock

Then I came across a group that wanted to just pick a celebrity spokesperson to get the word out. That is not how it works, I thought to myself. The celebrity has to have the ailment to be a spokesperson for it. You don't just pick someone out of the clear blue because you feel like it and petition them to take up our cause! Do you? Maybe you do. Susan G. Koman's sister wasn't a breast cancer survivor herself, was she? So what to do, what to do to get the word out... A celebrity spokesperson would be wonderful publicity, but there just don't seem to be many that have it. Or do they too keep quiet about it because it is still so disrespected, medically and socially? Would it screw up their professional or personal lives like it does ours?

Well I can tell you from my end over here I am doing as much as I can. And I see a whole lot of other people proudly supporting the cause with their Fibromyalgia Crusade bands and tee shirts. People are giving out our postcard left and right. I even have some friends who have their doctors giving them out! People that were silent or embarrassed or insecure about having Fibromyalgia are now speaking up, demanding collaboration and results from their doctor, forgetting about the people that don't offer compassion and support. That is HUGE! I am upgrading our website, still gonna get myself on youtube one of these days and yes, we are going to harass the government with a letter campaign as soon as I can get to it. So I guess we are doing the best we can. As the Fun House reached 2,000 strong and this blog nears its 50,000th hit, we are doing a bit more than the best we can, we are kicking some Fibro booty!

Thanks for joining,
Leah

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*Functional medicine is personalized medicine that deals with primary prevention and underlying causes instead of symptoms for serious chronic disease. It is a science-based field of health care. Click this link for more information.

26 comments:

  1. Cher has Chronic Fatigue Syndrome,as does soccer player, Michele Akers...Fibromyalgia? Your right, you don't hear that WORD. I am willing to bet that many celebrities do, with stress being a large factor!

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  2. There used to be the same problem with celebrities and Endometriosis... now all of the sudden they are some coming out with some of them who are super busy and act as if the disease is nothing... so to me its not comforting when certain people come out(because we all have different levels of pain) and they act like its been a rough road for them but there are cures, and you can easily stay fit..etc. Its irritating, but I agree they shouldnt be picking some random name out of a hat to talk about things they dont know about. But when they have their conditions under control they also shouldnt be minimizing it for the rest of us who dont have chefs, nannies, personal trainers, assistants,etc. If we all had access to those things, we would be able to do much more too!

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  3. Actress A.J. Langer was on the cover of the very first issue of Fibromyalgia Aware magazine that I ever read.

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  4. A celebrity does not have to have an ailment to become a spokesperson for it - lots of celebrities take up causes that they support but don't actually experience themselves. Some have stated they have a family member or friend with the ailment; but, I've seen some that just state how many suffer with it and other details.
    You absolutely can just pick one out of a hat and request their support. I think it's a great idea.

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  5. I have noticed on multiple prime time television dramas over the years that whenever fibromyalgia was mentioned, it was in a disparaging way or dismissed as unimportant. I don't think it is yet "cool" for a famous person to admit they have it for fear of being passed up for a choice role as it may be assumed they will not be up to the task.

    Michael J. Fox hid his Parkinson's for quite awhile, and Montel Williams hid his MS. They went public and wrote books about their experiences only after threats of media exposure and/or they became so symptomatic that the stress of secrecy outweighed the risk of disclosure. I do find it interesting that when a celebrity has cancer, they are always described as being brave. But when someone like Kathleen Turner, who has rheumatoid arthritis, gets back into acting, all people seem to notice is how much weight she gained from being on high dose prednisone.

    I suspect there probably are celebrities with fibromyalgia. And maybe they will come out and say so when they decide it isn't a risk to their career.

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  6. "Cher says she was cured of chronic fatigue when she found a doctor who prescribed a regimen of homeopathic remedies--herbs, acupuncture and oxygen therapy"

    I sure would like to know, and so would everyone else who suffers..what remedies exactly...she needs to share this with the rest of us. I have a hard time believing that she had it at all.

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  7. Janeane Garofalo has fibromyalgia:
    http://www.youtube.com/watch?v=qna1Derz-nY

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  8. I really don't know that Cher had it, she "got over it" so quickly and we know there's no cure... but i also hate to say "You don't have this", since i fought (until i realized it was pointless and wasting energy better used for more edifying things!) for years and years to be believed. AJ Langer was very much a face of FM for a while, but she seems to be better. It sadly does help when someone famous has the illness - my bro has been eplipeptic for 30 years and is finally now calling it "My Orphaned Disease". We all need help, and it's unfortunate we sort of need celebs, but i wish a really loud one would get really loud about getting us some real research! :)

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  9. I recently saw an article about celebrities with fibromyalgia....what I found noteworthy was that most of them were actors who had small recurring roles or who had "retired" from show business due to their illness. I finished the article feeling depressed...apparently fibro puts the brakes on one's career for everybody, even celebrities.

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  10. Hey Leah...Michael Jackson had Lupus(which many of us knew already), but he also had Fibromyalgia... He was always a hero to me, from the time I was a little girl & still is...it hurt him a LOT & you can imagine what the stress of the accusations & court appearances did to him...I don't know how he did it....any of it...

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  11. Hi Leah. Enjoy your blog. Have had fibro for 20 years...
    The celebs don't say they have it cuz they have the
    MONEY to get the things that help it! They have chefs
    To prepare fresh foods. Can get any supplement etc.
    Vitamin B12 shots to boost their energy or anything else
    They want to try. They can get massage, acupuncture,
    Chiropractic care and the list goes on. Thanks for the
    Chronicle.

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    1. Hi Leah- I agree with so many of the above. The celebrities have the money and means to be able to have all the types of treatment they want with no insurance co. restrictions saying they are only allowed so many treatment per month or year. The same goes for celebrities getting to the bottom of Fibromyalgia pain. The rest of us must go through proper channels and it takes a long time, whereas celebrities get fast- tracked and to the best doctors in their field. We need one of these celebrities, who is very well known and well liked by the public, to get our message out there. I have had Fibro. for 15 years and have yet to see a well known and well recognized celebrity out there fighting for our cause. Not a day goes by that I am pain free. Constant pain that never ceases. Try that one on for size. I'll gladly get up on stage or at a podium and talk about Fibro. till the cows come home... but no one knows my name. Maybe we should change that and have a real person be the spokesperson for a real disease!!!! Jeanie

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  12. A blurb from Third Age.Com notes:

    Frances Winfield Bremer

    Frances Winfield Bremer, the wife of Ambassador L. Paul Bremer III, was diagnosed with fibromyalgia 28 years ago. In 2007, she was declared the official spokesperson for the chronic disorder by the National Fibromyalgia Association. She and her husband hope to bring awareness to the organization on an international level by making joint media appearances, as well as, appearing on the cover of Fibromyalgia Aware magazine to help motivate more people into finding a cure.
    Frances Winfield Bremer
    Frances Winfield Bremer, the wife of Ambassador L. Paul Bremer III, was diagnosed with fibromyalgia 28 years ago. In 2007, she was declared the official spokesperson for the chronic disorder by the National Fibromyalgia Association. She and her husband hope to bring awareness to the organization on an international level by making joint media appearances, as well as, appearing on the cover of Fibromyalgia Aware magazine to help motivate more people into finding a cure.

    Cheryl

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  13. I also tried googling 'celebrities with fibro' shortly after I was diagnosed and found precious few. Certainly the theory that established celebrities who get the FM diagnosis and hide the condition, or play it down-not referring to the term 'Fibromyalgia' etc. do so because of lack of respect or understanding of the illness or the fear that public knowledge will damage their careers has a lot of credibility, but isnt the reason why you don't hear of many celebrities with fibro similar to the reasons behind the dearth of studies on pregnant women with fibro? i.e. -that we dont have a life. We end up having to reduce or give up working + so are prevented from becoming successful in the first place, therefore there are very few people with FM who end up as celebrities. Yes of course there will be plenty of mums living with fibro reading this, as well as people who hold down jobs whilst enduring the condition, but if you get diagnosed before you've embarked on a career or found a life partner, then its extremely difficult to get people to understand your condition and accept you professionally or personally. It would help if we had celebrity spokenpersons to stand up and be counted and change the perception of the disease but for reasons already discussed, they're conspicuous by their abscence. What we really need is more doctors to come down with the condition, which sounds harsh, but it's the only way many of them will understand what we're all trying to tell them, all the social and financial implications and limitations on our lives. Only then will Fibro research be taken seriously when doctors accept that sufferers want more than a half-life, subsisting beneath this excruciating, debilitating condition.

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    1. DjinnGin, your post really resonated for me.

      "We end up having to reduce or give up working + so are prevented from becoming successful in the first place, therefore there are very few people with FM who end up as celebrities."

      I don't want to think this way, but I confess that it was the first thing that occurred to me.

      "What we really need is more doctors to come down with the condition, which sounds harsh, but it's the only way many of them will understand what we're all trying to tell them, all the social and financial implications and limitations on our lives."

      And I've thought this every time I watched a doctor's eyes glaze over...

      I've had it my whole life. It relapses and remits, so I have periods (about 3 years at a time - still with some pain, but much less - totally manageable) of incredible energy, fitness and productivity, then I burn out. I'm just starting to recover from my 2009 crash. Worst attack ever. I remain, however, stubbornly, relentlessly positive. (One up side is that I finally admitted to what was happening instead of being just bewildered and frightened by each progressively worsening attack.)

      One can accomplish a lot in three years, but sustaining and building any successful career becomes very challenging faced with this loss of momentum. I know I'm lucky to get those fabulous stretches of 'normal' time. Normal for some, heaven for me.

      Usually I couldn't care less about celebrities, but if they are in a position to increase awareness and understanding it becomes a responsibility. It will happen. Heck, I was in shame and denial for 40 years. Some of them probably are too, right? More great spokespeople will come along soon, I'm sure.

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  14. Suzanne Somers has an astonishing network of forward thinking doctors. I wish someone could get to her about this disease and see if she could find one of her superstar doctors who had some ideas about how to manage it.

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  15. Another comment. I was doing some research on the ketamine studies at Drexel University and who should appear but a doctor, in his LAST YEAR OF RESIDENCY, Jeff Johnson, who had ketamine treatments and said he felt better. He had to give up (hopefully postpone) his residency. But he said that while he was making rounds in the hospital the mention of fibromyalgia caused nothing but derisive giggles from the crew doing rounds. He looked miserable and ashamed of himself. I hate that he has it, but he does and had the courage to go on a popular website and admit it. Kudos. His wife is a practicing pediatrician. So..hopefully one at a time.

    Now my first pain doctor here in Columbia, SC claims sincerely that he HAD it and CURED himself. We did a lot of TENS work. He became furiously angry after a year when I admitted that I did not feel any lessening of my pain or fatigue and we mutually agreed to "break up." At the same time he is overflowing with patients wanting that hope, that hope, that desperate hope.

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  16. Hi, I just saw this post, and thought that you might be interesting in my post about celebrities with fibromyalgia: http://livinglifewithfms.blogspot.com/2012/04/celebrities-with-fibromyalgia.html

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  17. There's probably not a lot of celebrities that have it because aspiring stars have to really push themselves to make it. I was majoring in fashion design, top of my class, promising career on the horizon.... I couldn't force myself to push as hard as other classmates. After driving off the road during a Chronic Fatigue (CFS) attack (Not knowing I had that as well as Fibromyalsia FMS) it was a downward spiral of pain and horrible symptoms, doctor to doctor, finally 7 years later I was diagnosed with FMS and CFS. I'm on pain management, but even now there are days I can barely get out of bed the pain is so bad. Sure there are good days, but not like before and if I over do it one day I have 3-4 days of pain to pay for it. You can't plan any type of life around this.

    I work part time now, I couldn't even a handle full time desk job. People don't understand because I don't "look" different. Some days I'm fine, and energetic, other's I'm barely dragging through the day.

    I couldn't imagine trying to record an album, shoot a movie or TV show, or in my case work on a line of clothes and runway etc... Unfortunately FMS weeds out people before they have a chance in some cases.

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  18. My husband is a musician. I feel so weak when I see the gruelling schedules they keep.
    I used to act, but my fluctuating energy and weight made me give it up. I can gain/lose up to 30 pounds in a matter of months without really trying. Just the difference between being bedridden or up and about. Which head shot do you use when you look like an ingenue one month and a dowager the next, lol? If I'm carrying extra weight, you can be sure that I'm in pain.

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  19. Even though we're all unlucky to have Fibro, I guess I'm one of the luckier ones in two senses. 1. I was literally diagnosed with it the first day I had the intense pain. I had been experiencing minor pain, horrible fatigue, joint pain, headaches, and sleep disturbances for a year or so before that, but I chocked it up to being 19 years old. One month before I turned 21, I had just started working at a call center and was still in training. Looking back on it, I can't believe I even managed to get myself into work that day. I basically collapsed in the bathroom because I just couldn't hold myself up anymore, the pain was too bad. I left, went to the doctor, and thats when I was told I had fibro, major depressive disorder, and generalized anxiety disorder. Naturally... they started treating me for the depression, and never attempted to treat me for the fibro, even though there's not fix-all treatment for it.
    In the second sense of why I'm sort of lucky, about 4 out of 7 days a week (sometimes more, sometimes less) I can still function fairly normally. Of course there is still pain, but I can manage it on those days. Unfortunately, as we all know, it's impossible to have a normal job when you don't know if you'll even be able to walk on any given day.

    Now the reason this is relevant is because I'm an aspiring actress. I was in the Twilight In Forks documentary (lame, I know), and I'm pushing myself really really hard to get into shape to audition for the next Hunger Games movie.
    When I was younger, I just wanted to act to get famous.
    Ever since I was diagnosed with the fibromyalgia and realized how few people even -try- to understand it (My family thinks I'm just lazy and don't want to work. Yeah. Right. Because I want to not be able to pay my bills.) I want to be able to give a voice to everyone who has it, and get the word out about what we're really going through.
    And also get the inside scoop about if there are like... crazy treatments celebrities have used that have helped a lot, and if so - campaign to make them more affordable and attainable to everyone else. We can't work, We can't get disability, and we can't get better... it's bullshit. And if they have some magic pill or shot that makes it tolerable, we deserve to have it.

    I'm not crazy. I know the chances of me making it in the industry are slim, and having fibro only reduces those chances even more, but I'm going to try as hard as I possibly can, because we deserve respect at the very very least.

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  20. There is a celebrity who is a spokesperson for Fibro...was even on the cover of NFA's ( National Fibromyalgia Association.) magazine...the first issue. It's A.J. Langer. She was on My So Called Life and on Private Practice this last season. She doesn't do a ton of acting gigs due to her Fibro. I think more celebs have it than what has been admitted. Approximately 6 million people have it in the U.S. So I doubt those are the only 4.

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  21. Finally a celebrity with Fibromyalgia not afraid to admit it!
    http://www.esquire.com/features/morgan-freeman-interview-0812-2

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  22. Susan Flannery,Sinead O'Conner,Michael James Hastings,Rosie Hamlin,Frances Winfield Bremer, Morgan Freeman, A.J Langer as far as my research goes

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  23. Thought you would like to know that Morgan Freeman just came out and announced that he has Fibromyalgia! Here is a link to the Esquire interview in which he did it:http://www.esquire.com/features/morgan-freeman-interview-0812

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