Why don't we hear any show buisness people

Discussion in 'Fibromyalgia Main Forum' started by debhun, Apr 22, 2007.

  1. debhun

    debhun New Member

    having FM or CFS. I not saying some one doesn't. But I have not heard of any one haveing to go thought what we do. Why? If there is would let let me know who? You hear every thing else happening to them but FM and CFS.
  2. Daisys

    Daisys Member

    I just bumped a thread from last year, about this very subject.

    It's titled 'We need a celebrity to help us out' or something close to that.
    [This Message was Edited on 04/22/2007]
  3. FibroPainSufferer

    FibroPainSufferer New Member

    Good Point!!! And I never thought about it but there has to be some celebrities with FM or CFS. I find it hard to believe that there isn’t!!!

    Maybe they are afraid to come out & tell people about it because of the way people treat US. We have doctors, family, friends, etc...telling us it’s all in our heads. They might be afraid of what it would do to their careers also. People might not hire them if they think they might not be able to work because of pain or fatigue.

    Then again, the celebrities never seem to have any problems with getting medicine. Look at Anna Nicole, she was on some 11 different medicines. I’m sure if they were diagnosed with either one, they would get the best medical treatment possible. Something that none of us could get because we are not celebrities!

    That’s just my guess.
  4. debhun

    debhun New Member

    Thank you a saw that and was reading some of it. I didn't know it was talked about before. But Don't you wish some one would come to our defense.
  5. Daisys

    Daisys Member

    Funny, one time right when the news was talking about Cher having her home renovated, I saw a post that I thought was maybe her. There's only the one post.

    I bumped the thread up. It's called Adrenal fatigue if you want to check it out.
  6. Juloo

    Juloo Member

    It takes a lot of energy to be a spokesperson. No doubt there are actors with this problem; however, think about how you feel when you are absolutely exhausted.

    People who see me, say they don't 'see' anything wrong with me...I tell them it's because I only am out where people can 'see' me when I have the energy to be there. There are very few people who know (less who understand) my other life...the one where I'm in bed sleeping, or counting out my multiple prescriptions, or soaking in a hot bath trying to sooth the pain.

    While I understand the draw of having a celebrity spokesperson, there's a part of it that is counter to what this disease is all about. Why should our family believe a celebrity more than they believe us? Half of me worries that seeing a celebrity -- all polished up and looking as usual -- might only make it worse. I can just see people pointing this out to me and saying, "See? They're out and campaigning for chronic fatigue on top of making movies. Must have been all the late nights, and parties. It can't be THAT bad...now WHY can't you come to work today?"

    It's about the same way I feel when People magazine runs another cover story about celebrity moms who work off the baby weight in only 4 weeks.

    While I wish for wider recognition and understanding, the last thing I want is for this to be the latest flavor of the month...forgotten when the celebrity's ads are off the air.
  7. roge

    roge Member

    I am not sure how good a spokes person Ms. oconnor would be though based on this

    direct quote from her from a magazine,

    <<[I also had] fibromyalgia, a chronic fatigue illness that painfully affects your muscles. When you get something like that it's a gift, actually, because you have to reassess your life. It's purely stress-related, so you have to get out of your life the things that are taking your energy.>>

    so while she has it or had it, she obviously doesnt have a good understanding of it saying it is "purley stress related", cmon just garbage. It may be stress related as in we cant deal with stresses like we were able to do prior to FM due to the biological underpinnings of this disease, but it is certainy not a purely stress related condition as she says. maybe she was misquoted , I hope so.


  8. roge

    roge Member

    I am not sure how good a spokes person Ms. oconnor would be though based on this

    direct quote from her from a magazine,

    <<[I also had] fibromyalgia, a chronic fatigue illness that painfully affects your muscles. When you get something like that it's a gift, actually, because you have to reassess your life. It's purely stress-related, so you have to get out of your life the things that are taking your energy.>>

    so while she has it or had it, she obviously doesnt have a good understanding of it saying it is "purley stress related", cmon just garbage. It may be stress related as in we cant deal with stresses like we were able to do prior to FM due to the biological underpinnings of this disease, but it is certainy not a purely stress related condition as she says. maybe she was misquoted , I hope so.


  9. Engel

    Engel New Member

    Hopefully we can do better than that ... lol. She is not known for being a good poster child.
  10. balletdancer74

    balletdancer74 New Member

    Cher, Stevie Nicks (same music publicist funny enough), Andre Watts the famous African American pianist (just saw him walking with an inverted foot on my street in NY a few weeks ago), the late Blake Edwards, Laura Hillenbrand (author of "Seabiscuit"), The Duchess of York (apparently), Michelle Akers (olumpic gold medalist soccer player)...have openly stated they have CFS/ME. Too bad they don't seem to mention it more than once or do anything about it except for Laura Hillenbrand...

    I understand the stigma, but when one is as famous as Cher, for example, she's already established her status. Everyone has his or her reason for not becoming a spokesperson or donating...maybe they are donating anonymously...wishful thinking...

    Who knows, but we definitely need a spokesperson with a good name...

    Best,
    LB32



  11. cct

    cct Member

    There are many stars and celbreties who have had CFS/FM.

    If you do a search on kholmes post dated 11/02/06 titled "A list of notable persons with CFS: some surprises here", you will find a long list of celebs.

    Another person that we can add to that list is Alana Hamilton Stewart (former Mrs. George Hamilton and also the former Mrs. Rod Stewart)!
    [This Message was Edited on 04/23/2007]
  12. zerped

    zerped New Member


    While Keith Jarrett may not be a household name, I have seen him mentioned a number of times as having CFS/ME. The onset of the disease for him started about the same time as mine, and I hear that he is beginning to perform live again. Anyone familiar with Jarrett's work knows how draining his performances can be. I'm not a world-famous jazz/New Age musician, but I've spent the majority of my life performing onstage and I'm still trying to get to the point where I can be in front of an audience for 30 minutes!

    Daryl Hall of Hall & Oates has/had? Lyme Disease. In reading Teri Garr and David Lander's writings about dealing with their MS, one is reminded that since the fields of acting and music are so competitive, no one wants to announce that they are limited in some way that may create inconveninece and added expense to the project; there are just too many talented people waiting in line with no "special needs."

    A fellow Portland writer, Floyd Smoot, has a new novel out, "Patient 002." Smoot has had several articles written about him and his CFS/ME. I'm trying now to contact him through friends we have in common. The novel is about a man with our disease who is part of a clinical study of a new medication. I'm curious to see what impact the novel could have on public opinion. If anyone gets the book, please give us a report!



  13. lurkernomore

    lurkernomore New Member

    It may be the fact that they fear casting directors will not choose them for future projects for fear of the unknown. We all know how difficult it is for us to even keep a doctor's appt. some days. But what if we had to commit to working a ten to twelve hour work day on a shoot. Could we answer that we could do that?

    There was an actress from the TV show, "Empty Nest," and I believe her name was Park Overall, or something close to that. Her photo was on the cover of Fibromyalgia Aware and I was ecstatic to see it as I thought that we finally had a name to put with our situation.

    Then I began reading her story and frankly, my heart sank. It was another one of those deals where she described how she just "pushed through the pain, ate the right foods, dieted and exercised and is much, much better now."

    I do not wish her suffering or pain. I don't wish ill will or anything. But if someone is going to represent us, I wish they would give full and accurate disclosure. She never mentioned that her career had suffered, that she had great pain and loss...none of the things that we have felt.

    So I don't know which does our problem greater harm. A big name celeb who will not admit that they have CFS and/or FM, or one who says they do...but it has not really impacted their life at all. It seems to be another "danged if ya do and danged if ya don't" type situations, you know?
  14. romanshopper

    romanshopper New Member

    I have a hard time believing that someone could have fibro and their life NOT be really impacted.

    Those are the diagnoses that I question.
  15. lca

    lca New Member

    You have GOT TO BE KIDDING!! Push through the pain? We certainly do not need comments like that. With May 12th rapidly approaching I hope to see something or anything on television, or in the newspaper. Last year I asked our local newspaper to print an informative article, as suggested by the National Fibromyalgia Association, and also a proclamation by the Mayor. Needless to say they did not print either one. Angry as I was, I followed up with a letter of my own to the editor full of facts and information that actually got printed. I had comments and phone calls thanking me for my article. Clearly, this is not enough though. I wish I knew what else to do, or how to raise awareness to the level of other causes. Just yesterday in the mail I received those free address labels for Cystic Fibrosis asking for a donation. Has Fibromyalgia ever done anything like that? Do we not get the recognition because we are only "in a bit of pain" and don't die from Fibromyalgia?
  16. lurkernomore

    lurkernomore New Member

    I just attempted to type a long response to your post because I was so upset to read the magazine interview with Park Overall. But then I got so long winded and the post became terribly rambling, so I did not click on post.

    But basically, in answer to your question as to what we can do to make people believe that fibro is as real as other health problems, it lies in education and tenacity.

    The problem is that we need to be heard and our voices grow very weak with fatigue and pain. But yes, May 12th is coming soon. So we could possibly do another letter writing campaign as has been done on the boards here before. Write letters to newspapers, wherever we can. What do you think?
  17. annaleeb

    annaleeb New Member

    If its a gift, then I sure as heck would have returned it pronto, right! Oh people just do not understand this, and other DD that cant been seen, like we say. I so wish people were more informed, would make lives for all of people like us, a bit easier.
  18. acer2000

    acer2000 New Member

    She had a CFS like condition that she spoke about in a rolling stone interview. She said she spent a year going from Dr. to Dr., and then found out she had mercury poisoning. However, her illness showed up after a major stress...