CFS and Stereotypes and Perceptions

Discussion in 'Fibromyalgia Main Forum' started by TeaBisqit, Nov 30, 2009.

  1. TeaBisqit

    TeaBisqit Member

    I just had someone post a horrible comment on one of my youtube vids that "this disease is so fake". Rather than try and explain or argue, I blocked the user. But it was such a hurtful comment for someone to leave. The amount of horrible suffering we go through and all the things we lose and the years of our lives and to have someone just sail on by and post that the disease is fake is just so awful. When is all of this ever going to change? When are people going to realize that CFIDS/ME is REAL and horribly debilitating? I just want to cry. I can't believe that after all these years and we finally had XMRV in the news and people are still saying we are faking it.
  2. isiselixir

    isiselixir New Member

    I totally understand how you feel. It isn't fair. There are other diseases that are similarly debilitating and because they can be fatal or terminal and they may be more common, they get more recognition. You will never hear someone say "cancer is so fake" or "AIDS is so fake." It just goes to show how little recognition we get even though we are suffering SO much.
  3. onset1990

    onset1990 Member

    But what's worse is they are speaking for all those people who say nothing but are thinking the same thing (to your face). I have a "friend" that does that. It's the silent judgment that gets me. The unspoken.
  4. wendysj

    wendysj New Member

    Hi TeaBisqit,

    I'm so sorry some ignorant person said that. You put yourself out there to help others and this is what you get in return? That's awful. I'm sure there are many, many people who are educated by your videos... Those are the people you have to keep in mind. You're couragous to do what you're doing.

    Little different but.... My brother is gay.
    He and I were talking yesterday and someone said to him "I don't believe in homosexuality." My brother looked at the woman and said "I'm standing in front of you and having a conversation with you. What do you mean you don't "BELIEVE" in it?" I thought that was hilarious!

    It's awful that we are as sick as we are and have to endure this kind of crap. I'm so sorry it upset you.

  5. slammed

    slammed Member

    the complications that arise from advanced stages of CFS/ME are too often fatal : heart issues, cancers, digestive failure, chronic inflamatory . . .all can be fatal, just at a slower pace.

    so those people who say "not fatal" are Wrong.
  6. quanked

    quanked Member

    I don't like the fact that there are ignorant insensitive people heaping these very things on others that are suffering or anyone else for that matter. Shame on them.

    Sadly, there are many, many people like that out our doors and sometimes right next to us whether they are ignorant and insensitive about CIFDS or any other disease, homosexuality, race, gender, or picking a president or anything else. I have seen more than one person embrace their own ignorance and insensitivity like these are badges of honor.

    XMRV and our diseases are important to us but beyond us and the medical and scientific community I doubt that this new information is being noticed by any others. I have no doubt that much of the medical community is ignorant of XMRV for so many reasons.

    The idea that CFIDS is a fake disease will be out there for some time to come. This is just the way it is no matter how much we do not like it.

    But take heart. Attitudes can change, even if slowly. I watched a documentary about transgendered individuals last night. One part covered attitudes in India about the "third sex". Apparently, India has recognized that there is a "third" sex for hundreds of years. India's name for them is "Hedra". In some ways this recognition is much more progressive than here--a so called developed and progressive nation. Historically, the Hedra, have been disenfranchised and mistreated in Indian society. One Hedra took it upon herself (?) to try to educate Indian society. She was able to develop and broadcast a tv show to this end. Now, in certain parts of India, and nowhere else in the world, forms asking one to make a choice in sex now offers 3 choices--male, female and what amounts to Hedra (but the word identifying self as a Hedra is a different word--cannot remember). That is definitely attitude change!