Advocacy letters pay off in increased recognition of CFS

Discussion in 'Fibromyalgia Main Forum' started by monkeykat, Dec 13, 2006.

  1. monkeykat

    monkeykat Member

    Hi everyone,

    After many years of no support or advocacy from family or friends besides my wonderful husband, one of my sisters has started to advocate for me and people with CFS this year.

    My sister emailed me yesterday and it was really touching and exciting to see the effects of her advocacy.

    Here is her email...
    "My church, Westminster Presbyterian, prayed for all those suffering from chronic diseases at church yesterday. Its the first time I've heard them publicly talk about people with chronic diseases. They mentioned, MS, Parkinson's and Chronic Fatigue. . .I was surprised AND happy!

    I'm thinking the emails that you send and I forward has had an effect! Anyway, I thought that was really cool. . ."

    It was really exciting that a church would mention CFS and list us with those with other severe chronic illnesses.

    ANYWAY, if all 1 MILLION of us with CFS convince one person of our suffering and cause them to advocate for us then we've affected 1 million others who will affect at least 1 million others or more:)

    Keep hope alive, Monkeykat

  2. mollystwin

    mollystwin New Member

    I'm glad the emails you send are doing some good! I send emails to family and friends and they appear to fall on deaf ears!!
  3. fight4acure

    fight4acure Member

    This is so true, but I find most people are afraid to speak up and mention CFS/FMS. I know I've advocated for a cure more than enough times. I just wish so many others would join in and do the same. It's the negative thought that it won't make a different that makes nothing happen. If people want things to stay the same and not have a cure help them to get better, then doing nothing works.

    Please, I pray that everyone looks at this and says, yes, we too can make a difference. There are so many ways to make your voice heard, and together, collectively, WE can make a difference!!!!
  4. monkeykat

    monkeykat Member

    Hi Mollystwin & fight4acure,

    Good to hear from you both!

    My emails fell on deaf ears for many years and still fall on deaf ears to most people but finally my sister really starting hearing what I was saying & started to show compassion.

    I guess my email is about NOT GIVING UP on letting people know what you are suffering even if they ignore or disregard it for many years.

    I completely agree with you Fight4ACure that we need to let go of our negative thoughts about not being able to make a difference!

    You are so right when you say, "There are so many ways to make your voice heard, and together, collectively, WE can make a difference!!!!"

    Keeping HOPE alive,
    Monkeykat


  5. mollystwin

    mollystwin New Member

    I had a really bad experience sharing an article with family and friends several weeks ago that made me think I would never share another article with anyone again.

    I had some "friends" at work who think I do this for attention and that I don't like working. I work part time. They think I don't really need my "special diet" for candida that I do it for attention. That if I "put my mind to it" I wouldn't be sick, that it's all in my mind.

    They don't believe in CFS or fibro at all, that I have a pyschological illness. These are people I've known for almost 20 years, who knew me when I wasn't sick and still they think this of me. I guess you just don't know who your friends are!

    But after reading your posts, I've changed my mind. I'm going to keep spreading the word no matter what people think. I'm just going to get thicker skin!!
  6. monkeykat

    monkeykat Member

    Hi,

    Fight4ACure - I love your analogy about most doctors & most governmental agencies being diabetic. Great analogy!!! Like the saying goes, "The squeeky wheel gets the grease". Sometimes we have to be willing to be squeeky.

    Problem is that it's stressful and ALL stress messes up my health so I'm not too good at being a squeeky wheel yet. I hope when my health improves enough that I am able to physically handle the emotional stress of not backing down and demanding to be heard! So right now I have to rely on othes to do that for me.

    Mollystwin - Thanks for sharing about your bad experience with your family & friends. I've had bad experiences too. I limit sending info to people who really want it now. That was my decision b/c it was less stress for me.

    I'm sorry about your friends at work. It's healing for you to share that b/c it's hard for me to believe that my family & friends who have known me all my life and KNOW what a hard worker I am could believe that I'm either LAZY or CRAZY now. I'm letting go of their opinions and those relationships and I'm starting to only let myself care about the opinions of those who really love me. It's a HUGE loss though when you find out who your REAL friends are. I'm still working on grieving a lot of that.

    Yes, we have to keep spreading the word as we are able. Do what you can but please take care of yourself and don't stress yourself out. Keep working on letting go of the opinions of others b/c they don't know sh_ _.

    It's good to get on here and realize that I share in the same suffering as so many others. Thanks so much for sharing with me!!!

    Keeping HOPE Alive,
    Monkeykat
  7. BILLCAMO

    BILLCAMO New Member

    The squeaky wheel of the CDC has finally started do a little more. They paid for an ad in the Ladies Home Journal. Chickadee has a thread about this and I'll bump it in hopes that more read it.

    Blessings ,

    b/c
  8. mezombie

    mezombie Member

    Advocacy really does pay off.

    I know for some it's impossible to do, and for some it's too stressful. That's OK. We are sick, after all.

    But for those who can, make your voices heard! It really is important, and the more of us that are heard, the bigger the impact.

    Thanks for posting this, Monkeycat!
  9. monkeykat

    monkeykat Member

    Hi BillCamo & Mezombie,
    Your welcome!

    To add a little humor to the thread. There's an old Irish saying that applies to all of us doing our part. You have to say it with an Irish accent...

    "Every little bit helps said the old woman as she pissed into the sea".

    Thanks for letting me know about Chickadee's thread. I'll look for it and bump it as well!

    Keeping HOPE Alive,
    Monkeykat