To tell or not to tell

Discussion in 'Fibromyalgia Main Forum' started by SayCheese, Nov 19, 2002.

  1. SayCheese

    SayCheese New Member

    Hello everyone,

    I want to tell people about the CFS and FMS because I've been ill for so many years and think this explains alot to them.(It did to me!)
    But I do fear the reactions they might give. I have diabetes (type I) also for almost twenty years now and I think they will give either alot of pity or they just don't understand (and might hurt me with their words).

    Before I do tell I'd like to hear some of your stories and hope I can learn from them.

    Thank you and regards,
    SayCheese

  2. SayCheese

    SayCheese New Member

    Hello everyone,

    I want to tell people about the CFS and FMS because I've been ill for so many years and think this explains alot to them.(It did to me!)
    But I do fear the reactions they might give. I have diabetes (type I) also for almost twenty years now and I think they will give either alot of pity or they just don't understand (and might hurt me with their words).

    Before I do tell I'd like to hear some of your stories and hope I can learn from them.

    Thank you and regards,
    SayCheese

  3. Ness

    Ness New Member

    I have found that telling people can be good and bad...Most of the people that I have told have heard of Fibro but really didn't know what it was....there are those that will be kind and those that think we are just weird. and that it is in our heads..but we know what we live with and that is all that matters. don't let the reaction of others get you down...

    There will always be those that just don't get it and no one will ever really understand unless they have lived with the DD themselves.

    All of us here know the truth about these painful and life changing DD's.....Remember all of us here UNDERSTAND!!!!

    Peace
    Ness
  4. phenom

    phenom New Member

    well thats my opinion anyway. i tell everyone - sometimes i don't give them all the details, because i know they won't be able to fully understand. i speak positively with a 'thats life' attitude and so far i haven't gotten many 'oh poor you' comments = thank god! hope that helps.

    phenom
  5. Newswoman

    Newswoman New Member

    It depends on the situation and who it is. I recently told my boss because the fatigue came back with a vengance, and I needed to telecommute for a while. On my previous job, I only told my supervisors, but I asked them not to tell anyone that I was leaving that job until I was gone. They didn't like that, but I didn't care. My health is my business, and if I feel that it's necesary to divulge that information I will.

    Never let anyone make you feel like they should know your business. If you're having a bad day, you're having a bad day. If you feel that someone needs to know, tell them. If you sense they're not going to be supportive...then they don't have the right to know.

    Even though I was only recently diagnosed, I know this will be a life-long dilema, and my decision to tell or not to tell will be on a case by case basis
  6. maleficent4310

    maleficent4310 New Member

    I reacently told my boss that I have fibro. I told her mostly because I will be working alot of hours for the holidays, and I just wanted her to be aware just incase I look tired or am taking extra meds at work. I have not worked more than 20hrs (and that is rare) in over 5 years now. I am not sure how my body is going to handle it. Now based on her reaction, I am afraid she is going to limit my hours to not wear my out. I have told her for the holiday, I want the hours at work, and my husband will just need to pick up the slack at home so I can rest. I just hope and pray she was listening. I would really like to have some money this year for the holidays. Other that that, most people I have told are supportive. I am in so many people's prayers, I might just be the most prayed for person in the country.
    God bless,
    Lisa
  7. kadywill

    kadywill New Member

    knows that I have had Lupus and/or??? (or WHATEVER...) for years and that, when I feel good, I'm a hoot and I LOVE life, but when I am down, I'm WAY down! This is ME and they all know it. I had to be honest from the get-go 'cause I was sick and tired so much. This is MY answer, but I truly understand why someone would keep it a secret because, back in 1974, my first husband and I were just teenagers and had our first child and suddenly I was afflicted with something nobody understood. I was known to be energetic and very active and never ill......when I became ill with varying symptoms, I was told a zillion different diagnoses and treatments and was made to feel that it was all psychological stemming from a pre-marital pregnancy and stress......WELL, could've been, I won't deny that, but it wasn't all in my head...I WAS sick! I hated feeling like I did. I was just a kid and I wanted to have fun; I just wasn't able to any longer. I thought it was just the pregnancy and I decided I would Never have another child if I got worse with each one! However, a few months later, I was pregnant again.......seems I had NO problem with fertility. Well, I was in the hospital with eclampsia and seizures during that pregnancy and was dx. with cancer of the cervix after he was born. I was 18. The rest is history that, I am sure, you all have been through. I have had years during which I have adamantly refused to take meds or see a doctor~~~DENIAL and symptoms progressively got worse. I still do this, or at least up to a couple of months ago, I did. I am validated now~~~ there is proof that I have been in severe pain, but WHY does it have to get this bad before we are heard. WHY???? This really burns my hiney as I am not fond of being thought of as a hypochondriac/liar, are you????
    Anyway, support is available for us and knowledge is key so that we don't make unwise choices. I have in the past. I took Prednisone for 27 years; sometimes VERY large doses and this MAY very be why my bones are crap and my kidneys and liver are shot~~~well-meaning doctors thought it was best at the time and now I wonder. Be smart.....talk to those you trust and keep to yourself what is unwise to be shared. We can talk to one another here~~it is a safe place to do so.
    Love and much empathy,
    Kady
    [This Message was Edited on 11/20/2002]
  8. twjen

    twjen New Member

    If anyone questions you, say it, and leave it at that.
    If they wish to be so informed about your personal life, let others study themselves. I would not take the time to explain to anyone other than close family that I know really cares. Others may just be nosey and can figure it out for themselves. I have found that even with the problems I have other than fibro. that can be "proven" with med. tests. that some people are still jerks. Had a lady at work tell me "some people are just so sensitive" I dont care though, she is no one to me. My brother says some people are just so boring that they have to get in others business without invitation. He's right! If someone questions you that isnt a close friend, ignore them, they dont need any answers to what is none of their business.
  9. lucky

    lucky New Member

    those people who are mostly shying away from the subject when CFS/FMS is mentioned. I made the decision, if right or wrong, for my own peace of mind. Mostly, I just mentioned nicely that this probably is a subject they do not like to hear, but I just would like to clear the air that CFS/FMS are real illnesses and would like to clear the air for any misunderstandings. It was not easy, but it helped - and over the years, in my case it was only of benefit that I let a lot of people know that I am ill with CFS/FMS.
    But, we are all different, and I also feel the more you mention these illnesses, that they are real and not in your head, at the same time people slowly start to listen because they have heard it somewhere else before.
    Kind Regards, Lucky
  10. fibolady

    fibolady New Member

    but for right now i wish i would have never told the first person after my rheum diagnoised me. it has been rolled eyes, no support, and the end of my 23 year marriage. you could say i am a little sour right now.

    i don't understand how so many people can be afflicted with something and still get the "trash can" treatment, even from doctors and their own family.

    i now will tell people i have an autoimmune problem and arthritis and leave it at that.

    warm regards, fibolady

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