do most friends/family know you're sick???

Discussion in 'Fibromyalgia Main Forum' started by babyk902, May 13, 2009.

  1. babyk902

    babyk902 New Member

    So many of my friends and even close family do NOT know that I have CFS..but of course there are a few that have been there since day 1 and know that I'm extremely sick. I'm lucky to have a full-time job (with my father) and be able to function throughout the day, so I can pull off my CFS very well without getting too many questions asked.. when in reality I'm struggling every single day with tremendous fatigue and all of the other fun symptoms.

    Now that I think about it, even my boyfriends parents whom I am very close with do not know that I have CFS.. considering they're both doctors, I can only imagine what they would say when I tell them I have this "disease", so I just choose not to even go there.. some of my friends don't have a clue what I go through, because I have tried to go down that road before and they just dont understand.. They understand one day but then two weeks later when I can't go out and hang out, they end up getting mad about it. So why even bother??

    When I had the courage one day to talk about my CFS to one of my relatives, I first asked them if they knew what it was.. and her response was "I know it's caused by depression isn't it?" UGH. So I tried to explain it to her but instead of her understanding I think now she's pretty sure I'm some sort of hypochondriac... fabulous.

    I was just wondering if you even bother telling people that you're really sick or don't even try to? I mean why bother, if they don't understand it then what's the point? I try to act like my life is as normal as possible anyway, sometimes I think its better to not even acknowledge it, but then sometimes I feel like people have a completely wrong perception of who I really am.. I'm 23 and CFS is part of my life.. its part of who i am now..

  2. 3gs

    3gs New Member


    I tell people even if they don't get it. If you had cancer would you not tell them? If we continue to stay silent this dd wins again. Don't get me wrong-totally understand most people don't get it and that is a struggle.

    There are some great articles that help explain it. At some point you will need to tell your dad. Help educate doctors! Does your dad not believe CFS is real? Even the CDC is starting to recognize it. go to

    At some point(maybe now?)your body is going to say stop working.
    Alot of us struggle with family and friends understanding but if you dont tell them whats going on how can they? Maybe they will surprise you.

    [This Message was Edited on 05/13/2009]
  3. mujuer

    mujuer New Member


    Google "the spoon theory" and you will find a great letter to hand out to friends and family. I am very careful now whom I tell that I have fibro. People who do find out are always trying to tell me to try this or that. They give me articles on fibro. I have been there, done that. I know they are trying to be helpful but nobody understands completely unless they have it.

    Yesterday was FM/CFS awareness day and I didn't one thing on national tv that mentioned it. Not even a Lyrica commercial. P
  4. jinlee

    jinlee Member

    Well, evidently not because they think I look so good!

    I have told very few people over the last 30 years that I am sick. Now I am so sick that people have been asking why "I am not working" and why do I .....insert whatever problem I am having that day....

    I hid how sick I am from my son for many years. I didn't want to be the "sick" mother who had a condition that docs said was "all in my head." Thirty-some years ago that was the common diagnosis.

    So now I don't even use the words FM/ CFS or anything controversial. I just say what my internal medicine doc puts on my paperwork. That is enough to satisfy everyone that "I am really sick with a true illness."

    So sad that we can't be validated for a real disease condition that takes it toll just like cancer or MS or whatever. It is awful to have to feel one has to hide under a fake name or be considered "lazy or crazy."

    I know I am neither and no one on this board is either.

    The best thing I have found is to have copies of easy to understand info about these DD and give to people who seem to want to understand. Some people don't really care but there are those who do and want to help.

    Great post.

  5. TigerLilea

    TigerLilea Active Member

    Family members know, and my close friends do. Most other people I don't bother telling because it is none of their business. Neighbours that I talk to on a regular basis know that I have a chronic illness with no known cure at the present time, however, that is as much as they know.

    JEANSKI New Member

    Everyone knows. I never "tell" anyone just for the sake of being revealing. It just comes up as it is a big part of my life and why I do or don't do certain things. I am matter of fact about it. Do people with diabetes hide it? Why should I? I teach by example. I have my bad days and not so bad days. They also know I have depression issues and am on meds. My family is very okay with it as they are sick also with fm, arthritis, depression, bipolar ETC. My coworkers know everything too and are quite nice about it, even helpful. I know that doesn't always happen. I have to think because I am so matter of fact and open to their questions that that helps.
  7. AuntTammie

    AuntTammie New Member

    I tell people, bc it's important to try to spread awareness and dispel misconceptions. I also tell people bc, honestly, it effects everything in my life, so there isn't really any way to hide it. I can't work, I can barely take care of myself, and I can hardly ever actually make plans to do things with anyone (and when I do, they have to be tentative, bc the likelihood I will have to cancel is very high) it's either tell them and hope that a few will still want to be a part of my life, or not tell them and have them think that I am unreliable or don't really want to see them, or something else along those lines. The only people I am really hesitant to tell are Drs, bc the responses can be so awful. I only tell them if it's absolutely essential. Otherwise, I just give them the relevant symptoms.
  8. AdirondackScarlet

    AdirondackScarlet New Member

    I was Dx FMS etc....back in 1982 ish but it's beleived I had childhood onset.
    Most folks don't / won't understand-
    some try some deny--most of us suffer alone
    and alienated- tho some are lucky to have family/friends support network.
    Very few even showed enough concern even to take the couple minutes to
    read " letter to normals".
    Most Drs don't understand it so how can I expect the general public to.
    Many JUDGE.
    Don't let it get to you , remember we are the PIONEERS in this illness.
    If someone says you seem sick alot, say I am sick-- but How much you tell
    is up to you. You might get stigmatized you might not.
    Good luck
  9. gb66

    gb66 Well-Known Member

    I have always told people that I have CFS and FM and have begun to regret it. I am glad my family knows but some others just don't get it and think I'm just neurotic or something. I am going to see a new doctor tomorrow, a general practice doc, and I am thinking of just telling her I have FM. Some doctors that I've had just look at me funny and don't comment. I know what that means !

    I have had this for 30 years and was diagnosed with FM in 1990. Since most people, including doctors, seem familar FM, I feel more comfortable saying it. I too believed that it was wrong to hide from the CFS label because it's a disease, but I am tired of the hassle.

    I would have never believed that all of these years later I would still be sick and still have people doubting this disease. I really don't understand why there's such a problem with it being accepted. It isn't because the name doesn't define the symptoms of the illness because most other diseases have vague names also or they're named for the one who discovers them.
  10. jasminetee

    jasminetee Member

    I think it depends on what the people around you are like. I had to laugh when I read the paragraph that ended with "fabulous" - you have a good sense of humor. :p

    That's how I feel about divulging my illness to others too. "Totally fabulous-" lol

    I do tell everyone now because I can no longer work. But when I could work I told only one friend that I could trust and I didn't elaborate or ever bring it up again.

    Now I'm out to educate the world but like I say, I cannot work. Some people out there are very understanding and supportive and I'm grateful to them. Some of the most understanding people who didn't know about it but wanted to learn more work at my local bike shop. :) You just never know. But most of my family and friends have only upset me.

    This is truly a personal decision. Unfortunately, in my life the majority of people are very negative towards me about it and I'm angry about it, but I'm working on forgiveness.


    [This Message was Edited on 05/13/2009]
  11. quanked

    quanked Member

    what I have to others when I do not even get it? I have tried but I do not go into it most of the time. For those who can explain it or for those that want to tell others go for it. Nobody has ever challenged me but I usually feel like they do not get what I am saying which leads me back to the notion that I really do not understand CFIDS or FM. I just know that I feel awful most of the time to varying degrees.

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