Body Language around ones with CFIDS

Discussion in 'Fibromyalgia Main Forum' started by MonteCar, Jul 6, 2003.

  1. MonteCar

    MonteCar New Member



    I've had my disorder for quite some time now and since then I have had lots of time to realize the people and situations around me more than ever so I wanted to see if anyone else has seen the same. Ok, ever since the disorder has set in has anyone else around them noticed any bad body language from people who are around you family or not and get a bad vibe from them. I know that this shouldn't bother one but if someone gives you a bad vibe like as you are trying to bother them or something it really irritates me. Its not like we wish to be stuck in this living hell that we are contained in, its not like we have a choice or not. This is one of the most annoying thing I find with this disorder is that even trying to live life like it is normal is still wrong, I know that there is no answer but then again you can't live life right either. I don't know but it really p.o.'s me off when someone behaves like you are depressed when you are around them, they haven't a clue what is wrong with you and wouldn't care either, so which one is it. I worked for a few years full-time and attempted to have a social life doing things every weekend for years and I noticed how people behaved around me alot and it really got to me then but I couldn't help the situation any for I couldn't get any help for myself for having this thing. Its not like I was a downer or anything to anyone, if anything I was a hard-worker and a good friend to several individuals. My social life this year is in remission so its not near as bad as it was in years past, I'm also came to terms what has brought this all on, and I'm creating new positive memories now too. Anyways if anyone else knows what I am talking about I understand you too, it was really annoying and irritating and just something I had to turn away from then just get angry and make the situation worse. I guess in reality people just haven't a clue the "living hell" of this unless they want a little portion for themselves to try which I wouldn't recommend. I understand now how ugly this whole ordeal really is and don't blame people for their reactions but this situation isn't something that we ordered on a menu or something. I hope I was able to reach a noticeable characteristic with you.

    Kurt
  2. karenq

    karenq New Member

    Hi! I think I can identify with what you are talking about. I have only just recently begun telling people that I have FMS. I get some very positive helpful reactions and some not very positive reactions. I went to church last Sunday after not being able to go for about 6 weeks and I told a couple of friends I had been sick again and they just kind of said "Oh." and tried to ignore that statement as much as possible. It made me feel so bad that I didn't even attempt going to church today. However, I do have a couple of other friends at church who are very supportive and happy to see me when I'm there and who really listen when I say I've been feeling bad.

    I still haven't told a lot of people at work about my FMS. There are several people there who just don't seem to be too sensitive to this type of thing, so I don't think telling them would really help anything.

    At least my parents are somewhat supportive except when my dad gets into this mode that it is my dogs and/or the supplements I take that are causing this illness. He doesn't seem to get the fact that I started the supplements AFTER I got sick. And I go through long periods of time feeling better even with my dogs around.

    Anyway, maybe this is similar to what you are talking about.

    Bye.
    Karen
  3. victoria

    victoria New Member

    I've found that when I've briefly told people I haven't seen in a long while what's been going on with me (CFS), some have literally involuntarily taken a step or two backwards... and then tried to find an excuse or someone else to talk to asap.

    I think it's 'cause many don't know how to handle it appropriately, and I've been guilty of it myself when I was younger. In other words, ignorance and embarrassment at being ignorant.

    Others seems to act as if it's contagious however.

    It sure is a defining factor in who I am friendly with -- or not!

    Hope this helps, Victoria
  4. Jen F

    Jen F New Member

    I've had the same thing happen.

    Most people seem to think there is something wrong with you psychologically and I find most people don't want to know how you are doing, and that now includes my parents.

    When i tell a relatively young adult 20 - 30 yrs old, who has no health problems, they just don't get it.

    We need some TV commercials to push home the point of how many people are affected, that CFS and FM are physical diseases and that people who look great/well can still have health problems.
  5. MonteCar

    MonteCar New Member



    The people don't have a clue about your condition, they are pretty much strangers, its just their body language that they give you when you are around them. I'd imagine that we don't look pretty sitting in our situation when we are out and around people, I really haven't a idea of what I look like, I feel that I am in pain so I'm sure that I don't look too appealing when people look at me. I guess I just don't like the non-verbal body language that I get from people when I am around some of them. It makes me kind of mad when I see people reacting to my existence around them, I guess I'm sort of look like I'm suffering some, but I really can't help that, maybe they'd care to listen, probably not. Well its good to see that some of you understand what it is like, maybe we'll be out of the loop so to speak someday. Have a good one.

    Kurt