HELP!!!!! family is not understanding CFS FMS

Discussion in 'Fibromyalgia Main Forum' started by gladone, May 6, 2006.

  1. gladone

    gladone New Member

    Hello all,

    As I write this I am frustrated and hurt.

    To give you all a little back ground on me. I have just been told within the last 10 days that I have CFS/FMS/restless legs. I have been living with pain for years (7 to be exact). Then, one year ago I had a bad bout of shingle's (spelling). That's when my word changed.

    Today, me and mine had a family dinner (parent's, sibling's, spouses ect.). When I shared my newest health news no one seemed to care. I got the blow off.....the all in my head speech or the so what get over it and move on tone.

    My whole family (with the exception of my dear mother) seemed to think that since I look fine (healthy in there eye's) that my doc's must just be making something up to shut me up.

    How insulting is that!!!!! I consider my family to be very close and this was not the reaction I expected.

    Have any of you exprienced this? If so, how did you handle it?

    Thanks for letting me vent.....

    Gladone
    [This Message was Edited on 05/06/2006]
  2. Char412

    Char412 New Member

    Dear Glad,
    These people who don't understand what we are going through drive me crazy also. I would wish them one day in the Pain Hell that we go through and then they would shut their mouths and try to be a little more understanding. I go about my day, My way and do what I am able to do, what I can't I don't. When get togethers arise and I am not able to attend and they don't understand TOUGH COOKIES i HAVE TO DO WHAT IS BEST FOR ME. My Husband Understands and so do my kids because i have educated them by showing them articles in the magazines and newspapers. I was not looking for SYMPATHY JUST UNDERSTANDING. I found them to understand me a lot more when I had them do that. Not one of us wishes to be going through this and thank god for this site, cause we are not alone. God Bless you and Carry on, the Heck with those SMALL MINDED RELATIVES! DO WHAT IS BEST FOR YOU! Char412@aol.com
  3. findmind

    findmind New Member

    I think theirs a "letter to family/friends" on this site. Do a search by topic, think you'll find a lot of good stuff.

    Best to you,
    findmind
  4. mrsjethro

    mrsjethro New Member

    I'm having the same problem except that I have found that my best friend is really the only one that seems to understand my limitations and she doesn't understand, but accepts them without question. That has been the thread that I hang from or hang on to. I'm not really sure how to best put that into words. My diagnoses has been fairly recent also. I'm still working on the husband. He really doesn't have a clue and some days handles it better than others. I missed a few get togethers on his side of the family right after we married (2 yrs ago) and they thought I was stuck up and didn't want to be around them, even with explaining that I was in a great deal of pain. Of course I missed some of mine too, but they more readily seem to be learning and accepting that there are just some things that I can't do. I often talk to the one girlfriend I have that tries most to understand and she lets me vent, so go at it here too, because it has to be dealt with. You can't internalize it or it will have a negative effect on your condition. FM got such a bad rap as being a psychosomatic illness for such a long time that there are far too many people out there that still believe that it's all in our heads. It really can be attributed to lack of information or mis-information on their part. Up until recently (and with a great deal of printed information supplied by me from noted physicians and internet reseasrch) so did my doctor. Hang on the friends that provide acceptance, even if they understand it just yet. Validation has been a very important part of this for me. Unfortunately this is one of those times in life that I have learned who my true friends really are and it is going to require some education for the people that just don't understand. Some are worth the extra effort depending on my relationship with them, and some are entitled to their opinions, and that's just what they are..... "opinions". I choose to change the opinions of the ones that I can and accept the ones that I can do nothing about. (sort of like in the serenity prayer, and if you've never read the long version, now is a most appropriate time for it. please look it up) I'm learning rather quickly that some people can be really closed minded and hurtful, and no matter how hard I try, I cannot please everyone. Try to educate them and yourself with a few handouts, but don't overwhelm them with too much information at one time. It may just be that they don't yet understand and you may find that they are willing to learn. It may take some time, but hang in there. It does get better and the more you learn yourself, the easier it gets (or it has been for me)!!
  5. seabulls69

    seabulls69 New Member

    I got spanked by the webmaster for posting my website info even though I don't have a commercial site. (guess there's tattle-tales lurking) Turns out any website or email address posting is not permitted because, commercial or not, they will construe it that way, apparently.

    The good news is you can still find me by doing a search with my nickname. My site is a free, information only site with links to other sites... some commercial, some not. There's one in particular that I would recommend to anyone dealing with fibro or cfs... search for: dominie fibromyalgia. She has put together a plethora of info including suggestions on how to deal with family and friends. Visit my fibromyalgia section for suggestions on diet and supplements too.
  6. CanBrit

    CanBrit Member

    What a shame that your family is incapable of empathy. I think that's what you have going on there. God bless your mother, however, for having some.

    It's funny in my case. I come from a family, that when we were younger, were the type to say "Suck it up", if you were sick or hurt. You learned very quickly to muffle things. Now, my family is great. Lots of concern and understanding.

    HOWEVER, my husbands parents seem to view FM as an inconvenience to them. I have a great deal difficutly travelling for more than a few hours but my daughter was having our third grandson and I booked a week off to help her. She lives a six hour drive from us. My husband was just staying down the long weekend.

    His parents live 20 minutes from her, and my family 40. We arranged to see my family Saturday and Bob's parents Sunday. For the first hour we were at Bob's place, all we heard was digs about how we hadn't been down for 2 years.

    I finally said that if she were going to continue with them, I was quite happy to go back to my daughters. I also told them that between my illness and my husbands arthritis, it was impossible for us to come down for short weekends. We both work full time as well.

    Can you tell I'm exasperated. Anyway, she settled down and we had a nice evening after all. I think they're waiting for an invite up but neither of us wants to entertain that right now.

    All the best with your family. Hang on to your dear Mother. Maybe she can knock some sense into them or provide them with some information to read. Maybe your siblings are still very needy people?

    Regards,

    Eileen
  7. Marta608

    Marta608 Member

    Gladone, this is one of THE biggest frustrations with CFS/FM. Not only do people not "get it", but they often think it's all in your head. Steel yourself, dearheart.

    I've done it all: talked to them, given them information..... nothing. They ignore it, and me. I don't tell many other people for the same reason and when I do there is The Look. You'll get to know it.

    I do have one thing for you to think about though. Remember that you are not your illness. They still love you.

    Marta
  8. mrsjethro

    mrsjethro New Member

    bumping you back up for more answers.....
  9. gladone

    gladone New Member

    Thanks to all of you who have read my post and shed some light on the matter. Just having this site is going to be a blessing. Again thanks bunches.......Glad
  10. rockgor

    rockgor Well-Known Member

    Family and friends just don't understand.

    I come from a very dysfunctional family so I don't expect anything from my family.

    Part of the problem is the Readers' Digest syndrome. They constantly have articles on people w/ no legs who run the marathon. We are constantly told you can do anything you want to.

    This is not true, but a lot of people like to believe it.