social issues of FMS

Discussion in 'Fibromyalgia Main Forum' started by BethM, Sep 16, 2002.

  1. BethM

    BethM New Member

    We went out with friends on Saturday evening. One of the group doesn't know us well, and seemed to want to give me all sorts of advice to heal me. sigh. Saturday was not one of my better days, (still not a better day, *#*# PMS) and I had some problems with carrying things, and walking very far, and climbing stairs, and with sitting on a blanket on the grass in the park to eat supper, (did bring a little camp chair, though) and etc. I get so tired of explaining why I am as I am to people. I'm thinking of getting some of the good pamphlets on FMS to carry around and just hand out. Tell them to read it and then ask questions if they need to. I don't like being seen as disabled or unable to do things, and generally do pretty well, but Saturday was difficult.

    Any suggestions on how to handle people who either mean well and tell me what I should be doing, or are less than kind in there behaviour toward me? I really hate having supper conversation focus on Beth And Her Ailments. There are many far more interesting things to talk about.

    Peace,
    Beth.
  2. BethM

    BethM New Member

    We went out with friends on Saturday evening. One of the group doesn't know us well, and seemed to want to give me all sorts of advice to heal me. sigh. Saturday was not one of my better days, (still not a better day, *#*# PMS) and I had some problems with carrying things, and walking very far, and climbing stairs, and with sitting on a blanket on the grass in the park to eat supper, (did bring a little camp chair, though) and etc. I get so tired of explaining why I am as I am to people. I'm thinking of getting some of the good pamphlets on FMS to carry around and just hand out. Tell them to read it and then ask questions if they need to. I don't like being seen as disabled or unable to do things, and generally do pretty well, but Saturday was difficult.

    Any suggestions on how to handle people who either mean well and tell me what I should be doing, or are less than kind in there behaviour toward me? I really hate having supper conversation focus on Beth And Her Ailments. There are many far more interesting things to talk about.

    Peace,
    Beth.
  3. brenbrat

    brenbrat New Member

    Beth

    When my husband and I go out, I never talk about it unless someone brings up how I am feeling. Do talk about other things. If they give advice(that you already know) just thank them for the input but that you are keeping up with this with your support group on line and reading material. If they want to know more about it, give them the web site.

    They shouldn't be giving advice on something they know nothing about.

    brenbrat
  4. Shirl

    Shirl New Member

    I simply avoid telling anyone that I don't have too much contact with anything concerning my health.

    Sometimes the less said the better for us. Half don't believe you, and the other half who want to help, just drive me up the wall with all their suggestions when they have no idea what I am living with.Especially those who tell you to exercise!

    As for social gatherings, my husband and I found that just saying I have a 'bad back' is sufficent! That way we don't have to go through the whole routine of trying to give people a crash course in FM/CFS on the spot!

    You could hand out the pamphlets, then you would be obligated to fill in the blanks for people. They are sure not going to read a book on a syndrome they don't have.

    I did give books to my children, and they did read them. So I have that part covered pretty much. As for friends, well I don't socialize too much anymore, it takes way too much energy.

    Others will tell you their way of coping with people too.

    Its not easy no matter what you do. Most people just don't understand.


    Shalom, Shirl

  5. ladydi

    ladydi New Member


    Another issue is what do my children tell their friends
    when they know I,m no longer working?

    Most of the time I just say I have a bad back and that's
    pretty much all it takes for kids.
    Now adults are different.

    The checker at the grocery store told me yesterday:
    "YOU SURE LOOK TIRED" Well, I just said I was, and left
    it at that. I would like to have some really funny
    "come-backs" for people like that.

    If anyone knows a good line to say when people tell you
    "you look sick" or "you look tired" let me know.

    I don't want to sound ugly but it does make you feel
    worse to be reminded of how you feel.

    Take Care,
    LadyDi
  6. Copper2002

    Copper2002 New Member

    Hi Beth,

    I'm with the other ladies here, the less information you give, the better.

    Once every couple of years, I attend an huge outdoor art show here in town. I always run in to someone I haven't seen for a long time. I use a cane, and sometimes braces for knee and ankle, so problems are obvious and lead to questions. I respond with, "I have an auto-immune disorder." This is USUALLY sufficient to halt the questions (peoples imaginations, and ignorance, are phenomenol! If they ask more, you might tell them you're dying, and generally, they DON'T want to know this, teehee) If they persist, I simply tell them I'm here to have a good time, so c'ya later, and walk away, or turn to another in the group and start a NEW line of conversation. If they STILL persist, I totally enjoy being politely rude. ;p

    Sometimes, the well intentioned 'healer' is more difficult to deal with than those in denial.

    Good luck!
    Copper
    Let Miracles Replace all Grievances
  7. kadywill

    kadywill New Member

    I hear this a lot...."Oh, Kady, you're back on your Prednisone again...I can always tell by how swollen you get!" What's so bad is that I am NOT on my Prednisone! I'd love a good comeback for this one, too!
  8. fibolady

    fibolady New Member

    i don't think 99% of the people out there or even the doctors realize how isolating our disease is and the social problems we deal with. it is very frustrating to say the least. i even started couseling, but have not found it much help. he thinks i should get out and do more for other people to solve the problem. after that session i just realized how much "they" don't get it.

    i have dwindled my social circle to nearly non exsistent. i know this is not an upbeat post, and thought hard about it, but like shirl, the truth is some of us can handle the stress of being able to handle all the goes along with obligations, etc. and some not. it is not that i didn't try. for 15 years i went out of my way to make social friends, do social things, extend invitations. then when i was unable to be the one doing the extending, well, my social life ended. that was really hard to deal with, seems those friends didn't have time for someone with such problems.

    i like the idea of referring to the problem as "bad back" whenever i mention fms i always get some stupid reply that hurts my feelings for days. the last one was, oh so and so has it but i think she just likes to get attention. can you believe someone said that to me.

    sorry for rambling, but you have brought up a very good subject and i hope lots reply!!!!!!

    so now i only do what i want to do, when i want to do it. sound selfish! yes, and guess what, no one else cared or cares now, so why not!!! of course i always put my family (not extended) first, like any mom.

    i bet some of you think, well, she needs to go back to counseling!!!!!!!!!!!!!!!!!! find me a good counselor that really understands the fms and cfs. the best advise i have found has been on this board!! and it is free and i enjoy spending time here and don't have to stress myself out getting to the computer!

    warm regards, fibolay

  9. BethM

    BethM New Member

    and thank you all for them! The 'bad back' response is a good one, and is true, for that matter! I'll remember that.

    I, too, have been less social the past few years, and find I do miss the quiet company of friends at times. We've met some new people lately who are fun to be with and generally don't pressure me. That other person Saturday is not someone I usually socialize with. If our friends want to go do rowdy and noisy things, they just have to do them without me! I've never been a very social person anyway, and by the time I get home from work, I just want the company of spouse and dog. Sometimes I don't even answer the phone! (Am I bad, or what?? *g*) I've found that there are many things I don't have to do. Getting older (47)has its benefits.

    Peace,
    Beth.
  10. klutzo

    klutzo New Member

    ....by politely and with a smile asking them where they went to medical school. Same goes for that person in the post above who says that so-and-so has FMS, but "I think she just wants attention"....tell her you are impressed at her insight and did not realize she had a degree in psychology. Smile real big so she can't be sure if you are really sincere or not.
    People like that deserve what's coming to them. (you can tell I'm off my estrogen!)
    Klutzo
  11. dlizard

    dlizard New Member

    they say they get tired too.... when I say I have allergies.. they say they have allergies too... when I say something hurts.. theirs always hurts worse... does this sound familiar???? some people don't get it and never will. When I'm tired it ususally means exhausted! Allergies mean fever chills sinus troubles, when something hurts I have to clear outta d room ,, you guys know. Yes it;s the hardest thing and I do like most of you.... don't go or say "fine" and keep going... I'm less and less concernied about what other people think! Good luck!
  12. virgobuddy

    virgobuddy New Member

    Beth:
    I too was put in a situation I'd have chosen not to be in...had I had the choice. I only know that all I can do is choose how I deal with it. In my case, I said nothing, which was fairly easy to do since my quick-wit seems to be taking a lot of vacations lately!

    Hang in there, and keep posting!

    Yours in spirit,
    Annie
  13. BethM

    BethM New Member

    the 'one ups-manship game'. If someone needs to feel they are more tired, work harder, etc, etc, than me, then let them. Takes waaay too much energy for me to play that way. That person has a need for a spotlight, they can have it, and I will move on to someone who is more positive for me to talk to. I don't have the patience or energy to be around negative people. When there is an energy shortage, we need to conserve. (Gee, I could work for Edison! *g*)

    Peace,
    Beth.
  14. Copper2002

    Copper2002 New Member

    >>When there is an energy shortage, we need to conserve. (Gee, I could work for Edison! *g*)<<

    Well, it's OBVIOUS you don't have political aspirations! LOL!

    Klutzo, I LOVE your response! That's exactly what I meant by politely rude. You're a quick wit, though, never occured to me to have this be my FIRST response. hats off to you, dear heart!

    Copper
    Let Miracles Replace all Grievances