How do you deal with people who don't understand...

Discussion in 'Fibromyalgia Main Forum' started by Peace77, Jul 16, 2008.

  1. Peace77

    Peace77 New Member

    the pain and CF? People make comments like with God's help you can do anything? Or they might know someone who has a mild case of FM/CF and compare you to them.
    Or here is one I resent too. "You will just have to force yourself.
    Or when you're in so much pain all you can do is lay on the couch with a heating pad and stretch as often as possible. They say you need to get out and walk. Sometimes more exercise makes the flare even worse. this happened to me this week. I had gone to the park and walked slowly about 1 hr. Then the next dy. I was sore but tried to loosen up more by walking slowly around my neighborhood. The next morning I was in a flare.
    How do you tell them that everyone with FM isn't the same, that there are mild to severe cases. And even each person can do more or less in different times of their life.
    How about when you're so tired you just can't get up early or get off the couch. They say you'll just have to force yourself, or you're being lazy.
    Or I can't take the heat and cold like others can. My body doesn't regulate extremes very well.

    Any help would be appreciated. Tell me what kind of comments you have heard and how you dealt with them. Greatly appreciative, Peace
  2. poets

    poets Member

    Boy does it aggravate me. Things like:

    The ever present "But you don't look sick."

    You'll get stiff sitting around all day. You need to exercise more.

    You aren't eating enough, that's why you're tired.

    I know....I ache when it rains.

    I forget things too.

    You're tired because you're not getting enough sleep. (duh)You need to go to bed earlier.

    And countless more that I can't remember at the moment.

    I've gotten to the point that I just say, "Unless you have this, there's no way you can comprehend it."

    People have NO idea. And unfortunately I don't see anyone really "getting it" in the near future.

    Hugs,
    Meg
  3. Peace77

    Peace77 New Member

    Yes I get that, you don't look sick. That's my father's favorite.
    Right now I was doing a little weeding and cutting down perennials that are past bloom and there are piles in my yard. My neighbor just cut my grass. So I felt compelled to do something, like take a pair of scissors and cut around the edge. If I don't clean up those piles tonight they will be thinking, "well we cut her grass and now she goes and ruines it by leaving piles in her yard. And I just got over a flare. Maybe need a couple more ultram, ugh,
    Thank you, Peace
  4. stumped

    stumped New Member

    I suggest they register on this site. I do not have FM. My daughter does. I am no doctor nor would I make suggestions to someone to do something that might cause more pain or frustration. My daughter has FM and I joined this site to be more informed of what people are going through and what has helped and not helped. To me... and this is only my opinion, "Ignorance is caused by lack of knowledge". I am new at this (yup..I'm ignorant)and I am glad you brought this up. Thank you Peace. I have learned more today. Just smile at ignorance and say "Gee thanx Doc". Take care of yourself and continue with your venture in finding a solution. Rick
  5. tandy

    tandy New Member

    don't even get me going!!
    I'm sick to death of the comments like you mentioned(I've heard em all,...and then some)

    Its so aggravating that we have no control over what our bodys are doing to us. and then its thrown in our face that we need this or we just need to do that.
    everyone has the answers right?

    I have'nt dealt well with the comments.
    sorry to say :(
    sometimes the rude comments go thru my brain over & over and I wonder,....How in the hell can people be so inconsiderate?? maybe they don't think before they speak?
    the comments are rude and hurtful .

    hugs, from someone who understands
    Tandy
  6. Janalynn

    Janalynn New Member

    I've been fairly lucky - haven't gotten too many insensitive comments. The ones I have gotten are from obviously uninformed people. My family has been incredibly supportive.
    My best friend however has made some comments that have cut to the bone.
    When I mentioned that my husband bought something at the grocery store - her comment was "do you go anywhere anymore????"

    When she called once and I was trying to rest and I called her back her first words before hello were "first of all, you lay down more than any person I know".

    Ouch. Those hurt. What's funny is this is a girl who goes to the Dr. more than anyone I know - always has something going on. I have to remind myself that I am more compassionate and empathetic than most people - always have been.

    I think what I would say to people who make 'stupid' comments is 'Until you've walked in my shoes, you'll never understand what it's like." or something like that or "I WISH _______ would make me all better, thanks for the advice". I have told a couple of people, who have a "cure", "Believe me, if there was a cure, I'm sure my Doctor and others would know about it and millions of people would not be suffering".

    People need education - that's usually where the remarks come from. No education and misinformation.
  7. kriket

    kriket New Member



    cut them right on out of your life. We dont need toxic people anyway.
  8. Peace77

    Peace77 New Member

    I am so impressed with everyone's comments. I'm going to compose a list of what each of you suggested because it might help someone else. Thank you all for your advice and I really enjoyed the posts and would still like to here others. I take this very seriously because there is a real guilt factor element to this dd. People like to make us feel guilty, and they'll succeed if we let them. But the more I'm empowered with a quick come back the less power they have over my feelings.

    Poet said - "Unless you have this, there's no way you can comprehend it."

    That is so true, I'll definitely use that comment.

    Stumped said - I suggest they register on this site.

    I will do that for sure. I commend you for learning everything you can about your daughter's syndrome, you're a rear breed. Clap, Clap.

    He also said - "Ignorance is caused by lack of knowledge".

    This is the heart of the matter. When I told my counselor everything that was involved with this disease she listened intently. Doesn't mean she stopped making comments. Then she said I was being lazy. I wish I had you alls comments then.

    Anchorholds said - "you don't have a clue".

    No they don't; I could say that.

    Anchorholds also said - Would you tell someone who had cancer or MS to force themselves?

    And, say OK next time you have a major flu or pneumonia, I'm going to come tell you to force yourself.

    These are excellent.

    Anchorholds - also said, Where they got the idea you can tell how sick someone is by how they look. I told one lady there are a lot of illnesses that don't show up in how someone looks--heart disease and autoimmune diseases are a couple of examples.

    That's great. How do you register pain. The dr. can't even tell by looking at you how much pain you're in.

    Anchorholds also said - If we could walk we would, sometimes it can make us sicker.

    So true. If I had a body like there's I'd be walking, jogging, yard work, you name it. What's their excuse for being out of shape. When I was normal I was always very fit, so I'm not a lazy person. I just got that the other day from my counselor too. Some counselor.

    Janalyn said - is 'Until you've walked in my shoes, you'll never understand what it's like."

    I'll definitely use that one, Thank you.

    She also said - I WISH _______ would make me all better, thanks for the advice".

    Super, Great One !

    And she said - "Believe me, if there was a cure, I'm sure my Doctor and others would know about it and millions of people would not be suffering".

    Watch out they don't throw lyrica in our face next, ha, ha. I truly appreciate all your advice and will print this message out to review and be ready when the attack comes, because it always does.

    And finally Kricket said - cut them right out of your life. We don't need toxic people anyway.

    I just had to let a potential boyfriend go for this reason. He didn't understand why I had to take Ultram for the pain.

    Thank you all very much, Now we can make a joke out of this and be prepared. I am definitely printing this out. Thank you so much,

    Peace
  9. Peace77

    Peace77 New Member

    Here's the list without people's names and without my comments in case anyone else can find it as useful as I do. Thank you again, Peace


    How to deal with people who don’t understand about FM

    "Unless you have this, there's no way you can comprehend it."

    I suggest they register on this site. http://www.immunesupport.com/chat/forums/message.cfm?id=1293684&B=FM

    "Ignorance is caused by lack of knowledge".

    "you don't have a clue".

    Would you tell someone who had cancer or MS to force themselves?

    OK next time you have a major flu or pneumonia, I'm going to come tell you to force yourself.

    Where they got the idea you can tell how sick someone is by how they look. I told one lady there are a lot of illnesses that don't show up in how someone looks--heart disease and autoimmune diseases are a couple of examples.

    If we could walk we would, sometimes it can make us sicker.

    'Until you've walked in my shoes, you'll never understand what it's like."

    I WISH _______ would make me all better, thanks for the advice".

    "Believe me, if there was a cure, I'm sure my Doctor and others would know about it and millions of people would not be suffering".

    cut them right out of your life. We don't need toxic people anyway.
  10. jasminetee

    jasminetee Member

    I added your comment idea to my Comeback Line list. I have a full on list that I read periodically to help me come up with the right things to say so I don't end up clamming up in shock at their rudeness and saying nothing. I'm afraid to open my mouth to them because I grew up with people who screamed and yelled and swore at me and each other in anger and that taught me that there was that way or silence. The problem is my silence is killing me now. Probably because I suffer badly 24/7 now so their comments just fill me with rage.

    I also feel like everything they're saying to me and all their dirty and disbelieving looks and mean tones they're doing to me is really doing it to all of us who suffer like this. It reminds me of how so many people with CFS and FMS say they are mistreated like this and that makes me even more enraged.

    I do cut people out like Kriket suggested. I learned about doing that from reading books about dealing with abuse and establishing boundaries.

    For the most part, I just stay away from almost everyone who can't get it.

    tee



    [This Message was Edited on 07/17/2008]
  11. Peace77

    Peace77 New Member

    Hi Teejkay and Jeerie thank you for responding to my question.

    Teejkay, having to deal with the demands of a 6 month old would be soooooooooo hard, I can't even imagine. All the lack of sleep and holding the baby would seem like a constant flare. I can see family being so ignorant about your condition too. I know you're doing all you can just to take care of yourself, the baby and your husband. Thank goodness for your supportive husband.

    It makes us just want to shut the whole world out at least a lot of them, like Jeerie said. Yes, I don't know anyone who truly understands except this MB.

    Sometimes like one of you said even others with this dd are higher functioning than we are and say things like, I put my hand on the part where I am hurting and ask God to heal me. And He does, but you have to believe.

    So now I have lack of faith. Believe me I've tried asking for a healing, but He apparently doesn't see fit to heal me right now.

    Oh Jeerie can you copy and paste some of the things you have as your arsenal as a come back for all these rude comments? Or paraphrase them, I'd be very interested.

    Peace
  12. Empower

    Empower New Member

    I like Stumped's response of "Gee thanx doc"

    You just have to realize that there is NO WAY people will understand unless they themselves have been through it

    For example, my sister in law had heel spurs and was complaining on how awful it was. And I thought to myself, "oh give me a break, how bad can it be, I HAVE FMS!"

    WELL, now, I believe I have heel spurs and let me tell you, the pain is tremdendous, like walking on glass or broken bones. So now, I understand that she wasn't whining or exaggerating

    Sometimes it is just better to smile widely at these people and say "uh huh"
  13. Peace77

    Peace77 New Member

    Thanks for pointing that out I miss that one, "Gee thanks Doc" that is hilarious. I'll use that too and write it down on my list of come backs.

    That's usually what I do just say "uh huh" and smile because I don't want confrontation or I figure it's better than "complaining" and that's what it is in their eyes is complaining and whining.

    Sometimes a quick uh huh just ends it right there. If you say how you really feel, they'll just say another one. Some people (most) just aren't worth it.

    Peace
  14. luv2float

    luv2float New Member

    what seems to have worked for me is when someone is hurt or sick i say:
    now, take your pain, multiply it by 10 and imagine it is over your entire body and you know it won't ever go away. that is what i feel like every single day!

    mostly they will comment: oh god, really!!

    it is not until they feel it for themselves that they truly can begin to understand.[This Message was Edited on 07/17/2008]
  15. jasminetee

    jasminetee Member

    it sounds like you're around some intelligent people.

    Peace- I think you meant someone else with the baby. I couldn't have kids as I got sick with CFS when I was 20.

    It's so nice to see all the support here. I just love this place. You guys and gals are the best. :)

    tee
  16. Peace77

    Peace77 New Member

    Sorry tee, it was the post before yours, Jeerie is the one with a 6 month old. Sorry to hear you couldn't have kids because of your CFS. Did drs. say you couldn't or was it that you would be so tired all the time? I know this is an immune disorder so did it have to do with that. So tee do you have FM too? I have both. Unlike you which must have been even more devastating, I didn't get the dd until I was 42. I'm so sorry you've suffered so long. I am now going on 49.

    I like what luv said and will add it to my arsenal. I'll have to wait for them to get sick. OMGosh!

    TY for understanding. I love the support I get here. I love this MB so much I'm getting addicted to it. LOL

    Peace
  17. texangal81

    texangal81 New Member

    My mom has been chronically ill and in pain for years and pushes herself every single day. But she doesn't have FMS/CFS, so she just doesn't understand the exhaustion aspect of the disease. She is pretty good about keeping her comments to herself but she does let a few slip at times.

    I also have problems with my ex-fiance. His sil has FM so I have to hear about what SHE does and how I need to do that. Whenever he calls and I'm resting in bed, he says "you have to get out of bed, staying in bed makes it worse". I've told him that I appreciate his concern but he simply does not understand this disease and he is going to have to accept the fact that I know what is best for me.

    I have a co-worker too who doesn't understand. He is a sweet guy and I really like him but he looks at me and I get the "you don't look sick" comment. I look back and tell him that even though I might not look like it or act like it, I am in pain every day. And some days the exhaustion is so bad that all I can do is watch movies at my desk and pray for a slow day.

    Of course, the worst is when you get this crap from doctors! They don't even understand the disease! So I do my best and use a one day at a time attitude. Somehow I manage to keep getting by.

  18. katiebug61

    katiebug61 New Member

    I have to agree that the ones that tell you, "you just have to force yourself" has to be the most aggravating. Every day I "force" myself to get out of bed and come to work. There is only so much you can force in one day.
    I just tell people that it is a day to day situation. I tell them that I WANT to have good days and I do NOT like hurting. Who in their right mind would choose to hurt like we do? I listen politely to all their "advice" and then go on. Many times I don't mention FM, because I am already having a bad day if and I hear the comment that FM is just a cop-out and isn't really a "real" disease, I would hurt them.
    Many times you will just have to smile and nod politely. Someday they may have one of the many symptoms we have and they might have a small inkling of what we go through.
    Hang in there peace and gentle hugs and a cyber-massage to you!
    Katiebug
  19. marti_zavala

    marti_zavala Member

    I don't say anything. I am too shocked and disappointed.

    But I have to say that it doesn't happen often, hardly at all.

    In my family - my sister has been dealing with this for years before me. My cousins all have FMS. My son sees me and he KNOWS what a hard worker I am (was).

    In my church- there is a woman with Lupus, a woman with MS, a woman with Mysathia Gravis (sp?), so I guess they paved the way before me.

    I don't go anywhere else. Sigh....

    Feeling lucky. Because I would have a hard time forgiving a close loved one for treating me like that.
    Marti
  20. pam112361

    pam112361 New Member

    Peace,

    I've been lucky that I don't get much flack from acquaintances. My problem is my husband. He's understanding when it's convenient and things are going his way. But when he's irritable and I'm not doing enough to help him around the house or being the "wife" I'm suppose to be, he gets angry.

    I've heard all of the same things that everyone else has and it's so frustrating because it's not like I lay around every day doing nothing. I get up between 4:00-4:30am to get ready for work, leave home at 6:00 to get to work at 7:15, work until 4:30, and then drive an hour home.

    For some odd reason, I'm totally exhausted and just want to sit down and relax when I get home. He, on the other hand, thinks I should go outside and walk and do stuff in the yard. I do feel guilty not being able to help him do things but the last thing I want to do is work more. So he either gets huffy and leaves the house or starts in with all of the things that I should do to make me feel better because he hurts too (blah blah blah) ..... !

    Sorry, I didn't mean to go into a total vent. It's just that it's putting a strain on our marriage and his words hurt more and more all of the time.

    I wish I could tell you that people will stop making stupid comments, but stupid comments come from stupid people.

    Gentle Hugs,
    Pam