dealing withpeople who don't understand u r sick

Discussion in 'Fibromyalgia Main Forum' started by gbean, Jul 3, 2003.

  1. gbean

    gbean New Member

    Hi folks,
    i know that some don't like to talk of this because it isn't a positive subject-but I was wondering how u all deal with people (which I find to be most) who just don't get that u r sick. I've lost friends and family members who just didn't get that I was sick. Usually I do pretty well and actually don't get too down even being mostly a hermit-however, while on the phone with a friend I tried to tell her of my doctor's appointment and she told me "you told me about that already." Very matter of factly. The truth is that I told her I'd be having an appointment and never had told her how it went and such. This really hurt my feelings. I know it seems so minor but I would have asked her how an appointment with. Now I'm obsessing over it when she is fine in her little world. I just can't get over how people can be so insensitive. I try to tell myself that the person doesn't mean anything by it-and it is just their personality but it still hurts. Anyhow, I just needed to vent. I'm sorry to those who think I'm being negative.
  2. PrsJah

    PrsJah New Member

    I live with that every day. With out even thinking I'll tell my husband oh my leg hurts today, oh I don't feel good, oh I'm about to have a hypoglycemic attack (which I am this very second aarrghhh) and he'll either 1)ignore me or 2) roll his eyes. He wants me to get a job on top of it. An evening and weekend job. Ok...that's when I am the most exhausted. PPuuuuleeesssee!!!! I wake up exhausted becuase i toss and turn all night. I can't sleep on my sides now it makes my shoulders feel like a metal rod is being jamed down the middle of my joint. Yikes! So....I've learned just to ignore him and say what I want. If my leg hurts I tell him. SOmehow, even though I know he don't care, just saying it makes me feel a little better!
  3. smilemona

    smilemona New Member

    Hi GBean,

    From what you wrote, it doesn't sound like your friend doesn't understand that you're sick. She just told you that she thought she'd already heard the story you were telling about your appointment.

    It sounds like from that point, you had the thought that she didn't care about you/understand you.

    If you really wanted to share the part about your appointment, maybe you could tell her: Well, I remember telling you that I was going to go to an appt. and now that I've gone, I'd like to tell you how it went. What do you think about that?

    Then, you've taken care of yourself by being clear about what you want from her...and then she can tell you what she thinks about listening to your story. If she says she'd like to hear it, tell her. If she says she doesn't want to hear it, just hear her literally. She doesn't want to hear it...and it doesn't have to be personal. She's just doesn't want to hear a story about a doctor appointment. Have there ever been things in your life that you haven't wanted to hear about? Things on the news maybe? Gossip in the workplace? Sometimes we just don't want to hear something...and the reason isn't personal. When we can hear our friends literally, we can really care about and understand them!

    And if she doesn't want to hear can come here and tell your experience with the doctor, right? You could write in a journal so that youre experiences are *heard*. Were you looking for something else from your friend when you wanted to tell her about it? Sympathy? Compassion? etc?

    How about writing your experience at the doctor and then mailing it to yourself and reading about it..then writing back to yourself from a sympathetic, compassionate perspective (or whatever it is you think you would have liked your friend to do.) It could be fun!

    I really know the feeling of wanting my friends to understand, listen and relate to what I'm going through. What I've realized is that when they don't listen, I've been spared! I don't want to share my story with someone who isn't interested in listening. So if they don't want to listen, good! I'm glad they'll go do something else that they want to do...and I'm glad I'll go do what I want to do...which is find someone to share my story/experience with. Everyone gets what he/she wants.

    If you'd like to share your experience with me, you're welcome to.[This Message was Edited on 07/30/2003]
  4. twin2

    twin2 New Member

    My husband just doesn't get it. No matter how much I try to explain it to him, I can't get thru. In his defense, he tries but I think you have to experience it to REALLY understand. So, I take a deep breath and try to let it go. Then, I call my sister! Poor thing has to listen to my complaining quite a bit. I don't know what I'd do without her! It helps to have a compassionate person to vent to.

  5. klutzo

    klutzo New Member

    Many people are afraid of illness. When they look at you, they are constantly reminded that it could be them getting that sick, and they are afraid they could not handle it. Only the strongest ones can handle it. It stinks, but that's how it is. If you spend all your energy trying to shore up these weak ones, you won't have energy left to make yourself better. I made this mistake early on, and it took me years to correct it. I need every ounce of energy I can muster to fight this thing. Now, if you are not with me, you're against me, so goodbye and don't let the door hit you on the way out.
  6. nacl4y

    nacl4y New Member

    I have the most understanding family and SO I could ask for. But even they don't quite "get it". If I'm feeling ill, or am suddenly more tired than normal... I'm asked why. If my pain is noticeably unbearable, I'm asked why.

    My response, if I'm capable of speaking... is "if I knew why, I'd be a freakin millionaire." LOL

    The fact of the matter is I don't discuss my illness with my friends AT ALL. Never. In the 15 years I've been ill, I've become incredibly good at hiding my fatigue, pain, etc. for long enough spurts of time that my friends know nothing or very little. They are vaguely aware that I have health issues - typically because of my periods of hospitalization for tests, etc. But I don't discuss it.

    For me, I figure why bother. I've never had great support from friends who knew about it in the past. And so I've learned not to expect support from people in the future. No self pity talking there. Just woke up to the facts. I've had a best friend for the past 12 years who couldn't even tell you what my "illness" was I'd bet.

    As for my SO, my parents and my brother - as I said, they are incredibly supportive. But I am not a complainer. In fact my SO tells me I don't complain enough. He's probably right. I grew up with a grandmother and mother who were the Queens of Complaint. I hated listening to it, and even my empathy and sympathy was short lived, despite understanding their issues... so I go overboard to NOT complain. And it's a shock to them when I do complain.

    Perhaps that makes me sound like a pessimist. But in reality my experience with friends is rather similar to my experience with doctors when it comes to this illness. Not great LOL I just found my own way to cope with it.

    Take care.

    Shannon L.
  7. hazygal

    hazygal New Member

    She isn't a real friend. A real friend would be there for you no matter what. I've got my family treating me like that and friends too. Actually i'm trying really hard not to be bitter about it. Guess what, if someone wants to judge you that is their problem not yours. I just don't think anyone who is really human here on the board can or will say to themselves let alone anyone else, "how negative" That is soooo judgemental because everyone here is hurting in one way or another. I've had my best friend point blank disc me publically and tell me not to go about self diagnosing myself. That would be okay for me if it was in my best interest, but it wasn't because you could tell I was exasserbating her to the point of disgust. That is when I realized, hey, with those dirty looks etc... I don't need that sort of a friend because she isn't a true friend. You can write me and talk to me anytime. If people don't want to hear negative talk, they shouldn't be in this message board. There is pos. talk and neg. talk I for one understand exactely how you feel. This is the place to vent to tell your story and (everyone here with me right?) and we are your friends. I for one would love to vent on doctors...

  8. gbean

    gbean New Member

    Hi all-
    I wish there was a way I could thank u all personally but just wanted to let you all know how much it means that you cared to share and talk to me.
    To AaaronK-I am so sorry to hear about the lyme disease diagnosis with your kids. I know how very difficult lyme is
    because I watched a friend suffer and get better with it-plus I had the diagnosis for awhile.
    To the folks who don't tell their friends they r sick at all -well, I don't know how u do it because if u r very ill it is a large part of your life. Since I don't work and can rarely leave the house I have to tell them the reason why is because I'm so sick otherwise they wouldn't understand.
    I also find that I am a very sensitive person and feeling bad all the time just mkes me more sensitive. I think that people should have to take classes on empathy/sensitivity. I know that sounds arrogant but if more people were sensitive towards others the world would be a better place.
  9. hazygal

    hazygal New Member

    Hoped I spelled that right. Arogant... I think that is it, anyway, wanting someone to be and act human isn't arogant. If more people out there had some empathy, then can you imagine what a better place this world would be?
  10. Iggy_RN

    Iggy_RN New Member

    I never complain usually to my husband, because in the beginning he would get tired to hearing it. I never complain now, and in a strange way he seemed to realize the seriousness of this DD. He now asks me how I feel all the time, but I still say Im fine!!! I do not talk to any friends about it or family. What I have noticed, is that your true friends and family will notice when you are not feeling well and they will bring it up. Then I will talk very lightly about it. When I told my sister when I was first dx she said ," well there are no tests to really prove that you have FM." nice huh? I am so sick of the attitude towards this DD I feel so fortunate just to talk to all of you guys!! I dont understand the stigma attached to this, but this is a very painful frustrating illness. Take care, God bless, Iggy
  11. horsegal

    horsegal New Member

    Reading all these things made me realize....I have very few friends or people that understand...I've made a pact with myself not to mention how I feel at school next year. I don't care if I'm half dead-----I won't say a thing! People just don't get it. I look a lot better, 'cause I AM feeling better now......My doc let me down today, so I'm not sure how I will continue coping. I have an appt. later in the month. Hope she comes to her senses. Anyway, there was some good advice in this thread. I especially like the "no pity" attitude.........even tho at times I'd like some. "No rest for the wicked"

    Knowing how you feel! (that's why I come HERE!)
  12. IntuneJune

    IntuneJune New Member

    If the table was turned and it was my husband and I NEVER had FMS, I wonder if I could REALLY understand. He is not a big do-er around the house anyway, would I think he was using FMS for an excuse??? Any the things we complain about!!!!! Only a place like this board can we be really comfortable knowing someone is not rolling their eyes.

    Sometimes I limp, its the only time coworkers will ask if I "hurt" myself. I used to talk about it there,but have learned not to.


  13. Ishy75

    Ishy75 New Member

    I know exactly how you all feel. Two days ago my brother sent me an email telling me I was selfish and that I only have myself to blame for this DD. (hmmm who made him a doctor!) I didn't choose this DD, it chose me. I tried educating him but maybe I should have used a really big stick n just beat him upside the head for a while. :eek:) My hubby is finally coming around though to it all, which I am thankful for. The irony of it all is that out of all the family and friends I am losing over this it's my children, ages 5 and 9, that seem to have more compassion and a better understanding and more willing to help then the adults in my life do. Thank God for my two little angels. Warm hugs.

  14. suexi

    suexi New Member

    I have lost a few friends because I guess they just don't know what to say so they say; You worry too much, don't dwell, You need to get out more (and then they give up on me because it's really hard to get out).

    I find that it hurts my feelings when they don't acknowledge me about Dr. appts., etc So you are not alone.

    I feel so alone lately. I basically only have 1 friend that I talk to about my problems and I feel that he must think that I am nothing but a worrier too. So I don't call him much. Same with my son. I guess I have been feeling so negative; with ssi, had to go to emergency for a pinched nerve in my back, and now they think I have an ulcer. Also frustrated because I am now trying a new supplement regiment and got a bad tummy ache. Feel like I am at the end of my ropes. Not to mention that the meds cost $230.00 (for the ulcer). Hell it seems like the money just keeps going and going. And from what I have been reading here it takes 1 to 2 years to get ssi? I barely applied in January. Thanks for letting me vent,

  15. Sunshyne1027

    Sunshyne1027 New Member

    With time and growing and changing, learning and etc.. You will most likely learn who are your freinds, who aren't. It takes time to adjust to it all.

    I just do not associate, like become close friends with those who do not. How can they understand fully.. Maybe its lack of or having compassion about it. I have learned to state my feelings, and not worry about if I am hurting theirs. I say to them, I need room to grow and I deserve loving and caring friends, and you are not one of them, you hurt my feelings by saying that, and I will not tolerate that. Click. If its on the phone. Shut the door to them, if its the front door. Or ask them to leave. It feels so good being able to state my feelings. I kept them bottled up far too long, and it ate me up on the inside.

    Therapy, counselling has helped alot too.

  16. sybil

    sybil New Member

    my partner does all the housework etc without any complaint.

    but my mum is the worse.she lives about 35 miles away and i can't travel,it makes me much worse,i only do it when i have to,doctors,consultants appointments etc.

    but when my mum hears i have travelled anywhere,even for medical reasons,she gets all sniffy and says,...'oh,i thought you couldn't leave the house'!!!!

    but that is my mum all over,she has always been a selfish cow,so i ignore her.she never makes the effort to visit me.

    also people who phone and say..'how are you today'..then seem very bored when i tell them how bad i feel.

    if they don't want to know,they shouldn't ask and i have told them that!

    i'm getting to a stage where i won't take any c..p from anyone!

  17. elaine_p

    elaine_p New Member

    is that sometimes people have stuff going on in their life. They're in pain, they had a fight with their SO, they're worried about a review at work, they're wondering how they're going to pay for whatever home maintenance project just came up. Or something.

    No one can be there for us 100%. Not even our parents. Unfortunately, the world isn't about us. ;-)

    For the people who say they don't tell people, that's their choice. I don't think I'm wired that way (my mom says I've always been a "sharer"), but if it works for you, great!

    And I agree that we don't need negative, non-supportive people in our lives. Heck, even if we were healthy we wouldn't need it!

    If you value someone's friendship you'll give them some slack. If they value yours, they'll give you some, too, and will try to be there for you.

    I'm sorry for all the people who've suffered so much. My family, thankfully, is as supportive as they can be--at least they *believe* me even if they don't "get" it. But I've lost lots of supposed friends (to top it off, I moved, and how can you build friendships when you can't get out and have to say "no" so often to the few people you do meet! Thank God I found this board!).